Saturday Night Shots

Lexi has seemed much happier today, so we hope her going back on some reflux meds last night did the trick as far as easing her discomfort goes. So what did we do now that she is comfortable and happy once again? We signed consent forms for her to get several shots over the next couple of days. So much for her enjoying the weekend!


It's bad enough that Lexi has to endure daily doses of post-surgery healing meds, antibiotics, probiotics, acid reflux meds, etc. In fact, the hospital employee who delivers medical supplies and prescriptions from the NICU pharmacy said to us the other day "Boy, she has enough stuff in here to choke a horse." (Thank you to that individual by the way... that is precisely what every parent wants to hear when their child is having a rough day.) But now we're going to pile on and add some vaccinations to the mix as well. We didn't really think about it, but just because she is not healthy enough to go to routine pediatrician visits, doesn't mean she can go without recommended vaccinations at milestone ages and weights. So, between today, tomorrow, and Monday, Lexi has and will get shot up with all the usual suspects like Hepatitis, Diphtheria, Polio, MMR, Influenza, Pneumococcal, etc. The silver lining is that while some parents might dread their baby's first shots, we actually view it as something that's routine and normal, and that alone is kind of exciting in our book! We feel like we're piling on a bit by adding more needle sticks to her agenda, but all Lexi seems to do is look at us and say "This is the worst you're going to do to me... this is nothing!" Guess that's about right in her frame of reference.

Tough Tradeoffs

There were no big tests and no major news from the NICU today, which quite frankly is fine with us. The only abnormal circumstances related to Lexi's overall demeanor, as she was pretty cranky and hard to please for the majority of the day. Normally parents probably would write something like this off as a tough day for their little one and move on without giving it a another thought. However, when you combine the fact that Lexi is rarely fussy despite being poked and prodded on a regular basis, with the fact that NICU parenting puts you on edge to being with, we were definitely concerned.

Given those circumstances, we were a bit more inquisitive than normal throughout the day (a pretty strong statement for us), and we eventually discovered she had been taken off of her acid reflux meds a day or two ago. Just as with all drugs, decisions to start or stop her acid reflux meds reflect the constant battle of the benefits of drugs with their side effects. If acid reflux is causing Lexi a lot of discomfort and goes untreated, it can damage her esophagus, so prevention drugs are necessary. However, if Lexi's acid reflux is not that severe, then avoiding prevention drugs is preferable, as these drugs make the stomach and GI tract less acidic and allow harmful bacteria to grow more easily. Because Lexi has appeared uncomfortable for much of the past two days after eating and while lying down, the decision was made to re-start acid reflux meds this evening, but try less concentrated ones to try to strike the best balance. It's frustrating to face more and more of these tough tradeoff decisions as time goes on, as it always feels like a race against the clock, with the clock starting to get the upper hand as days turn to weeks, and weeks turn to months. This acid reflux 'Catch 22' probably is not a big deal in the grand scheme of things, but it is frustrating because it is just the tip of the iceberg with these no-win situations, as we can't help but worry about the effects of her long-term antibiotic use, the effects of several months of continuous IV's on her liver, etc.

Alright, this posting started with the statement that it was a pretty good, uneventful day, and then all of a sudden morphed into irrational fears of long term organ damage. I guess that's proof that a few months in the NICU can make you a little crazy, even if you keep reminding yourself to take things one day at a time and not worry about the 'what if's' all the time. Lexi might have had some more discomfort today than we would have liked given how much she's been through already, but what matters in the NICU is what is happening right now, and that is our little lady sleeping peacefully in her bouncy seat. Now, all we need to do is figure out how to transfer her to her crib for the night without disturbing her, and we'll have ourselves a nice little finish to the evening!

At Her Pace

Lexi's intestines have decided not to cooperate once again. We keep trying to have pep talks with them, but they seem to have a mind of their own. Recently, Lexi has started "dumping" again (yes, this is the technical term doctors use and not our own terminology). It actually describes pretty accurately how her intestines reach a certain breaking point and then begin to dump out the milk/formula instead of absorbing it. So, she got put on a pedialyte diet for 12 hours, which she was not happy about. Later today, we reintroduced her formula at 40cc's, which is a few notches below the 55 cc's she was taking previously. She was very excited about getting her formula back and is once again a happy camper. We are hoping this step back, followed by slower increases in the coming days, will work with her intestines.

Regardless of what or how much is in her bottle, Lexi continues to eat with her eyes closed. Apparently, this is not the norm with most babies, as every time she has new nurses, they all report, "She wouldn't open her eyes, but she still took her bottle really well." We just laugh and explain that's how our little girl prefers to eat....eyes closed and at her own pace!

Word of the Day: Cellulitis

As new parents, we thought the word of the day for Alexis would come from Sesame Street or some children's program. Unfortunately, in the very early stages of her life, the word of the day always seems to come from the medical community in diagnosing a new issue Lexi is dealing with. Today we were introduced to Cellulitis as the word of the day. A dual purpose ultrasound was ordered and performed, both to check out her hip dysplacia at the two-week mark and to investigate the redness on her abdomen that was described a few days ago, and the latter was diagnosed as a case of Cellulitis.

Cellulitis essentially is a deep tissue infection as a result of cracks in the skin. It commonly is associated with cuts, burns, and blisters, but in Lexi's case it likely came from a much bigger crack in her skin - her ostomy, which in crude terms is nothing more than an open wound. While certainly not thrilled with this discovery, we are glad to have a diagnosis for the redness, and we are optimistic it can be treated effectively. The redness has persisted for quite a while, yet her CRP counts have not gone north of 0.7 during that time, so that makes us feel as if the deep tissue infection is just festering a bit and can be treated with the introduction of an antibiotic.

It has now been over a week since Lexi's most recent surgery, and she appears to be on a solid road to recovery. She had one tough day at the front end of last weekend, but has looked comfortable for several days in a row now. She also has not experienced any bleeding for several days, and her bruising is barely visible as well. As long as her Cellulitis does not flare up into something more challenging, and as long as there continues to be no major post-surgery surprises, all appears to be well with our little girl as she heads towards her final (hopefully) surgery in the coming weeks. Lexi's surgeon reaffirmed the 4-6 week time frame for the healing process again today, so that means at least another three weeks before we have to worry about the operating room once again.

The Many Faces of Lexi

Lexi turned 2 months old today!

As Laura alluded to in her Lessons from Lexi post, our little girl has quite the wide array of facial expressions that constantly keep us entertained. So, in celebration of her two month birthday, we thought we would share her thoughts with you by showing you, and translating for you, these faces she has developed over the past two months. Because she has been confined to the NICU, most of you have not had the opportunity to meet her and interact with her yet. Hopefully this post will educate you on exactly how she will be trying to communicate with you when you finally do get the chance for that first meeting!

'Kissy' Face. Lexi shows this face when she needs a boo-boo kissed, or when she just plain needs some love and affection from you. She is a people person, and kisses are generally how she prefers to handle first meetings. She also shows this face whenever Great Grandma Betty is around, as Lexi has figured out at a very young age that there's just no escaping Great Grandma's hello and good bye kisses, no matter who you are or how you're feeling!


'Don't Even Think About It' Face. Lexi will make it abundantly clear when you are about to do something she doesn't approve of, as she will glare at you with one eye open. This face most often comes out when doctors are at her bed side discussing whether further invasive tests are necessary, or when Mom and Dad are getting her evening bath ready. It also has been seen when Grandpa Kevin launches into a fishing story she's already heard ten times.


'Grumps McGee' Face. Lexi is a great sport most of the time, but this is how she shows you she's having a tough day. It is guaranteed to be seen when an ostomy bag change is forthcoming. She also will show you this face if you have taken one too many pictures with the flash on when she is trying to get some sleep. She also has given this face to Grandma Deb to express the fact she didn't appreciate the hereditary six fingers she got from her.


'Pouting' Face. Lexi puts this face on display when she's frustrated, and it serves as your warning signal that a tempter tantrum is right around the corner if circumstances don't change quickly. Tricking her into ingesting medicines that taste bad, as well as having the batteries in her mobile die, are known to trigger this face. Sadly, this face also was seen as recently as yesterday evening when I reported to her that the Cubs had lost their third consecutive game.


'Surprise' Face. Lexi usually knows what's going on, but if you unexpectedly spring something on her, you will get this face. She busted out this face when told her request for a private room in the NICU had been granted, as well as when she was told what her outfits at Gymboree and Janie and Jack cost. Back on July 13th, this face also was seen when Anheuser-Busch's Board of Directors accepted InBev's $70 per share takeover offer.


'Boxer' Face. Lexi will give you a heads up if you are about to do something you'll regret, as she will show you this face and assume a boxer's stance to prove you want no part of messing with her. You will see this face start to take shape if you come at her with the intention of drawing blood or running a new IV. However, you can guarantee this pose will be out in full force when Lexi is running a fever and you inform her exactly how her children's Tylenol needs to be administered.


'Innocence' Face. Lexi will show you this face whenever you have the nerve to suggest she might not be perfect 100% of the time. When her monitor alarms go off and nurses quickly rush in, only to discover they cease the moment they walk in, it's a safe bet this face will greet them. These puppy dog eyes also inevitably will be the last thing Mom and Dad see every night when they head home, even if she appeared to be sleeping seconds earlier.


'Happy' Face. Lexi's smiles have been well documented, so you probably can interpret this one for yourself. Lexi can always be counted on to greet Mom and Dad with this face as she experiences things she loves like Mom's compassionate touches and Dad's witty sense of humor. There are theories refuting that last sentence which suggest the timing is coincidental, or that a certain bodily function is responsible, but these alternate theories are simply untrue.


'Seriously?' Face. Lexi has a face which clearly expresses to you her utter disbelief of a given situation as well. You can almost hear her muttering 'Seriously?' under her breath as she looks at you out of the corner of her eyes. This face has been given to the Orthopedic Specialist, as in "Seriously, you expect me to wear this ridiculous harness for the next couple months?" It also has been given to scores of doctors, as in "Seriously, you jokers haven't figured out what's wrong with me yet?" It even has been given to Grandma Phyllis a time or two, as in 'Seriously, you get more emotional about my medical issues and worry far more about this situation than I do!'

They say trying circumstances build character. If the facial expressions and personality our daughter has developed just two short months into her life are any indication, we're inclined to say we agree with that statement.

NICU Manicure

Alexis got a manicure today. Surprisingly enough, one of the perks of being in the NICU does not include nail treatment, so the manicure actually came from Mom. Since nails and throw up were the two things I refused to do with babies, the former because I'm scared to death I will cut them and the latter because I would join them, I was excited that at least for the first couple months of life in the NICU, I would have expert training on cutting her nails. However, this actually turned out not to be the case. We have gotten good instructions on lots of things, but cutting nails is one service the NICU does not offer. Instead, we brought in our own supplies and performed this task on our own. I still refused to use a finger nail clipper, so Lexi got her nails filed down instead. They were long enough that they were threatening to start doing some damage, so we experimented with the fine art of filing baby nails. Today was a successful trial run on the art of baby manicures...I just hope that track record continues.

On the medical front, Lexi is still doing great. Feeds were increased yet again today to 50 cc's, so she appears to be charging full speed ahead. The only potential concern surrounds some bright red skin that starts near her stoma and extends across her abdomen. Her general doctors have watched this closely over the past several days, and her surgeon even came by at their request today to check it out. It doesn't have the characteristics of simple skin irritation, yet it doesn't really have the characteristics of an abscess underneath the skin either. So, the decision was made to continue to monitor it closely going forward, and also repeat CRP counts for the next several days for any evidence of inflammation and infection. Fortunately, today her counts looked good once again, coming back at just 0.3, so the early indications are that this redness is not the result of an infection brewing. So, this good news once again gave us the opportunity to enjoy things like manicures rather than worrying all day about elevated CRP counts or those things. Our Labor Day weekend certainly was not the usual one filled with cookouts or social activities, but Lexi's continued progress made it a great Labor Day nonetheless!

So Far So Good

The three of us have had a pretty good weekend. Alexis appears to be feeling well and is showing very few signs that she had surgery earlier in the week, outside of a little bruising and a few tender spots. She also has been more and more awake during the past two days for us to be able to play with her and read her some stories, which has been nice.

Lexi's first counts since the surgery came back and all looked pretty good, with her CRP at 0.7, and the rest of her blood counts pretty much right on target. It has now been 72 hours since Lexi went off antibiotics, and it doesn't appear right now that her infection is coming right back, which was a huge concern. We are hopeful that she has kicked whatever was getting her down, but are trying to stay prepared should it still creep up on us again. Her doctors have continued to increase her feedings, too, so she is now at 45cc's for the very first time. With a goal of 60 cc's (2 ounces), we appear to finally be only a few steps away from full feedings. Lexi appears to be getting adequate absorption from her special Elecare formula, and if she can continue up to 60 cc's, the discussion can finally begin on getting her off the IV's which have been connected to her 24/7 since the day she was born.

Clearly several if's still remain, and we must remember the inevitable 'two steps forward, one step back' mantra of the NICU . This weekend, though, we are choosing to focus on the fact she is recovering nicely from Tuesday's surgery, has no major evidence of infection, and is even tolerating feedings well. Hopefully this rare trifecta holds up in the days to come as well, so we can enjoy some extended play time with Lexi and not be interrupted by any more unwanted surprises along the way!