The Carslakes Come to See Lexi

The Carslake family came for a visit this weekend. We had originally planned lots of St. Louis activities with me tagging along very pregnant. The experience obviously has been a little different than originally planned. The girls were excited to see baby "Etsi," as Mallory calls her. They stood at the window as I got to change an ostomy bag for the first time. Not the best first impression of their cousin, but they both thought she was pretty cute, so it didn't phase them. I was excited the bag has stayed on for 24 hours, and Alisa and Scobie were both excited to finally get to hold Lexi. So far, she has maintained her weight (at least she hasn't dropped more weight), so we are excited about that. She's doing great, and we are loving all the holding and feeding time we are getting with her these days.

Showing Some Spunk

We found out that our daughter has quite a bit of spunk! Lexi must have decided that she didn't quite agree with the doctors' feeding methods. While I was changing her, she decided that she had had enough of her feeding tube going down her nose. So, she simply ripped it out (don't worry...that sounds worse than it actually is, but did freak Mom out a little bit). The doctor said that we should just leave it out for now, since she is taking bottles with no problem. We can always put it back in if need be, but so far, she's done great. We are proud of her for fighting and telling the doctors how it's going to be with her, despite her inability to talk to them. They took away part of her food, so she responded with "I'm not dealing with this feeding tube then..." Got to love her attitude!

I, of course, took the opportunity to dress her up in one of her fancy outfits and snap quite a few photos, since this was the first time with no tubes attached to her face. She patiently waited as I snapped a million pics and made her freezing by stripping away her blankets in the process. I figure she better get used to it, as I can't get enough of her!

A Little Setback

When setting our sights on the big picture, we must admit everything is going very well. However, today brought some news which likely will lengthen Alexis' stay in intensive care a little bit, disappointing a Mom and Dad very anxious to bring our little girl home. Over the past week or so, the NICU nurses have been increasing Lexi's milk feedings by 5 cc's every 12-18 hours, and she was up to 40 cc's (a little over an ounce) by mid-week this week. She appeared to be rapidly approaching the 60 cc threshold that represents a full newborn feeding and initiates discussions on a timetable for her to come home. Despite never being given a timetable to date, we were hopeful she might even come home in a week or ten days.

However, we discovered Lexi has lost weight in the past few days and is back down to 5 lbs, 5 oz, after having gotten back above her birth weight not too long ago. Plus, measurements of her output after feedings (don't worry... we will spare you the details) have been too high on some dimensions, indicating her intestines are not absorbing enough of the nutrients needed for weight gain and healthy development. As a result, her doctors have dropped her back to 20 cc's of milk per feeding, while amping up the glucose and fat she is receiving intravenously. They also are limiting increases in milk to 3 cc's per day and initiating a slower build going forward, which means a week from now is the soonest she can return to the level she was at yesterday. This news is not all that surprising, as her surgically-repaired small intestine is being asked to do 100% of the work while her large intestine lies dormant until future surgeries. However, it is disappointing nonetheless, as it represents a little setback and virtually guarantees Lexi's stay in intensive care will last a month or more when all is said and done. We figure that is when she was supposed to come home anyway and know she will do her best!

Good Genes

You probably think anxiously awaiting test results is a thing of the past for us since Lexi's vitals are stable, and she has been off oxygen for four days now. However, we just received some test results in the last 24 hours which represented news as good as any we've received throughout this whole ordeal. Extensive chromosome testing has revealed that Alexis has no genetic abnormalities. We were aware these tests were being done, but thought they were pretty routine until two doctors expressed concern and asked they be expedited. We truthfully never researched or inquired as to what conditions they were most concerned about, nor do we plan to now. We are just thankful that her medical issues, although exceedingly rare, are not indicative of any genetic conditions.

We celebrated this great news by... feeding her a bottle of milk, changing her diaper, and making some ridiculous faces at her. Dad was especially excited, so he handled the diaper changing duties and even managed to avoid Lexi shedding tears this time. Incidentally for those keeping track, this represented my fifth diaper change, a milestone my cousin Ryan, father of two beautiful daughters ages 1 and 9, is still trying to put in his rearview mirror. For those who have heard plenty of negative things about Ryan but don't actually know too much about him, Ryan is my oldest cousin who will soon regret his sarcastic response to Monday's blog posting. In fact, when we discovered the great results of the chromosome testing, the doctor who delivered the news actually congratulated us on Lexi not being genetically predispositioned to end up like her Uncle Ryan. Needless to say, it was quite the cause for celebration!

Grandma and Grandpa Bunch Hold Lexi

As excited as Grandma and Grandpa Bunch were to hold a grandchild for the first time, they had to do without this experience on their first visit to see Alexis, as she arrived in critical conditon and then underwent major surgery two days later. However, they returned to St. Louis this week and were able to finally get this experience. There still are restrictions limiting the amount of time Lexi can be hanging with family outside her crib, but Deb got to hold her for a little while Monday night, and Kevin was able to do likewise on Tuesday. We did not specifically ask them if they enjoyed the experience or not, but afterwards they asked us when we were going to leave town next, so we took that as a pretty good indication.

The ostomy nurse specialist did visit today. She gave Laura some great tips on the care and application of the ostomy bag. Turns out there was one item that had made it into the preparation supplies that has possibly been sabotaging the bag from sticking. So, after some changes and lessons, we feel comfortable that things will be better with the bag staying on for a little longer and not causing Lexi additional discomfort. Again, we love the care she is getting. This specialist is renowned and has been published in several well-known medical journals for her knowledge and research on ostomies. We just keep being grateful for where we happened to land for hospitals!

Daddy as Provider- for now

Not long after Mom got to experience feeding Lexi for the first time, I got to try my hand at feeding her a bottle. At this stage, Lexi still takes the majority of her eight daily feedings through the tube in her nose and IV's in her chest. However, twice daily we have the opportunity to begin introducing her to oral feedings so she can begin honing the skills which allow her to suck, swallow, and breathe simultanously. Incidentally, I also have been working on honing some multi-tasking skills, as I have been trying to take advantage of the ability to watch eight games simultaneoulsy on my MLB satellite baseball package. So, we swapped some notes on multi-tasking, found some common ground, and had a neat bonding experience.

Feeding Lexi a bottle also was a neat experience because of the feeling of providing for my child. 24 hours ago, my job in Anheuser-Busch's planning and development group probably would have been the first thing to come to mind when thinking of providing for my child, but today I am choosing to focus on the smaller stuff instead. In case you haven't turned on the TV today to anything but ESPN or the Cartoon Network, Anheuser-Busch is being taken over by InBev, a cost-cutting machine which figures to eliminate the three departments for which I have worked most closely - Planning and Development, Treasury, and M&A. This news doesn't necessarily mean I personally will be eliminated, but it likely means my job will be eliminated, which isn't exactly welcome news at this time. That said, it will be a long time before anything job related plays out, and I've got more important things to worry about right now. Plus, I'm not too worried, as we get Lexi's milk for free anyway!

Babies Hate Baths... and Ostomies

Sunday night was bath night, and I think it was good for Lexi to get the loving touch only a Mom can offer, as this weekend was tough on our little girl's surgically created ostomy and stoma. The bag which attaches to the abdominal wall around the stoma is supposed to be emptied every three hours and then changed every three days. However, several nurses have been unsuccessful in getting the bag to attach and seal properly, so it has been changed a half-dozen times in the last two or three days alone. These frequent changes have severly irritated the skin around the stoma, and even caused the ostomy itself to bleed. This concerns us since it means her small intestine is bleeding while positioned outside the body, and there are two things wrong with that picture!

We sought out the head nurse last night, but before we could express our concern, she expressed the fact she was bothered a great deal by it, so Monday an ostomy specialist will visit Alexis and hopefully ensure the sensitive, surgically-repaired area is handled much more comfortably going forward. These painful episodes have been upsetting, but they in no way change our opinion of the quality care she has received and in the NICU. We are discovering just how rare it is for an infant to require this type of procedure, and there are very few nurses who have ever had experience with ostomies on small children, including our nurse yesterday who just celebrated 20 years in the NICU. Although upsetting, we know we will get these issues resolved, and we still feel very fortunate that our concerns over the last ten days have shifted from life threatening surgical operations to skin irritation and ostomy bleeding!

Second Time's a Charm

Alexis is now free of all oxygen! She is completely breathing on her own and no longer needs tubes except for those needed to monitor her vitals and feed her. We are very excited about this progression over the last 24 hours, as an attempt earlier in the week found her breathing quick, shallow breaths and required she go back on oxygen almost immediately.

Her feedings have continued to increase as well, and she is taking a little bit by bottle, instead of everything via her network of IV's. It is great that she is self-sufficient for all of her vitals right now for the first time, and she just needs to concentrate on eating and healing for the most part. Several nurses have indicated that perhaps she will be ready to go home soon. We just wish we knew what "soon"meant in their world. We, of course, wish it meant tomorrow, but we are thinking it probably means at least a couple weeks in their terminology.