Waving the White Flag

We're waving the white flag in the NICU this evening! No, we're not giving up on Lexi conquering her medical issues, as we still think she's the toughest cookie around. Instead, we're waving the white "W" flag in celebration of the Cubs win over the Cardinals this afternoon, a victory which clinched the Central Division title.

The Cubs have a tradition of waving a white "W" flag atop Wrigley Field for every Cubs victory, so that commuters riding home on the Red Line can glance up and quickly see if the home team won or lost. We figured we would extend the same courtesy to the doctors and nurses here in the NICU, as we thought that they, too, might be curious how the Cubs-Cards game came out this afternoon. We have developed some great relationships with many nurses over the past couple months, and as is the case with most great relationships, it comes with some joking around and giving each other a hard time from time to time. Given it's baseball season, some nurses who are huge Cardinals fans have chosen our baseball team as the subject matter for giving us a hard time on more than one occasion. From finding red bows in Lexi's hair, to being gifted Cardinals gear for her, we've come to appreciate this rivalry even more in recent weeks. So before any accusations of our rubbing it in start to roll in, you must understand we have taken more than we have dished out to this point. Plus, the area of Lexi's bulletin board with the white "W" flag, as well as the sign to the right of it, looked a little bare, so we just were doing our part to decorate the room for the betterment of all.

You also probably notice in the picture that Lexi appears to be snoozing away, despite the excitement that accompanied this championship victory. We feel compelled to tell you that Lexi has had some sleepless nights recently, nervously waiting for the Cubs to clinch a post-season berth. Now that it has happened, you can see she is actually sleeping happily and soundly for the first time in quite a while.

Beefing up for Surgery

With surgery only a week away, we were excited to see Lexi tip the scales at over 10 pounds tonight. The bigger she is, the stronger she is for surgery, so we cheered this milestone. This next week will be focused on preparing for surgery one week from today. Besides gaining weight, these preparations include finding a nice home for her recovery, preparing ourselves to not be able to hold her, and estimating how much longer we will be in the NICU.

This last one seems like a never-ending question. We know that we will have at least another month after surgery, very likely two months, and possibly even longer, so we are preparing ourselves mentally for that. We are also trying to put the idea in the nurses’ heads that Lexi will need her own space when she gets shipped back North for her recovery. We’re hoping her cuteness scores her points towards that goal, as well as her age. After all, the “big kids” need their own space for play time and sleep time, so hopefully she will get that. Finally, we know that this surgery will be a longer one with a deeper anaesthetic, which equates to longer time on the ventilator after the surgery. We are preparing to once again not be able to hold her for a couple days, which will be hard after being able to hold her all we want lately. We know this is necessary for her recovery, though, and hopefully this surgery will get us on the road to coming home where we can do whatever the heck we want with her (within reason and with restrictions from me on Brian, of course!)

Back to Teaching

When I got my masters in teaching, I thought I would spend the rest of my life teaching high school English. As all of you know, my life has led me in a different direction to the travel industry. So, I was surprised when the opportunity to teach came back so quickly and sooner than planned. No, I did not accept a job at a high school. Instead, I got invited as a guest lecturer...for a group of nurses.

Most of you are probably laughing, as science was never my strong suit. However, Brian and I have embraced the issues that Lexi has encountered and have tried to learn any little way we can help her out. When we were having issues with the ostomy bag staying on early in this journey, I took it upon myself to learn the procedure, as originally she was to have an ostomy for 6-9 months. I figured I would have to learn it eventually, so why not start then. I should have counted the number of times I have now changed the bag, but in doing this so often, I have gained some knowledge and learned my own technique. I also should have counted the number of times I have heard, "We can only get the bag to stay on for maybe a day, how can you get it to stay on for 3?" As a result of this reputation, I was invited to be the guest speaker to a group of nurses meeting to establish an ostomy bag procedure within the NICU. I talked to them about my suggestions, as well as the do's and don'ts of ostomy bag changes. I'm hoping, if nothing else, the fact that Lexi has had to go through this will at least lead to better procedures which can help future kids in her same position.

I also saw an opportunity with this, and I said if I was going to speak, then Lexi got to come with me (figured a change of scenery couldn't hurt). So, Lexi got a brief road trip and change of scenery, and I hopefully helped out future families. I also have begun to count down the number of ostomy bag changes that we have left in the next week leading up to her final surgery. Although I like the opportunity to make a difference, I will not miss the ostomy bag when she is reconnected next Friday!

Lexi: From Head to Toe

The care here at St John's Mercy officially has become too good. That might sound impossible, but it's the truth as far as we're concerned. No, we don't have any major issues with the doctors and nurses, and our opinion of them continues to be excellent. However, as scores of other specialists have visited her in recent weeks and given us their opinion on what's not quite right with her, we're starting to think Lexi might be being over analyzed just a bit. We'll let you help be the judge of that last statement, but here is what we have learned about Lexi in recent weeks, moving from head to toe.

Head - We've been told Lexi has cradle cap. We've also been told she is developing a flat spot on the back of her head, since her harness limits her positions.

Brain - We were told early on that an ultrasound revealed an area void of matter in her brain. Later we were told this is commonplace in preemies, and an ultrasound confirmed it had closed.

Mouth - We were told Lexi might have Tongue Thrush, because her tongue was white and spotty. Later we were told she didn't, and it probably just looked that way because she had just taken a bottle of formula recently.

Neck - We've been told Lexi's head usually rests just left of center, suggesting her muscles on one side of her neck are weak and need strengthening.

Arms - We've been told Lexi doesn't bend at the elbows and doesn't keep her arms tucked into her chest as often as they'd like to see.

Thumbs - We've been told Lexi tucks her thumbs inside her fists too often, thereby threatening the development of her motor skills. We've also been told if she doesn't correct this, she might not be able to get her hands to her mouth to eat one day. (We figure since she can't digest food anyway, this isn't a big issue!).

Heart - We were told there is a tiny hole in between chambers in her heart. Later we were told this is common in babies and self corrects, but it's typically not tested and diagnosed this soon after birth.

Kidneys - We've been told her ureters are either dilated or split where they enter her kidneys. We've been told this is not necessarily problematic, but rather is something that most people have and never know.

Stomach - We've been told Lexi suffers from acid reflux, causing her discomfort and putting her at risk for Esophagitis.

Belly Button - We've been told Lexi has an umbilical hernia, which might go down naturally or might require surgery down the road to correct.

Intestines - We've been told... actually we're pretty sure everybody knows how screwed up her intestines and GI tract are by this point. To those who don't know what we are talking about, we would like to give a warm welcome to you first time readers of this blog.

Hips - We've been told Lexi suffers from Hip Dysplasia. We've been told her wearing a Pavlik Harness 23 hours a day for 6-12 weeks should correct the problem, but full body casts and surgeries are plans B and C, respectively.

Feet - We've been told the tops of her feet are turned outward more than normal due to the Pavlik Harness. We've been told to periodically massage the outside of her feet to foster proper development back the other direction.

Toes - Actually, we haven't been told anything negative about Lexi's toes! Don't hold your breath, but there is an outside shot her toes actually are normal.

As we said, we'll let you be the judge as to whether or not she is being over analyzed just a touch. We, for one, happen to think this absolutely is the case, and even if it's not, there are not enough hours in the day to address each and every one of these issues anyway. Regardless, we love our little fighter, and call us naive, but we're still even holding out hope that she's human!

Surgery Set for Next Friday

Can you imagine this face having to endure a third surgery before she even turns three months old? We can't either, but we're going to have to deal with it nonetheless, as Alexis went on Dr Coln's surgery schedule for next Friday, Sept 26th. Obviously we are still ten days away from that date, and we've learned the hard way on more than one occasion that things can change very quickly in the NICU. However, assuming circumstances don't change in the time between now and then, Lexi will head to surgery next Friday.

The primary purpose of this (hopefully) final surgery is one we have known for quite some time. Lexi will have her small intestine connected to her large intestine, thereby eliminating her ostomy and giving her GI tract the opportunity to function in its entirety for the first time. Beyond that, the surgery could be as "routine" (if you buy into the fact an infant surgery could possible be considered routine) or as difficult as Lexi's gut makes it. All the contrast dye studies and ultrasounds in the world are no substitute for a look inside the body after it has been opened up, so diagnostic work will be done during the surgery as well. Any blockages or damaged portions of her intestinal tract will need to be addressed during the procedure. Also, her large intestine has lied dormant since day one, as her small and large intestine were never actually connected in the womb or at birth, so that potentially could add complexity as well. We know for a fact Lexi has not been able to handle full feedings to this point, as several attempts to increase them above 40 cc's has failed and caused her to start dumping. We hope connecting her large intestine and allowing it to aid in digestion and absorption will do the trick, but the possibility exists that other issues will need to be dealt with during the procedure as well. So, we'll hope it is the least invasive it can be while still getting her to where she needs to be, reconnected and fully functioning.

Tummy Time

Lexi not only has her lineup of doctors, but she also has started to get her lineup of therapists, too. No, she doesn't have too many issues to discuss with them yet (although being in the NICU this long very well could lead to developing a complex.) However, she already had an Occupational Therapist, and then today we met her Physical Therapist.

As a result of their evaluations and recommendations, we have continued to add even more play time into the daily routine when we can. Tummy time also has become important to encourage lifting of the head and development of the chest and back muscles. So far she has gotten a lot of practice lifting her head while lying on our chests, but we are trying other ways to give her this practice as well. We also are supposed to be helping her relax her muscles and work on various arm and leg movements, although his proves pretty difficult with the harness she is in. We do what we can, though, and we think she is developing wonderfully considering she has been stuck in the exact same environment for 2 1/2 months. Her only road trips out of this environment so far have been for tests and surgeries in other parts of the hospital, but hopefully that will change in the not too distant future. In the meantime, we will continue to do what we can, and we will continue to enjoy play time with our daughter without stressing too much about blood counts and increasing bottle feeds until after her next surgery.

Visitor from the Hawkeye State

Lexi had another visitor today. A good friend from college, JK Mosbo, visited Lexi at the hospital for a few hours this afternoon. He and his wife, Jane, live in Cedar Rapids, IA, but are in St Louis this weekend for an actuarial seminar. So while Jane was working hard at the conference, Moz came over to St John's to meet Lexi for the first time (as well as discuss and relive the Iowa Hawkeyes victory over the in-state rival Cyclones yesterday.)

It was good to have a friendly visit this weekend, as Mom was a little sad today. For the six months or so leading up to Lexi's birth, I had done lots of shopping to buy all these cute 0-3 summer outfits. Not only had I painstakingly gone through all the sale racks, but I had also successfully fought with Brian about the necessity of getting cute clothes from Gymboree. So, I had stockpiled quite the cute collection of outfits for her. Then, reality set in that Lexi wouldn't be coming home before the 3 month mark, and possibly even the 4 month mark. That fact, combined with the fact that the hospital allows only pajamas that have snaps all the way up the front for IV purposes, left me no option but to sadly return these 0-3 sized clothes to the store. So, I have started to focus on the warmer clothes that we will need when she does come home and relish the money I now have on store credit to use. There are lots of cute 3-6 and 6-12 month clothes, so I can shop all I want, and I don't have to fight with Brian about the expense (at least for a few shopping trips!). Until we get her home, we'll settle for the cutest snap pajamas we can get our hands on and start focusing on buying outfits which are the next size up!