What a long road my little girl has had. She was born 10 weeks early weighing 3 pounds 9 ounces and was 16.75 inches long. She was whisked off to the NICU, which would be her home for the next 46 days. She started out with some help breathing but was never on a ventilator. She spent 21 of her 46 days in the NICU on supplemental oxygen of some kind. She needed the nurses to remind her to keep breathing sometimes and was on IV caffiene to help keep her stimulated. She ate through a tube until about week before she came home with us and had some reflux issues so her feeds were done through a pump over anywhere from 30-90 minutes. During her stay, she was diagnosed as severely anemic and received two blood transfusions. Her numbers were very slowly recovering (almost too slowly) and the docs were somewhat stumped. We were given discharge orders to follow-up with the pediatric hematologist (which is essentially an oncologist - so that was really scary). She was also diagnosed with a few different heart problems. The first being a PDA (patent ductus arteriosus) which is when a little blood vessel in the heart doesn't close as it should before birth. She was given medication and it resolved without further intervention. The second was an ASD (atrial septal defect) in which the wall that separates the upper heart chambers (atria) does not close completely causing a Grade 1 (very faint) Systolic Murmur. We were given discharge orders to follow-up with a pediatric cardiologist. She had an eye examination to check for ROP (retinopathy of prematurity) which is abnormal blood vessel development in the retina basically caused by lack of oxygen (or too much supplemental oxygen) or simply just being born too early before the eyes completely develop. She passed, for her age, but her eyes were still immature and there was still a chance of ROP so we were given discharge orders to follow-up with the pediatric opthamologist. It was also recommended that we follow-up with a developmental pediatric service since she was a preemie at risk for developmental delays. She suffered from some pretty rough reflux in her first couple weeks at home so we also had a gastroenterologist to visit too. On top of that it was RSV season and she qualified for the Synagis shot that is done by a special pediatrician, not our own. Our discharge orders included follow-ups with 6 different specialists and our own pediatrician.
My poor little girl had 7 doctors.
Now she has ONE.
Her regular pediatrician. That's all.
She has "graduated" from all other doctors!!
We had our second follow-up with the cardiologist today. EKG: normal. Echo: normal. Murmur: gone. ASD: completely closed. Follow-up: NEVER! I was so happy to get that news that I almost burst into tears! I have been especially worried about Emily's heart defect lately because of the H1N1 virus (and lack of vaccine availability for <1>
Now, all that celebration aside, she does still have two appointments on the books with specialists. We're supposed to see the developmental folks in November but considering she's developmentally a 9 month old (per her regular pedi) and she's 9 months old, we'll probably cancel that one. She also has a follow-up with the opthamologist after she turns one but that's just a plain old vision check.
Oh - and by the way - I gave her birth measurements above so you could see how much she has grown. She is now 19 pounds 9 ounces (well, she still had her diaper on for that one today) and she is 26.75 inches tall. Weird, huh? From birth to today, she has gained 16 pounds and 10 inches. She's growing like a weed and we don't mind at all.
It was great news! A good day! James is off tomorrow and Friday so we have even better days coming (if the stupid rain will stay away). Saturday is Emily's first Halloween and Megan's first time trick-or-treating so that will be fun (hopefully) and James and I are going to a party that night (costumes still TBD - ugh!). DATE NIGHT! What? Really? WOW!
This pic was taken 1/15, 11 days after she was born.
It was the first time I held her.
Should give a good idea how small she was.
And here's the little monkey, just this morning!
Crawling on all fours like a big girl!!
2 comments:
The girls are just gorgeous Jen! So glad Emily has done so well :)
That is all great news. Her ASD has already closed?! Keaton has a VSD and as of last year he still had it. We don't have to go back to the cardiologist until he turns 9 so that signifies it is not a major problem, I just want him to graduate too!
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