Four Generations Meet

This weekend Alexis had the opportunity to meet a great grandparent for the very first time. After diligently following the blog for last seven weeks, Great Grandma Betty made the trip from the Quad-Cities to St Louis to spend some time with her. Lexi pretty much snoozed away the time in Great Grandma Betty's arms on both Friday and Saturday, a sure fire sign Grandma's experience put Lexi at ease. We also carefully explained to Lexi the significance of four generations being together when Betty, Kevin, Brian, and Lexi hung out for a little while. Lexi immediately responded with a series of loud grunts, which we can only interpret to mean she was pretty excited about the whole thing.

On the medical front, Lexi has handled her feedings well these past few days and is now up to 35 cc's by bottle, with the rest of her nutrition still coming from her IV's. The EleCare formula Lexi is using, which has proteins already broken down for digestive ease, appears to be helping, as her output has been less and her weight gain has been excellent. However, the low motility section of her small intestine, as well the fistula which developed more recently, still are problematic enough that more invasive and immediate action likely will be necessary in the coming days. We discussed possible courses of action with Lexi's surgeon earlier today, and will do so again with her surgeon and medical team tomorrow. Aside from those discussions, though, this weekend has been about celebrating Lexi and continuing to show her off to family, who is all too willing to allow us to do so!

How to Change a Diaper

I want all future Dads reading this blog to pay attention. There is a misconception about fatherhood that I must bring to your attention, and it relates to changing diapers. You've probably heard that babies pretty much just eat, sleep, and go to the bathroom. I will vouch this much is true, and since babies often breast feed and sleep away much of the day, Dads really don't have to worry too much about the first two parts. Changing diapers, then, is the part of the equation where Dads often come in, so it's an important skill to learn.

When it comes to changing diapers, I was mislead into believing it's as easy as removing the old diaper, wiping, and putting on the new diaper. However, I have discovered that there is quite a bit more to it than that, so I wanted to give you a heads of what the experience is really like. Hopefully these steps will give you a more complete picture of what's really involved, so that you won't be as shocked and unprepared as I was.

1. Lay your child on a flat, clean surface; Ensure baby wipes, a clean diaper, and a pacifier are nearby, with the pacifier being most important; Slowly work up to calling the pacifier a 'binkie' like the nurses do, but don't forget to first hand in your man card at the door.

2. Undress your child; Since she can only wear outfits with snaps so IV wires and leads can sneak out her clothing, pay particular attention to how the snaps are configured so you have a prayer of reconnecting them again.

3. Remove Pavlik Harness; Undo the two shoulder straps, then the strap across her chest, then the two straps on each leg, being mindful to manually hold her legs and hips at precisely a 90 degree angle in the process; Remind yourself that you a raising a baby girl, despite the fact you have been asked to position her like a frog at all times.

4. Expect an audience when working with the Pavlik Harness; Other parents obviously will stare at your child's crazy harness, but so will other nurses, who also will be mesmerized by this funky contraption.

5. Hold your child's hips firmly in place with one hand; You will need your other hand free to do the rest of the work, so find a comfortable position. Grow a third hand if feasible.

6. Move Pavlik Harness to the side; It cannot be machine washed, so no diaper leakage or ostomy output can come in contact with it; Refrain from asking the orthopedic specialist to provide a second brace given the inevitability of an ostomy bag explosion, as they will simply look at you like your child is from outer space.

7. Empty your child's ostomy bag; Work stool down to the end of the bag, using gravity as your best friend, and then open the bag and insert a medical syringe to withdraw contents. Do so with a towel or washcloth underneath, as gravity also becomes your worst enemy once the bag is open.

8. Measure output in syringe; Document amount and appearance of stool output, paying particular attention to color, consistency, and historical trends. Provide evidence to your child's nurse prior to disposal, while unsuccessfully attempting to avoid a lengthy conversation about the stool output.

9. Change ostomy bag; Remove old bag, clean the skin with sterilized water, dry the skin, and then affix new bag using 1" hole pattern and medically formulated sealant paste; Strive to do this in world record time, as additional output can soil the area you just cleaned at any moment, and your child undoubtedly will hate you every second of the way.

10. Remove old diaper; Carefully fold and then weight it; Inspect and document urine color, again trying to avoid commenting on its unique characteristics or starting a full fledged conversation about it.

11. Wipe using a front-to-back technique for girls; Prepare to have your intelligence insulted with over 100 reminders of the importance of the front-to-back technique; Take enormous pride in the fact you knew this, as it might be the first thing since step #1 in changing a diaper you actually knew going into fatherhood.

12. Put on clean diaper; Ensure potential leaky areas around the legs are properly secured, all the while receiving numerous pointers from Mom; Resist the temptation to point out that the only leaky diaper disaster came from one she had changed, as nothing good will come from pointing that out.

13. Put on Pavlik Harness; Ensure shoulder straps are not too loose, chest strap is not too tight, and leg straps restrict range of motion to a maximum of 90 degrees outward and a minimum width of two fingers inward; Quickly perfect this process, as you will be made to feel like your child's legs will spontaneously fly off if you don't.

14. Dress your child; Ensure the broviac IV's and heart monitor leads come out the third snap in her chest, and the oxygen monitor leads and ID bracelet come out the last snap near her foot; Inevitably you will trap something inside her diaper or clothing, so have thick skin when the nurse laughs and says under her breath that Dad must've done the last diaper change.

15. Repeat these steps every three hours; Avoid cursing the people who told you diaper changing was a 60 second exercise you pick up very quickly.

Brace Yourself

Lexi has morphed into the Pillsbury Doughboy virtually overnight. We don't mean she is retaining water, and none of her antibiotics are steroids, so those aren't the culprits. As a matter of fact, she is gaining weight at a very normal pace and is currently at 8lbs 8 oz, so she is perfectly healthy in that regard. However, as you can see in the picture, she has managed to bulk up far beyond what that weight suggests, and she all of sudden looks like she's training for sumo wrestling in the next Olympics.

The Orthopedic Specialist finally fit Lexi for a harness aimed at correcting her hip dysplasia, and this has added some serious bulk to her! This Pavlik Harness wraps around her shoulders, and then down her body to keep both legs and hips out at a 90 degree angle to her body. This should help keep her hips in the proper place, and avoid their moving in and out of joint, until they can develop properly. Early ultrasounds diagnosed this issue after routine exams revealed her hips clicked when moving at certain angles. They will repeat ultrasounds of her hips every few weeks to determine how the device is working and how long she will have to keep the brace on. We are hoping not too long, as Lexi really enjoys moving her legs, and the harness prevents her from stretching out and having the freedom she craves. Bath time is the only time she gets to enjoy this freedom for now, though, so we hope maybe she will learn to like her baths more than she has up to this point!

The Latest Theory

After Lexi's radiologist, surgeon, and NICU medical team reviewed her barium test results and series of x-rays, they devised a theory that would explain most of Lexi's major issues these past few weeks. It still is just a theory, and we're not naive enough to believe we now have the answers for which we've been searching. However, the theory would explain her struggles with increased feedings, as well as her CRP spikes and propensity to become infected, and those are the two primary factors preventing doctors from attaching a timetable to when she might be able to come home.

Yesterday's barium test, and subsequent series of a half-dozen x-rays, revealed that there is not a complete obstruction in her GI tract, which is very good news. However, it did reveal one sizable stretch of her small intestine they described as having very low motility. In other words, part of her small intestine near her ostomy opening will pass barium or milk through it, but at a significantly slower pace than a healthy, fully developed intestinal tract. This part of her intestine would seem to make larger volumes of milk difficult to handle, while also creating an environment ripe for harmful bacteria to grow and fester. Therefore, it is possible this stretch of her intestine is making full feedings problematic and infections likely.

The good news is that we might finally have a comprehensive explanation for most of her troubling signs and symptoms. The bad news is that there is no quick fix. The only way to eliminate her susceptibility to infection would be to surgically remove the troublesome portion of her intestinal tract. However, surgically removing part of her intestine is a last resort considering how long the low motility portion is, and considering the risks associated with infant surgeries in general. Also, the only way to mitigate her susceptibility to infection would be to systematically keep pumping antibiotics in her. However, this would cultivate bacteria resistant to antibiotics, destroy beneficial bacteria, and carry with it harmful long-term side effects related to some of her organs. So, the hope is that we can continue antibiotics in the short-term, slowly introduce increased feedings over time, and allow her slow intestinal path to mature to the point it can handle full feedings with adequate motility. Considering what Lexi has had to deal with thus far, we hope it's not too much to ask that this one thing go exactly according to plan from here on out so we can finally get her home!

Opposing Signals

Lexi and her body are giving us opposing signals again. She once again is off oxygen, loving her feedings, having good digestion as suggested by her output, and looking cute with the new bow her nurse put in. She is awake more these days for us to play with and enjoy her beautiful eyes, too.

However, x-rays this morning revealed some distention in her intestines again. That combined with yesterday's new fistula had the doctors concerned once again about blockage in the small intestine. So, Lexi got transported down to Dr. Applewhite's office (aka the x-ray room) to get a third barium test. Of course, she slurped down the 40 cc's of barium with no problem (further evidence that her mouth agrees with Mom and Dad's plan...if we could only get her intestines to agree as well!), and they studied it's flow through her body. After 6 subsequent x-rays, they concluded that she doesn't have a blockage or any new route that has grown as a result of an infection. Although that is great news, it still doesn't give us any insight into what caused her belly to distend once again, especially when yesterday we thought maybe we knew what was going on. So, the roller coaster continues. We'll let you know tomorrow whether we are headed back up or further down...

Potential Breakthrough?

Lexi's CRP count came down to 0.6 this morning , and her other counts have stabilized, so we're feeling pretty excited that her latest bout with illness might be under control again. Just as importantly, we might also have actually gained some knowledge today about what's been causing Lexi's broader problems over the last several weeks.

In the last few days, we noticed a new external hole had developed next to her ostomy. Her surgeon and doctor looked at it today and decided that it looked okay and didn't need surgery, for which we were grateful. Actually, it didn't even lead to additional tests, which shocked Mom and Dad who had prepared themselves for that. The question then becomes what was the cause. There are two theories (of course, we don't know which is right, but we are okay with both). One explanation is that she has been fighting an abscess in her intestines that then shot off a route to the outside of the body to help it drain. The other theory is that her ostomy split and now has two holes. Although these sound scary, the first is actually a good thing, as it is helping get rid of the harmful bacteria and inflammation that antibiotics alone can't heal with an abscess. The second isn't good or bad, but it could easily be dealt with on her next surgery. Both would explain, at least for this second round of high inflammation, what happened with her counts.

So, we are hoping this is finally a glimpse into what has been going on with her body. We will resume working up on feeding amounts and hope she remains healthy and can surpass the 30-40 threshold that has caused problems twice before. The doctors want to watch her closely and make certain that her intestines can handle the full feeds, and that we aren't also dealing with a slow part of the intestines that can handle small amounts, but not full feeds. This will be a wait and see process over time, though. For now, we are glad to possibly have an idea of what's been going on, and we are very excited about the signs indicating that she is returning to normal again.

Princess of the NICU

Lexi apparently was awake much of the night last night, so it was no shocker when she slept most of the day today. There was no Sunday brunch, and there was no football on tv, but she definitely enjoyed a lazy Sunday afternoon nonetheless. We tried reading her books and introducing her to a few toys, but she preferred just to be held and snooze a little bit. Her requests for peace and quiet over the past six weeks largely have been ignored by nurses wielding long needles and doctors rolling in huge medical devices, but with no tests scheduled for today, she actually got her wish to rest a little bit.

Since Alexis is one of the older babies in the NICU, and the only one perched on a huge boppy pillow in a crib, some nurses have started calling her the Princess of the NICU. She definitely looked the part this afternoon as she got some beauty rest. Unfortunately for Lexi's nurses, caring for the princess also comes with the cost that she is very high maintenance, which is her other reputation. Most babies require bottles, diaper changes, and the occasional bath or monitor probe changes. These activities only scratch the surface of Lexi's needs, which also include acid reflux and pro-biotic meds by syringe, antibiotic meds by IV, special formula concoctions, blood sugar heel sticks, ostomy bag changes, ointment applications, broviac dressing changes, and many other things too numerous to mention. In fact, nurses on Lexi's side of the NICU typically are responsible for two babies, and one couple this week specifically requested their nurse not be assigned Lexi as their other child because they were feeling slighted! Personally, we would rather have Lexi in a position where she didn't need and receive medical attention quite so frequently. However, we are proud of the fact that despite Lexi's being high maintenance, she still has the nurses loving her and calling her the Princess of the NICU.