Bradys, Car Seats, and (Finally) Discharge

It has been a while since I have updated, and for good reason. We have been adjusting to life at home with a new baby. That's right, we're home.

We have been home for about a week now, and if I could describe the experience in one word, it would be heavenly. Before I dive into the details of life at home, let me tell you how we got here.

After Claire's stem cell infusion, we were ready to head back to Atlanta. Unfortunately, Duke University Hospital had a different opinion and decided to keep Claire for a few weeks longer.

First, there was the "minor" issue of feeding: Claire had to prove that she could eat well enough on her own so that she would continue to grow and thrive once released. Feeding was a slow process full of ups and downs. At first, Claire would only drink 10 cc's over a period of 20 minutes. She would then get tired and fall asleep and receive the rest of her food through an NG tube. Gradually, however, she built up her stamina and started taking 30, then 40, then 50 and 60 cc's. Within about a week, her tube was removed, and she was taking every feed by bottle. We were so proud of her progress!

Bradys

Then, there were "Bradys." "Brady" is short for Bradycardia, which means a dip in a person's heart rate. In babies, Bradycardia is defined as a heart rate of less than 100 beats per minute. (A baby's normal resting heart rate is 120-180 beats per minute.) Just as Claire had feeding under her belt, she began to have Bradys. Not "serious" Bradys, fortunately - most lasted 3-5 seconds or less, and she was able to bring herself out of them on her own - but Bradys none the less. At Duke, there is a NICU rule that babies must go five days without a Brady before they can be discharged. If a baby has a Brady within the 5 day period, the Brady clock starts all over again.

As we inched closer to discharge, Claire's Brady clock kept resetting. She would go three days, then have a Brady. We began to learn when they occurred and what triggered them, and I believe that this information helped us get home sooner than we would have. We noticed that Claire's Bradys typically occurred with feeds - she would get choked and her heart rate would dip to 80, 70, or sometimes 60 beats per minute. We brought this information to Claire's neonatologist, who agreed that the Bradys that Claire was having were less "serious" than those that NICU doctors normally are concerned about. As a result, he agreed to let Claire go home with a monitor instead of keeping her in the NICU until she was 100% Brady-free. The monitor tells us when Claire is having a Brady by making a shrill sound. So far, the monitor has not gone off, thank goodness!

Car Seats

Finally, there was the issue of car seats. In order to be discharged, Claire had to pass a "car seat test" designed to show that she could safely sit in a car seat for the duration of our journey home. Claire first took the test in the car seat we had bought for her - a Graco Snugride 35. She managed to sit in the seat for 1 hour and 55 minutes before having a Brady. Unfortunately, with this one Brady, she failed the test.

We then contacted the person at the hospital in charge of car seat safety and asked for help. She assessed Claire in her car seat and determined that a different seat might work better for her. She graciously offered to go to Babies R Us and buy the car seat that she felt would best suit Claire, and while we waited for her to do so, we re-took the car seat test in our Graco seat. The second time around, Claire passed! Then, when the car seat safety person returned with the "better" car seat, we took the test again, and Claire passed again!

Discharge!

After Claire passed the car seat test(s), we were able to go home! We were discharged on Thursday, February 3rd and made the long drive back to Atlanta that afternoon (and evening, and into Friday morning). Since we've been home, Claire has been such a good baby. She only cries when she is hungry and sleeps soundly for 3 1/2 hour stretches. She is putting on weight every day and seems to be doing age-appropriate things. Within the first three days of being home, she put on 6 ounces, and she is already smiling and cooing. She is learning to move her arms and legs and can hold objects in her hand for short periods of time. She loves her reflection. We have enjoyed every minute.

We have also been touched by the outpouring of love and support we have received from family and friends. We took Claire to church last Sunday, and it seemed like everyone in our 250+ person congregation was eager to meet her. Some of our church friends have brought us dinner. Friends (and strangers) from our neighborhood have also stopped by with meals and gifts. We have no idea what we did to deserve such love and kindness, but we appreciate everything that everyone has done for us. There really are some incredible people in this world.

Because I can't resist, I'll leave you with a few of my favorite pics from our first week at home.

Napping by the fire

Enjoying her bouncy seat

Looking cute in her car seat

That's all for now! Back to enjoying my sweet little girl!