Just when things were starting to feel normal around here...

Bubble Baby had an ultrasound on her hips on Wednesday. On Thursday we were informed that there was an issue with the ultrasound and a follow up appointment was hastily scheduled for today (Friday) at an orthopedic center. It turns out that she has something called hip dysplasia. Her hip is in the right place, but it dislocates partially when stressed. If not corrected, it could lead to a lot of hip pain later in life, and arthritis. This fairly uncommon (about 0.4% of babies have this) and was likely caused because she was in breech position (legs down instead of head down) when she was born. She was in breech position most likely because of my wife's rupture. (The less amniotic fluid there is, the more likely that the baby will be in breech position.)

So, they are going to try to correct it by having her wear a special harness for 3 months. She will need to wear it full-time for the next six weeks, and if all progresses well, they will begin to wean her off of it after that. It's going to take a little while to get used to dealing with the harness since we cannot remove it. At the very least, diaper changes will be a lot more difficult. And unfortunately, Bubble Baby does not seem to be comfortable in it and has been extra fussy since it was put on. Hopefully she'll get used to it. We will have a follow up appointment in 2 weeks to check on her progress.

On another note, Bubble Baby had a follow up eye exam on Wednesday. Since she was on oxygen for the first 8 days of her life, she's at greater risk for developing vision problems and blindness. But after checking her out, the eye doctor says that her eyes look excellent. She will probably need glasses when she's older, but that's mainly because of the genes she inherited from us. She does have a wandering eye, meaning sometimes one eye will follow an object but not the other. We were told that this is a normal preemie thing that should go away. If not, we'll have a follow up appointment later to deal with it.

Family Portrait

We finally took a photo of all four of us together!

Sunday was another strange day to pass on the calendar. Had there been no complications to our pregnancy, Bubble Baby would have reached 37 weeks gestation, and would have been considered full-term.

We took Bubble Baby to her second pediatrician's appointment this morning and she is now up to 5lbs., 15oz., which is actually 1oz. more than our six-year-old was when she was born.

The Bubble Baby Comes Home

After an up-and-down week, the Bubble Baby was finally discharged from the NICU, and finally came home! Before the blood transfusion we were told that they probably needed to observe Bubble Baby until at least Sunday. But everything went so went, that she was actually discharged Saturday, which took us a little by surprise. As a preemie, she will still have many challenges ahead of her, and will have special appointments to monitor her development, but we're thrilled that she's made it this far.

It's amazing to us to look back and see how far we've come. I had gone to the hospital 86 straight days -- 49 days of hospital bed rest for my wife, and 38 days in the NICU for Bubble Baby (the last day of bed rest and the first day in the NICU were the same day.) When my wife was first admitted to the hospital, Bubble Baby was only at 23-1/2 weeks gestation, and given little chance to survive. She gave birth at 30-1/2 weeks, and we nearly lost Bubble Baby on her birthday due to a prolapsed umbilical cord. Bubble Baby couldn't breathe on her own for the first 8 days of her life, and had bouts with jaundice, feeding issues, and needed a blood transfusion. But she made it through all of it. She grew from 3lbs. 2oz. to 4lbs. 13oz. in the NICU, gaining more than half of her birth weight. And she grew from 15-3/4 inches to 17 inches in length.

With Bubble Baby finally at home, it was a great moment to see our six-year-old get to meet her little sister in person for the first time! At one point, she let Bubble Baby hold her finger. After a while we told her that she could release her hand if she wanted, but she refused, and said she wanted to stay by her side.

On Monday we took Bubble Baby to her first pediatrician appointment. She is growing fast and is now up to 5lbs., 2oz. and is 17-1/2 inches long.

Flesh and Blood

It turns out that Bubble Baby does indeed need a blood transfusion. And I am a match for her, so they are using my blood. Hopefully this will get her back on track.

She continues to eat well and is up to 4lbs., 12oz., and has grown to 17 inches long.

The Roller Coaster Continues

After all we've been through I guess it's fitting that we're having a little more drama.

When Bubble Baby was born we were told to expect her to be in the NICU until around her original due date (Nov. 7th.) But she had been doing so well that we were told that she might come home a little earlier, perhaps in mid-October. Then we started getting hints that she'd go home by the end of this week. And on Sunday we were told that if all went well, she'd be discharged on Tuesday or Wednesday. We were thrilled, though a bit panicked too, as we still have so much to do to get ready for Bubble Baby's arrival.

Monday morning we were told that if all went well for the next 24 hours, she'd be coming home on Tuesday. My wife and I had lunch in the hospital cafe with our heads spinning. We couldn't believe it was happening so soon. But when we returned to the NICU from lunch, Bubble Baby's nurse informed us that she just had a couple of what they call "episodes." She had a "Brady" (short for Bradycardia) in which her heart rate goes way down, and she stops breathing for several seconds. And she also had a "Desat" (short for Desaturation) in which the oxygen level in her blood dips way below what it should be. This would likely keep her there an extra day for observation. Then later that night she had more episodes, including a Brady in which Bubble Baby had to be revived by her nurse. So now her discharge date is completely up in the air.

We are told that these episodes are common for a preemie. She is still only at a gestational age of 35-1/2 weeks, so it could just be a sign of her immaturity. They just removed the feeding tube, and she's now feeding orally for all her feedings. She is still so small and has to work so hard every feeding, and perhaps it's a bit much for her. It could also be reflux, so they've propped her bed up at an angle to see if that will help. Or it could be that she's having problems generating hemoglobin in her blood, which is another common preemie issue. In that event, they may need to do a blood transfusion. Shortly after Bubble Baby's birth, I donated blood designated directly for her in case of such a scenario. (They have yet to find out if Bubble Baby is a match for my blood first, and Bubble Mommy can't do the direct donor transfer because she recently had a c-section.)

So we're in limbo once again. During the seven weeks of my wife's hospitalization we were told that the baby could arrive any day. And now we are in a somewhat similar situation. Resolution to Bubble Baby's current issues could come quickly, or it could take a week or more. But though we are anxious to get her home, we want to make absolutely sure that she is truly ready before she is discharged. We've waited this long, and we can wait a little longer if we need to....

Bubble Baby no longer has a feeding tube

One Month Old

One Month Old Bubble Baby

This past Thursday Bubble Baby was upgraded from an incubator to an open-air bassinet. And she now takes most of her feedings orally (instead of through her feeding tube.) If all continues to go well, she might come home soon!