It’s Sunday. We have gotten into the routine of being at the NICU everyday with Remy. We just purchased a monthly spot in the garage across the street. Our body clocks are starting to adjust to the new routine. Still, sleep is a luxury. I’m back on ambien, my old friend that I was hoping not to get reacquainted with.
My Dad has been hanging out with us today. He is heading back to Florida tomorrow for a week or two and has a few doctor appointments to attend. We’ll miss him, he has been a great help to us, and it’s awesome that he comes and hangs out with his first grandkid every few days!
One thing I didn’t mention in my last post, was that on Tuesday, as soon as Mary and I arrived, we noticed that Remy’s skin color was looking so much healthier. She was starting to get a pinkish, tannish hue. Her color looked almost identical to mine. We were very excited. Just after noticing that, I was told that Remy needed to get a blood transfusion later in the day. Remy’s blood cell counts and platelets were low, on top of always getting blood drawn throughout the day. So, the transfusion was more reassuring than scary, but nonetheless scary that it was needed. We were told not to be too concerned.
I knew this was a possibility, so I gave blood at the blood bank the day after my arrival, and luckily they were able to use it. After donating, when Mary was still in ICU, I casually mentioned that I should have asked them my blood type, and Mary, her mom and her sister all said, “What!” simultaneously. I guess that was part of Taylor 101 growing up. Don’t worry Mom, I’ll never forget again. I’m B-. Anyway, I just think it’s the coolest thing that I was able to be the donor for Remy! Thanks so much to my friends and family who also donated for Remy. Your blood will not be wasted. It will go to others in need.
Mission Milk: Mary has been a pumping machine! At least every 3 hours (8-10 times a day). We store the milk that she pumps in little freezer bags at home and in the NICU. She pumps, I write. She has a home and a hospital routine. She likes pumping and chatting it up with the other moms in the NICU. It is therapeutic for her to have others sharing similar experiences. I’m just glad I don’t like milk because I’m a late night eater who likes to rummage through the fridge and the freezer and there’s no telling what I’ll eat, half asleep, at 4 am.
On Thursday we were finally able to put some of the milk to use. Remy received 5 CC’s of milk , and we were excited for her first real food. Similar to my emotions with the blood transfusion, Mary was very proud. Unfortunately, on Friday they had to cease it because she was not digesting it well, but hopefully that will change soon. It’s okay though. This may take some time and several attempts before her body is ready to break down Mom’s milk comfortably.
Other than that, Remy is doing very well. They changed her SiPAP to a CPAP (these are the tubes that is attached to her nose). These machines are often used for sleep apnea and a common aid for preemies. While Remy has been breathing on her own for most of the week now, the SiPAP kept her lungs inflated, while she breathes in and out. The CPAP also keeps her lungs inflated, but only when she breathes in, not out. This is a sign that her breathing and overall strength is continuing to get better. The CPAP aids Remy in a way that helps her breathe more effortlessly. It helps her keep to a more rhythmic breathing tempo, and it will keep getting decreased until she doesn’t need it anymore. Think of it as a musician using a pendulum that ticks, helping one to follow the beats, while learning to play an instrument.
Everything is a slow and eventual process for a preemie. The things that she would have developed in the womb now have to be learned through machines, human contact, and so forth. It’s really so amazing how medical methods are always advancing.
Mentally, we are doing as well as we can. Being home without our baby is becoming even more difficult. Being there is comforting, but now she is usually covered with a blanket over the incubator. This is good for her, helping her sleep, aiding her development and keeping a dark environment, as she would have in the womb. We sneak peaks and stick our hands in there as often as possible without interrupting her rest time.
Enjoy these pics of Remy, Remy with Mom T., and Mom’s Milk.