Hannah Rose Pavalock
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Hannah Rose spent the first 4 months of her life in All Children’s Hospital in St. Petersburg, FL. She was transferred there from our local hospital at 4 days old. She was transferred due to her heart defect
(VSD). They did not have any pediatric cardiologist here at the local hospital.
Hannah was also born with Cleft Palate. I believe I passed it on to her as I was born with a cleft as well, more severe then hers. Hers was just a small hole of the soft palate. Hannah was born 4 weeks early via planned C-section. I had a somewhat difficult pregnancy a lot of preterm labor starting around 30 weeks. My first daughter was born via emergency c-section and later died the next day. That is why we planned on having a c-section this time. I had also had a lot of excessive amniotic fluid, so I was huge and uncomfortable by the time I hit 36 weeks.
Hannah came out weighing 6lbs. 10oz. She was screaming her head off. I cried the moment I heard her voice. Then when they told me she had a cleft palate I cried again. I didn't want her to go through what I did. Then I thought it could be a lot worse.
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Skipping through some time frame....Hannah has been through quite a lot. She has been septic times 4. She was thought to have RSV times 2, but the results came back negative. She had NEC. She had to have malrotation surgery of her bowel because it was reverse of what the position should be. Her appendix was also on the wrong side so they took it out. She had a G tube placed. Her breathing issues didn't come about until 2 months old. She started in with
strider and sternal retractions. We couldn't understand it. She was maintaining her O2 levels just fine. Then the doctor comes to us with the news that she needed a trach. They couldn't explain why she was having the breathing problems. She had a
bronch and ridged endoscopy and the anatomy was all normal. They felt that b/c she had a small chin that her tongue was causing the airway
obstruction, Pierre Robin Sequence. We decided to look into other options more. Finally it came down to the trach. When the ENT took her into surgery they looked one more time, called us and said there's nothing wrong, she will need the trach. He came out after surgery said he did not feel that her jaw was small enough to classify her as PRS. She just had a slightly larger tongue than normal and it was just positioned back further. With growth he said she would have the trach
removed, 2 years old at the latest he said for other babies like her.
Hannah Rose was released from the hospital on her 4 months birthday. We were so happy to finally have her home. We made the hour drive to the hospital everyday to see her, now she would be right here with us. Hannah did great for a month and a half. Then she landed back in the hospital. She had a hole in her stomach and bowel adhesions from the previous surgery. They thought that the G tube rubbed up against her stomach and it ulcerated. She was so close to
dying, very very ill. She bounced back after surgery. The next month back in the hospital for respiratory distress. A cold that just hit her hard and fast. Then back in a month later for cleft palate repair and tubes in the ears. She flew through that one and was home the next day.
So far so good. She hasn't been sick for the last month and a half. She has finally been home longer than she has spent in the hospital. She turned 9 months old on 4-24-04. Our next step is a
decannulation attempt at a year old. I thought that she had a good chance because she always sticks out her tongue now and has really good oral control. The only problem is that she cannot tolerate the passy murior valve. She needs to tolerate that to get decanulated. This Friday they are going to put one size smaller trach in to give her a better chance to pass air around the trach and start breathing through her nose. Wish her luck. I'll keep all of you updated.
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Update, Jan 2005: On October 22, 2004 I was doing Hannah's routine weekly trach change as I have done time and time again. This time was different, for some reason I couldn't get her clean trach in. It wouldn't go in. I tried several times, but the whole kept getting smaller. I called my mother (a nurse) and she came over and tried herself 2 times. So we ended up calling 911, even though she was breathing fine on her own. They came and took her to the hospital. The hospital staff tried to put the trach back in 2 times and they couldn't get it in. They contacted All Children's Hospital in St. Petersburg, FL where she gets all her care and they told the hospital to discharge us and have us drive up to All Children's. The ENT doctor would be waiting for us. We arrived at All Children's 6 hours after her decannulation. Her doctor was at the door waiting for us. He had the trach in hand and wanted to put the trach right back in. I pled with the doctor not to put the trach in, to admit her into the hospital and do a sleep study. While at the first hospital her oxygen levels were 98-100%, she was not struggling to breath she was as happy as could be. She also took a nap at the first hospital and she did just fine with her oxygen levels. The biggest thing was that we could hear her voice. We hadn't heard her voice since she was 3 months old. It was the best thing in the world. After some more pleading the ENT doctor said ok, let me call pulmonology and see what they think. He came back and told us she would be admitted for observation and try to get her in for a sleep study ASAP. Hannah had her sleep study 3 days later. The results came back as a borderline study. So they looked at other options. To remove her tonsils or adenoids. That wasn't an option after tests were done. So they wanted to take her in for another sleep study w/ oxygen. They couldn't get us in so they discharged us after 6 days in the hospital. We were scheduled for a sleep study 4 days later. Which ended up getting postponed because Hannah got a cold. We finally got the study a couple of weeks later and the results came back great!!!! No oxygen needed, nothing needed!!! She's trach free! It's the best thing in the world. Hannah is doing wonderful now.
She used to vomit every day several times a day. When she got secretions and that would make her cough to get them out she would then vomit. That stopped right after the trach came out. She's now saying Mama and Dada and Uht Oh! She cries, she whines, and she laughs!!!
Hannah Rose had her trach just shy of one year. Her stoma is completely closed. It's looking better every week. She has also gotten her G-tube out on Dec. 14, 2003. Now all we have to work on is her physical development. She’s slightly delayed with pulling her self up onto things and not quite walking by herself. Those are things that she can easily catch up on.
Update: September, 2006
Hannah Rose is doing just wonderful. She is thriving in so many ways. She's 3 years old now. Will be starting school in the next couple of weeks. She has gotten a few of her specialist under he belt so we don't have to see as many doctors now. The only on going health issue now is her ears. They have found mild to moderate hearing loss in both ears so she was given hearing aids 2 months ago. It was a shock to my entire family as we did not notice any hearing loss. Even with her hearing aids we don't see a difference in her hearing. With age and better attention span for hearing tests we will get to see how bad her hearing is. It may not be as bad as what the doctors think. Hannah is the light of my life. I enjoy making clothes for her and dressing her up all girly. Here is a recent photo of her wearing her tutu I made her. We love you Hannah Rose.
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