NICU

Happy due date day! Can't believe how much we have already gone through and how much she has grown and she wasn't even due until today. I sit writing this at 4:30 in the morning while my precious baby sleeps. She is such a good little girl. She hardly ever cries and has the sweetest disposition. The two things we were struggling with last week (feeding and sleeping) now have an explanation. As most of you know, last Friday was the scariest day of my life. My mom was here helping and was just putting Hannah on her back for a diaper change. She all of a sudden yelled for me. I ran out to find my baby bright red and stiff as a board. She threw her head back and wouldn't move. She had stopped breathing. Inside my heart sank and I wanted to lay down and die, but I knew I had to help her. I don't know what came over me, but thank God my reaction was the right one. I flipped her on her stomach and grabbed the bulb syringe (aka: booger sucker). I started suctioning her nose and mouth to find huge globs of mucus. This continued for about 30 minutes. Of course she did start breathing when the suctioning started and she screamed her head off which was music to my ears. You could hear her struggling to breath with each breath like a gurgling of mucus in her throat. Once I got her in a somewhat normal state we drove to the pediatrician. I assumed it was snot build up and that the Dr. would say it was just bad congestion and I got it all out. Instead, she took one look in her mouth and discovered the problem. Hannah has a cleft palate that was somehow overlooked by the two Standford Pediatricians at the hospital and the pediatrician I had taken her to four days prior. Cleft Palate is basically a birth defect in which the back of the throat doesn't completely close leaving a hole for milk to accumulate in thus resulting in her choking. It happens in 1 in every 700 births and is most often simultaneous with cleft lip. Hannah does not have the lip. It requires surgery around 6 months of age and is often correlated with speech problems and hearing loss. For now we are taking one day at a time. While hearing the diagnosis crushed me, it explains so much about the difficulties we have been having with feeding. All along, Hannah has been refusing to eat as a way to protect herself. Now she has a special bottle designed for babies with cleft and she is eating so well. In fact she has gained 9 oz. in five days...making up for lost time I think. And since she is eating better, she is sleeping better as well. Tim and I are probably sleeping worse because we are so anxious about her condition and watch her like a hawk to avoid another choking episode. Luckily we have had help and I think each day that passes we will see that she is okay with the new bottle. Unfortunately we did have to spend two days in the NICU. It was so sad and just when I thought I couldn't be more sleep deprived I found myself by her side for 48 hours. I refused to leave because she just seemed so scared. We met with numerous specialists already and I will be meeting with a surgeon within the next two weeks to discuss the repair. After the repair she should be able to eat like a typical child, but the recovery will be difficult and her speech may be impacted since they are changing the formation of her mouth and building her a uvula (or punching bag as TIm calls it). Poor sweet Hannah has somewhat of a long road ahead, but she is so strong and to me always seems to beat the odds. One of the neonatologists told us that she may have brain dysfunction, but she passed all her brain scans with glowing results. She has also passed with 100 percent on all of her hearing screenings. She is my little fighter and still the perfect baby we brought home from the hospital. Everyone has something they deal with in life and for her I'm glad it's fixable and she won't remember it in the long run. THank you for all your prayers. I know they worked because we were first told she had to stay 5-7 days in intensive care, but after 48 hours they saw how good she was and let us go. She is home now and doing well. Just as cute and sweet as ever. We are told with the new bottle, milk will be less likely to get stuck in the hole. She will be just fine, God is good!