ATD has been a busy little boy during his first 10 days of life and we are feeling incredibly thankful for how well he is doing. He is proving to be a strong and resilient little guy.
Here is an update on those issues we wrote about in the last post:
1) Premature lungs: We walked into ATD's room last Saturday afternoon to a team surrounding his isolette. We heard them say something about calling family members and then they turned around to see us walking in. It turned out to be really exciting news. They were taking out his ET tube and he was graduating to a nasal cannula CPAP device. We heard him cry for the 1st time since delivery. Since JD's research subjects are usually on CPAP, he was all over the terminology and talking business with the respiratory therapists in the room. The nasal prongs are very long; they are placed in the nostrils and then travel all the way down to the back of the throat. They had some difficulty getting them placed initially but after the 2nd try it worked. That felt like a huge milestone to us and he has done pretty well with breathing since then. One of the parameters they watch is something called the fraction of inspired oxygen (FiO2) which measures the percent of inhaled air that is oxygen. Room air is 21%. For the first few days after he was extubated, ATD would stay between 22 and 26% and we were all very pleased with that. On Tuesday morning when I got to his room, it was 43% so that was quite alarming. The nurse hadn't had him before so her response was that she didn't know what his baseline was. Because my emotions are hanging by a thread these days, I was immediately irrational and began to question her competence (in my head only, I promise I'm not that rude). The medical team came in to round on him and the attending physician used it as a teaching moment to explain that approximately 10-14 days after delivery, the honeymoon phase with the benefits of the steroids and surfactant begins to wear off and babies have to work a bit harder to breathe. At the same time this discussion was taking place, the nurse changed out his nasal prongs and the FiO2 was decreased all the way down to 23%, at which point the nurse instantly became my best friend. The fellow respectfully interrupted the attending physician, nodded to the screen and the differential diagnosis was that the cannula needed replacing (they are replaced 2-3 times a day). Today he is in the 30s again but at least this time I was prepared to see higher values knowing a bit more about the post-honeymoon phase. He will stay on the nasal CPAP until 32-34 weeks gestation, even if he does start consistently breathing fine on room air until then. The fellow described yesterday that there is no reason to pull it out and force his lungs to work any harder than they have to.
2) Infection: They are no longer monitoring ATD for infection so that is considered a stable issue. On Saturday night, the IV from his head was removed so with that gone and the ET tube out, we had a pretty good view of his little face. He lost 2 ounces from the removal of the tubing and the massive amounts of tape used to hold everything in place. The nurse even washed his hair a little on Saturday night which pleased JD immensely. He is closely monitoring to make sure that ATD's hair doesn't go past his ears. Clearly, ATD will have a hair cut before KD ever will.
3) Feeding: This is the area with the most change over the past week. They started by increasing the volume of breast milk received every 3 hours from 2mL, to 4mL, and now he receives 23mL. We are so pleased that he is tolerating these feedings since they say that is usually the rate limiting step to going home. Yesterday they started to fortify the milk to 22 kcal/mL (milk is 20kcal/mL) and today they will increase to 24 kcal/mL. The plan is to monitor to see if he tolerates the higher caloric density and if so, shut off the IV TPN and try to increase total volume to a goal of 28 mL. He is fed through an oral gastric (OG) tube which goes from his mouth to his stomach. It will be great to have the IV discontinued and the little PICC line removed from his arm. Then he will only be connected by the CPAP, OG tube, EKG electrodes, and pulse oximeter. Last night we were here when they weighed him and he was 1515 grams or 3 lbs, 5 ounces so he officially reached his birth weight in less than 2 weeks which is usually the average time frame. This may fluctuate again with the discontinuation of the TPN but we were still excited. He never lost 10% of his birth weight, I am so impressed with the plan they have had in place for him to keep him well nourished. Tonight he started to spit up a little with the feedings so that has us a little anxious. The nurse explained that the CPAP delivers extra air to the stomach and the OG tube prevents the esophageal sphincter from closing completely so it is very common for those babies to spit up occasionally. We will be watching that closely.
4) Temperature regulation: A significant part of the update on ATD's temp regulation is due to changes in #5. ATD was outfitted in his first onesie on Monday. Since the bili lights are off, he no longer has to have the majority of his skin showing so clothing is now an option. They have preemie clothes here that former NICU families have donated. He has been able to wear sleepers the past few days and he actually fills them out pretty well, especially length-wise. He is also able to be swaddled which helps with temperature regulation and gentle containment to keep those arms and legs from using up too much energy. He no longer has the temperature probe on him and they are slowly decreasing the temperature in his isolate.
ATD Fully Clothed 5) Bilirubin: On Monday the bili lights were removed from ATD's room and they are no longer monitoring his bilirubin as aggressively. It is checked every 3-4 days now. Apparently he is old enough to handle a little higher bilirubin level and since he is now filling his diaper with both #1 and #2's, that is helping his body clear the excess. His facial bruising is so much better now, all that remains are two small black eyes. I'm hoping those are the last black eyes he will ever have in his lifetime but perhaps that is a lofty goal considering he is a boy and has two clumsy parents.
6) Hemorrhage: During Tuesday morning rounds, they discussed the brain hemorrhage risk again and said that a head ultrasound had been ordered for that morning. They promised to give results as soon as possible but told me that I wouldn't hear anything until later in the day. About 5 minutes later, the resident came back to say they had already done the scan before any of them came in that morning and everything looked normal. That was awesome news. They may decide to check again in a month but the fellow explained to me yesterday that they don't routinely do a second one.
7) Personal Hygiene: Last night we were able to help give ATD his first sponge bath. His umbilical cord is still healing so a full bath won't be an option for another week or so. Either way, it was pretty special to be able to help with that and he tolerated it pretty well from a temperature and oxygen standpoint. From a general satisfaction standpoint, not so much. He cried and squirmed quite a bit but quickly found some comfort with a tiny pacifier that they encourage preemies to suck on to start to build some endurance for sucking and swallowing. We quickly learned why there are "positioning" instructions for boys in their diapers. Before the bath, the nurse helped us get some footprints made.
All Inked Up
Tiny Foot
8) Therapy for Parents: On Sunday, I was allowed to do kangaroo care with ATD and hold him for the first time. This was an incredibly special time for me. We are allowed to do that once a day except on bath days so to limit too much excitement. I will usually feed him during k-care which means I hold a syringe and push 1 mL of milk every minute until it is all gone (see picture below). Last night after his bath, the nurse wrapped him up like a burrito and I got to hold him like that and feed him. Today is a rest day and he has stayed in his isolette all day since his oxygen requirement has gone up slightly.
Syringe Feeding and Cuddle Time (Thanks for the
homemade blanket, ie-Chacho 2, ACL)
Yesterday when the fellow came to visit, I tried to probe for some reassurance that ATD is on the right track. As I alluded to in earlier post, I prefer to have a slightly inflated progress report. All she could offer as a reassurance is that "he is doing as well as we would expect." Hmmph. Then, last night, my OB was on call so she came up to check in and she knew my language. She said he looks like he is doing "really great" and that we should be really happy with his progress so far. In addition, the attending on call this week is the same attending who was in the room when he was born and she seemed quite confident in saying that he is doing "very well" and that he is "following the textbook" in terms of meeting milestones. She cautioned me not to expect progress every day, however. Either way, that was very encouraging to hear.
It has been really great to spend time with KD the past week since I've been home. She is so much fun right now and talking up a storm. Every time she wakes up from a nap or sleep, she takes roll call - "Mommy?, Daddy? Puppy?" as if she isn't quite sure who is actually in the house. On Sunday afternoon, the three of us went to the pool and she loved it. My mom left on Sunday also so we've been adjusting to having to remember to do things around the house like the laundry and general home maintenance.
Pool Time
We continue to feel so very fortunate for ATD's status. We still have a number of weeks before our family will be under one roof but we are fully aware that things could be so much worse than they are.
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