tag:blogger.com,1999:blog-90117032282938129912024-03-05T00:14:21.246-08:00David's ICU Journey.David was born with CHD and Digeorge syndrome. He was born on December 19th 2008 and has spent the first 25 months of his life in the hospital. This is our journey from NICU to CICU to PICU and home.David'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-9011703228293812991.post-70700919517771890122012-12-06T12:24:00.000-08:002012-12-06T12:24:05.252-08:00A Rainbow<div style="text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJQtKaWwuf492K0iKVj04z84todzN6cRxbWutobW-IhFFA-J1N3DrJ6i-IOQiaZJcDrjjfSPr-eKbEszCHY1o688LNCPVEDzLYQO2dxE5h2SCEq2CHwJiTYhl7wnBqbePqcJWWgh3AtmIH/s1600/palm+phone+213.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJQtKaWwuf492K0iKVj04z84todzN6cRxbWutobW-IhFFA-J1N3DrJ6i-IOQiaZJcDrjjfSPr-eKbEszCHY1o688LNCPVEDzLYQO2dxE5h2SCEq2CHwJiTYhl7wnBqbePqcJWWgh3AtmIH/s320/palm+phone+213.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Vini on her birthday.</td></tr>
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We all know the story behind the rainbow.</div>
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After God flooded the earth, the rainbow became God's promise to man.</div>
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<i><b>"So God blessed Noah and his family. He told them to have many children and fill the earth with people again. He gave them the plants and the animals for food. <br />
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And then God said to Noah, "Look up in the sky."<br />
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Noah looked up. The storm clouds were drifting away, the bright sun was shining against Noah's back. And against the dark grey sky, God made a brilliant rainbow appear. God said to Noah,<br />
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“You see, I have set my rainbow in the sky. This will be the sign of the covenant I have made with you and all creatures, never again to destroy the earth by a flood. It will always remind us of the promise between you and me."</b></i></div>
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Commonly people refer to a new baby after the loss of a child, as a "Rainbow Baby". It is God's promise to a grieving family. His promise? Im not sure. I have had Davinity refered to as a Rainbow baby several times since Davids passing. Im not really sure what promise is behind it, but I get it. <br />
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Maybe its a promise that never again will your arms be empty. Maybe its a promise that "life can go on" after such a terrible loss. I have heard "Its a promise that God will never again take a child from you". I dont believe that one. To many parents suffer the loss of multiple children, so I dont believe that is the promise.<br />
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Maybe, its something different to each family. <br />
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I feel that Davinity is my promise, that healing will come. I know her sweet face will NEVER replace my David, but I get to enjoy in her what I missed with him. She will fill time in an empty routine, fill space in aching arms, place a smile where a frown would normally be. <br />
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Tony makes me smile, he makes me happy and helps me heal too. He, however is doing things already that David never did. We never got to see David walk, talk, play with other children independantly, feed himself etc. We will get to relive these things in Davinity.<br />
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<i>I wrote this post a while ago, and never posted it. I dont remember what I disliked about it, but I like it now.</i> <br />
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David'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com0tag:blogger.com,1999:blog-9011703228293812991.post-56555479528648013032012-01-09T20:58:00.000-08:002012-01-09T20:58:04.247-08:00Angry grief<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH76A_p-dbu8ZOKG0QqS8j5chlD2rB737F8clNsbcEzF2srqZJvpoRXZXdLwSplJRNKy7cm6aFNOD9tcnIXMxAQUSWEWa_IfW3aUKOo0m7xpvjA9MCIkY345YIOscWl4p-cWJHo7ypvBPY/s1600/daddys+card+1117.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" rea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH76A_p-dbu8ZOKG0QqS8j5chlD2rB737F8clNsbcEzF2srqZJvpoRXZXdLwSplJRNKy7cm6aFNOD9tcnIXMxAQUSWEWa_IfW3aUKOo0m7xpvjA9MCIkY345YIOscWl4p-cWJHo7ypvBPY/s320/daddys+card+1117.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our last hours with David</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The last few weeks I have found my self growing ever more agitated by my online support community. I realized today that some of it is jealousy. I am jealous of mothers who still have their child alive with them and in their arms. I also realized that some of it is anger. I am angry that a parent who still has their CHD child can complain. Not just general "Oh she is so fussy today!" complaining, but medical complaints. Those who are upset about being in the hospital, going to constant doctors appointments, always giving meds etc. The things that come along with having a child with CHD or any medically fragile condition. I know its just every day complaining.I know its just their frustration.</div><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">To me though, being able to do these things again would be a blessing. I'm guilty of complaining when David was here. I didn't realize how much I would miss that mundane routine. I would have loved to have spent the holidays in the hospital with David. I would have been with him. I would love to be giving him meds around the clock, checking SATs, suctioning his trach, running his feeds, going to constant appointments, not sleeping because I cant stop fearing the worst for him, etc. I would love to be caring for my CHD/trach/vent child. Even with all the frustrating demands.</div><br />
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Would I consider these things a blessing if David was still here? No. Id be complaining. I would do it through any frustration, and love him no matter what. How ever any parent who claims to never complain, is in all honesty, being very dishonest. We all get frustrated and complain. Even parents of healthy children. Its being a parent.<br />
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I cannot complain about them though. I don't get to care for him any more, and that hurts more than words can describe.I think that is what I'm so angry about lately. The fact that I cant and they can. I don't want to look back at how I took all the monotony for granted. I want to complain. I want to get upset when he gets sick and has to be admitted to the hospital. I want to feel scared when he has a heart appointment or an upcoming surgery. I want to whine because he is not progressing developmentally like he should. Like all parents.<br />
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I also want to praise. I want to talk about how well my medically fragile child is doing. I want to brag about his latest achievement at his last therapy session. I want to gloat about his perfect heart check up. <br />
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The day we let David go was the most difficult day of my life. I felt like my entire body was in a vice. I ached all over. As that day drug on, and family came to be with us, I knew that at some point I was going to have to tell the doctors when to let my son die. That would be the last decision I would make for him while he was alive. I couldn't be his mom anymore. I'm still his mother, but I was no longer "in control" and that is hard to swallow.<br />
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All of these things make me angry, and they make me over react to very simple things. The fact is I'm grieving. Ive never lost someone close to me. Ever before David. How unfair that my first loss would be my first born son? <br />
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Currently I am irrational. I am an angry, questioning mother grieving the death of a child. <br />
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I want to apologize to any one who I may have hurt over the last few weeks. I do not intend on being mean. I take what people say and put my anger in it. It then turns into something that offends the memory of my child, not that it is the intention, but thats how I perceive it.<br />
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I'm not sure how to grieve, but I'm learning. I'm trying to let it just come. Currently anger is my most frequently felt emotion. So, I am taking a social network hiatus of sorts. I will be around, but not like I normally am. I will be restricting how much I share my thoughts and feelings. I will not be as prone to offer support and advise. This is for my own self preservation. <br />
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I hope this all makes sense. I felt like this explanation was something I really needed to share.<br />
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Lots of love, HeatherDavid'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com3tag:blogger.com,1999:blog-9011703228293812991.post-90517405673599672442011-12-14T11:28:00.000-08:002011-12-14T11:28:10.780-08:00See you laterDavid left us to go home with the lord on September 21st 2011.<br />
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David went into cardiac arrest at home and was life flighted to Pittsburgh Children's Hospital on September 19th. After arriving he went into cardiac arrest for another 90 minutes in the PICU. The doctors and nurses fought to bring our angel back, but with no luck. He was placed on ECMO, full heart lung life support.<br />
David was doing well the first 18 hours on ECMO, he was responsive to stimulation and it seemed as though the long cardiac arrest had caused little or no brain damage.<br />
On, September 20th while the nurse was doing her assessment, she noticed Davids pupils were not dilating.<br />
He was taken for a CT scan, where they discovered David had suffered a massive stroke, and had a large brain bleed. This came from the large amounts of blood thinners used when someone is on ECMO.<br />
Neurology ran more tests and scans, They informed on the night of the 20th, that David had suffered complete brain death. He would never again be the child we knew. He would never recognize us or even know anyone was there. He would never walk, talk, or play again. The chances of his even being able to sustain life off of ECMO was very thin as he had even lost the part of his brain responsible for survival instincts.<br />
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">That night me and my husband called our family and friends and told them we were letting David go. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEOurHSd8SCvQ72ba-zgHWMtvgQRawKJXjnr8_subpEMopA3GifO2YDdDDTRaU-dbes83AwJzt4NIr0ap0PSWuYOb9JJ_1P-0RP3k6-2rgrZXSYamn5Sc2R64gExIwhm6Jye5YBhzE3jsN/s1600/312520_232873496762440_100001193756382_587487_1159783774_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEOurHSd8SCvQ72ba-zgHWMtvgQRawKJXjnr8_subpEMopA3GifO2YDdDDTRaU-dbes83AwJzt4NIr0ap0PSWuYOb9JJ_1P-0RP3k6-2rgrZXSYamn5Sc2R64gExIwhm6Jye5YBhzE3jsN/s320/312520_232873496762440_100001193756382_587487_1159783774_n.jpg" width="320" /></a>At 4:20 pm on September 21st David was set free</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">Free to run and play and laugh in heaven. No restrictions, no more medications, no more tubes, wires or machines. He was free.</div><div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">David Lee-Ray born on December 19th 2008- entered heaven September 21st 2011.</div><div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">The most glorious 2 years 9 months 2 days 13 hours and 30 minutes of my life.</div><div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">I'm trying to learn how to live without him.</div><div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">He will never be forgotten</div><div align="left" class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">Rest in piece my handsome little peanut, mommy loves and misses you so.</div>David'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com1tag:blogger.com,1999:blog-9011703228293812991.post-28553811383538772282011-09-17T23:02:00.000-07:002011-09-17T23:02:58.345-07:00Busy Busy...<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja5aSNnklLuWYhdJueCjZu235IhPJg7u8pOwQ6lYMnxtVOdGta5jAJol9Qo4gf1ChHwqM8jcFpNGZgQ6Cp6mFIQIFcIIvrqdaTodiwpC2q7Lm-xsVdU4qIH7dpZL6RdwHqqeEYuj8ujZ1g/s1600/big+guy.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" rba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja5aSNnklLuWYhdJueCjZu235IhPJg7u8pOwQ6lYMnxtVOdGta5jAJol9Qo4gf1ChHwqM8jcFpNGZgQ6Cp6mFIQIFcIIvrqdaTodiwpC2q7Lm-xsVdU4qIH7dpZL6RdwHqqeEYuj8ujZ1g/s320/big+guy.jpg" width="207" /></a>The crazy chaotic life which is that of a CHD/trach/vent mommy. We have been busy lately, and getting to my laptop is pretty well impossible 99% of the time. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">In BIG news.....</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">WE ARE PREGNANT!! Baby 3 is on the way!!!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFJQ3nBZ4M5CpVDhgz65kxZFA_wJ79BYizGp1BQWvUDGic-M1M5nTuac6rf8VkIcK6wZKTrWXh9yuUjQ9jTJc_4D-rGB-i31SY2WpXhac66gwn66I-lulStOCInnPK4MAZQomWaTqodNPF/s1600/new+girl.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" rba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFJQ3nBZ4M5CpVDhgz65kxZFA_wJ79BYizGp1BQWvUDGic-M1M5nTuac6rf8VkIcK6wZKTrWXh9yuUjQ9jTJc_4D-rGB-i31SY2WpXhac66gwn66I-lulStOCInnPK4MAZQomWaTqodNPF/s320/new+girl.jpg" width="320" /></a>As excited as we are to be having anouther bundle (which better be my girl!), it is killing my nerves waiting on our fetal ECHO. I'm just praying for a heart healthy baby.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">In BIG David news, his cardiology appointments are now every 6 months! Yep, 2 years of ICU life, less than 7 months at home, and already on 6 month visits!!! He is progressing so well.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7lWJs3jvdHIW9-LI59_sJfuTyW6hf-lj2UZ98RHZ1YLsCLY4g30fbnQubaaqX9AEzsU8C5nnTSF01Qo1opWlUWDqjkLh4oPOTpymYyw6ZqmRYoW7pE6FXp734A01_KbP6mdFWyNcDQYrl/s1600/d+and+me.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" rba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7lWJs3jvdHIW9-LI59_sJfuTyW6hf-lj2UZ98RHZ1YLsCLY4g30fbnQubaaqX9AEzsU8C5nnTSF01Qo1opWlUWDqjkLh4oPOTpymYyw6ZqmRYoW7pE6FXp734A01_KbP6mdFWyNcDQYrl/s1600/d+and+me.jpg" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">He is up to 4 minute sprints off his ventilator! Now, 4 minutes may now sound like much, but for an almost 3 year old with BPD and pulmonary fibrosis, that has been on a ventilator since birth, 4 minutes may as well be 4 hours!! So, yea this is HUGE for David!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Now, in physical and occupational therapy, he is prop sitting for about 5 seconds at a time unsupported and interacting more with other children!! He now says HI, NO, and UH-HUH!!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgfTL5a_WHe1Ghuf3UQHsirnTQXB4KgXYSG6J5JB_FTBY_leHjBdvbhcCf1wmYJA2REi9xHN6ySFQ7zAG_r9_2bn3eLANdUr9W-gKlJZexGC7zcdEdg5BaUru9ZAQns3seq0TNw9z7nhyD/s1600/brothers.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" rba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgfTL5a_WHe1Ghuf3UQHsirnTQXB4KgXYSG6J5JB_FTBY_leHjBdvbhcCf1wmYJA2REi9xHN6ySFQ7zAG_r9_2bn3eLANdUr9W-gKlJZexGC7zcdEdg5BaUru9ZAQns3seq0TNw9z7nhyD/s320/brothers.jpg" width="320" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">With RSV/Cold/Flu season setting in he has been a bit sick lately. Sleepy and very mucus filled, but all in all he has been great!!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Little brother Tony is growing fast!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgJmA8uMNcaQBS8sGH3EC-5Hd1_bV-YmlJ71ssVQ_HkHnEbFWcDDTGN9T2EYvvyLZ_IDYId2TmlHIO8eg8u09-U9vOLC6IishK9gMzAE0PQaY-fHvryR3AfEbDw3fU362YyjT8iz4A_U09/s1600/tony%2521.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" rba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgJmA8uMNcaQBS8sGH3EC-5Hd1_bV-YmlJ71ssVQ_HkHnEbFWcDDTGN9T2EYvvyLZ_IDYId2TmlHIO8eg8u09-U9vOLC6IishK9gMzAE0PQaY-fHvryR3AfEbDw3fU362YyjT8iz4A_U09/s320/tony%2521.jpg" width="320" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">And has become quite the big helper (as seen filling bubbies humidifier lol!)</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8tjR32rF7IMBW0Q3v0ZxBDkfqNEeFE4bH5OZ_sItTq0uM6vSP87colYaiMG6jM03XHoOFgj__ZeXbaf_FADWOM5cPzTTrupmTjKNTdLgaSIoCh_9BM8gVgxSRST5rnMOpwbGxFAqujoR4/s1600/206118_209699795746477_100001193756382_521275_3008733_n.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" rba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8tjR32rF7IMBW0Q3v0ZxBDkfqNEeFE4bH5OZ_sItTq0uM6vSP87colYaiMG6jM03XHoOFgj__ZeXbaf_FADWOM5cPzTTrupmTjKNTdLgaSIoCh_9BM8gVgxSRST5rnMOpwbGxFAqujoR4/s320/206118_209699795746477_100001193756382_521275_3008733_n.jpg" width="320" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">SO, this was my little update!</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">Lack of night nursing may have actually come in handy after all!!</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">(MAYBE I will get Davids Journey updated next....?? who knows!!)</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">Heather</div>David'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com0tag:blogger.com,1999:blog-9011703228293812991.post-50703244027115305382011-01-28T16:20:00.000-08:002011-01-28T16:24:12.482-08:00Wearing clothes!!Now, anyone with a baby who spent any amount of time in the NICU, knows how the very little things can be THE most exciting. Things like sucking on a pacci for the first time. Drinking from a breast or bottle for the first time. The first audible cry. Turning off the warmer bed.<br />
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<tr><td class="tr-caption" style="text-align: center;">Off the warmer!!</td></tr>
</tbody></table>Finally wearing clothes<br />
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A face free of obstruction<br />
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Things that most new parents don't even consider a big deal, are huge milestones to a parent of a NICU baby. It will take David much longer than your average child to reach typical milestones. Like rolling, holding up head and neck, sitting unsupported, crawling, eating solids, using a sippy cup, walking, etc. He is two years old and cant do any of those things. But I know that when David does do all these things, I will appreciate it in a way, that only a parent of a special child can!!!David'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com1tag:blogger.com,1999:blog-9011703228293812991.post-20025030141083154792011-01-27T21:05:00.000-08:002011-01-27T21:07:39.555-08:00Lets get on track.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ1MvIyotPQULXyvMStYm4CSgbRiv6eoEln2J7p218WCSsa8ODqqmSYAc-por_eJ5aNpzzCyGBSX1qHSvTkt5UWev34OfG78DFXUI7_mqVMhBoWxWB8bnXBqDa6002-Rgb1TRf_prYuBfU/s1600/or.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ1MvIyotPQULXyvMStYm4CSgbRiv6eoEln2J7p218WCSsa8ODqqmSYAc-por_eJ5aNpzzCyGBSX1qHSvTkt5UWev34OfG78DFXUI7_mqVMhBoWxWB8bnXBqDa6002-Rgb1TRf_prYuBfU/s320/or.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The morning of Davids first OHS</td></tr>
</tbody></table>I want to apologize for being so "jump aroundish" with my blog. So, I'm going to attempt to get things back on track.<br />
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David has not been in the hospital 2 years because he was "kinda sick". David, up until about 3 months ago was always critically ill. David has spent about 85% of his life sedated, and about 45% of his life paralyzed. <br />
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After Davids trache operation, we had a few good days, but that didn't last. David was on a drug called Prostiglandin (PGE1) from the moment he was born. The purpose of this drug was to keep his PDA (Patent Ductus Artery) open. Now in a healthy infant, or in another CHDer with non compatible defects, keeping the PDA open is life threatening. Its funny that this little duct is what Davids life depended on. David Interruption in his aortic arch did not allow blood flow to travel to his lower body. The PDA kinda "bypassed" that interruption. When David was about 3 weeks old, the PGE started to no longer be effective, and the ductus started to close. This was a BIG problem.<br />
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David went in for a heart catheterization when he was 42 days old and was scheduled for OHS at 48 days old on January 29th 2009. His lungs were getting flooded by blood because of the PDA being opened and it was really effecting his respiratory status. With the PDA narrowing it was restricting blood flow to his intestine and kidneys. David had absolutely no bowl sounds or movement for 8 days. He also was retaining fluid like crazy because of decreased kidney function.<br />
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At 7 am on the day of surgery, we handed our baby off to the surgeon, Dr. Kamal Pourmagadaum. The procedure he was having done was called a Hybrid. This consisted of placing bands around his pulmonary arteries to restrict blood flow to his lungs and placing a stint in the PDA to keep it open. Yes, David was born with Pulmonary artery stenosis, but they were not narrow enough to restrict flow sufficiently.<br />
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David also was born with a VSD and ASD, so his blood was mixing oxygenated and un-oxygenated. This was actually working to Davids advantage. They did not want him saturating above 75-80% because he would be over oxygenating his lungs seeing as though oxygenated blood should never enter the lungs. So in addition to the hybrid, during surgery they went in and actually made the VSD a bit bigger. This helped to bring his saturation's down with out the use of Nitric, which David had been on for 2 weeks.<br />
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The surgery sounded simple enough but when they started the banding part of the procedure David went into cardiac arrest........for 48 minutes. The surgeon performed chest compressions for 22 minutes. His dedication to not letting David go, amazes me to this day. Most surgeons would have called time of death after a few minutes, but not our surgeon, 22 minutes with his hand in Davids chest pumping his heart until he could get it to start on its own. After the first 22 minutes Davids heart would sporadically stop and require compressions again. <br />
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During the surgery my husband and I were pulled from the waiting room into a smaller consultation room. When we walked in we saw the social worker and the chaplain sitting on the sofa. I started crying instantly. I thought they were going to tell me my baby was gone. Instead they told us about what had happened and told us that Dr. Pourmagadaum was pouring his own heart into keeping Davids heart pumping. They prepared us for the fact that David may not come back from the OR and then we sat and waited.<br />
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After about another 6 hours The OR nurse came and told us that David was stable yet critical and that he was on his way back from the OR. They had accomplished all they planned to do, now it was all on David.<br />
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<tr><td class="tr-caption" style="text-align: center;">Fresh out of the OR<br />
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</tbody></table>It was after midnight before we were able to see David.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpzIV8-nEBu5i5r_o_DZmGGKtjPg3R__C-Tkh5vLmxIn0FoUBoJkExHz42q_FIB9yv7e7s_N-yu5_1D3V1HbFrBEQB3n-G00CZc35qSlRb7HDsf9mcBbwbzcYIgwbv6WubemmqDcSiIqai/s1600/o2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpzIV8-nEBu5i5r_o_DZmGGKtjPg3R__C-Tkh5vLmxIn0FoUBoJkExHz42q_FIB9yv7e7s_N-yu5_1D3V1HbFrBEQB3n-G00CZc35qSlRb7HDsf9mcBbwbzcYIgwbv6WubemmqDcSiIqai/s320/o2.jpg" width="320" /></a></div><br />
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The doctors and nurses told us to be prepared. That David may not make it through the night.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy5ivCINk6SczjTtCWSidA5j1RwdwB4PoDIgQ-AzsGr4MXKp2ZI3J8HnqGPSBn4ldssQYLLw5Dleqhb8O5_8Gv6cWY5KjHvZF3rmoQpeA9tAoBjQJ6fbOP9DjLtVAGqyvRQvKrCc9M7PmO/s1600/oo3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy5ivCINk6SczjTtCWSidA5j1RwdwB4PoDIgQ-AzsGr4MXKp2ZI3J8HnqGPSBn4ldssQYLLw5Dleqhb8O5_8Gv6cWY5KjHvZF3rmoQpeA9tAoBjQJ6fbOP9DjLtVAGqyvRQvKrCc9M7PmO/s320/oo3.jpg" width="320" /></a></div><br />
That night was hard. His pressures dropped all through the night, he spiked temperatures several times and his heart rate shot up over 200 a few times that night.<br />
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Over the next few days David made slow progress, and actually recovered amazingly well :) Davids recovery lasted about 2 weeks, then he was moved back to the NICU. For about 2 weeks, things were going well. That again, didn't last.....................David'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com0tag:blogger.com,1999:blog-9011703228293812991.post-15501365211393585652011-01-02T10:05:00.000-08:002011-01-02T10:11:35.361-08:00Almost Home <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgEnQx9dQgJ63vbS-hMjephnXIbi56ZdXFiKsNbNGb0iZmTyxTJXiYhRrUuKzT3t_pM1Dtk1QkwWdRJdNmFh6hxPmMoD72t8BQ4PyFOnmmQR9oJ9KeRZaUY1DnJBt8v06LiN0kr3xUDB6a/s1600/1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgEnQx9dQgJ63vbS-hMjephnXIbi56ZdXFiKsNbNGb0iZmTyxTJXiYhRrUuKzT3t_pM1Dtk1QkwWdRJdNmFh6hxPmMoD72t8BQ4PyFOnmmQR9oJ9KeRZaUY1DnJBt8v06LiN0kr3xUDB6a/s1600/1.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Davids Birthday</td></tr>
</tbody></table></div><div style="text-align: center;"> <span style="color: #073763; font-family: Georgia;"> I will always remember the feeling I had, the first time I saw David after his birth. It was horrible seeing so many things covering his poor little body, me not knowing if he was in pain.</span></div><div style="text-align: center;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0pfUlYCASHmBj5QJ46MX55WIv9iq-HgSp32Wq0DYYBWj9pfBXUxE7GEiHiWfNJY3a1vPxOnYtq9Q7SmFGmtPwrEAAAGGUKA3uafSqUUtJ8cZ1ABkNsfj0Dmusu9wM3YFnedTvR0c55GlW/s1600/002.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0pfUlYCASHmBj5QJ46MX55WIv9iq-HgSp32Wq0DYYBWj9pfBXUxE7GEiHiWfNJY3a1vPxOnYtq9Q7SmFGmtPwrEAAAGGUKA3uafSqUUtJ8cZ1ABkNsfj0Dmusu9wM3YFnedTvR0c55GlW/s1600/002.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">12 hours old</td></tr>
</tbody></table></div><div style="text-align: center;"> <span style="color: #073763;">All I could do was cry. I just kept thinking "Will he be ok?" and "Why him?"</span></div><div style="text-align: center;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtCx7Iti6iiq1wJsUn8sSc85sW97bm83vAM8ZwPNJ7vyf7O4fDpCLlZtkutB7ucrSOjoPvrSmHilVssCJeZHsQ017o0i9C2I6gbl5SudXyA7146NIHnwDyxw4J8hv3G2oiu1j6aVB0e-Rq/s1600/00.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtCx7Iti6iiq1wJsUn8sSc85sW97bm83vAM8ZwPNJ7vyf7O4fDpCLlZtkutB7ucrSOjoPvrSmHilVssCJeZHsQ017o0i9C2I6gbl5SudXyA7146NIHnwDyxw4J8hv3G2oiu1j6aVB0e-Rq/s1600/00.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After Transport</td></tr>
</tbody></table></div><div style="text-align: center;"></div><div style="text-align: center;"><span style="color: #073763;"> The last two years have been hard on us all. Especially David. </span></div><div style="text-align: center;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_OeMqscAiuABNP5_3Jmm5AX6ONzvy7dN7KfnEPghYRUwi94NTusxE85UPPKHjpd7t_XfIJgBI7Ku14jv1FFUYAekR8hZL0WCAasiAogXRpysCruJX5Q5cNkg7vStctjsWtap6uaPkVrx-/s1600/003.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_OeMqscAiuABNP5_3Jmm5AX6ONzvy7dN7KfnEPghYRUwi94NTusxE85UPPKHjpd7t_XfIJgBI7Ku14jv1FFUYAekR8hZL0WCAasiAogXRpysCruJX5Q5cNkg7vStctjsWtap6uaPkVrx-/s1600/003.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After Tracheotomy</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;"> <span style="color: #073763;">After many surgery's, " I don't knows ", sleepless nights, and being scared beyond belief numerous times. David is doing well.</span></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijuHHvehMLd-wv9Z-QH54r3xkM4yra5krHGTFiXCgWKpluMjc9T3W9PhCY3Uz8x6gKFqYsWEm9fAkH37Rozsk5d1Se0IT6pRWM-Qw7yKk1oQQOG_XdbdSSvYcwz4PRMQh4IeRc03chl8ON/s1600/bling.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijuHHvehMLd-wv9Z-QH54r3xkM4yra5krHGTFiXCgWKpluMjc9T3W9PhCY3Uz8x6gKFqYsWEm9fAkH37Rozsk5d1Se0IT6pRWM-Qw7yKk1oQQOG_XdbdSSvYcwz4PRMQh4IeRc03chl8ON/s320/bling.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><span style="color: #073763;">After two years of hospital life, David is finally almost able to come home. We are set to be home next week. We have lived in hospital ICUs for two years, and I'm wondering how it will be at home. Will I know what to do? What if I mess up? Will he like it at home? Will my family be as supportive as they say they are going to be? I am ready for his homecoming, but a little nervous.</span></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><span style="color: #073763;">WELCOME "ALMOST" HOME DAVID</span></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div>David'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com0tag:blogger.com,1999:blog-9011703228293812991.post-81884673990766884042010-10-10T11:32:00.000-07:002010-10-10T17:37:56.894-07:00I'm ONE !!!!!!!!!!<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSiw70gc6MPBhvbD_mQdlGdVSJ6HeYlI_qsbfMDcbAvYzU6QmoFtzJMw3nrnXCDJbplZ9y6FTVXYuwoiSbWVwzGCrvdZVknrpBCpbeAAXlEUrjwldOlEBa79a_A6iyzNxSkZHWYDLk2CqK/s1600/CARD+4+122.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" ex="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSiw70gc6MPBhvbD_mQdlGdVSJ6HeYlI_qsbfMDcbAvYzU6QmoFtzJMw3nrnXCDJbplZ9y6FTVXYuwoiSbWVwzGCrvdZVknrpBCpbeAAXlEUrjwldOlEBa79a_A6iyzNxSkZHWYDLk2CqK/s320/CARD+4+122.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">MY FIRST BIRTHDAY!</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"> As Davids 2nd birthday is fast approaching, I feel compelled to share his first birthday. Davids birthday was not by any means a "typical" first birthday. It was celebrated in the PICU. He was just getting over a very nasty infection that had him on paralytics and sedation for 4 weeks, and he was still on a slow fentonyl drip. He was quite sleepy and a bit agitated that day, but he was still surrounded by many family and friends, and also by MANY doctors and nurses. The wonderful staff at the hospital threw David a "surprise" party, all though the surprise was really more for me and my husband! We walked in that morning to find balloons all over Davids room, cards from staff, and a beautiful cake and ice cream on his counter. I cried! They didn't have to do this, how selfless of them all to try and make Davids day as "normal" and a special a day as possible. The staff made that day so special. </div><br />
Me and my husbands favorite part of that day was the look on Davids face when he got his very first taste of any thing other than calcium, and neo-sweet. I was so surprised when the doctor told me to give David a taste of the icing. His cleft pallet allows food to get into his airway, and it can get into his lungs. Being vent dependant on top of that has never allowed David to eat by mouth.The look on his face was priceless. His lips smacked, his tongue rolled, and every time my hand went back towards his face with more he practically DOVE to my finger! He enjoyed it so much. The staff at the hospital had gotten him a few gifts. A couple blankets, t-shirts, and a stuffed toy or two. The staff there is what got us through that day smiling. We were so devastated that our little miracle had to celebrate his birthday in the hospital. We quickly came to realize that no matter where we celebrated with David, we were just grateful to have him here to celebrate with.<br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">David had dozens of gifts from our family, I had the bright idea to have David "open" all his gifts, its just not the same if we open them for him. This look about 5 hours! He has very little reserve so after about 10 minutes of opening gifts he would get mad and take about a 20 minute nap and then be ready to go again.! Like most children, Davids favorite gift that day was the packaging! He fell in love with a bundle of colorful ribbon and actually slept with it that night. We tried taking it, but he wasn't having that! We had a wonderful day, David smiled and laughed soooo much that day and that was all I needed. So after cake, ice cream, and opening gifts, we ordered a pizza and watched Finding Nemo!!!!!!</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">The best birthday party I ever attended was HANDS DOWN my Little warrior Davids first birthday celebrated in the PICU! How strange will that sound to the "average" person? It was a wonderful day full of laughter and wonderful memories, and a couple new experiences for David! </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqdgHgPMAKMB4PISH0ph_U2RVwH072cuWFONrDL7ghitlZnhQGQkttPqBrzVxZoRfftmHMmUMGmOdQMNxFpVd4zelxSqwdT-k4QMZ6y8jl9eG56kQrvzLh3PBHkdk1DPBuSPZpLmXNnOnF/s1600/CARD+4+114.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" ex="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqdgHgPMAKMB4PISH0ph_U2RVwH072cuWFONrDL7ghitlZnhQGQkttPqBrzVxZoRfftmHMmUMGmOdQMNxFpVd4zelxSqwdT-k4QMZ6y8jl9eG56kQrvzLh3PBHkdk1DPBuSPZpLmXNnOnF/s320/CARD+4+114.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My first Taste of "real" food!</td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">David will be two years old on December 19th! I'm praying we will have him home for his birthday, but If we have to celebrate in the PICU again, that will be OK. We will be together, as a family, celebrating two years of life for a child whom we were told wouldn't make it past 5 months! Watching him laugh and smile, making sure it is a day like no other!!!!!</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxx40KnV1EsKJJNnvyhJavc2KTSQRC9qZfTAe6h1ALq7hROBrs7B2aRVeILmqBs-ljQy4GaGq8RuwYAmEE26VSPl_wcB_9FhDOPGk3x06WyN_Pd3kjmN0gygyFFR9u2z6HpZhOn7-PwxPQ/s1600/CARD+4+124.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" ex="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxx40KnV1EsKJJNnvyhJavc2KTSQRC9qZfTAe6h1ALq7hROBrs7B2aRVeILmqBs-ljQy4GaGq8RuwYAmEE26VSPl_wcB_9FhDOPGk3x06WyN_Pd3kjmN0gygyFFR9u2z6HpZhOn7-PwxPQ/s320/CARD+4+124.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My favorite present!!!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQzPIEVfNdzWz3EsX2s9BttcfryV4rGWjWCl8T8YdsLCjhc5VHLxjw1TKW82DUYWem1fSdlvHSqiU6djF1vE29hyphenhyphen8EXgxc7IpaVjjOQ5c65vxA67yV8zVWZL5AHCGmSGvIujkQAq-h2LIX/s1600/CARD+4+116.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" ex="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQzPIEVfNdzWz3EsX2s9BttcfryV4rGWjWCl8T8YdsLCjhc5VHLxjw1TKW82DUYWem1fSdlvHSqiU6djF1vE29hyphenhyphen8EXgxc7IpaVjjOQ5c65vxA67yV8zVWZL5AHCGmSGvIujkQAq-h2LIX/s320/CARD+4+116.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Messy face! :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNqSWO6iaIGRjA1y1i9mICpFowG5B6zL9uM11OusQceOqk-IPLrHboFh4Gj9drDSsHm1OpbA3tBbrPsm84nY0rlHkLDdAky384SE3aJlb3MawNPVA-7PMgh-OP4YzsUpCtkrPRnQtgcFyD/s1600/CARD+4+109.JPG" imageanchor="1" style="clear: right; cssfloat: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" ex="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNqSWO6iaIGRjA1y1i9mICpFowG5B6zL9uM11OusQceOqk-IPLrHboFh4Gj9drDSsHm1OpbA3tBbrPsm84nY0rlHkLDdAky384SE3aJlb3MawNPVA-7PMgh-OP4YzsUpCtkrPRnQtgcFyD/s320/CARD+4+109.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">To cute huh?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMikDkGdob3mnc3bW6xSjUKt4I2pS4YqOH_fyTjpV2EniKGjjvYeg-BkYPHY38JjkcvdKPvLUo2j0i6V1ydIvbX40BUkJErxsMOdc4F9FdL73P20JzqHBY4iyg0Yop0kDDt_3J6sSoOaAA/s1600/CARD+4+113.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" ex="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMikDkGdob3mnc3bW6xSjUKt4I2pS4YqOH_fyTjpV2EniKGjjvYeg-BkYPHY38JjkcvdKPvLUo2j0i6V1ydIvbX40BUkJErxsMOdc4F9FdL73P20JzqHBY4iyg0Yop0kDDt_3J6sSoOaAA/s320/CARD+4+113.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My banner!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqZSp_2T2ccQBXMdb0368PJ-o-ORCspasnd6hemYJ3GKhLevRZBkK-Y6GsZnjbiZW_gAPkM9WqtzzrOTWLb4xmxfnkS69pZfZ9bFOqOTB-3QUUiF4rZYfMv-xs0X0ufScVk2CGmbHli5eT/s1600/CARD+4+112.JPG" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" ex="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqZSp_2T2ccQBXMdb0368PJ-o-ORCspasnd6hemYJ3GKhLevRZBkK-Y6GsZnjbiZW_gAPkM9WqtzzrOTWLb4xmxfnkS69pZfZ9bFOqOTB-3QUUiF4rZYfMv-xs0X0ufScVk2CGmbHli5eT/s320/CARD+4+112.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The cake the staff got me!!</td></tr>
</tbody></table>David'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com0tag:blogger.com,1999:blog-9011703228293812991.post-1364329101878399782010-10-04T16:09:00.000-07:002010-10-04T16:09:17.295-07:00A Breath of Fresh AirI left of watching my baby begin driven away from me, off into the blinding snow. Me and my husband followed the ambulance as far as we could but eventually went our separate ways. I was so devastated. I couldn't wait for the morning, for the roads to be clear for the drive down. We went to my mothers for a while and talked about David for hours before finally heading home to pack our bags and get some sleep for our trip the next morning.<br />
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At around 8:30 the morning of December 20th we left, the 2 1/2 hour drive seemed to last a lifetime but we finally arrived at the hospital. I was so excited to finally be with my son but nervous at what the doctors may tell me. When we got into the NICU I was so relieved. He looked wonderful. He was awake and looked so happy. Even through the breathing tube and all the IVs he seemed just perfect. I just didn't understand how he could look so amazing but be so sick. The nurses talked to us about Davids night and said that for the most part he had a great night. But at one point during the night his breathing tube came out, they left it out to see how he did, but it only lasted a few minutes. He stopped breathing and almost fell into cardiac arrest. They ran into the same problem as the transport team did, his breathing tube would not go into his airway. <br />
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The doctors came out a short while later and explained to us that Davids chin was severely receded and that it was causing his tongue to press against his airway, almost closing it off entirely. They then started talking about a Tracheotomy. This would give David a permanent and secure airway so that issues like this would not occur again. I was not to sure about this at first, but after a few days spent with David, I was quickly convinced. He was constantly tugging at his tube, I felt terrible always pulling his hand away, but I was so afraid of the tube coming out.<br />
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Finally on December 30th, at 11 days old, the day had come. My husband was at work, so an aunt and uncle came down to keep me calm during the surgery. His time ended up getting changed and he didn't make it to the OR till 3:00 pm. My aunt and uncle left hours before. he was originally scheduled to go at 8:00 am and they were not able to stay. So there it was, David and I, waiting. I cried while holding his tiny body against mine, praying to god to keep him safe and bring him back to me. <br />
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I didn't want to let him go when the OR team came for him, but eventually the nurse talked me into placing him back in his bed. I gave him one last kiss and whispered "I will see you soon baby, Mommy loves you." and he was gone. I went to the waiting room and tried my best to rest, but I was to nervous. Eventually one of the NICU nurses came out to check on me and noticed I was very upset. She called the chaplain to come talk to me. He helped me out so much, more than he may ever know. Before I knew it 3 hours had gone by and the ENT surgeon came to talk to me. David did GREAT! Not an issue at all! Praise the LORD! She said that the incision was clean and nice, and the trache tube went in without a problem. She told me it would be about another 30 minutes for the nurses to settle him in, but then I could go see him!<br />
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I COULD SEE HIS FACE!! All of it, he was so handsome! He had a bit of swelling, and 4 bits of string taped to his chest, in case the trache came out, these would be used to hold the stoma open until they got a new trache in. After a week the strings would be removed because the site would be healed enough that we wouldnt have to worry about getting anouther trache tube in easily. I was not able to hold him but to kiss his cheeks was wonderful. Awwww the simple things. We now had a secure airway. No more worries about his tube falling out!<br />
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Our first surgery done and over. Little did we know it would be the first of many. But, for the time, things where good. We had a safe airway, a true breath of fresh air!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhImOpxvCtvfoua-urOPlzIH1A09UUmxPbg7GQ58mDpQoTUrGJV7I0E6VArl9QVg01VblaL6QsJP2UEf8q0Wc5lH5oAwJau9e1_xNvNJ-4j4_13yLGfYAIZ3gtFveXBsm8pq-H5E2d_zYL1/s1600/phine+card+407.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhImOpxvCtvfoua-urOPlzIH1A09UUmxPbg7GQ58mDpQoTUrGJV7I0E6VArl9QVg01VblaL6QsJP2UEf8q0Wc5lH5oAwJau9e1_xNvNJ-4j4_13yLGfYAIZ3gtFveXBsm8pq-H5E2d_zYL1/s320/phine+card+407.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our new airway!</td></tr>
</tbody></table>David'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com0tag:blogger.com,1999:blog-9011703228293812991.post-47008884446652985972010-10-03T19:48:00.000-07:002010-10-03T19:52:35.152-07:00Here comes David!<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh380fq7Z_Sq64oUzW3P9U7-ZIg7BPmAoSn27yNmcu0OO_Ou635QfgPox2PYX3jsjwUkQHx-keCAYWIn2LXuP1DtlO702l11YC-pN-0Ifk6IQmewSnqoA9Tr_8WIDbvJGSQh-JgNJV7LCJP/s1600/phine+card+405.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh380fq7Z_Sq64oUzW3P9U7-ZIg7BPmAoSn27yNmcu0OO_Ou635QfgPox2PYX3jsjwUkQHx-keCAYWIn2LXuP1DtlO702l11YC-pN-0Ifk6IQmewSnqoA9Tr_8WIDbvJGSQh-JgNJV7LCJP/s1600/phine+card+405.jpg" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Davids premature birth I guess you can say was "expected". I had an excess amount of fluid during pregnancy that put me at risk for preterm labor. When I was about 28 weeks pregnant I starting having a lot of issues with not feeling David move, and having mild contractions. After several doctors visits and hours on a fetal monitor, which did determine that David was moving I could just not feel it, we were sent for an ultra sound. The doctors where concerned with my size, I was VERY big for 28 weeks, but we found out, it was just extra water! This explained why I couldn't feel David move, he was swimming! It also had me placed on bed rest, but they allowed me to rest at home. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Selfishly one day I decided I was sick of staying at home and begged my husband to take me to the park near the river where we live so I could feed the ducks. All was fine until we were about to leave and I was walking to the garbage can to throw away the bread wrapper. At 2:50 pm on December 19th, my water broke! My husband rushed me to the hospital where they confirmed my water had in dead broke. I was 33 weeks and our local hospital has no NICU, so they got me ready for the ambulance ride to the hospital where David would be born.</div><br />
I remember crying so hard, I was so scared for my baby. I kept saying he isn't ready, he is to little, he needs more time. Well, David had plans of his own! After a 20 minute ride we reached the hospital. The nurses where gentle and understanding and for that I will forever be grateful I was so afraid for my baby boy.<br />
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They immediately started me on Pitocin to increase my contraction frequency and strength. After 12 hours our handsome baby boy made his debut, weighing 3 lbs 13 oz and measuring 16 1/2 inches long! He was beautiful. The nurses took him and cleaned him up and allowed me and my husband to give him a quick kiss and they raced him to the NICU for evaluation.<br />
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After a 6 hour wait the doctor and a nurse entered my room, looking nervous. Me and my husband glanced at one anouther and I started to cry. They explained to us that David was born with a CHD. Wait, what? No not my son, sure he is small but other wise healthy, they must be mistaken. Unfortunatly, I was the one mistaken. They explained that Davids heart had several defects, but didnt give us details. All we knew for sure is that within the next few hours a transport team would be arriving from a childrens hospital to take our baby away for long term treatment. <br />
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Not exactly what a first time parent expects to hear. We both fell apart. My husband called our familys and gave them the news. About 30 minuites after the talk with the doctor they finally let us go see our son. It was such a horrific yet glorious sight. So many lines and tubes. He was on a ventilator to help his tiny underdeveloped lungs breath, so we couldnt even see his entire face. My tears turned to smiles when the nurse said "Do you want to hold him?" OF COARSE! It was the most amazing feeling in the world but it at the same time broke my heart. My helpless little bundle of joy was so sick. Was he in pain? Why couldnt they fix his heart here, now, TODAY? I just wanted to never let him go. Me and my husband took turns holding him and where then asked to leave as the transport team had arrived, and needed to get him ready to go. <br />
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I told the hospital staff I would be leaving the moment he did, and to my surprise, they did not argue. I went to my room changed my clothes and my husband took my things to the car. I then eagerly went back to the NICU to wait for my son to be ready for us to leave. I was then informed that I would not be able to travel with David in the ambulance. My heart sunk again. I wasnt ready to hand my child over to complete strangers. It was to much to ask of a new mother. <br />
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My concerns quickly went from Davids trip to David well being. The transport team had to change the type of breathing tube on David to a full intubation tube and they could not get it into his airway. He went into cardiac arrest. My heart stopped beating with his, he was blue and completley limp. Please GOD dont take him away, give HIM a chance. <br />
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The team finally got the tube in and after a few chest compressions, he was pink again! THANK YOU LORD. At only 12 hours old my sweet innocent baby was ready to go, more than 120 miles away, to the hospital that would fix his broken heart.<br />
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The day David was born we had a terrible snow storm. The tires on our car where bald, and it had numerous other problems. We would not be able to follow our son, not be able to make the trip with him at all, if even just to follow. Me and my husband stood there helpless in the snow and watched a team of strangers drive of with our son, take him away, into the blinding white snow.David'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com0tag:blogger.com,1999:blog-9011703228293812991.post-72285480191606750942010-09-15T19:31:00.000-07:002010-09-15T19:31:43.445-07:00The begining.I am knew to blogging, so please bare with me. My name is Heather Whittington. I am the proud mother of a very strong CHD warrior. My eldest sons name is David. He was born with a Congenital Heart Defect (CHD). This means that a heart defect is present from birth ( born with a broken heart). He has several heart defects but that will be anouther blog. I am starting this blog in hope to connect to a few people in a situation like ours. My son was born in December of 2008 and has been in the hospital ever since. Yes, he has never been home. We are not your average family. My husband and I and our youngest son Tony, live more than 150 miles away from the hospital where our son is treated. Our situation now is very routine to us, we simply have a son who we have to travel to see, no biggie. Most people I meet or talk to cannot relate to having a critically ill child so I have very few people to talk about David to. <br />
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David has 22q11 deletion/VCFS/Digeorge syndrome. This is a deletion of the portion of the 22 chromosome. He was born with several issues, not only his heart. He is Trached and Ventilator Dependant. This means he cannot do all his breathing on his own and requires a fairly great deal of mechanical ventilation. I am always in pain and cry every night because I cannot hold my son on a daily basis. I cannot hug him or kiss him or tuck him in at night. He is so far away. I think about him laying lonely in the hospital ( which is not true...he gets Tons of attention from the staff whom absolulty ADORE him) and how I wish I could just watch him sleep, or run my fingers through his hair. Having a long term hospitalized child really makes you see life differently. To have them so close yet so far away. To know that someone else is tucking him in, dressing him in the morning, brushing his hair. Thats a mothers job....right? <br />
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I feel helpless. Like there is a monster keeping my family seperated, and no matter what I do, no matter how hard I fight, the monster always wins,and he stays, so far away from every one who loves him, from his family. I sometimes look at it like a test or a lesson, but what am I supposed to learn. What is my lesson, how do I, or any of my family, especially David benefit from this never ending nightmare? <br />
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David has has several surgerys/procedures during his hospitalization. A little history:<br />
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-First OHS (open heart surgery)-48 days, second OHS-5 months, third OHS-10 months<br />
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-Trachiotomy-11 days old<br />
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-Gasteric Tubaliation and fundoplication- 4 months<br />
<br />
He has had 5 heart Cathederizations, suffered renal failure, had an exploratory laparotomy done at 11 months old. He constantly suffers from infection, he is tube fed, a machine breaths for him, he has had several broviac lines (long term IV's) placed. every other day xrays, constant tests and scan, twice a day blood work, Lovinox shots twice daily as a blood thinner, severe cognative and developmental delays, and to much more to list tonight. Ill explain more anouther day<br />
He is almost 2 years old and cannot walk or talk. Thats probaly one of the hardest things for me to deal with. The simple things mean the most. I think I will return tomorrow!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi78S8MzQS-HOr4vw5GjmPrNf1Ds8PWm50xlj80Yx5HCtXoJTPHxL7msVpxbshJ5h5gxYvcwQegKr0K3vsE2AXjQBnKom6oJTyLemtIVw6Qf0OAEb39MwI3hiEOXZlJIUhuez_uuYlshl8R/s1600/phine+card+909.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" qx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi78S8MzQS-HOr4vw5GjmPrNf1Ds8PWm50xlj80Yx5HCtXoJTPHxL7msVpxbshJ5h5gxYvcwQegKr0K3vsE2AXjQBnKom6oJTyLemtIVw6Qf0OAEb39MwI3hiEOXZlJIUhuez_uuYlshl8R/s320/phine+card+909.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Handsome Little Warrior</td></tr>
</tbody></table>I hope I "Blogged" properly, <br />
<br />
David's MommyDavid'sMommyhttp://www.blogger.com/profile/00904337974359662016noreply@blogger.com0