What a hectic week! Sorry if this entry is disjointed – I am writing it on my phone!

Thankfully, the Bug hasn’t had a fever since Tuesday morning, so YAY – no spinal tap. That was a near miss! Leah has been relatively chill these past few days, with the exception, as always, of feeding times. BabyBug DOES NOT like to be hungry and she DOES NOT like to be kept waiting when she is. We can recognize her voice as soon as we walk into the NICU reception area now, so we know when Empress Baby is ready for her meal before we even see her. Leah also flips out when her tube is clogged. She has had many chest-rattly episodes – at this point they are getting to be a regular occurrence. She tends to paw and pull at it the most when it is giving her trouble, so hopefully the nurses are catching on to that. 

Yesterday’s weight was 7 lbs, 4.9 oz. Leah’s doctors are postponing her Mic-Key procedure and 2nd contrast study until she is past this little bout of fevers and done with all of her antibiotics. They will probably bring her on the week of the 19th. 

Someday this poor bug is going to have nightmares about people holding her down and sticking needles into her. She had to have her hep lock replaced last night AND tonight. Last night I kept her calm(ish) while they put it it; tonight it was Mandy’s turn. 

There is a baby in our “pod” who has a mobile that plays “Brahm’s Lullaby” – not music-box style but like, violin-sounding. We heard it so many times today that I am literally hearing it right now as I type from our room at RMH. No, it’s not just in my head – I am actually hearing it in my ears. So bizarre.

Well, the only status we have so far is that the Bug doesn’t appear to have a bug. Her nose swabs came back with no virii detected, and her blood cultures show no growth after 24 hours. They will keep checking it for a couple of days, I think, and in the mean time she is still on antibiotics. She has continued to be a little stinkbomb. After her Tylenol Friday night her temperature was pretty decent, and it wasn’t terrible yesterday either, but this morning at about 5:45AM she had another reading of 102 degrees. I still wonder if it is possible for her to cry and scream so much that she overheats. The doctor says that’s very high for just getting worked up, though. I guess we shall see!

LeahBug is doing a lot better today, although she still had a mild fever earlier in the day. Thanks for all your thoughts and check-ins! She had her moments of fussiness (and screaming) but overall it was a better day today than yesterday. The doc said it was hard to tell from Leah’s chest x-ray, but she may have gotten some fluid into her lungs (aspiration) and that could be the cause of the fever. They took some  nose swabs in addition to the blood draw so that they can check for viral infection as well as bacterial, but the doc said if nothing comes up she will treat as though aspiration is the issue, just in case. They will keep an eye on her. It would make sense since she has been having so much trouble with the repogle. 

Leah weighed 7 lbs 3 oz today, but we are wary about this number since her last weight (like, yesterday) was 6 lbs 11 oz. and she has been burning a lot of calories by crying. So this weight is probably wrong. She has her IV boxing-glove, so that could be adding a few grams, but not a few ounces. We’ll let you know later this weekend whether that weigh-in was correct or way off. 

We spent a couple of hours this afternoon at an event for new parents of babies with Down syndrome. It was nice to be in that space. We only wish we could have brought the Bug with us. She could have made some new friends! 

What a thoroughly exhausting few hours.

I had an appointment at noon today so Mandy drove me; we called in to check on the baby and she was doing fine, albeit a little cranky. After my appointment we had to go run some administrative errands for baby stuff and for Mandy’s work. When we got back to the NICU in the late afternoon, one of the other moms was heading out and said something along the lines of, “Oh, man, are the nurses going be happy to see you…” Apparently BabyBug had been cranky for a very long time, and they had pulled out all the stops – rocking her, singing to her, playing music to her. They even brought out a little portable baby swing and tried swinging her. By the time we got in there, the nurse was sitting on the step-stool with BabyBug in her lap and the kid was going nuts.

We did a little bit better with her, but really only slightly. She was just pissed off. For the next couple of hours we proceeded to use all of the tricks we know. I’m pretty sure I need a new set of knees from bouncing, and I ran out of Shabbat songs to sing. We would get her to be calm for a little while, and then she would remember she was upset and start crying again. Her uncle Ralph came to visit her, and patted her on the back and sang to her, and that didn’t work either. Nothing worked. By the time the new nurse came on duty, BabyBug had a fever just over 102 degrees.
We don’t know what exactly is going on. She has seemed very gassy and tummy-achey all day, so we think she has not been feeling well because of that. She’s been a little stink-bomb. But I’m not sure if that would cause a fever. Could be that she had herself so worked up that she got overheated, especially since she was swaddled to keep her calmer. The doc said her Mic-Key button doesn’t look infected, and she said her lungs sound good (she was worried about pneumonia). She ordered some blood cultures and they gave the baby some Tylenol and some IV antibiotics (yeah, the kid has a boxing glove AGAIN). I guess since the blood cultures take 2 days they start the antibiotics right away and then if the cultures come out negative they can stop the antibiotics after 48 hours. All I know is that if I’m thoroughly exhausted just from trying to comfort the baby, I can’t even imagine how exhausted she must be from screaming all day. *WHEW*

A slight bit of news for you today. The surgeons apparently came by this morning and said they want to cauterize the granulation tissue that has sprouted up around Leah’s Mic-Key button and also add some sutures so that the button will be better positioned and hopefully will not leak as much. It gets pretty grimy and gross (and doesn’t look very comfortable either), so hopefully this will be an improvement, although we’re not looking forward to another round of ventilators and IVs. While they have BabyBug in the OR they plan to do another contrast study (I think largely because they have her there anyway), and during this time they will do the study of the upper area that they postponed from last time. They will double-check to ensure that there is no tracheoesophageal fistula along the upper esophageal pouch (although they feel that they would have seen signs of that by now if she had one), and they will make sure that her trachea otherwise looks good. We’re not sure what day this will happen but we will keep you posted as we learn more.