tag:blogger.com,1999:blog-11479862479442905192024-02-19T11:01:24.258+00:00Jessica's JourneyOne little girl, half a working heart and six years filled with love and laughterLouisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.comBlogger236125tag:blogger.com,1999:blog-1147986247944290519.post-78100504670708728632019-08-05T17:20:00.003+01:002019-08-05T17:20:29.501+01:00Investigation report and JoGLEing for Jessica We have now received the report from St Peter’s Chertsey after their investigation into the care that Jessica received there shortly before her death. They have concluded that Jessica’s care there was appropriate and acceptable and the cardiology team at Southampton were happy with the care that Jessica received and the decisions that were made. The only thing that might have been done differently would have been to transfer her back to Wexham Park instead of discharging her home as she was known to the medical staff there but they feel that this was unlikely to have made a difference to the outcome. The one area that was identified as needing improvement though was with regards to communication between the trusts involved in Jessica’s care as St Peters should have been informed of Jessica’s death at the time and not six months later. <br /><br /> <br /><br />The report did give us one new piece of information – that Jessica’s death was from viral pneumonia and was unlikely to have been caused by an arrhythmia. It doesn’t really explain why she collapsed so suddenly or the mysterious back pain that she complained of in those last few moments but we are resigned to the fact that we know all we are ever going to know and that the only explanation we have is simply that her heart could no longer cope with the viruses she had. It seems surreal that this is the last new piece of information we will have about Jessica.<br />
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<br /><br /> <br />Sixteen months on, how are we doing? In many ways this second year of loss has felt harder than the first. We miss Jessica so very much and the ache for one more moment feels unbearable at times. But we keep going as best we can. Sophie has enjoyed her first year of school and Thomas is now a year old and increasingly on the move - cruising around the furniture and full of smiles. He is very much like Jessica in temperament.<br />
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Since our last update, Jessica’s memorial has been put in place at her forever bed. We are so thankful to <a href="http://www.lillyfee.co.uk/" target="_blank">Lillyfee Woodcarving Studio</a> and the skill of their team at recreating Jessica with her Kerry doll. They captured her so beautifully and the level of detail is incredible. I can recognise exactly what outfit she is wearing and the way she is sitting and has her little plaits one forward, one back is so characteristic of her.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9SH5Dl3P-29fDVUaQK3pZeP_Ob0ZQalrn9s7nIYhGsoRHjwOYWzM1PUuYZKETI0IwhOajdlYojoFtNz8As-H6ZtyUx-Yd-m8zg6QkG5rhZSQE99MhR3EaEgBitpq_jC5jbYFjdwKupr8/s1600/Jessica-memorial-06.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica's memorial at her forever bed" border="0" data-original-height="700" data-original-width="525" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9SH5Dl3P-29fDVUaQK3pZeP_Ob0ZQalrn9s7nIYhGsoRHjwOYWzM1PUuYZKETI0IwhOajdlYojoFtNz8As-H6ZtyUx-Yd-m8zg6QkG5rhZSQE99MhR3EaEgBitpq_jC5jbYFjdwKupr8/s400/Jessica-memorial-06.jpg" title="" width="300" /></a></div>
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Jessica's school have also put up a memorial for her. We were invited to school along with some of Jessica's classmates to open her memorial and to write a memory of Jessica on a ribbon. These ribbons were then tied to a beautiful butterfly which is fixed to a wall in the school playground. There is an outdoor arts space dedicated to Jessica, which is very appropriate given her love of drawing, and her photo hangs in the school corridor. The mosaic butterflies which surround it were put together by her classmates and Sophie.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivO8TuY-ccopFWFP9Q978F3GfoWekU5oU84KzBFsoDcO22DlnTtRSsCfX_NCWVXlfj-lEHrF3fy6hyJ5tj32HseHNBSj_yw1iG5x4JROHq73duP-wDdbr0huzOSCrxcvjvlIrqSI8ZbLo/s1600/Jessica+blog+Aug-19+02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica's memorial surrounded by mosaic butterflies; cakes with pink butterflies; Jessica's butterfly with ribbons decorating it; a butterfly with "in loving memory of Jessica George. Fly high" on Jessica's easel; the outdoor art space in memory of Jessica" border="0" data-original-height="674" data-original-width="1000" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivO8TuY-ccopFWFP9Q978F3GfoWekU5oU84KzBFsoDcO22DlnTtRSsCfX_NCWVXlfj-lEHrF3fy6hyJ5tj32HseHNBSj_yw1iG5x4JROHq73duP-wDdbr0huzOSCrxcvjvlIrqSI8ZbLo/s400/Jessica+blog+Aug-19+02.jpg" title="" width="400" /></a></div>
<br /><br /> <br />Later this month, we will be travelling from John O’Groats to Land’s End by train and bus – our “JoGLE for Jessica” to raise money for Little Hearts Matter in memory of our beautiful big girl. We did this journey <a href="https://littleheartsbiglove.co.uk/category/lejog/" target="_blank">the other way round</a> three years ago with our girls and it was quite an adventure. No doubt it will be very bittersweet to do it again and it will certainly be challenging with a 12-month old in tow but hopefully we will have fun too!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV41oVjbK5o4YD4z0OdqshmjtIwn6Zhc_xJlQcHOVMJuL3kWSByeOXiQbjKh_fjwRqPh6wHBgvlb5WQFPG3CJaPafqI_6zm_dAPvLbztdOe31bCdLRASPIp5_MXShMA9MHFuMOIhj2Hos/s1600/JOGLE+for+Jessica+01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Me, hubby, Jessica and Sophie at John O'Groats" border="0" data-original-height="700" data-original-width="467" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV41oVjbK5o4YD4z0OdqshmjtIwn6Zhc_xJlQcHOVMJuL3kWSByeOXiQbjKh_fjwRqPh6wHBgvlb5WQFPG3CJaPafqI_6zm_dAPvLbztdOe31bCdLRASPIp5_MXShMA9MHFuMOIhj2Hos/s400/JOGLE+for+Jessica+01.jpg" title="" width="266" /></a></div>
<br /><br /> If you would like to support us and help us raise money for a fabulous charity that is very close to our hearts, you can do so via our <a href="https://www.justgiving.com/fundraising/jogleforjessica2019" target="_blank">JustGiving page</a>. <br /><br /> <br /><br />We’ll update again to let you know how we get on! <br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-29923241712758620552018-10-18T13:31:00.002+01:002018-10-18T13:32:59.875+01:00Six months onIt has been six months since <a href="http://jessica-thejourney.blogspot.com/2018/04/journeys-end.html" target="_blank">Jessica died</a>. Coming up to the six-month milestone has been a very emotional time for us all. We have had some of our hardest days since <a href="http://jessica-thejourney.blogspot.com/2018/05/jessicas-final-journey.html" target="_blank">Jessica’s funeral</a>. This year’s Little Hearts Matter <a href="https://littleheartsbiglove.co.uk/remembering-jessica-the-little-hearts-matter-memorial-walk-at-the-national-memorial-arboretum/" target="_blank">autumn memorial walk</a> took place on 13th October. It felt like an appropriate way to spend the half-anniversary of Jessica’s last day. Sophie enjoyed decorating paper hearts to hang on the LHM tree and planting bulbs around the bench. It was also lovely to hear how popular <a href="https://www.lhm.org.uk/information/publications-and-dvds/" target="_blank">Jessica’s heart operation books</a> have been and to know that her story is still helping others.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvEKz9NUrl5BnC5cHyz5QRscZsSMvE3-4AouuMU5rh4KpDJRqdL7PO8AIjK_rCl8uYjunD_EhwSgYPjpTKGsn1ZKt8StYFBrdU4DT_gt8GqpWJ6x3ZBpca2IBzF_tr0nAybA2qSJh3B8I/s1600/Jessica+18-10-18+01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Louise, Michael, Sophie and Thomas at the Little Hearts Matter tree in the National Memorial Arboretum" border="0" data-original-height="700" data-original-width="700" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvEKz9NUrl5BnC5cHyz5QRscZsSMvE3-4AouuMU5rh4KpDJRqdL7PO8AIjK_rCl8uYjunD_EhwSgYPjpTKGsn1ZKt8StYFBrdU4DT_gt8GqpWJ6x3ZBpca2IBzF_tr0nAybA2qSJh3B8I/s400/Jessica+18-10-18+01.jpg" title="" width="400" /></a></div>
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This morning, we received a letter from St Peter's hospital informing us that they are carrying out an investigation into the care Jessica received shortly before her death. This process is expected to take about four months. One of the many questions that we have asked ourselves since Jessica died is whether she would still be here had she not been discharged that day. Perhaps this is a question which may now be answered. The findings from the investigation won't bring Jessica back of course, but perhaps there are improvements in care which could be made as a result. <br />
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We have also spoken again to the team at Southampton and are hoping to meet again with them to discuss the findings of Jessica’s post-mortem. The information we received was very limited and we are hoping they can obtain a few more details. <br />
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Louise has continued to blog about life after Jessica and our grief journey over on <a href="https://littleheartsbiglove.co.uk/" target="_blank">her blog</a> and has found this helpful. Last week, her blog won a Brilliance in Blogging award in the Inspire category. <br />
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This weekend Louise's brothers and nephews are running the Great South Run in memory of Jessica and fundraising for <a href="https://www.lhm.org.uk/" target="_blank">Little Hearts Matter</a>. We will be going along to cheer them on. If you would like to support them, you can find their JustGiving page <a href="https://www.justgiving.com/fundraising/jessicagreatsouthrun2018" target="_blank">here</a>.<br />
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<br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-36430499631459301762018-09-06T20:56:00.000+01:002018-09-06T20:56:07.126+01:00Jessica's 7th birthday<!--[if gte mso 9]><xml>
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Heading"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Block Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Hyperlink"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="FollowedHyperlink"/>
<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Document Map"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Plain Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="E-mail Signature"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Top of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Bottom of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal (Web)"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Acronym"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Address"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Cite"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Code"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Definition"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Keyboard"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Preformatted"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Sample"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Typewriter"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Variable"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal Table"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="annotation subject"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="No List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Contemporary"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Elegant"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Professional"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Balloon Text"/>
<w:LsdException Locked="false" Priority="39" Name="Table Grid"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Theme"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" QFormat="true"
Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" QFormat="true"
Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" QFormat="true"
Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" QFormat="true"
Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 6"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 6"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="46" Name="List Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="List Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="List Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 6"/>
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<![endif]-->Today is Jessica’s 7th birthday and the 7th anniversary of her first open heart surgery. The first of our big girl’s birthdays without her. It has been a very emotional day, especially as it was also Sophie’s first day at school. Jessica would have been so proud that her little sister was going to school with her and so excited about it also being her birthday. <br /><br /> <br />Nanny and Auntie Loraynne came up for the day and we had a little birthday celebration for her at her forever bed at GreenAcres. I made her a “Kerry birthday cake” modelled on her favourite toy and Sophie blew out the candle as we sang Happy Birthday to Jessica. I am sure Jessica would have loved her cake. She adored her Kerry and she absolutely loved cake. "Cake" was one of the first words she <a href="https://www.youtube.com/watch?v=-AA4OSAmhgY" target="_blank">learned to sign</a> as a baby, along with more and please!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUcRc86vyArJLFzSZWqn0rrQSfME54B0GOnkUqfCoU8lLPyaKNMROq-HkdkhADqtL2RJyPRnwdLfMtED_3tfVLAABImeQmbWQTqvEU9azMdD06AexhxDQBu9WUs53xZy6IC4kgmuC-jt4/s1600/Jessica+blog+07-09-18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A photo of Jessica at GreenAcres with her "Kerry cake"" border="0" data-original-height="700" data-original-width="525" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUcRc86vyArJLFzSZWqn0rrQSfME54B0GOnkUqfCoU8lLPyaKNMROq-HkdkhADqtL2RJyPRnwdLfMtED_3tfVLAABImeQmbWQTqvEU9azMdD06AexhxDQBu9WUs53xZy6IC4kgmuC-jt4/s400/Jessica+blog+07-09-18.jpg" title="" width="300" /></a></div>
<br /><br /> <br />This first birthday has been a hard one. We miss our little girl so much and even more so on days like today. Thank you so much to everyone who has wished our beautiful girl a happy birthday today and those who have been keeping us in their thoughts and prayers.Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-32718973145724794702018-08-14T21:30:00.004+01:002018-08-14T21:30:49.220+01:00Four months onIt is four months today since Jessica died. Four months since our world was completely shattered by her sudden passing. Life has been such a rollercoaster over these past few months and especially so in the last couple of weeks with the <a href="https://littleheartsbiglove.co.uk/thomass-birth-story-a-planned-home-breech-birth/" target="_blank">arrival of baby Thomas</a>. Thomas’s arrival has brought us so much joy but many moments of sadness too that Jessica never got to meet him. She would have been so thrilled to be a big sister again, especially as she was hoping for a baby brother.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPn5qgMi65paV9NWUlnu6a_401i8ygBEilufU9EAufvAgjEK5HRRbgGXJoXmz5KYR9uNiYCMr93B496m78UfVnbC4_xtNhSa8AOgOrM4tMyI0B2AVT4Z6SKgs-sv-VQ_fgJU_bWXk7Zgk/s1600/Jessica+blog+07-08-18+01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Mummy, Daddy, Sophie and Thomas with Jessica's cushion" border="0" data-original-height="666" data-original-width="1000" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPn5qgMi65paV9NWUlnu6a_401i8ygBEilufU9EAufvAgjEK5HRRbgGXJoXmz5KYR9uNiYCMr93B496m78UfVnbC4_xtNhSa8AOgOrM4tMyI0B2AVT4Z6SKgs-sv-VQ_fgJU_bWXk7Zgk/s400/Jessica+blog+07-08-18+01.jpg" title="" width="400" /></a></div>
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We finally got the post-mortem results on the day Louise went into labour with Thomas. The cause of Jessica’s death was stated to be a congenital heart defect, with secondary factors being viral infections and liver changes (which would have been due to her Fontan circulation). None of these really explain why she passed away quite so suddenly though. We can rule out some of the things that we had wondered about, such as a blood clot or aneurysm. One of the possible explanations that we’re left with is that Jessica’s sudden cardiac arrest may have been caused by an arrhythmia. This is something that wouldn’t have been picked up on the post-mortem as it could only be detected while her heart was still beating. <br /><br /> <br /><br />Before we received the post-mortem results, we had a meeting with the A&E consultant who looked after Jessica on the night she died. We wanted to understand a little more about what happened the night she died – particularly as it looked like Jessica still had a heart beat when the paramedics arrived but that she didn’t have a shockable rhythm. We were told that although the monitor did pick up residual electrical activity, Jessica had no pulse when she arrived on A&E. Her heart had already stopped pumping at that point. <br /><br /> <br /><br />We received the results of the genetic tests a few days before the post-mortem results. These tests showed that Michael carries the <a href="http://jessica-thejourney.blogspot.com/2018/06/learning-little-about-jessicas-genetics.html" target="_blank">same deletion</a> that Jessica had and therefore this deletion had no significance with regards to either her heart condition or her death. <br /><br /> <br /><br />Now that we have the post-mortem results, we have been able to register Jessica’s death, which we did a few days after registering Thomas’s birth. We took Thomas to GreenAcres to visit his big sister for his first trip out. As you can imagine, it was a very emotional visit.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrbRcj0BOytwJ5G4mPmw0g3XCwWN9k922iVhyPHYaD6WsTYJx7dNnJAbrMvXx5o14BkdR8C1zwhJZEwBK7UbT868OjHAo3Brsipd5iT_RyZ5hAzE3g7_YC-ZiVBy6DAHFrbGfjDk4juSs/s1600/Jessica+blog+07-08-18+03.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Daddy, Sophie, Mummy and baby Thomas with Jessica's cushion at Jessica's forever bed" border="0" data-original-height="666" data-original-width="1000" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrbRcj0BOytwJ5G4mPmw0g3XCwWN9k922iVhyPHYaD6WsTYJx7dNnJAbrMvXx5o14BkdR8C1zwhJZEwBK7UbT868OjHAo3Brsipd5iT_RyZ5hAzE3g7_YC-ZiVBy6DAHFrbGfjDk4juSs/s400/Jessica+blog+07-08-18+03.jpg" title="" width="400" /></a></div>
<br /><br /> Sophie is enjoying being a big sister to Thomas. She is very loving with him and tells us that she loves her baby brother and is proud of him. She had a good role model when it came to how to be a big sister and it certainly seems like she is following in Jessica’s footsteps in that regard. We are sure that Jessica would have also been an amazing big sister to Thomas too. It makes us so sad that we will never get to see it though.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhqkZp7d6kHUbT4cVOD8j97ss7XGvwUaeEY3raTzHQ7CuDaXyMlIKFAJLk0vAzwijkIotJUbNJNOSu_DjRUIOBH3c8vq05t2BiDYUcYBEkFcjRUSQmsMUv_CZa1ucHRkQHXtmZZeEvlFA/s1600/Jessica+blog+07-08-18+02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Sophie and Thomas with Jessica's photo cushion in the background" border="0" data-original-height="700" data-original-width="525" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhqkZp7d6kHUbT4cVOD8j97ss7XGvwUaeEY3raTzHQ7CuDaXyMlIKFAJLk0vAzwijkIotJUbNJNOSu_DjRUIOBH3c8vq05t2BiDYUcYBEkFcjRUSQmsMUv_CZa1ucHRkQHXtmZZeEvlFA/s400/Jessica+blog+07-08-18+02.jpg" title="" width="300" /></a></div>
<br />We are hoping to meet with the team in Southampton at some point to discuss the post-mortem results and go through some of the questions we still have. We know that we are unlikely to get any more answers but I think it would still be helpful for us to have that discussion.Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-7487443510849540132018-06-18T14:29:00.001+01:002018-06-18T14:29:38.792+01:00Learning a little about Jessica’s geneticsWe had a phone call from Southampton a couple of weeks ago. They had been in contact with Dr Fowler, the pathologist, with regards to some genetic analysis that had been done on Jessica. This showed that Jessica had a small area missing from one of her chromosomes. <br /><br /> <br />Humans normally have 23 pairs of chromosomes in each of their cells. These pairs are numbered 1-22 in order of size, with the two sex chromosomes (XX for females and XY for males) making up the 23rd pair. One half of each pair is inherited from your mother and the other half is inherited from your father. The small area that Jessica was missing was on the short arm of one of the chromosomes in pair 11 and is called a 11p15.4 deletion.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiknbc8U1rfrUlSAybgvsDO5Euy7Ss-Di1RbJ_hfl-ahyqZy4QiUu-vRDJlde1uC3NGnVQWkRoBB-hz2bDs7AJrO1Fz0xjWCipmkDwhMp4SvG6FWvRnm-v2XvGlNlHry5A7yApJqJUXPvc/s1600/Chromosomes.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Normal human female chromosomes" border="0" data-original-height="750" data-original-width="1000" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiknbc8U1rfrUlSAybgvsDO5Euy7Ss-Di1RbJ_hfl-ahyqZy4QiUu-vRDJlde1uC3NGnVQWkRoBB-hz2bDs7AJrO1Fz0xjWCipmkDwhMp4SvG6FWvRnm-v2XvGlNlHry5A7yApJqJUXPvc/s400/Chromosomes.jpg" title="" width="400" /></a></div>
<br /> <br />Whilst it was unlikely that this deletion had any impact on what caused Jessica’s death, Michael and I were referred to the geneticist at Oxford for a blood test to see if either of us carry this mutation. As we hadn’t received an appointment for this when I went for my antenatal appointment last week, it was chased up by the obstetrician. It turns out that there is actually quite a long wait normally to see the geneticist but me being pregnant has helped significantly speed things up in this regard! This morning, we had an appointment at the John Radcliffe for the genetic test. <br /><br /> <br /><br />The geneticist doesn’t think that this very small deletion is significant either with regards to Jessica’s heart condition or her death. There is a rare neurological condition associated with the deletion but this only occurs in adulthood and the deletion would need to be on both chromosomes in the pair. Jessica would therefore have been a carrier for this condition. It is likely that she inherited this from one of us but it is highly unlikely that we both would carry this deletion. In terms of the post-mortem results, she feels that it is, in her words “a red herring”. <br /><br /> <br /><br />Our impression is that this test is being carried out just as part of gathering as much information as possible from Jessica’s tissue samples. We had our blood tests done this morning and it will take about six weeks before the results come back from these. This also means that we are unlikely to receive any results from Jessica’s post-mortem before this time as well. We don’t yet know if there have been any other results from the post-mortem which may shed any light as to what caused Jessica’s sudden death. We will update again when we know more. <br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-6528927042079430572018-05-19T14:30:00.000+01:002018-05-28T16:20:01.288+01:00Jessica's final journey<div class="separator" style="clear: both; text-align: center;">
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Yesterday’s celebration of Jessica’s life was everything that we wanted it to be for her. A beautiful sunshine day, surrounded by family, friends and love, sharing memories of a little girl who touched so many people’s hearts. It was a day of both sadness and smiles, laughter and tears and was a fitting tribute to our little miracle.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHEcUqtL9YB6vjWB5zbZRxnGww7-OZJV9kaUW8CvKRJfIvtbrd1riD-FZNyfFvlNMikTFxegbfHYWY1viK5oWvaxlbbjnUra6rPWV0dgpj6Qi5YLEOPu0qkwhofDo_N2TegG2vPwszqQc/s1600/Jessica+funeral+04.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Tissue paper flowers made by the Girls' Brigade" border="0" data-original-height="667" data-original-width="1000" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHEcUqtL9YB6vjWB5zbZRxnGww7-OZJV9kaUW8CvKRJfIvtbrd1riD-FZNyfFvlNMikTFxegbfHYWY1viK5oWvaxlbbjnUra6rPWV0dgpj6Qi5YLEOPu0qkwhofDo_N2TegG2vPwszqQc/s400/Jessica+funeral+04.jpg" title="" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo taken by Charlie Pugh</td></tr>
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We were able to spend some time with Jessica in the last couple of days before her funeral. Being able to sit with her, to hold her hand, look at her beautiful little face and give her kisses, to read some of her favourite stories to her and to tuck her in one last time with her Kerry snuggled next to her was such precious time. <br />
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Jessica arrived at our home for the last time at 12.30pm. The three of us, along with Jessica’s grandparents followed her to the church for the celebration of her life. The service was led by our minister Nick. Nick’s first service at our church was two days before Jessica was born. We are glad that he was able to lead her last service at church, having known her throughout her short life.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBNLhY4xhjU3-slRqf4mz3-vH3_0Ap8YNleWTuJN7mT1m-JiOp3MAeYEyySgr6oDWvq1n4-vB897DaNdmdzrkGOXYN3kbNNwfWJMZmyNK5wSrW_5005Zg3ktYO-oA2nHKNAYxFT0RHYek/s1600/Jessica+funeral+01.jpg" imageanchor="1"><img alt="Jessica's casket arriving at church" border="0" data-original-height="750" data-original-width="1000" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBNLhY4xhjU3-slRqf4mz3-vH3_0Ap8YNleWTuJN7mT1m-JiOp3MAeYEyySgr6oDWvq1n4-vB897DaNdmdzrkGOXYN3kbNNwfWJMZmyNK5wSrW_5005Zg3ktYO-oA2nHKNAYxFT0RHYek/s400/Jessica+funeral+01.jpg" title="" width="400" /></a></div>
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It was a beautiful <a href="https://littleheartsbiglove.co.uk/wp-content/uploads/2018/05/Order-of-service-for-the-celebration-of-Jessicas-life.pdf" target="_blank">service</a>. Jessica’s godparents Bryan and Nicki shared our chosen Bible readings. Michael and I shared our memories of <a href="https://littleheartsbiglove.co.uk/wp-content/uploads/2018/05/A-little-girl-with-a-special-heart.pdf" target="_blank">our little girl with her special heart</a>, reflecting on how she taught us to live life to the full and enjoy every moment. We have so many happy memories to look back on and we are thankful for them all. Jessica’s godmother Katy shared <a href="https://littleheartsbiglove.co.uk/wp-content/uploads/2018/05/A-Godmummy-Tribute-to-Jessica-George.pdf" target="_blank">a poem</a> she had written as a tribute to Jessica. Jessica’s reception teacher, Miss James, shared some memories of <a href="https://littleheartsbiglove.co.uk/wp-content/uploads/2018/05/Jessica-at-school2.pdf" target="_blank">Jessica at school</a> and Stephanie, the Girls’ Brigade Captain, shared her memories of <a href="https://littleheartsbiglove.co.uk/wp-content/uploads/2018/05/Jessica-at-Girls-Brigade.pdf" target="_blank">Jessica at Girls’ Brigade</a>. These were followed by a video showing photos of Jessica throughout her life, interspersed with a couple of video clips of her, and finishing with one where she takes a final bow. The way she used to bow after doing a dance, or a show always used to make us smile. It felt like the right way to end the video sharing memories of her life.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR46F2ilBW_8Ir9SPkjcpWq1Lw7p90lYzLAzyx58nsU_ekXJWuXKbIMwTtJZ8fQQeDbVQa7_djbBEmcNIaKgVhs2_K4Kh0fps05_Ykcsml1QZ8JdeWHyMY9QvDyM45sSGpIG7NwYGLu9w/s1600/Jessica+funeral+03.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Jessica's casket at the front of the church" border="0" data-original-height="667" data-original-width="1000" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR46F2ilBW_8Ir9SPkjcpWq1Lw7p90lYzLAzyx58nsU_ekXJWuXKbIMwTtJZ8fQQeDbVQa7_djbBEmcNIaKgVhs2_K4Kh0fps05_Ykcsml1QZ8JdeWHyMY9QvDyM45sSGpIG7NwYGLu9w/s400/Jessica+funeral+03.jpg" title="" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo taken by Charlie Pugh</td></tr>
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After the service, Jessica’s pink heart-covered casket was carried to the meeting area in the church to allow people to say their last goodbyes to her. The church was absolutely packed. A huge thank you to Michael’s colleagues for setting up screens and a sound relay into the meeting area and side room to ensure that those attending were still very much part of the service even though we couldn’t fit everyone into the chapel, Tracey who organised the refreshments and beautiful cake display and the church staff and stewards who helped make everything run smoothly. We only had a short time at the church before we had to leave for GreenAcres and we didn’t manage to speak to everyone who attended. Thank you so much to everyone who came – we certainly felt surrounded by your love and support even if we weren’t able to speak to you in person.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9VmFmKTHMz-sUyq13_J9M5aa9OmSHeu8tab-hNTWlt3f37T832NZyeKVg6x7tXllMkFmqxhu603qxKcynjX9F6YlVOlidbGvKm0rUMriNZUEjksXeuRenUa9UdH35b6YxDGfWlHBWzgA/s1600/Jessica+funeral+05.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Nanny saying goodbye to Jessica" border="0" data-original-height="667" data-original-width="1000" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9VmFmKTHMz-sUyq13_J9M5aa9OmSHeu8tab-hNTWlt3f37T832NZyeKVg6x7tXllMkFmqxhu603qxKcynjX9F6YlVOlidbGvKm0rUMriNZUEjksXeuRenUa9UdH35b6YxDGfWlHBWzgA/s400/Jessica+funeral+05.jpg" title="" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo taken by Charlie Pugh</td></tr>
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We were honoured to have a police and TFL escort holding the traffic to help the first part of Jessica’s journey from church to her final resting place at GreenAcres.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif0_T6sdXLkBWTZwt7E9l03gn5dY7rXMgQsSCaZ-_T8wEV7paf7VmpZyAzd8dfUcL-eejsiRJiwwnpWFV3wrjdiRCsgdTEUORNaAww1bY3Yog7SZwmp_3ydNo2vHDGMK6twqaZpuYYJy4/s1600/Jessica+funeral+02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Michael and Sophie saying goodbye to Jessica as her casket arrives at GreenAcres" border="0" data-original-height="750" data-original-width="1000" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif0_T6sdXLkBWTZwt7E9l03gn5dY7rXMgQsSCaZ-_T8wEV7paf7VmpZyAzd8dfUcL-eejsiRJiwwnpWFV3wrjdiRCsgdTEUORNaAww1bY3Yog7SZwmp_3ydNo2vHDGMK6twqaZpuYYJy4/s400/Jessica+funeral+02.jpg" title="" width="400" /></a></div>
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The service at GreenAcres was a much more intimate one with Jessica surrounded by the closest members of our family, her godparents and a couple of our close friends who had been a significant part of her journey. Nick led the beautiful brief service at the graveside, with godmummy Gillian sharing <a href="https://littleheartsbiglove.co.uk/wp-content/uploads/2018/05/Greenacres-reading.pdf" target="_blank">a poem</a> before Jessica was laid to rest in her forever bed. We each threw in a pretty flower for her and Sophie pressed the button to start the bubble machine. She and Jessica always loved trying to catch bubbles in the garden together. As Sophie gave Jessica her flower and tossed in a little handful of earth, she waved and said “bye, bye Jessica.” Throughout the service at church, and the one at GreenAcres, she was a little superstar.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh87ydg4W-7RjQsjQeJxel_Dl0RWTlp7Iji2YAVGWSC8ENzTBXZCJhBqGSCJNLj0DkLJW6mc87KKDOjs7S_wK66ldeEEBcne5fa6l8zt5MP4nmNwF3FoY0SjhGZrDwYrK__5_KdrHADsg4/s1600/Jessica+funeral+06.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Jessica's casket being carried through the woods at GreenAcres" border="0" data-original-height="667" data-original-width="1000" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh87ydg4W-7RjQsjQeJxel_Dl0RWTlp7Iji2YAVGWSC8ENzTBXZCJhBqGSCJNLj0DkLJW6mc87KKDOjs7S_wK66ldeEEBcne5fa6l8zt5MP4nmNwF3FoY0SjhGZrDwYrK__5_KdrHADsg4/s400/Jessica+funeral+06.jpg" title="" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo taken by Charlie Pugh</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPNbw1U3ZfpX1oa4vK-7wfLbvR-KVMJmbLuV0aw47bnO0ukGjPOMj2Qs5pRMjhJwzROS49sT_J5B6O0K08fHe5sQjTBeVjLL0Cxv6yUpjHuKaxDNrZt6qCRrLua_XawuN6VXorM3lmE_I/s1600/Jessica+funeral+07.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Sophie with bubbles at GreenAcres" border="0" data-original-height="667" data-original-width="1000" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPNbw1U3ZfpX1oa4vK-7wfLbvR-KVMJmbLuV0aw47bnO0ukGjPOMj2Qs5pRMjhJwzROS49sT_J5B6O0K08fHe5sQjTBeVjLL0Cxv6yUpjHuKaxDNrZt6qCRrLua_XawuN6VXorM3lmE_I/s400/Jessica+funeral+07.jpg" title="" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo taken by Charlie Pugh</td></tr>
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We were welcomed by our family and friends shortly afterwards at Chalfont St Peter Community Centre where we shared memories of Jessica over sandwiches, cakes and cups of tea. It was lovely to be able to spend time with family and friends and remember our little girl. <br />
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We have been so touched by all the little things that have been done so far in Jessica’s memory, and those that are planned. Sophie’s preschool has created a garden area for the children with pretty flowers, a bench, butterflies and dragonflies and called it “Jessica’s garden”. Jessica’s school held a day for her – “Jessica’s day” – the day before her funeral where the children came dressed as princes and princesses and had a balloon release in her memory. It made us smile to see one of the male teachers dressed in a princess dress for Jessica. He will be Sophie’s teacher next year when she starts in the same reception class that her sister was in.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVpqw3ccPKBdZ1tiiV3BaxFDRIeojBPHeFfwntMhVqnuzL9jIqQYIVB10Jy_3lR1VTtC546mJJAsD2FWijbI130dvxj7vsQ0u4v-Y1VrRtST-ABu3uNn38erEzMBDliWRkxI3LRhfRG_Q/s1600/Jessica+funeral+08.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Sophie sitting on the bench in "Jessica's garden"" border="0" data-original-height="750" data-original-width="1000" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVpqw3ccPKBdZ1tiiV3BaxFDRIeojBPHeFfwntMhVqnuzL9jIqQYIVB10Jy_3lR1VTtC546mJJAsD2FWijbI130dvxj7vsQ0u4v-Y1VrRtST-ABu3uNn38erEzMBDliWRkxI3LRhfRG_Q/s400/Jessica+funeral+08.jpg" title="" width="400" /></a></div>
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Thank you to everyone who came to Jessica’s celebration, who have shared messages of love and support on our social media, or who have simply been holding us in prayer over these last few weeks. Thank you also to those who were involved with the arrangements yesterday and helped make that final journey an easier one. Yesterday was a tough day, but we felt so surrounded by love throughout. You all did Jessica proud and made her send-off a truly beautiful and special one. This morning has been harder still – having to start facing the reality of life without Jessica without having the focus of her funeral to distract us. <br />
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I had originally intended for this to be the final post in Jessica’s blog as her last journey. However, her story is still a little unfinished. We are still waiting for the final results of the post-mortem and so her cause of death remains unknown. It may be that the results are inconclusive but we will update this blog when we are able to share this piece of information about Jessica’s journey and if there are any future stories to share about the things that are being done in Jessica’s memory. The stories of our life as a family and our own journey through our grief will still continue over on Louise’s blog at <a href="https://littleheartsbiglove.co.uk/">https://littleheartsbiglove.co.uk</a> Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com2tag:blogger.com,1999:blog-1147986247944290519.post-83024750633164015962018-05-02T19:29:00.003+01:002018-05-14T21:11:31.698+01:00Jessica's funeral detailsWe have been busy over the last week making arrangements for Jessica’s final journey. It has been incredibly tough and reality has hit us very hard at times. We have chosen the spot for Jessica’s forever bed at GreenAcres, picked out her casket and the last set of clothes she will wear and started to consider the details for the service celebrating her life. We can now confirm the timings and location for the celebration and wake, which are as follows: <br />
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Celebration of Jessica’s life </h3>
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Friday 18th May 2018, 1pm at <a href="http://www.christchurchuxbridge.org.uk/" target="_blank">Christ Church</a>, Redford Way, Uxbridge UB8 1SZ <br />
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Tea and coffee will be available after the service<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqz_xGRcod4e8fhgpt5naHGgeqo5ucBHTmxalc4mXDsWOecjU3aJZzey2qizLVFN025lKTZ7UgZG9TZioJQhWA32E8VBW_d8qGpFrFVeZ4y_Mg-DNG6AQEuIWtvxsjgQXBPt80TKk5Zlc/s1600/Jessica+02-05-18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica playing the drums at Chessington" border="0" data-original-height="1069" data-original-width="1600" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqz_xGRcod4e8fhgpt5naHGgeqo5ucBHTmxalc4mXDsWOecjU3aJZzey2qizLVFN025lKTZ7UgZG9TZioJQhWA32E8VBW_d8qGpFrFVeZ4y_Mg-DNG6AQEuIWtvxsjgQXBPt80TKk5Zlc/s400/Jessica+02-05-18.jpg" title="" width="400" /></a></div>
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Please note that the church car park will be reserved for blue badge holders and the close family members who will be attending Jessica’s burial at GreenAcres. <br />
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There is plenty of parking available nearby. The nearest car parks to the church are the Sainsburys car park and the Cedars car park. You can park in Sainsburys for a maximum of 2 hours for £2. Please note that there is ANPR in this car park so don’t exceed the maximum stay of 2 hours. The Cedars car park costs £1.40 for 2 hours for non-Hillingdon residents. There is no maximum stay in this car park, other than being limited to car park opening times (it closes in the evening after the shops shut). There is also on-street parking on Belmont Road although this is very expensive, especially for non-Hillingdon residents and the meters have a tendency to swallow coins. We’d advise parking in Sainsburys or the Cedars instead. <br />
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For those coming by public transport, Christ Church is opposite the bus station and Uxbridge underground station. If you are coming by train, you need to exit the station by the side entrance (heading towards the bus station) rather than the High Street entrance.<br />
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We would like to ask for donations to <a href="https://www.lhm.org.uk/" target="_blank">Little Hearts Matter</a> instead of any flowers please. The JustGiving page that was set up previously by one of Louise's blogging friends has now closed, but we have set up another <a href="https://www.justgiving.com/fundraising/inmemoryofjessica" target="_blank">JustGiving page</a> if you would like to donate through this.<br />
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Jessica’s burial </h3>
This will take place at GreenAcres at 3pm and will be a private service for the immediate family and Jessica’s godparents. <br />
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Wake </h3>
You are welcome to join us for the wake following the celebration of Jessica’s life. This will be held at <a href="https://www.cspcc.org.uk/" target="_blank">Chalfont St Peter Community Centre</a>, Gravel Hill, Chalfont St Peter, Bucks, SL9 9QX from 3pm. Tea and coffee and refreshments will be available here. <br />
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There is an on-site car park at the community centre and parking is free here. If this car park is full, there is a nearby car park in Church Lane. There is a charge for parking in the Church Lane car park which you can pay at the machines or by mobile phone. <br />
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One of Michael's colleagues will be providing minibus transport from the church to Chalfont St Peter Community Centre if you are coming by public transport - thank you Oliver!<br />
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If you are thinking of joining us for the celebration of Jessica’s life and/or the wake afterwards, please could you let us know by filling in a very short form <a href="https://www.surveymonkey.co.uk/r/CYKFNTY" target="_blank">here</a> if you haven’t already done so. This is just so we have an idea of what numbers we can expect to help us with some of the practical arrangements.We would also like to ask that people avoid wearing dark coloured clothing if possible.<br />
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Thank you for continuing to keep us in your thoughts and prayers. We are very much taking things moment by moment right now and trying to get through each day as best we can. <br />
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<br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-34985375626028833262018-04-23T20:27:00.004+01:002018-04-24T07:55:23.672+01:00Making arrangements for Jessica’s final journeyThe last week has been such a huge rollercoaster of emotions. There are times when we can’t quite believe that Jessica has gone and then in the next moment, reality hits and we are consumed by our pain. Sophie has been coping well on the whole, but she does now realise that Jessica will not be coming home again and there are moments when she breaks her little heart over the loss of her sister and playmate.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7GJ-CTjKZoMZoBuEUZpfx1V4WtoH4pSVntCLQQk4mF3eRk1Rsm_70If1pj_z2Vu9NGIsSOfyMBmqdjvFIlr7ReYWUvog_3PDx2lFYSyxpe8Xi16LSHWipXia7uzXupyNcDedzW5gHH1U/s1600/Jessica+23-04-18+01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica and Sophie having a cuddle in Langley Park" border="0" data-original-height="700" data-original-width="700" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7GJ-CTjKZoMZoBuEUZpfx1V4WtoH4pSVntCLQQk4mF3eRk1Rsm_70If1pj_z2Vu9NGIsSOfyMBmqdjvFIlr7ReYWUvog_3PDx2lFYSyxpe8Xi16LSHWipXia7uzXupyNcDedzW5gHH1U/s400/Jessica+23-04-18+01.jpg" title="" width="400" /></a></div>
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We are thankful that we were able to visit Jessica at Wexham Park a couple of times before she was transferred to the John Radcliffe last Wednesday. The post-mortem was carried out on Thursday and at present, the cause of her death remains unknown. The pathologist has taken tissue samples for testing and it will be a few weeks before we know the results from these. In the meantime though, the coroner has been able to issue an interim death certificate to allow us to go ahead with funeral arrangements. <br />
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We will be having a celebration of Jessica’s life at our church in Uxbridge (Christ Church) on Friday 18th May in the early afternoon. Jessica will then be taken to GreenAcres Chiltern woodland burial ground in Seer Green which will be her final resting place. This will then be followed by a wake somewhere nearby. We will confirm the details of timing and locations on this blog once we know them ourselves. It would help us if you could let us know if you would like to attend the celebration and/or the wake after Jessica’s burial by filling in the form <a href="https://www.surveymonkey.co.uk/r/CYKFNTY" target="_blank">here</a>. This is just so we have an idea of rough numbers to expect which will help us with some of the practical arrangements.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJfbij6qVT_OJMQOpGZEgWNDbM0zQQuZO424CA26JkK0K4ZQUVP9MWiujtH5P0m5VwyUM0nMQpf2c6HDpPPwPWyVjLXo5dYXZyLIjYpLnaVfe348KmDUnL-qvUvlKrnxj6vw21L1iXSUQ/s1600/Jessica+23-04-18+02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Sophie walking through GreenAcres Chilterns" border="0" data-original-height="700" data-original-width="467" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJfbij6qVT_OJMQOpGZEgWNDbM0zQQuZO424CA26JkK0K4ZQUVP9MWiujtH5P0m5VwyUM0nMQpf2c6HDpPPwPWyVjLXo5dYXZyLIjYpLnaVfe348KmDUnL-qvUvlKrnxj6vw21L1iXSUQ/s400/Jessica+23-04-18+02.jpg" title="" width="266" /></a></div>
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Thank you all so much for your love and support since Jessica’s passing. We have received so many cards, flowers and little gifts for Sophie and your kind words have helped us know that we are surrounded by love and prayers. Thank you too to everyone who donated to the <a href="https://www.justgiving.com/fundraising/jessicasheart" target="_blank">JustGiving page</a> which has raised over £6,000 (inc. Gift Aid) for Little Hearts Matter. <br />
<br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com1tag:blogger.com,1999:blog-1147986247944290519.post-8477623911867834482018-04-14T16:05:00.001+01:002018-04-14T16:07:44.261+01:00Journey's endThis is the post that I always feared I would one day have to write. It breaks my heart to be writing it now. Our beautiful Jessica passed away in the early hours of this morning. She had been unwell on and off for several weeks after returning to school. We had several doctor’s visits, a couple of trips to hospital and an emergency admission earlier this week. When she was discharged on Thursday with a big bag of meds, we thought that these would finally help her start to get better. Sadly, it was not to be. <br />
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Last night, she woke up coughing and came for a snuggle in our bed. She complained that her back and tummy hurt and then suddenly she stopped breathing. We called 999, tried CPR which the paramedics and A&E staff continued but to no avail. Our beautiful Jessica was gone.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAEieEQtQTbB_Bz-zsCchr1bW2c8X8GckOIGKEbLpw0J8ZWDYpRN7MLErIX9LkJVuswtEazqOp01lqQWGHMbsXilQeLZwpkkfJkyJgt4zN96E3tFON9O5zThl-zAqyWJh-cPc9F9VFGUU/s1600/Jessica+14-04-18+02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica wearing a butterfly headband" border="0" data-original-height="700" data-original-width="525" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAEieEQtQTbB_Bz-zsCchr1bW2c8X8GckOIGKEbLpw0J8ZWDYpRN7MLErIX9LkJVuswtEazqOp01lqQWGHMbsXilQeLZwpkkfJkyJgt4zN96E3tFON9O5zThl-zAqyWJh-cPc9F9VFGUU/s400/Jessica+14-04-18+02.jpg" title="" width="300" /></a></div>
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To say we are heartbroken is an understatement. We are devastated beyond belief and yet thankful that we had six and a half wonderful years with this beautiful little girl of ours. Seven years ago, we were told that she would not survive for more than a few days. To have had so long with her was a huge blessing. We thank God for every day we had with her. No amount of time would ever have been enough though.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKhpNINc1TfkAk9iseuRafWSruHQfP8haW5KS_ByiMX4ItjNpDOTcLfHG8qEaw6Uy5C2C4q2LF1mVMaOcXWuz8aPhETIFh1nMjpIxGHnOjluLLOvBVmVNaPf6E2DEzbCTrVWqIoFgdFWQ/s1600/Jessica+14-04-18+04.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Sophie, Mummy, Daddy and Jessica sitting in a garden on holiday" border="0" data-original-height="700" data-original-width="700" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKhpNINc1TfkAk9iseuRafWSruHQfP8haW5KS_ByiMX4ItjNpDOTcLfHG8qEaw6Uy5C2C4q2LF1mVMaOcXWuz8aPhETIFh1nMjpIxGHnOjluLLOvBVmVNaPf6E2DEzbCTrVWqIoFgdFWQ/s400/Jessica+14-04-18+04.jpg" title="" width="400" /></a></div>
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We were lucky to be able to enjoy a family holiday with Jessica in the last couple of weeks and we made some wonderful memories which we will treasure forever. <br />
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Sophie has been our little ray of sunshine. We don’t think she fully understands yet – she knows that Jessica is in hospital and that Mummy and Daddy are sad and miss her, but I don’t think that she yet realises that Jessica will not be coming home again. <br />
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Our beautiful girl is now out of pain – no more breathlessness, no more struggles with energy. Her special heart is whole again but ours will always have a big Jessica-sized hole which can never be filled.<br />
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Thank you so much for all your kind messages of support and love on social media today. We know that we are surrounded by love and prayers and we are eternally grateful for that. Please, please keep talking about Jessica. Don’t ever feel afraid to mention her name. She is our little girl, she is part of our family and we will want to talk about her, to remember her, to relive all those beautiful memories. We know that many of you feel that you have no words, that you may not know what to say. The fact that you are letting us know that you care is enough. <br />
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One of Louise’s blogging friends has kindly set up a <a href="https://www.justgiving.com/fundraising/jessicasheart" target="_blank">JustGiving page</a> in Jessica’s memory to raise money for Little Hearts Matter. They have supported us so much through this journey and we know they will continue to do so in our bereavement. <br />
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Jessica will be going to the John Radcliffe on Monday for a post-mortem to determine the cause of her death. It seems appropriate that the hospital where this journey first started; the hospital that gave us that first glimmer of hope is the hospital to give that final piece of information about her life. <br />
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We will update again when we have more information. Thank you all again so much for your support and love. It means a lot to know that Jessica touched so many hearts in her short life. She was truly a joy-carrier and we were so blessed to have been her mummy and daddy.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwYRKRz7B4Lyzq8VRGeWvwPVriF9iR2lYPEFEaR3zlItO5gK1lyxqJscjotRPaT7RAVjaoFeBGyIs6tQdflCvRF5G1wkwLsEMl4wB3C8-rMiyQSX3qSt2IZg51oKODJ10ehFJ6ojZEkWk/s1600/Jessica+14-04-18+01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica snuggling her Kerry dolly" border="0" data-original-height="700" data-original-width="525" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwYRKRz7B4Lyzq8VRGeWvwPVriF9iR2lYPEFEaR3zlItO5gK1lyxqJscjotRPaT7RAVjaoFeBGyIs6tQdflCvRF5G1wkwLsEMl4wB3C8-rMiyQSX3qSt2IZg51oKODJ10ehFJ6ojZEkWk/s400/Jessica+14-04-18+01.jpg" title="" width="300" /></a></div>
Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com23tag:blogger.com,1999:blog-1147986247944290519.post-88661870030060174952018-02-19T21:37:00.000+00:002018-02-19T21:38:33.671+00:00Seven weeks on: post-Fontan check-upJessica has been recovering well at home over the last few weeks. Her energy levels are now back up to where they were before her surgery and hopefully will continue to improve. She has enjoyed having “school at home” with Mummy since coming home and it has been lovely to have that one-to-one time with her.<br />
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We were back in Southampton today for Jessica’s second post-Fontan check-up. She coped well with the echo and ECG and surprised herself with how well she coped with all the stickers being taken off her chest afterwards too! She’s doing quite well – her heart function looked good on the echo and she can now come off the diuretics which leaves her with just aspirin and Vitamin D on the medications front. <br />
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Her sats are still a little on the low side though. Today they were around 78 which is about the same as they were pre-Fontan. Hopefully they will start to improve over time but if not, Jessica may need to have an MRI to have a closer look at her heart to see if there is anything else causing the low sats, such as extra blood vessels bypassing the Fontan circulation. In the meantime, she will continue to have monthly sats checks with the community nurse as she did before her surgery.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiACouYbnGUo8qQtIA2uv5f12DzRnhAAWvKtcFIZj3BGyeR27xdkPjl8cAME3Fvm8VAhxUUoIS3akyjSLXzroXTCa1LPivFFA2iQ53hyKex_ObdefawGfe85mUmul2_hcFEBrhY2qJzkaM/s1600/Jessica+19-02-18+01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A very smiley Jessica having an echo" border="0" data-original-height="750" data-original-width="1000" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiACouYbnGUo8qQtIA2uv5f12DzRnhAAWvKtcFIZj3BGyeR27xdkPjl8cAME3Fvm8VAhxUUoIS3akyjSLXzroXTCa1LPivFFA2iQ53hyKex_ObdefawGfe85mUmul2_hcFEBrhY2qJzkaM/s400/Jessica+19-02-18+01.jpg" title="" width="400" /></a></div>
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Our other slight concern has been with Jessica’s voice. She’s quieter than she was before the surgery and still sounds hoarse at times, especially when she tries to raise her voice or shout. We’ve been reassured that this should gradually improve but if not, Jessica will be referred to an ENT specialist for further investigation. <br />
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Sats and voice aside, she seems to be doing well though. Her appetite has noticeably improved over the last couple of weeks and it was nice to see a weight gain in clinic today! She has also been given the green light to go back to school again tomorrow – starting back on half-days this week and then hopefully going back to full days next week if she copes well. <br />
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In other news, as many of you already know, Jessica and Sophie are very excited at the prospect of having a <a href="https://littleheartsbiglove.co.uk/mine-january-2018/" target="_blank">new sibling</a> who is due in August. They have known about baby “Peanut” since Christmas and other than Jessica telling all the doctors and nurses about Peanut while she was in hospital, have done very well at keeping it a surprise. It’s lovely though to finally have our news out in the open and be able to share it now. Jessica has already asked whether Peanut will have a special heart like her. We should be having some extra heart scans over the coming week to find out the answer to that one.<br />
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As far as Jessica’s special heart goes, we’ll be back in Southampton again in four months’ time for her next check-up. Hopefully there’ll be some improvement in her sats levels between now and then. In the meantime though, we’ll make the most of being able to enjoy normality once again. Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-32380006787537938832018-01-15T15:57:00.002+00:002018-01-15T15:57:27.789+00:00Post-Fontan recovery: Home on day 16!We were very pleased last week when we thought that Jessica would be coming home this week. We didn’t expect that we would get to go home on Saturday though! With Jessica’s NG tube being removed on Saturday morning along with her cannula and drain dressings, there was really no reason for her to stay in hospital any longer. Saturday afternoon saw us packing up and heading home for Jessica to start her recovery at home!<br />
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<br />While we were absolutely delighted to be coming home, we kept a little quiet about it on social media on Saturday. We wanted to be able to surprise our church family by turning up all together. It was especially lovely because of it being a church parade service (where the Girls’ and Boys’ Brigade members join in with the service) so both our girls were there in their uniforms.<br />
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<br /><br /><br />We had a little worry last night as Jessica was coughing a
lot and sounded a bit chesty. Thankfully a check-up with the GP this
morning shows that her chest is clear. Hopefully it is just a little bit of a cold and won't cause too many problems with her recovery.<br />
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It is lovely to be home again. Jessica will be off school for the next few weeks as she recovers at home, but Sophie went back to preschool today and enjoyed seeing her friends. We have a follow-up appointment in Southampton for Jessica on Friday to check how she is recovering and will be taking things easy this week as we get used to being home together. A huge thank you to everyone for your love, support and prayers. After previously having surgical stays of at least four weeks, it is amazing to be home at a little over two weeks following the surgery. Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com1tag:blogger.com,1999:blog-1147986247944290519.post-75331962019975976712018-01-13T10:35:00.002+00:002018-01-13T10:35:17.468+00:00Post-Fontan recovery: Days 14 and 15 (Ocean Ward) Jessica has had another good couple of days. Getting around the ward has been much easier since the chest drain came out as she’s only had an IV pole to take long with her. She quite enjoyed standing on the pole and being pushed around – a much quicker and easier way to get about! She has been able to come into the ward kitchen with Mummy to have breakfast and her appetite has improved so much that the dietitian has been happy to stop Jessica’s overnight feeds through the NG tube. Hopefully this will be able to come out at some point today.<br />
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After being without Sophie for more than two weeks, it was wonderful to finally be reunited again on Thursday evening. The girls were so happy to see each other again and it was so lovely to have Sophie with us once more. She has had such a lovely time at Nanny’s and has been so good throughout her visit. She didn’t cry once during her time there but I think the emotions from being separated from us for so long hit her later that evening when it was time to leave Mummy and Jessica on the ward and go and stay in the Ronald McDonald House with Daddy. Thankfully, she was much happier in the morning though and was in no hurry to leave the toys in the playroom at “the M house” and come up to the ward to see Mummy and Jessica!<br />
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<br /> <br />Jessica loved seeing Nanny again on Thursday evening when she came up with Sophie, and enjoyed visits from Grandma, Grandad and Godmummy Katy yesterday. It is lovely to see her being able to move about more easily and sitting up and chatting away to everyone. We had the first mention of the “H” word on Thursday’s ward round with the doctors considering it for the beginning of next week, all being well. With our previous surgical stays having been at least four weeks, it looks like this time around we will hopefully be getting home a little sooner!<br />
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<br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-63065303316422635722018-01-11T11:39:00.000+00:002018-01-11T11:39:00.182+00:00 Post-Fontan recovery: Day 13 (Ocean Ward) It has been amazing to see the changes with Jessica over the last couple of days. She’s gone from being restricted to her bed and chair and having lots of tubes and wires in high care to being able to move about the ward with most of the tubes and wires removed. Yesterday saw another big reduction in the tubes and wires. Jessica came off the oxygen altogether in the morning and had the remaining chest drain removed in the afternoon. We’re just left with one cannula for her heparin and an NG tube. <br /><br /> <br /><br />We were told last week that Jessica would go on warfarin after her chest drain was removed and the heparin stopped. The decision to put her on warfarin was due to her having sluggish flow in her inferior vena cava (the main blood vessel going from the body to the heart). However, the echo she had a couple of days ago shows improved blood flow and so the team have decided to go for aspirin instead. This will be much easier to manage at home than warfarin! The heparin needs to continue until she’s had three doses of aspirin and then that cannula should be able to come out. <br /><br /> <br /><br />We had hoped that her remaining cannula would hold out a couple more days just until the heparin finished. Unfortunately it stopped working last night and had to be replaced. It had lasted well though given it was put in while we were still on PICU. Fingers crossed the new one keeps working and we won’t need any more cannulas put in now. <br /><br /> <br />
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<br /><br />Jessica has been enjoying being able to get around the ward and visit the playroom again. She spent most of yesterday afternoon sleeping as she was sedated for the chest drain removal. She wasn’t very impressed that she slept through dinner time and missed her fish fingers and chips though! Nice to see her showing an interest in food again. We did have some food in the fridge for her, so she didn’t go hungry! <br /><br /> <br /><br />We are looking forward to Sophie coming to the hospital today. It has been more than two weeks since our girls were last together. It will be lovely to have our little family back together again. <br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com1tag:blogger.com,1999:blog-1147986247944290519.post-11265877564221217812018-01-10T11:07:00.002+00:002018-01-10T11:07:35.179+00:00Post-Fontan recovery: Day 12 (Ocean Ward)<div class="separator" style="clear: both; text-align: center;">
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Jessica had a really good day yesterday. She had a lovely morning and enjoyed making Frozen characters out of Lego during her school session in the morning and having a visit from Godmummy Katy just before lunch. Her appetite is starting to improve and she is beginning to show an interest in food again.<br />
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<br /> She wasn’t too keen on having her nasal prongs changed over so she could move off the opti-flow oxygen and on to normal oxygen. Her ECG wires have all been removed as she no longer needs continuous ECG monitoring. Having the tubes and wires reduced a little more meant that Jessica was able to get up and go for her first walk around the ward pushing her drain, heparin and oxygen around with her in a trolley. She made a beeline for the playroom. It made us laugh that the one toy she wanted to play with there was another trolley!<br />
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<br /><br /> We were quite impressed by how speedy Jessica was getting around the ward. I almost had to run to keep up with her! A trip to the playroom and back was quite enough for a first walk though and she was quite happy to get back into her bed when we returned to high care. <br /><br /> <br />
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<br /><br />Being able to get up and about was a big step in itself but the big steps forward didn’t stop there. Later that evening, Jessica was moved out of high care and into Dolphin bay. Another step closer to getting home again. It meant that Mummy was able to sleep next to her bed (no more doing shifts with Daddy so that one of us can sit Jessica overnight). It also means that we will be able to have Sophie with us again soon, as she can stay with Daddy in the Ronald McDonald house while Mummy stays on the ward with Jessica. Hopefully she can come up to the hospital tomorrow. We’re looking forward to seeing our baby girl again after two weeks of being apart. <br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-49255576624076306592018-01-09T08:51:00.001+00:002018-01-09T08:52:07.545+00:00Post-Fontan recovery: Day 11 (Ocean Ward)<div class="separator" style="clear: both; text-align: center;">
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It was back to school for Jessica yesterday! We had a visit from the teacher at the hospital school in the morning who then did a reading session with Jessica in the afternoon. She’ll be dual-registered at the hospital school (along with her normal school) while she is in hospital which will count as school attendance during this time. There is a classroom up on G level which children can go to if they able; otherwise the teachers can come to the bedside and do a couple of teaching sessions each day. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnyF5nwF2-iLpk6GrWt0UEp4AjorzC4PG5kXqoWaSA_Ymq2rZSiJvySU_2dBH2hYQWvKW-8fjvLFC041-RvXyp1PgwDKQ_CNdtGmFv7eXFG_TLWCx6qdxUCIricuj0G-RL_6v0s-tYQZE/s1600/Jessica+09-01-18+02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica with the Pets as Therapy dog" border="0" data-original-height="588" data-original-width="1000" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnyF5nwF2-iLpk6GrWt0UEp4AjorzC4PG5kXqoWaSA_Ymq2rZSiJvySU_2dBH2hYQWvKW-8fjvLFC041-RvXyp1PgwDKQ_CNdtGmFv7eXFG_TLWCx6qdxUCIricuj0G-RL_6v0s-tYQZE/s400/Jessica+09-01-18+02.jpg" title="" width="400" /></a></div>
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Jessica had fun in the morning doing some beading with the play worker and also got to meet Archie, the Pets as Therapy dog who came for a visit. She was thrilled to receive a couple of parcels in the post in the morning with some sweets, colouring/activity books and hand-made cards from everyone in her Girls’ Brigade company. <br />
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Recovery-wise, Jessica continues to make gentle progress. She manage to eat a little more yesterday although we weren’t very impressed when the hospital catering company failed to provide any supper for her ward. It took three phone calls from the nurses before they finally sent someone up with snacks and sandwiches at 7.30pm. Hopefully today’s meals will arrive as normal! <br />
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At the moment, the focus is on continuing to wean Jessica’s oxygen down and to keep encouraging her to eat and drink a little more. Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-26304835445741698062018-01-08T09:29:00.000+00:002018-01-08T09:29:11.011+00:00Post-Fontan recovery: Day 10 (Ocean Ward)<div class="separator" style="clear: both; text-align: center;">
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Jessica is continuing to make small improvements every day. Her oxygen requirement is getting lower and we’re hoping that she’ll be able to move off the Optiflow and on to normal oxygen tomorrow. The amount of fluid draining from the remaining chest drain is getting less although it’s still too much for the drain to come out just yet. She had a much more settled night last night and doesn’t appear to be having any more side effects from the morphine being stopped.<br />
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<br /><br />Yesterday was mostly about trying to encourage Jessica to eat a little more. She’s now taking more of her medicines orally (instead of down her NG tube) and is managing to eat very small amounts (mostly strawberries and grapes!) We had a lovely visit from Grandma and Grandad yesterday afternoon and Jessica enjoyed seeing them. Grandma read her a story and Grandad played with Lego and playdough with her. I’m not sure who was having more fun with the playdough though – Jessica or Grandad! Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-91183139768671359482018-01-07T10:54:00.003+00:002018-01-07T10:54:52.398+00:00Post-Fontan recovery: Day 9 (Ocean Ward)Jessica had another good day yesterday. Her oxygen requirements are gradually being reduced each day and she seems to be coping well with this. She’s managing to go from bed to chair more easily with help and has been enjoying being able to sit out and play with her toys (and watch CBeebies on the iPad!) She’s still coughing a lot but her chest sounds are better than they were a few days ago. We had a chat over FaceTime with Godmummy Gillian in the morning and another visit from Godmummy Katy in the afternoon which was lovely. Jessica also enjoyed getting to chat to Sophie via FaceTime. She misses her sister but both the girls are coping well with having to be apart for the time being, which I am thankful for. <br /><br /> <br />
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<br /><br />Last night was quite a restless night. Jessica was quite irritable and itchy, and struggled to find a good sleeping position. Her morphine was stopped yesterday and it may be that the restlessness and irritability are as a result of morphine withdrawal. She did have some short periods of being asleep and settled after I took over and has seemed fairly happy this morning so fingers crossed that coming off the morphine isn’t causing too many problems. <br /><br /> <br /><br />The biggest difference I’ve noticed this morning is with Jessica’s movement. She’s moving freely around her bed now, sitting up straight in the middle of the bed and being able to move herself back up the bed into a comfortable sitting position each time she starts sliding down the bed a bit. A couple of days ago, we were constantly having to scoop her up and move her back up the bed; now she is mostly doing it by herself. She’s also much less wobbly on her feet when moving from bed to chair and back again. We’ve still got some way to go but each day brings another little improvement which is wonderful to see. <br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-27626385401708894382018-01-06T11:14:00.001+00:002018-01-06T11:21:15.255+00:00Post-Fontan recovery: Day 8 (Ocean Ward)Jessica had a good morning yesterday with some more time spent out in the chair doing some painting, playing with kinetic sand and doing some puzzles. She’s not been eating very much over the last few days and it’s been an effort to encourage her to eat very small amounts. Strawberries seem to be the one thing Jessica will eat at the moment so we’ve stocked up on these! She is having some feed overnight through her NG tube but because she’s not managing to eat much in the day, this has been changed to a higher calorie feed to help give her a bit more energy, which will hopefully also help bring her appetite back a little.<br />
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She ended up falling asleep in the chair after lunchtime. She was quite sick when she woke up though and spent the rest of the afternoon back in bed and sleeping most of the time. She was given some anti-sickness meds to help her feel better and Godmummy Katy popped in for a visit which made her smile. <br />
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Last night was a nice settled one. Jessica slept for most of the night although was sick again shortly after I took over from Michael at 4.30am. Since then she has seemed much better though and has been enjoying playing with Lego and watching Hey Duggee on the iPad. The doctors were happy with her progress when they reviewed her this morning. There are still significant amounts coming out of her remaining chest drain so this will remain in situ for at least a couple more days. It looks like it will be a little while yet before she is ready to move out of high care. In the meantime though, the plan is to try to reduce her oxygen requirement and continue making small, but steady, steps towards getting well again. Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com1tag:blogger.com,1999:blog-1147986247944290519.post-91108968113172026922018-01-05T09:37:00.003+00:002018-01-05T09:37:57.786+00:00Post-Fontan recovery: Day 7 (Ocean Ward)<div class="separator" style="clear: both; text-align: center;">
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Jessica had another good day yesterday. She spent several hours out of bed sitting in the chair and had lots of fun doing some painting and sticking with the play worker and playing with playdough. She looked quite tired out in the chair after a couple of hours but was quite insistent on staying there for as long as possible!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitMXLVg0cQttGW29uZx22CwsFucg0dU4i9Q9Yl-b8GQH2xcZJnQ9gmQlI6nKq-v_IGDccgVgbIq0SMpkYgznRs4BavTy4XCrQx6vvy3SqK40BFlr9kurER1Lto-c2Nbl3ISwfzAOwRC3U/s1600/Jessica+05-01-17+01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica holding up a paint-covered hand while doing some handprint painting" border="0" data-original-height="668" data-original-width="1000" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitMXLVg0cQttGW29uZx22CwsFucg0dU4i9Q9Yl-b8GQH2xcZJnQ9gmQlI6nKq-v_IGDccgVgbIq0SMpkYgznRs4BavTy4XCrQx6vvy3SqK40BFlr9kurER1Lto-c2Nbl3ISwfzAOwRC3U/s400/Jessica+05-01-17+01.jpg" title="" width="400" /></a></div>
<br /> One of her chest drains is still draining a reasonable amount of fluid but the other one was only draining very small amounts and was removed yesterday. Jessica was given some midazolam just before her chest drain was taken out to help sedate her a little and make her more comfortable for this. She slept for most of the day after that which made up for a fairly restless night the night before! There doesn’t appear to be any chyle draining from the chest drains so hopefully we have managed to avoid chylothorax this time around! <br /><br /> <br /><br />Jessica’s weight this morning has decreased a little so the diuretics are working well. Her breathing seems much more comfortable than it was a couple of days ago although she is still a bit breathless. The plan for today is to have more time out in the chair playing and doing arts and crafts and to try to reduce her oxygen requirements a little. <br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-91850887854966065962018-01-04T08:16:00.002+00:002018-01-04T08:16:23.175+00:00Post-Fontan recovery: Day 6 (Ocean Ward)It has been lovely to see more of Jessica’s happy personality re-emerge over the last 24 hours. Yesterday morning, she was making the nurses dance to the music on one of her toys and it was wonderful to see her smiling as she watched them. She’s taking more of an interest in her toys again and has been playing with her hospital Playmobil figures and her Frozen mini figures. She also enjoyed getting to chat to Sophie and Nanny via FaceTime. Sophie is having a lovely time at the moment but we do miss having her with us. Hopefully it won't be too much longer before we can be together again.<br />
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Jessica is starting to eat and drink a little more now. She managed to get out of bed with a little help and took a couple of steps to go and sit on the scales and be weighed. She’s had a significant weight gain since her op and the team were a little concerned that she might have fluid on the left side of her chest, as she doesn’t have a drain in this side, and is also still very breathless. Thankfully the ultrasound didn’t show any fluid but her diuretics have been increased slightly to help reduce any fluid retention. The two chest drains on the right side are still draining significant amounts so it will be a little while yet before they are ready to come out. <br /><br /> <br />
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<br /><br />Yesterday was quite a busy day for Jessica with dressing changes, having cannulas removed and replaced and having an echo done.She had so many things done that she’s filled up her first sticker chart and the second one is already half-full! By the time there was an opportunity for her to have some time out of bed and in the chair, she was exhausted and just wanted to go to sleep. Today should hopefully be a little quieter though so we should be able to get her out of bed for a while in the chair and perhaps do some colouring and arts and crafts. <br /><br /> <br /><br />We still have quite a way to go on the recovery front, but we are definitely taking little steps forward every day. Jessica has constantly amazed us with how well she is coping – she takes so much of what happens in her stride and we are so very proud of her. <br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com1tag:blogger.com,1999:blog-1147986247944290519.post-46797828188967539082018-01-03T08:32:00.001+00:002018-01-03T08:37:01.387+00:00Post-Fontan recovery: Day 5 (PICU/Ocean Ward)When I wrote yesterday morning’s update, I wasn’t expecting that this morning would find us up on Ocean Ward! PICU can be a rollercoaster ride at times though and we’ve learned that things can change very quickly, including changes for the better. <br />
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Jessica had a really good day yesterday. She managed to get out of bed and stand (very wobbly) on her feet for the first time, with the help of the physios who then helped her into a chair. She spent a couple of hours sitting out in the chair and did a little bit of colouring with Daddy. Being in the chair clearly tired her out and she spent most of the time out of bed dozing. It also did wonders for her chest though – her coughing was so much better and she didn’t need any more nasal suction to help her bring up those chest secretions.<br />
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Because she was doing so well with her chest (and PICU was becoming very busy) the team decided that she could transfer up to high care on Ocean Ward in the evening. She had her arterial line and her pacing wires removed before transfer. We’re gradually reducing the number of tubes and wires surrounding her! The skin around where her central line was looks very sore though (due to needing frequent dressing changes) and we now have some special dressings for this to help with healing.<br />
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It was lovely to be back on Ocean Ward. Five days is a very short PICU stay for Jessica - we've previously been there for at least ten days! Jessica was the only patient on high care overnight so she's still getting one-to-one care at present. <br />
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We’ve not heard any more with regards to the query over chylothorax and for now Jessica is on a normal diet (treatment for chylothorax involves being put on a very low-fat diet). She’s managing to eat very small amounts and is also having feeds via her NG tube. <br />
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Jessica is on heparin at the moment to help thin her blood and will stay on this until her chest drains are removed. Once these are removed, she will be started on warfarin. We’re a little nervous about getting to grips with this but as with previous changes after surgery, I am sure it will become our normal very quickly! <br />
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We’re gradually seeing her little personality re-emerge as she starts to feel better. She’s still very quiet and subdued but I got a little wave and Daddy got a little high-five when we swapped over in the night. It was lovely to see Jessica playing with her Playmobil figures for a few minutes this morning. Hopefully today we can manage a bit more time out of bed.Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com2tag:blogger.com,1999:blog-1147986247944290519.post-45102925977546566602018-01-02T09:53:00.000+00:002018-01-02T09:53:50.542+00:00Post-Fontan recovery: Day 4 (PICU)Jessica has continued to have more chest physio to help try and clear her chest. She has been blowing bubbles to try and help clear her lungs. The first batch of bubbles had washing up liquid and paint to help making the bubble blowing more fun. This worked quite well until she ended up getting a mouthful by forgetting to blow (in front of the consultant!) and so the bubble liquid has been replaced with blackcurrant squash instead. It still works well with getting her to blow bubbles in it but isn’t quite so much fun with trying to see how many bubbles she can make!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhduQ9qH7q7v7DiKmcMzVQ4hJmXMQEkcBIeCUYoQr7RnUEc5IEZ9AynCKPewe0stf56fig2BrNOPk1bzWO37s0F87SyXpCXaQJNTFb3Q4tqmHR0_F-IXKgOWm5Ql1Fqk9mkM6E1TVuudhc/s1600/Jessica+02-01-17+01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica blowing bubbles on PICU" border="0" data-original-height="668" data-original-width="1000" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhduQ9qH7q7v7DiKmcMzVQ4hJmXMQEkcBIeCUYoQr7RnUEc5IEZ9AynCKPewe0stf56fig2BrNOPk1bzWO37s0F87SyXpCXaQJNTFb3Q4tqmHR0_F-IXKgOWm5Ql1Fqk9mkM6E1TVuudhc/s400/Jessica+02-01-17+01.jpg" title="" width="400" /></a></div>
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On ultrasound, the right side of her diaphragm isn’t working as well as her left and is a little high. At present, the team are monitoring this. Mr Viola, the surgeon, came to see Jessica this morning and is fairly happy with her progress although her lungs are a cause for concern at present. It may be that she’ll need a procedure on her diaphragm to help give her right lung a bit more space although for now, the team will just keep an eye on this. <br />
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Jessica had her chest dressing removed yesterday and her new zip looks very neat. She still has the chest drains in situ and the fluid from these is being monitored a little more closely to check for chyle. She had a <a href="http://jessica-thejourney.blogspot.co.uk/2011/12/reminder-of-picu-rollercoaster.html">chylothorax</a> after both her previous surgeries and while we’re hoping that we’ve managed to avoid it this time around, there is a risk that it could happen again.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEppbfiKEzRXTL8mpUUQY3dx5rRknpmj_hh2ZLi9E3voZBUzAPO9pXcHaeZYzrLYZkaT8hDTKIZxxoJFlJx_g-MiXF9CoWgK5mHESVqh61knZ9jjPF231-fPJEv5iLMoj-93d-0vZHBfI/s1600/Jessica+02-01-17+03.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A sleepy Jessica on PICU showing off her new zip" border="0" data-original-height="700" data-original-width="467" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEppbfiKEzRXTL8mpUUQY3dx5rRknpmj_hh2ZLi9E3voZBUzAPO9pXcHaeZYzrLYZkaT8hDTKIZxxoJFlJx_g-MiXF9CoWgK5mHESVqh61knZ9jjPF231-fPJEv5iLMoj-93d-0vZHBfI/s400/Jessica+02-01-17+03.jpg" title="" width="266" /></a></div>
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We managed to have our first post-surgery cuddle with Jessica yesterday evening while her bedsheets were being changed. It was a brief cuddle as she is quite uncomfortable with all the drains and tubes in her, but it was lovely to have a cuddle again. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDerOElg641_306_-gzSdy9LOhQuFsLVXeVYJ6KriMk3te4fCUg2uVYk_WzMaalQXufCnZle-EvajzAO7y30PYOo4nu8kLWhyphenhyphenC8XpBSbguWi5LouKuvC2zi4L7pbkKtZ7PMOnNX0sAqFQ/s1600/Jessica+02-01-17+02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica her first post-surgery cuddle with Mummy" border="0" data-original-height="1000" data-original-width="1000" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDerOElg641_306_-gzSdy9LOhQuFsLVXeVYJ6KriMk3te4fCUg2uVYk_WzMaalQXufCnZle-EvajzAO7y30PYOo4nu8kLWhyphenhyphenC8XpBSbguWi5LouKuvC2zi4L7pbkKtZ7PMOnNX0sAqFQ/s400/Jessica+02-01-17+02.jpg" title="" width="400" /></a></div>
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Jessica is much more awake now. She is very tired but is coping well with everything. We are so proud of how brave she is being, particularly when she is having chest physio and suction which is very unpleasant for her. She knows that it is being done to help make her feel better and while it upsets her to have it done, she accepts that she needs it and doesn’t resist too much. She is being very quiet and mostly communicates with nods and shakes of her head at the moment; occasionally asking for water or a DVD. We do get the odd little half-smile and I had a “love you too” this morning which was lovely. <br />
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The plan at the moment is for Jessica to remain on PICU for a while longer. Her sats have generally been good and she is doing well on the whole. Once her chest clears we will hopefully be able to go back up to Ocean Ward.<br />
<br />Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com4tag:blogger.com,1999:blog-1147986247944290519.post-51886580176509800082018-01-01T09:00:00.001+00:002018-01-01T09:01:54.492+00:00Post-Fontan recovery: Day 3 (PICU)<div class="separator" style="clear: both; text-align: center;">
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Jessica is now off the ventilator and breathing well by herself with some extra oxygen to help keep her sats up. She was quite unimpressed with everything when she first woke up – especially the oxygen prongs up her nose and not being able to drink very much for a while. Her throat was quite sore from the ventilator and it took a little while before her voice started to come back. She was a bit spaced out from the morphine and told us that she was “better now” and wanted “to go downstairs!” <br />
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She became more settled as the day went on though and coped well with only being allowed small sips of water. She did manage to eat a yogurt and a couple of pieces of melon which hopefully also helped to quench her thirst a little. <br />
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We had a bit of a bumpy start to the night when the shift changed. Jessica had a lot of secretions on her chest that had built up a bit during the day. We had quite a few bouts of her sats dropping quite low and her needing chest physio and suction to help her cough up the secretions which wasn’t very pleasant for her. Thankfully, once she’d had a really good cough, her sats started to settle again and stay more stable. She’s also been on a nebuliser overnight to help with those chest secretions. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI-_Q6ar4XcPy1FmTpIwP7JIS77nXoo3gWB6nUgsKGIRusn92_UwJ9mrIr5JLkuxL_T8oRqIteWAfzs-aOk-gQvJbSrZe4Ntkg-YBfy0JKERJTaSCtUBz-G2hok8Caiel1PGZUWfhi4w0/s1600/Jessica+01-01-18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Jessica, me and hubby seeing in the New Year on PICU" border="0" data-original-height="720" data-original-width="960" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI-_Q6ar4XcPy1FmTpIwP7JIS77nXoo3gWB6nUgsKGIRusn92_UwJ9mrIr5JLkuxL_T8oRqIteWAfzs-aOk-gQvJbSrZe4Ntkg-YBfy0JKERJTaSCtUBz-G2hok8Caiel1PGZUWfhi4w0/s400/Jessica+01-01-18.jpg" title="" width="400" /></a></div>
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We saw in the New Year on PICU and Jessica woke up very briefly just before midnight and stayed awake to see in the new year with us. To be seeing in 2018 with our brave little superstar is just the best feeling ever. We did miss having our little Sophie with us though but she seems to be having a lovely time with Nanny at the moment which is good. Jessica did tell us at one point last night that she wanted Sophie – hopefully we will all be together again very soon. Thank you so much to lovely godmummy Katy who dropped off some snacks and a little something for Jessica to help us celebrate the New Year. <br />
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Michael and I took turns overnight to stay with Jessica now that she is more awake. This morning, she is looking much more settled and even gave me a little half-smile when I arrived back on PICU after some much-needed sleep. The right side of her chest sounds a little quiet today so she is going to have a chest X-ray this morning to see what might be causing that. She’s continuing to head in the right direction though. <br />
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Happy New Year to you all! Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com3tag:blogger.com,1999:blog-1147986247944290519.post-49403170700850456722017-12-31T11:51:00.001+00:002017-12-31T11:53:54.961+00:00Post-Fontan recovery: Day 2 (PICU)<div>
Jessica had a fairly stable day yesterday. She had regular bouts of chest physio and suction to help clear her chest and the secretions have lessened throughout the day and overnight. She came off the pacing wires during the morning and her heart rhythm has been good. She still has the pacing wires in situ for now but hopefully they won’t be needed again.<br />
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We’ve had quite frequent wakeful periods and Jessica has definitely been a little more aware of what is going on. She has tried to talk but can only mouth words while she has the ventilator in and has responded to what we’ve been saying to her with nods and shakes of her head. The wakeful periods have been very brief and she responds quickly to being given a little more sedative and muscle relaxant to get her settled again.</div>
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The plan for today is to try to extubate her and get her breathing on her own and woken up. Hopefully she will respond well to this. </div>
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Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com0tag:blogger.com,1999:blog-1147986247944290519.post-4020369776963307072017-12-30T09:41:00.002+00:002017-12-30T09:43:23.361+00:00Post-Fontan recovery: Day 1 (PICU)<br />
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<span style="font-family: "calibri";">Jessica had a good first night after her op. She had a few
irregular heartbeats, so the pacing wires had to be put on. She also needed a bit
of chest physio and suction to remove some gunk from her chest. Her sats have
generally been very good – up in the high 80s and we have even seen them
staying in the mid 90s for a few minutes! She was still quite blue when she
first came down to PICU but her colour has rapidly improved since then. We are
amazed by her colour, having never seen her quite so pink before!</span></div>
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<span style="font-family: "calibri";">Michael and I took turns to stay with Jessica overnight so
we could each get a reasonable chunk of sleep (plus the periods of dozing in
the chair next to her bed!) It was lovely to see how happy the consultant
looked when he checked on her in the morning. He’s looked after Jessica before
and she’s added a fair few grey hairs to his head on our previous PICU stays!
To see him look at the monitors and beam at her was so lovely.</span></div>
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<span style="font-family: "calibri";">The plan in the morning was to hopefully try to extubate
later that day. However, Jessica continued to have quite a lot of chest
secretions and so the decision was made to keep her sedated and on the
ventilator for the time being. She is coughing up the gunk quite well and has
had regular chest physio to help with this. She has had the occasional wakeful
moment and her instant reaction is to try and pull the tubes in her nose out
when she starts to stir! Thankfully she’s not been successful in doing so at
the moment.</span></div>
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<span style="font-family: "calibri";">Jessica had a little bit of swelling around her central line
yesterday and needed to have another line put in. Overall she was pretty stable
yesterday though. She’s on a whole host of medicines through all the various
lines, and these will gradually be weaned off over time. At the moment, it’s
still very much a balancing act to try and keep all her readings where they
need to be.</span></div>
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<span style="font-family: "calibri";">Michael and I have been making sure we get fed and rested as
much as we can while Jessica is sedated and settled. We both had a full night’s
sleep at the Ronald McDonald house last night and feel much better for it!
Sophie is also enjoying her sleepover at Nanny and has been having lots of fun
with her cousins. We miss having her with us but it is good to be able to
completely focus on Jessica at this time.</span></div>
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<span style="font-family: "calibri";">This morning, Jessica’s sats were a little lower. She had an
ultrasound which shows there is a small pocket of fluid on the left side, which
will hopefully get reabsorbed. Her left lung also looked a little deflated on
chest X-ray although thankfully there is no sign of any chest infection. She’s
currently lying on her right side to try with the pressure on the ventilator
having been increased a little to help reinflate her lung. The pocket of fluid
is small at present and will hopefully reabsorb, although if it increases, she
may need to have another chest drain put in.</span></div>
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<span style="font-family: "calibri";">We’re all taking it minute by minute at the moment. Jessica
has a tendency to throw curve balls in the way of recovery and I think the team
are quite aware of this and prepared for little surprises! At the moment, the
plan is to continue to keep her sedated and on the ventilator. She’s continuing
to have regular chest physio to help with the chest secretions. Overall though,
she is heading in the right direction and the team are happy with her progress
so far.</span></div>
Louisehttp://www.blogger.com/profile/12539776267618413398noreply@blogger.com4