I've posted on here a few times, and some of you may remember my story, but I know there are a lot of new names on here, so I thought I'd re-introduce myself and my dd.
I'm a mom of 3 girls (oldest is 4-1/2 and the twins are 2-1/2). The twins developed Twin to Twin Transfusion Syndrome (TTTS) while I was pregnant, and at 20 weeks I was placed on bedrest for the remainder of my pregnancy. I delivered them 6-1/2 weeks early, but one of the twins was born with a LOT of medical issues (the other one was fine, aside from normal preemie issues of being able to eat and maintain body temperature effectively). First, Lily was born with something called esophageal atresia (a condition where your esophagus isn't connected to your stomach); it was, however, connected by a little tube (fistula) to her airway, which could cause aspiration pneumonia if not repaired. She underwent surgery later that evening to attempt repair. While they were able to repair the fistula, her esophageal gap was too long at that point to be repaired, and we had to wait until she was bigger and the gap was smaller. A feeding tube was placed that night, as well as an oral suction tube to suction secretions out of her esophageal "pouch" so she wouldn't drown on those secretions (since she couldn't exactly swallow them).
That evening, she began having a lot of trouble with her blood pressures, and they found out she had 2 pretty huge heart defects. The first was a medium-sized hole in her heart. Sometimes those close on their own, and sometimes they can cause respiratory issues and actually require open heart surgery to repair. (Thankfully, Lily's has since closed on its own.) The other was a narrowing in her aorta, inhibiting blood flow to the lower part of her body. Normally, she'd just have surgery to repair this, and they do these procedures all the time, but NOT on a baby who just underwent a major surgery the day before, and NOT on a baby who's only 3 lbs. Her aorta was the size of a cocktail straw, and the surgeon would have to cut out the narrow portion of her aorta, and sew the two ends back together. He told us he would do whatever he had to in order to get her out alive. I don't think most of them even expected her to live, but we didn't know that until later. She had this surgery when she was 8 days old (and only a week after her first procedure), and did so much better than anyone expected! She's doing just great now, and doesn't even require any blood pressure meds!! Her cardiologist told me that if she wouldn't have known Lily'd had an aortic repair, she'd never be able to tell by looking at her EKG or listening to her pulses! Praise GOD!!
After this, Lily began having trouble tolerating her feedings. After several tests, we found out she had malrotation of the small intestine. To give you a mental picture of what this means, her appendix was in the upper left quadrant of her abdomen instead of the lower right. Also, probably due to this, she developed a narrowing in her small bowel, which had to be surgically repaired. As it turned out, it was a good thing they fixed it when they did because her small bowel was almost completely perforated, which can actually be fatal!
A month later, her esophagus was repaired, and Lily began having a lot of trouble respiratory-wise. We knew she had tracheomalacia (soft cartilage in her airway), and we knew that could cause more problems once her esophagus was repaired (because they move the esophagus away from the airway a bit to reconnect the two ends, and the airway loses that extra support, which can make it even more floppy and easily collapsible). Twenty-one days later, a trach was placed. And, at 6 months of age, Lily finally came home with a trach and a slew of homecare nurses and medical equipment.
It was a busy time, and life was really stressful and crazy for a long time. Dh and I tried to maintain as much normalcy as we could, but you can imagine how easy that was!
Finally, last October Lily had her trach removed. She ended up needing 2 more procedures in preparation for getting it out (an aortopexy, which basically relocates the aorta so it can't impinge the airway...as it turned out she also had a lot of scar tissue from her previous aortic surgery that was quite likely part of the problem in the first place, as well as tonsil and adenoid-ectomies....she gets those enlarged tonsils from me).
Anyway, now we are working on weaning off g-tube feedings. She also has some gross motor delays and speech delays, but all-in-all is doing so well! She's an amazing little girl, and give us so much inspiration!! Her prognosis is very good, and she'll be able to live a relatively normal life. She'll probably always have some degree of asthma/reactive airway disease, and she'll probably always be on some sort of acid blocker (due to the esophageal issues), but that's minor in comparison to everything else we've dealt with. Right now she's in ST and PT as well as Pool Therapy. She has some motor planning issues, which have probably contributed to her gross motor and speech delays. However, her fine motor and cognitive skills are right on track! YAY!!
Sorry for the book, but it's a long story, and I tend to get a little wordy anyway.
I look forward to getting to know you all better.
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