Today we purchased a digital recorder so we can tape ourselves reading and Natalie can listen at her leisure. I had a lot of fun tonight picking out her book selection and of course "The Little Engine That Could" is at the top of the list.
I think I have mentioned before that nutrition is key to treating BPD. Babies with BPD expend a lot of energy breathing and in general have growth issues. Growing new lung tissue is the only way to improve her respiratory status so it is crucial she gets the nutrition needed for growth. This is further complicated by the fact that BPD babies tend to be fluid sensitive, meaning the more fluid going into her body the more that tends to end up in her lungs worsening the pulmonary edema. She is fluid restricted to help control this and on powerful diuretics to reduce the fluid in her lungs. This then creates issues with electrolyte balance, so she receives many supplements to replace what is peed out. Natalie wears diapers a few sizes too big because appropriately sized diapers could never hold her urine output. We like to say that Natalie loves her lasix.
Anyway, to maximize her nutrition while limiting her fluid intake they have to be creative. Her usual mix was 2 parts 30 calorie liquid formula to 1 part breast milk plus 4 packs of human milk fortifier. This was a whopping 28 calories an ounce (normal breast milk is estimated to be around 21 cal/ounce). What a contrast to feeding Anneliese who had nothing but my milk until she was 6 months old.
Late last week they revisited her nutrition and changed her to breast milk with some high octane powder mixed in to bump calories. She will be getting much more of my milk as it is no longer diluted with the liquid formula. Now Natters receives the usual benefits of human milk in addition to something about the osmolarity of human milk vs formula in regards to her fluid balance, but I will spare you the explanation. It is so nice to have a concrete thing I can do to provide for her and gives renewed purpose to my hours pumping.
The new mixture brings her to 30 cal/ounce. Unless they decide to add vegetable oil (no joke) this is the maximum amount of calories they will try to achieve. The only thing left to do is go up in volume.
After the feeding change Natter's girth increased. She has always tolerated her feeds well so we were a bit alarmed. She was still having BM's and the abdominal X-ray looked normal so the feedings continued as planned. During my visit Saturday it was obvious that she was uncomfortable. She would bring up her legs, turn dark red and desat down into the 50's. Oh, how I miss the days when an uncomfortable baby meant loud crying and sleepless nights, not incredibly poor oxygenation. The sweet baby. There was nothing we could do to help.
Sunday she pooped like it was her job and filled at least 5 diapers in addition to soiling her bedding. We were VERY proud parents and all parties involved were relieved. Since then she has looked more and more comfortable every day. Thank God we can still say she is tolerating her feeds well. That's the one thing we can always count on even during most bad days.
So much talk about feeding all to put off talking about today's news.
Natalie continues to be responding well to the iNO. As a matter of fact, when she had such a dramatic response it raised a few eyebrows, including my own. I was afraid that it indicated a return of pulmonary hypertension. Babies with severe BPD are at a high risk for developing PH. At the last care meeting I asked how often she would be screened (by echocardiogram) and they said every 4-6 weeks.
It is very fortuitous that they agreed to the iNO when they did and that her response to it elicited an echocardiogram. She was not due to be rechecked for at least 2 more weeks. Her heart is in fact showing changes that indicate PH. The echo was yesterday and the unofficial word was that she was in the clear. Now I know to not celebrate until the official word is in. The good news is that it was caught and she is receiving appropriate treatment. The changes to her heart should not cause permanent damage. We could easily have gone another few weeks NOT treating the PH and been facing life threatening heart issues. Still, PH is life threatening and a complication we were very much hoping to avoid.
The last two days have been stable and we are VERY grateful. She tolerated the first wean of iNO (from 20ppm to 16ppm) beautifully. In fact the echo was done during the wean so they could watch for changes in her heart and the wean did not make the PH visibly worse. I hesitate to put it in print and jinx ourselves, but since last night she has been in the 50's and low 60's for O2. She has been handling her cares (diapers, position change etc) without needing major increases in oxygen support. All good.
The have yet to reduce her MAP and boy am I struggling with that. I am hoping that tomorrow she continues to be stable and they take the chance. I want that number down, and while I am prepared for patience I really don't see what they are waiting for.
Her CRP (marker of inflammation) is down to 15, which is wonderful. They want to see it below 10 and she is well on her way. Her antibiotic and antifungal meds are done this week. They may remove her PSC line, which reduces a potential route for new infection AND reduces her fluid intake by not needing constant line flushes. She will have a follow-up kidney ultrasound to look for evidence of fungal infection and another urine culture at the end of the week.
In general she seems to be resting much more comfortably. Yesterday little noises were upsetting to her but today she seemed to enjoy conversation. Her nurse was very amused that Natalie was eavesdropping on talk in the hallway and became agitated when the door was closed. She opened it back up and Natalie happily returned to looking around and listening.
As you know Annie has only met Natalie once, and that visit had to be advocated by the child life specialist. Now that we know we are in for an extended stay I became very bothered by the idea that the two would not meet again until Annie turns 3 in September. Our time with Natalie is not guaranteed and I do not want Anneliese deprived of knowing her sister because of a hospital policy. I made my case and we have been granted an exception. As long as she is healthy Annie can now make brief visits every other week. My hope is that if all goes well visits can be increased to weekly but I am not pushing my luck. Oh, and if you happen to know anyone at the hospital we are not supposed to advertise that she is under 3 since they don't want to set a precedent. I am trusting the readers of this blog to not blow us in to other NICU parents or Strong staff members.
When I tucked her in tonight I told Annie she would see Natalie tomorrow and she perked up immediately. She then composed a list of all her toys she wants to bring in to show baby sister. Such a sweetie. I am thrilled at the prospect of being in the same room with both my daughters again.
We are "holding up." I lack better words for it. We are functioning the way you might expect people under extreme stress to function. Today NY had 90 degree weather. We came back from a full day out and about to find the air conditioning on full blast and the back door unlocked (very wise in our neighborhood). The door blew open so we spent who knows how many hours today trying to chill the backyard. We were then home for a half hour before we realized we left all the groceries in the car.....in the heat. I consider it an accomplishment that we even made it to to the grocery store. We have been surviving on a great deal of restaurant food because by the end of the day neither of us has the brainpower left to plan and cook dinner. Well, assuming one of us was clever enough to even purchase food to cook.
It is certainly the biggest challenge we have faced as a couple but we are figuring it out as we go. I take a lot of inspiration from Ms. Natalie Evelyn. She has been a relentless warrior-working hard for every single breath she has taken yet fighting on. If such a little person can display so much fortitude certainly her parents can follow her lead.
(I would like to take a second and thank you for overlooking typos, misspellings, repetitions and anything that may just sound wonky. I am normally diligent about editing but my head is pretty foggy these days.)