The Morning After

Alexis is in recovery mode this morning, and she appears to be pain free. We cannot go as far as to say she appears comfortable, as she periodically tries to let out cries (which are inaudible because of her ventilator) and clearly dislikes the tubes she has down her nose and throat. However, these obviously are necessary for her recovery, so the best we can do is target any pain with Fentanyl and continue to keep her company and talk to her at her bedside. Lexi was moved from the open floor area of the North NICU to a private room in the North NICU last night, so at least we can give her some privacy while she recovers.

Lexi had blood counts taken this morning, and her red blood cell counts were quite low, so a blood transfusion will be forthcoming shortly. It goes without saying we would prefer this not be the case, but all signs point to the fact that it is necessary. She appears incredibly pale this morning (a strong statement since Mom's Swedish genes and Dad's Norwegian and Irish genes predispose her to be quite pale in general), and her oxygen saturation monitor pretty much has been on alarm all morning long. When Lexi has received blood transfusions in the past, she typically has bounced back very well from them and looked completely different in just a matter of hours, so hopefully that will be the story this time as well.

Decisions regarding when Lexi can go off the ventilator and challenged to breathe on her own will be a balancing act today, and over the next few days if necessary. If Lexi can keep her vitals within accepted ranges, and if she can avoid the need for consistent does of pain medication, she probably can be weened off of oxygen and taken off the ventilator as early as today. However, if Lexi continues to struggle to keep her blood oxygen content elevated, or if doses of Fentanyl are necessary for pain control, Lexi will likely be too weak and too relaxed to be able to breathe on her own. Obviously we are anxious to get her off the ventilator since holding and comforting time with our daughter cannot begin until that happens. However, if this experience has taught us anything, it has been patience, and we understand the chain of events that unfolds in the coming days will be whatever is in the best interests of Lexi.

Surgery Has No Major Surprises

Alexis is now out of surgery and recovering in the North NICU. Although it is a little difficult to see her motionless and on a ventilator once again, all indications are that she is doing very well, and the surgery was a success. Our transport nurse Debbie, who gave us the first update about an hour into her surgery, said there were 'no major surprises' to that point, and that seemed to pretty much carry through the entire procedure, for which we are very thankful.

Lexi's surgeon determined that a portion of her small intestines measuring about eight inches needed to be removed during the procedures. That stretch of intestinal tract was the area where her ostomy and subsequent fistulas were, and it was dilated and too badly damaged to leave in tact. Given the overall size and length of the small intestines, Dr Coln said that removing an eight-inch segment would be mostly 'inconsequential' to its functioning properly, so that is very good news. Dr Coln also decided to remove Lexi's appendix during the surgery, as it was in very close proximity to the stretch of intestines which were removed. He did not want to risk leaving her appendix in tact if it was inadvertently damaged during the procedures, and the appendix never has been proven to serve any critical functions, so removing her appendix was done as well. We're telling ourselves that we sent our daughter to have surgery this morning, but ended up potentially saving her a future surgery which she would actually remember if she ever had appendicitis! The final step, of course, was connecting her small intestine to her large intestine. This was a little problematic since her small intestine is dilated and much larger than normal, while her large intestine is dormant and much smaller than normal. However, this connection eventually was made successfully, and only time will tell whether her feedings will be impacted by this issue.

The surgery ended up lasting roughly two hours, which was perhaps just slightly longer than expected. The start of Lexi's surgery was delayed due to an emergency surgery Dr Coln was called in to perform, so it began at 10:51am this morning and concluded shortly before 1pm this afternoon. She was then transported two floors up back to the North NICU, where she will be heading down the road to recovery over the next couple of days. Questions regarding when she will get off the ventilator, and when she will be able to resume feedings, are pretty much on hold for the time being, as pain control will be the top priority for our girl for the rest of the day.

All Star Line-up

Lexi headed into surgery preparations mid-morning. She was pretty hungry, since she had been cut off from food for the last 12 hours. We told her to remember that feeling, so she pushes them to start her feedings back up soon afterwards. We were excited to see the all star line-up that was on hand to help her today. For starters, our primary Paula was back after being gone for quite a while due to personal issues. The transport nurse Debbie was the nurse that had originally admitted her to the NICU the day she was born. The respitory nurse Stephanie is the one person on that team that we have gotten to know very well over the last couple months. The doctor that has her today, and the doctor that is on call tonight, are the two that know Lexi the best. Her primary Toika will be back tonight, as will one of our favorite nurses Jen. So, when we are home tonight, we can sleep peacefully knowing she will be watched out for extensively. We're hoping for a quick, routine surgery and will keep you all posted.

Final Hours Before Surgery

Lexi's surgery is scheduled for tomorrow morning. On Wednesday the doctors did some lower GI tract studies, and everything seems to be working okay. So, we will hope that they don't find anything to the contrary once they get in there tomorrow. Assuming they don't, it should be a fairly straightforward game plan of reconnecting her small and large intestines and investigating her slow areas to see if anything can be done to aid them. When she is done and comes out of surgery, she actually will be left with an open wound, which is a strange concept for us to digest. Because stool has been on the outside of her body where the incision site will be, they will close up the muscles at the end of the surgery, but they will leave the skin separated and allow it to heal on its own. There is simply too high of a risk for infection if they close it up immediately. They will obviously have to pay special attention to changing the dressing for a while, but the hope is that it should heal fine on its own. At the end of the day, we hope her intestines are successfully reconnected, her wound starts to heal properly, and we can start working on her feedings again so we can head home sooner rather than later!

Aside from mentally prepping for surgery, the last couple days have been filled just snuggling with Alexis and holding her tight. Grandpa Kevin and Grandma Deb pinch hit for us on Wednesday when Mom was pulling a round tripper to Chicago and Dad was preparing for a presentation he gave earlier today. Then today we resumed these cuddling duties ourselves once again, and we are going to hold Lexi and handle her final few feedings this evening, as midnight will bring a period where she cannot be fed in the final hours leading up to surgery.

For the Good of Lexi

First of all, I would like to warn all men that this posting will be about female body parts. (No, this is not the kind of discussion you would enjoy, but rather this is a warning to stop reading).

For all you women, I have to say that breastfeeding has not been the most enjoyable experience for me. For starters, Lexi has never been able to eat breast milk directly from me, as we need to know the precise volume she is taking at each feeding. So instead of having that potentially enjoyable experience, I have had to go into a private room every three hours, hook myself up to a machine, and get pumped like a cow. Honestly, if you have ever done this or seen it done, you will know that breastfeeding women are cows. However, the doctors have stressed all along how important it is that Lexi gets breast milk, as it is easier on the digestive system. So, this has helped me maintain my isolation state for the last three months, and I will continue for a while in hopes she can eventually switch back to breast milk.

I actually accept these circumstances okay for the most part. What I don't accept is how annoying the whole process is. It started at the beginning when my father-in-law decided to give me advice about breastfeeding. Rule number 1: no man should ever give a woman advice about a body part they don't have, or a function they could never perform. Aside from that rule being violated, and the other general hassles with this process, the last few months have gone okay, as I have basically lived at home or at the hospital.

However, today came my next challenge. I had to fly to Chicago for the day for work. I didn't really think about the challenges this would make me endure, but there were plenty of them. For starters, I had to take my breast pump through security. I imagined having to explain all the parts in the bag in front of the entire line, so they didn't think I was a terrorist with a bomb. Luckily, I was promptly asked what was in my bag by a male security screener. When I flatly replied, "a breast pump," he quickly shoved the bag at me, didn't ask any more questions, and pushed me on my way. Rule number 2: avoid airports while pumping. Rule number 3: if you have to go through an airport, find a male screener, as they want no part in anything that has to do with the combination of breast and pump in the same sentence, so you will avoid hassles.

My second challenge of the day was to find a place to pump. So, when I arrived at Midway Airport, I promptly went to the first bathroom I saw to see if there was a nice room with a chair to sit in. I saw a baby sign on the door, so I was hopeful. Instead, there was only a baby changing table and stalls. Luckily, at least the handicap stall was open, so I went in there and performed my duty along side the other stalls where people were doing whatever they do in airport bathrooms. When the experience isn't enjoyable to begin with, believe me, it does not add to the ambiance of the experience when you are thinking about keeping the milk sterile for your child and are pumping in probably the least sterile place (don't worry, I have thrown the milk out). Because of this experience, I have now added rule 4: find a better place to pump than a restroom at the airport.

When you combine everything, I guess my advice is pretty clear. Breastfeed your baby and not a machine, but if it turns out you need to use the pump, make sure you keep your in-laws and airports out of the mix!

Lexi's South NICU Crib

We have mentioned construction before several times in this blog, which usually was accompanied with some annoyance and disruption to our daughter. Although the noise and constant movement can be somewhat annoying at times, we must admit that the outcome is going to be great when all is said and done.

As you may remember, Lexi moved South about two weeks ago. In doing so, she is one of the lucky babies to be in what St John's Mercy calls the Pod. The pod consists of individual rooms with their own supplies and door to block out noises and offer a little privacy. Although Lexi has had roommates up to this point, the plan is for each family to have their own pod, thereby making the stay in the NICU a little more tolerable. Eventually, the plan is to have couches in each room, along with comfortable chairs. We can attest they try to make parents comfortable, but somehow you still leave each night with a bad back and a kink in your neck. So, these pods will be great for families when they are all complete. We just hope we never actually see the finished product, as the final project won't be done for another year or so, and we have no interest in Lexi being here at that time, nor do we want to do this same routine with any children to be named later!

Pre-Surgery Activities

Grandma Phyllis came to visit Lexi before her next surgery. After a trip to Arizona and Vegas with a couple of friends, she took a couple days off and then headed to St. Louis. Lexi spent some good snuggle time with Grandma in the morning and then we played on the mat in the afternoon. We tried tummy time as well, but after several loud screams decided to give her a break.

No real changes on the medical front. We are just prepping for surgery on Friday. For Lexi, this means continuing to put on weight. For Brian and I, this means preparing ourselves for non-holding time and expectations of surgery. For the doctors, this means running more tests of her intestines to determine the extent of her issues. For grandparents, this means coming to see Lexi and encouraging her to do great in what we hope is her last surgery.

For the nurses, this includes harassing Lexi's parents and using her as good material in the process. After we proudly displayed our Cubs signs and gloated in their clinching the division, we left for dinner and came back to find some not so wanted items on her bulletin board and in her crib. As you can see, the nurses thought they were pretty funny to make Lexi hold a "Go Cards" sign. However, you can tell in the picture that Lexi clearly is not pleased with this, and she clearly knows she needs to stay loyal to her dad. She didn't have a choice but to participate, but that didn't mean she had to act like she liked it....boy are we proud of her!

Post # 100

Have you ever heard a movie or song title you found to be really lame, and asked yourself if that's the best they could come up with? I've had that reaction with more than a few song titles over the years, like with Blur's "Song 2" for its second single, or with Dave Matthew's "#41" for the 41st song the band had recorded.

I always wondered how artists, who are supposed to be the most creative creatures on the planet, couldn't do any better that that. However, those thoughts went away very soon after we started this blog. Coming up with titles that are somewhat descriptive, yet not totally obvious or completely lame, actually is pretty tough as it turns out. You've probably noticed this over time with our blog. However, if creative and successful artists can get away with titles like "Song 2" and "#41" once in a while, then I figure we can as well. So, in honor of our 100th blog posting (blogspot numbers them automatically for us -- we're not actually pathetic enough to count them), here is "Post # 100." It's nothing more than a picture of our precious little lady sleeping on a lazy Sunday afternoon, but we figure the picture fits pretty well with the title!