Mixed Messages

As promised, Alexis' next major round of counts came in this morning, and they were largely positive. Lexi's CRP levels fell to 1.5, making it highly unlikely we are headed for a rematch with the nasty infection she fought a little while ago. Her red cells and platelets also have remained stable, albeit a little bit low, so we are not too worried about that right now either. However, her white counts continue to be pretty volatile and puzzle her doctors. They were 11.8 today, which means they returned to a normal range in absolute terms, but their composition in terms of immaturity and blast cells continues to be highly unusual. These white cell terms obviously set off very troubling alarms after Laura's Dad's battle with Leukemia, but our doctors, as well as a hematologist who studied Lexi a few weeks ago, continue to reassure us that our worst case scenario worries are unfounded.

Despite two doctors examining Lexi during rounds today, there actually was no change to her protocol. She remains on two antibiotics in case she is battling a minor infection right now. She remains on 20 cc's of special formula, with the amino acids already digested, in case there is a damaged portion of her GI tract causing the inflammation. She remains on meds for acid reflux to combat her discomfort and prevent esophagitis. And she remains on oxygen and IV's for the rest of her feedings to allow her body to focus energy elsewhere. Monday likely will bring yet another meeting of the minds where her surgeons and primary care physicians get together to compare notes and brainstorm possibilities. In the meantime, we'll continue to make Alexis as comfortable as possible and continue to play with her when she is alert. I can tell you we definitely plan to read her books as a much faster pace, as maybe if she can grasp the English language quickly enough, she can tell us where it hurts and tell us what's wrong!

Play time

Not much new information on the medical side today. We are in a wait and see pattern for now and will get more counts tomorrow to give us an idea of how we are doing. So, instead, we've been playing and experimenting with different toys and gear that we brought and trying not to focus on the medical side (although it is hard to ignore all the lines coming out of her!). In addition to her new boppy she got from the hospital yesterday, we also brought in her bouncy seat to make her more comfortable. As you can see, she highly enjoys the snuggle she gets when resting in it.

We have also been playing with toys, reading books, and doing book work (yes, mom and dad have been making her focus her eyes on black and white pictures...can't ever start too early with homework!!). She seems to be a fan of Dr. Seuss and Eric Carle. She also likes her rabbit blanket and the textures for her hands. We are trying out different toys to continue to stimulate her and make certain she knows that all touching does not include needles! So far, we think she is getting the idea, and we hope that her favorite play time is still snuggling up to mom and dad.

Slight Improvement

Lexi's numbers slightly improved today. Her CRP count came down slightly to 3.8, which is a good sign. So, we will keep her on the 2 additional antibiotics for at least 10 days to treat whatever it is that she has. Although we don't know the cause or exactly what we are dealing with, the fact that she is responding and is not as affected as last time is good. The doctors still try to ponder what has our little pumpkin down.

They have also determined that she does have acid reflux. So, we came down on the feedings, introduced some medicine, and are trying some special formula. We're hoping some of this combination helps her feel better as well. They also called in an Occupational Therapist to see if she had any suggestions to lessen the discomfort from the acid reflux. We did score a really nice boppy and cover, so thanks United Health Care for that freebie! We always try to focus on the positives of this experience (so far unlimited breast milk containers, a free boppy, and Laura not having to deal with the umbilical cord falling off, which she was not looking forward to), and of course focus on our beautiful baby girl. We're hoping her acid reflux does get under control, so we can start increasing her feedings again as well. Little steps at a time to help all her issues, and hopefully we'll have one happy baby soon!

Elevated CRP Levels Again

The good news is that Lexi appeared to be doing well today, as she took her 35cc feedings consistently and exerted energy crying and being alert at the appropriate times. The bad news is that her counts continued to tell a different tale for the second straight day, so we're back to worrying a bit about where this is headed. Her platelets and red blood cells were stable after yesterday's transfusion, so that was good. However, her white blood cells showed a higher degree of immaturity, and her CRP rose to 4.5. These levels of inflammation are still a far cry from the 12-14 levels when her last infection was at its worst, but after being coached for weeks about how the trend is more important than the absolute number, we can't be too pleased.

There have been some good signs to latch onto, though. She isn't running a temperature and doesn't look exhausted, so that gives us hope we're not dealing with something as severe as her last infection. She also seems to have gotten a bigger and quicker lift from her oxygen and blood transfusions this time around. Thus, were hoping this step back can be measured in days instead of weeks when all is said and done. One thing is certain. We're not quite as anxious to have Lexi's doctors and nurses discuss moving her to the South NICU. Two times now, paperwork has been started to move her down there, an indication she is ready for less intensive surroundings and close to coming home. Both times she promptly got sick and needed the constant tests and monitoring that only the North ICU is designed to handle.

Roller Coaster Going Down

We were always told that for every two steps forward in the NICU, you take one step back, and this was the case last night into today. We aren't certain what our step back is, but we know we are taking one. Alexis was really tired yesterday, and it got harder and harder for her to take her feedings. By last night, she was really pale and refused to even put the bottle in her mouth. So, after running some blood tests and x-rays, they determined that they wanted to give her some red blood and get her back on the oxygen. Her blood count also revealed an elevated CRP count once again (2.5), as well as an increase in the immature while blood cells that help fight infection. Since there is speculation that her infection might be back, they started her back on 2 antibiotics in the middle of the night.

On the positive side, her x-rays showed a normal belly and other vital organs, which is a great sign, so her feedings are continuing at their current level. We have several doctors' opinions, which range from thinking the infection is back to believing a combination of acid reflux and anemia is what is getting her down. One thing is clear: we had a tuckered out girl on our hands late last night and early this morning. After receiving her blood transfusions, she has perked up a lot and has taken her full feedings all day, which is great. So, we will wait to see how her counts progress to see if we can figure out what has caused this downward swing.

40 Days and 40 Nights

Alexis is 40 days old today, and she has spent 40 nights in the NICU. There has been no flood here (at least not like the disastrous flooding in Iowa), and St John's NICU is closer to a technological marvel than the wilderness. However, it's been a wild first 40 days and 40 nights of her life with a flood of emotions, that's for sure. Lexi is not out of the woods yet, but thankfully all indications are that she has survived her first 40 days' worth of challenges and is heading towards recovery and normalcy. She even has put on a few pounds to make herself stronger for future challenges, as she is up to 7 pounds, 8 ounces, and is considered full term. Despite the surroundings, these 40 days and 40 nights with our little princess have been wonderful.

Bunch Bonding Time

With Jason being in town from Florida, and Alexis being healthy once again, Grandpa Kevin and Grandma Deb came down to St Louis this weekend as well. Just as Grandma Phyllis had experienced earlier in the week, they were pretty excited to see Lexi looking so good, and they were able to get some additional one-on-one time with her. She even is off all of her major antibiotics now, so she is a little easier to hold and maneuver these days.

More extensive counts were done on Sunday morning than had been done the past several days, and the news was good once again. Her CRP count was 0.6, so she still has some inflammation, but continues to trend downward and likely has successfully fought off the infection causing most of the inflammation. Her white counts were down to 10, and her platelets were up to 142, so both of those continue to trend in a positive direction as well.


Now, the mission from here on out is pretty clear -- increase and tolerate feedings, and avoid any more unwanted detours. She is half-way home at 30 cc's (one ounce) on her feedings right now, and if she can continue tolerating her feedings well, hopefully it will soon be time to initiate discussions on when we can move her to the South NICU, the least intensive care area of St John's NICU. At that point, we can finally start to get a timetable on the ultimate goal -- getting her moved to the nursery at the Bunch residence!