We had another rest-filled day for Clara and are praising God for these hours and days of stability. We thank you all for your prayers and ask that you please continue praying that she will stay stable and continue to make progress towards being ready for surgery. We’re taking small steps, but celebrating each little victory along the way. In addition to getting off of the dopamine yesterday (which was apparently a bigger deal than I even realized), today she also began to reduce her sedation. Obviously, we will leave her sedated some so that she is still and comfortable, but reducing her versed is another goal because it also helps her systemic blood pressure. She was definitely a little more alert today, kicking her legs and responding more to touch and even light. The nurse said she even had her eyes open some this morning, although we did not get to see that while we were with her. Tomorrow, she will begin some Lasix which is a diuretic. This will hopefully help get some more of that fluid off. She will also have another echocardiogram tomorrow to determine how her pulmonary hypertension is doing. This is the biggest factor to determine her surgery and one of the main things that we ask for you to continue praying for. Go away pulmonary hypertension!!
Yesterday we mentioned that Clara might get some of my breast milk today. They did place the NG tube (in her nose) and begin giving her a trickle of milk. Then, a couple hours later the attending surgeon (Dr. Turner) had a chance to consult with her primary surgeon (Dr. Petty) and they decided to stop the milk for now. Although the nutrition would be great for her, we cannot tell right now if she has a bowel obstruction or not since all her guts are smooshed and in the wrong places. Dr. Turner said he thought that it was unlikely, but just to be safe we don’t want to create a bigger problem there. So breast milk is on hold until after surgery for now. She will continue to get full nutrition through an IV (called TPN) and they are looking to gradually increase her dextrose in that dose. It started at 10 and is expected to be at 17 by tonight. Those extra calories will give her more strength as well.
Her respiratory tidal volumes (how much air she’s breathing in) were better today as well and the chest x-rays look like the pneumothorax that she has a drain for is starting to resolve.
Robert and I got to rub some lotion on her today and it was great to hold her little arms and legs and be able to care for her as parents by meeting one small need. I continue to pump milk and freeze it for her – I’m pumping about every 2 hours to keep the supply up and make sure my body doesn’t figure out there’s not a baby there right now. That means that a huge portion of my day is spent pumping and washing pump pieces. For instance: I pump at 6:00 for 20 minutes. Store the milk and wash the pieces and it’s about 6:40. Then, I pump again at 8:00. That’s a lot of the day (and night!) Waking up during the night to continue pumping means that a nap in the afternoon is imperative. I’m starting to figure out what a routine and schedule will look like for the next few weeks. Since being discharged from the hospital yesterday, I’ve been staying at my parents’ house to have my mom help with things. But tomorrow, we plan to move back home and begin to settle in there. Fortunately, Robert’s mom is here all week (thank goodness it was her spring break!), so she’ll be helping to take care of me, cook for us and drive me back and forth to the hospital next week. Thanks to the many of you who have asked how I’m doing. I’m recovering very well from the C-section and am feeling good as long as I stay ahead of the curve with pain meds. I’m glad I’m feeling good because it means I can focus on Clara.
Robert returns to work tomorrow. It will be very difficult for him to be away from Clara, but we know that the distraction is probably helpful in some ways. Plus, he’s in sales so his salary is 100% commission. We need him working to be able to pay the medical bills that will be coming. Remember him as he tries to re-enter reality some tomorrow.
That’s about it for today. Things to pray for: reduced pulmonary hypertension, continued stability, wisdom for doctors who are making decisions about her care and specifically about when surgery will occur, continued protection from the many potential ECMO complications, Robert’s return to work, strength and rest for all of us.
|Clara's hand holding on to her "Irish Bunny"|
|Mommy and Daddy loving this precious girl so much|
|Mommy loving Daddy; Daddy loving baby|
|Aunt Stacy meets Clara!|
|Daddy can't stop kissing that sweet little head|