Another day, another fever

Official weight today: 7 lbs 2.4 oz.

BabyBug had a fever AGAIN this morning. Her doc said if it happens again she wants to do a spinal tap to rule out meningitis. That being said, she doesn’t think Leah is acting sick and she thinks most likely the aspiration is causing the fever. BabyBug now has IVs in her hand and her foot for the antibiotics. The respiratory therapist says she thinks the doc will probably discontinue the albuterol treatments some time in the next day or so. The surgeons are still trying to plan a time to cauterize the granulation tissue around the Mic-Key button and do another contrast study. They’re just trying to coordinate the timing with her doctor since she shouldn’t be in the OR while she’s still having fevers.

All things considered, BabyBug had a pretty good day. I met up with another student from my grad program whose baby is at the hospital across the street. We visited in her baby’s room for a bit and then she came to meet Leah. We hope they get to go home soon!! BabyBug also had visits from her Gran and from cousin Erin and one of her bandmates.

008
Oh hai, BabyBug is wearing a baby bug!

Oh hai, we have a 7-lb baby

Our little bug is at 7 lbs 1 oz! Good girl!

Leah’s still having problems with her temperature – she clocked in at 102.2 degrees this morning, for the third time in four days. She continues to show no sign of a specific infection, but the doc noticed some changes in her chest x-rays and does think she aspirated a bit. They are continuing antibiotics, and have been giving her Albuterol every 6 hours to help her with breathing. They’re also watching the repogle a little bit more closely.

I’ve barely had time to take any pictures the past couple of days! I’ll have some soon!!! But here is one from the other day.

970002_1396691263881335_1041669730_n

Not much to update

We still don’t have a reliable weight for Leah – her weight a couple of days ago was 6 lbs 11 oz, and then the next day it was 7 lbs 3 oz or something close, and then later that night it was 7 lbs 1 oz. We’ll see what they say in the AM. I’ll trust it more when she no longer has her boxing glove.

Leah’s temperature has been fairly normal today (technically yesterday, Sunday), aside from that one episode early early in the AM. She was super fussy tonight and had lots of trouble with her repogle. Her labs all came back normal, which I think I mentioned earlier. The nurse said they are going to run another CBC in the morning.

Today’s visitor tally: Leah saw her Gran earlier today, and later in the evening she had a visit from one of my grad school classmates, who happened to be at the hospital because her dad had surgery. We hope he has a quick recovery! Leah put on a nice little show for her new friend, complete with a yanking-out of the tube (tubeless baybeeeee!), a spitball, a few angry-hungry yells (“NURSE! Bring to me my supper!”), a few loopy “I’m not asleep, I swearzzzzzzz” moments, and a ridiculous adorable smile.

Tomorrow: BabyBug meets her great-auntie!

Bug Status

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!

FussyBug is feeling a little better

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! 

FeverBug

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*

 

 

Okay, now for the real update

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.

Rockin’ 21

004
“Look how cute I am! Am I rocking my extra chromosome or what?”

059
“Did you hear me? I asked you a question.”

078 051 025
“I said, I said, am I ROCKING THIS EXTRA CHROMOSOME OR WHAT? *wink*”

007
“Mamas, they’re not answering! Make them ANSWER!”

Recap of our long Tuesday

Whew. Today was a much more slow day than yesterday, but it was still a long one!

So, yesterday. BabyBug had a nice visit with her Aunti Staci in the morning and even got to snuggle with her for a bit. Eventually Leah started getting cranky, and so I took her back (which should explain the picture my little punk of a sister posted yesterday on Facebook, for those of you who saw it. LOL). The gauze on her Mic-Key button was wet and needed to be replaced, so the nurse cleared it up so she could put new gauze on. Unfortunately some of the fibers were stuck to the granulation tissue around the Mic-Key, so it was not a fun experience for Leah. She screamed and screamed, and got herself so worked up that she just would not stop crying. She went on like this for quite some time, and was spitting out her suction tube at the same time. At some point in the craziness, she must have irritated the lining of her throat or nicked something somewhere, because her secretions started turning red and blood started coming out of the tube. She was even spitting bloody spitballs, and it got caked all around her little mouth. She looked like she just came off the set of True Blood. Vampire Baby!

So here’s the part where I got really ticked off. Generally speaking, the nurses in the NICU are wonderful, and even when we get a little frustrated sometimes, I try not to let it spill into the blog, because again, the nurses are good at what they do, and it’s not fair to complain to the world if things aren’t 100% perfect, because things will never be 100% perfect. Plus you never know who’s reading and it would be really hurtful for somebody to read negative comments about themselves in somebody else’s blog. But both in the NICU and just generally in life, there are lines that shouldn’t be crossed. Our nurse had to take her break during the time Leah was screaming non-stop (seriously, this went on for at least 30-45 minutes, and they seem pretty strict about enforcing breaks). While our nurse was gone, I was doing everything I could think of to console the baby, and she would get calmer for a minute or two and then start screaming again. After a few minutes, the nurse who was covering for our nurse during her break walked right up to me from across the room, plucked Leah out of my arms, and started trying to comfort the baby herself.

Here’s a tip: If a mother is trying to console her sobbing baby and has not asked for your help, DO NOT snatch Baby out of Mother’s arms and try to quiet her yourself. Don’t even ask if you can try. Because no matter what, the message that comes across is, “You’re failing, and I think I can do it better.” And that’s not cool. Have an idea about what might be bothering her? Okay. Tell me that. Suggestions are cool. Grabbing is not. And yes, it’s the NICU, so I get it – if a nurse has to come grab the baby because something is wrong, then absolutely, they should. They need to do what they have to do for the baby’s safety. But NICU parents have little enough control as it is – it’s important to let us do what we can, and unless it involves administering medical treatment, comforting a crying baby is definitely parental territory.

Anyway, when she failed to quiet Leah down after a minute or two, I asked for my child back, and proceeded, FINALLY, to calm her. LeahBug, your timing is impeccable.

< / rant >

So. The rest of the day yesterday wasn’t TOO bad – Baby continued to be cranky on and off throughout the day, largely because her tube kept getting clogged. Once she fell asleep we decided to head out and let her get some rest, but we needed more Baby Time, so we went back to the NICU around 9:30 and stayed until just after midnight. That was a much nicer visit.

Today Leah got a visit from her Aunti Staci, her Grandma Barbie, and her Great-Grandpa Mannie, who held her for the very first time. She screamed for a minute or two once my grandpa was holding her, but after that she fell asleep pretty quickly. She must like him!

154
We are precious! Our little bow is adorable! We like to look at our Aunti Staci’s funny face.

020 005
“Aunti Staci is so silly!”

043
Does this even need a caption?

193 189
Wiiiiiide awake baby

086
Loopy baby

168
EmoBug

059
Sweet bug getting her Mic-Key button checked. She went through several outfits yesterday because it kept leaking!

054
Kinda vampire baby! Mandy had already mopped her up at this point, but she missed a spot! She kinda does look a little vampire-ish here. We should get her the vampire paci. Hahaha.

052 031
Tubeless baby! Little Bug had to have her tube out a few times yesterday.

027
Wide-eyed tubeless baby!

016
“What is it?”

105
Knocked out after a looooong and exhausting day!

122
Sweet calm sleepy-pie after her visit with Great-Grandpa Mannie.

143
Baby Burrito! With kitties!

Long days make for short blogs

It was a long day in the NICU – some of it good (yay for visitors) and some of it not so good. Leah screamed for so long and so loudly that blood started coming out of the suction tube. Poor kid had dried blood all around her lips and looked like a baby vampire. Will post more tomorrow. We should also have some cute pics for you tomorrow. 

No weight gain to report. Screaming fits count as exercise in Babyland. We burned too many calories today!