Lessons from Lexi

Every parent dreams of the day they have a child. With this comes the anticipation of lessons you will instill in your child to build his or her character. I often thought of lessons or traits I wanted our children to have. I thought how I would teach her that everyone has something to offer in life, to hold your friends close, to not judge people by their status or money but rather by their character, to be generous to others with your time, money, and gifts, but also take time for yourself. In the two months she has been alive, I haven't been able to share any of these lessons yet, but she sure has given me lessons I never knew I could learn from someone who couldn't even talk.

Lexi has taught me what it means to accept what you are given in life and not complain too much, but just fight to overcome it. She has taught me that anticipation usually hurts worse than the actual event (good thing babies don't have anticipation!), so try to relax and wait for the outcome instead of stressing about the "what ifs." She has shown me that a few grunts, and not a full fledged fit, can help relieve frustration effectively to move on quickly. She has taught me to appreciate the important things in life like the support of family and friends and good nurses. She has taught me (or the nurses have) that every woman needs her hair done with bows, no matter her age or condition! She has taught me patience and that she will go at her own pace and not my pace. She has taught me that I have an even bigger love capacity than I thought possible. She has taught me that there is a facial expression for every little emotion we feel, so pay attention to nonverbals. She has taught me that we all face challenges in life, and it isn't those challenges but rather how we deal with them that make us who we are. She has taught me the importance of dealing with life's challenges as a family and not as an individual, as it makes it a heck of a lot easier when you can celebrate and cry with your husband instead of by yourself. She has taught me to slow down in life and enjoy snuggy time with the ones you love. She has taught me that education and experience can give you a lot, but love and smiles make people feel the best. This tiny human being has taught me more life lessons in two months than I even hope to teach her in a lifetime.

First Car Seat Ride

Lexi got into her car seat today for the first time. No, we did not decide to kidnap her and take her home, as tempting as that might have been. Instead, she got into her car seat for a little play time. The travel swing we bought actually goes with her car seat and was the smallest option to bring to the hospital. So, she tried swinging in it for the first time today, and she batted the animals we hung in her face a few times. We're not certain whether those moves were "Get this annoying thing out of my face" or "Oooh, this is cool that my hand moves this thing." We opt to think the latter as there wasn't a mad scream that went along with it. Needless to say, she didn't get to spend much time in her swing, as Mom and Dad like to hold her too much!

Lexi did get to go up on her feedings today, so that is a good sign that she is recovering well from her surgery. She is now up to 40 cc's (almost an ounce and a half), which equals her personal best achieved just before her first bout with infection. She also has been taken off her antibiotics, so the next 24-48 hours will be critical in determining whether she can avoid the infections which have plagued her the other times they have tried to eliminate her systematic antibiotics. Obviously we will be back to testing her CRP counts regularly now that she doesn't have antibiotics helping her. Cross your fingers her CRP counts stay low, so we can maintain the status quo of a lot of hold time and play time as she continues to recover from Tuesday's surgery.

Grandma Snuggy Time

Lexi continues to do well post-surgery and got some much needed rest and relaxation time again today. Some of this occurred in Grandma's arms, who had to come down and see for herself that Lexi had survived the latest surgery and was doing well.

Lexi has also scored her own private room now. There are a total of two private rooms in the entire NICU, which typically has between 40 and 100 babies at any one time. So, we realize this is both a positive and a negative. On the positive side, the room brings with it two tiny windows (no, they are not big enough to escape through, and we can't even crack them to get fresh air, but they do provide a connection to the outside world). We also have doors we can close to shut out the other noises in the NICU and get a tiny bit of privacy. However, on the negative side, it also brings with it a longer NICU sentence, as they realize Lexi and her parents will be here the longest and need the room. Our new goal is now for Lexi to beat Britton, the baby occupying the other private room whose current time here has been four months. If we can achieve that goal, that should at least get us home in time to celebrate her first Thanksgiving!

Surgery Follow Up

Today was a day of medical follow-up visits after yesterday morning's surgery. Alexis cycled through her anaesthesiologist, surgeon, and general physicians, and thankfully all said that Lexi looked just fine 24 hours after the procedure was completed. Of course, we probed further and asked if things looked 'good' or looked just 'fine.' Our surgeon said it best when he said, 'She looks fine; if she looked excellent she would be going home.' We have to keep reminding ourselves to just focus on taking small steps forward.

When doctors weren't pestering Lexi to take a look around, she was resting and recuperating again today. She showed a little discomfort as the day wore on, but generally looked content for the most part. She even took 35cc feedings every three hours and went right back to taking bottles with no trouble, so that was encouraging. All in all, we must say our girl was doing very well this today, just one day removed from Tuesday's surgery.

Recovering Nicely

Lexi continues to recover nicely from this morning's surgery. Shortly after she returned to her crib in the NICU, she did wail away for a little while to coax the nurses into giving her some painkillers, though. We were a little concerned with her obvious discomfort until we were informed she had been given her anaesthetic but nothing for pain to that point. So, she probably just awoke from her post-surgery slumber, realized she had been violated in very painful ways while she was asleep, and then cried out for some relief. Our little gal is tough, but not quite that tough!

After she calmed down, Alexis pretty much just snoozed the rest of the day away. We explored reintroducing tiny amounts of bottle feedings to her late this afternoon, but after taking down about 10 cc's, she communicated she was still too exhausted to have to work for food. So, her nurses might try another bottle feeding once in the middle of the night, but otherwise we will just get going on that tomorrow after she's had a solid 24hrs of rest since her surgery. In the meantime, we'll just continue to keep our little girl company and hold her for short periods of time while she recovers. She looks a little different than she did yesterday with her low riding diaper, oxygen tubes in her nose, and right arm hanging out for frequent blood pressure checks, but that's a small price to pay for a successful day.

Out of Surgery

We accompanied Alexis down to pre-surgery this morning around 9am. One of our favorite nurses Jen, who actually had Lexi during her first surgery, came in on her day off and went down with her as well, which brought us much comfort. After some words of encouragement and a few final kisses through the glass (and of course a few consent and waiver signings), Lexi was taken to the operating room shortly thereafter.

We are pleased to report that we had a post-op consultation with Lexi's surgeon a few moments ago, and Lexi is now out of surgery and doing well. There were no major surprises, and the surgery was a success. There actually was even one pleasant surprise afterwards. Lexi is already off the ventilator and breathing on her own once again. Our expectations were she would require a ventilator a minimum of a few hours, and possibly as long as a few days like last time, but her respiratory functions were strong when the anaesthesia wore off, and she already is breathing on her own. Hopefully her strong respiratory functions continue, so she can have her first feeding since 2am last night here pretty soon, and she will be successfully heading down the road to recovery!

Back to the O.R. Tomorrow

Just a few days after her birth, we knew Alexis would require at least two more surgeries after her initial trip to the operating room on the 4th of July. Our expectation was that these two surgeries would be performed anywhere from as soon as 3 months after her birth to as long as 6-9 months after her birth. At that time, the thought was that she would recover from her first surgery, go home shortly after her gestational due date, and return to the hospital a few months later for subsequent surgeries. However, although Lexi continues to take her bottles like a champ and be quite the little trooper throughout everything, the inside of her body refuses to follow her lead and needs to be operated on a second time sooner rather than later. Thus, Lexi will be making her second trip to the operating table on Tuesday morning.

The low motility portion of her small intestine is the major culprit behind the need to perform Lexi's second surgery now. For one, it has failed to digest milk properly and absorb the nutrients needed for her to grow. Fortunately, she still has grown to over 8 1/2 pounds thanks to her IV's and limited absorption, but IV fluid is not a long term solution obviously. Secondly, part of her intestine is passing food and fluids through it at a snail's pace, so bacteria is thriving and infections have been problematic time and again. Antibiotics have solved this problem in the near term (her latest CRP was 0.2!), but again, systematic antibiotics is not a long term solution either (which Lexi strongly agrees with as evidenced by this picture of her getting oral antibiotics). Thus, these issues must be surgically addressed sooner rather than later. Complicating matters, portions of her GI tract are out of position relative to the muscles which control their functions, so these need to be moved to their proper position and be given time to heal prior to her final surgery. Since there is now a much greater sense of urgency associated with this final surgery (which entails addressing the issues with her small intestine and then connecting it to the large intestine), this next surgery needs to be performed as soon as possible.

Clearly, we are not too excited about Lexi heading into surgery once again. It not only means there is a sense of urgency associated with correcting her issues, but also means her timetable for coming home will be longer. The recovery period for tomorrow's surgery is roughly 4-6 weeks, with another surgery and recovery period likely to follow immediately thereafter. However, knowing these procedures were going to be necessary at some point, we are trying to focus on the positives associated with doing them now. Alexis is at a healthy weight and no longer is battling preemie issues, so we feel she is strong enough to handle another procedure. We also have the opportunity to address all her issues in a single extended stay in the NICU, and not have to face the difficult situation of having her home for a few months and then bringing her back for several weeks in an ICU setting once again. So, we are ready for tomorrow's surgery, and we take great comfort in knowing both that Lexi is at an exceptional medical facility and that she will again have the love and support of friends and family members that has meant so much to us.

Ahlstrands Visit Lexi Again

Sunday brought more family time in the NICU, and it also brought the opportunity to rectify one of the early injustices related to Lexi's medical issues. Uncle Dave and Aunt Cori, who were among the first family to visit Lexi in the days immediately following her birth, were also among the last to get the chance to hold her, which they finally got to do today. Their first trip to St Louis to meet Alexis coincided with Lexi's first surgery, so they got to wait nervously along with us during that stressful time and then later see Lexi on a ventilator when should could not be held. Today, however, Dave and Cori both got the opportunity to hold Lexi and interact with her for a little while.

Unfortunately, children are not allowed in the NICU, so Avery, Addison, and Beckett could not waltz in and meet their new cousin. However, despite Lexi's crib being towards the back of the NICU, we were able to bring her out front towards the glass so they could at least catch a glimpse of their cousin. It was a fun moment, as Avery and Addison waved and blew kisses at Lexi, and Lexi got to go on her first 'road trip' that didn't involve scores of tests at the other end!

It was an exciting day for Lexi overall, as she also had two other visitors Sunday afternoon. High school and college friend Leah Wilburn and her sister Jean dropped by to see Lexi for a little while. Their visit was cut a little short by some required blood work since her platelets dropped a little bit today, but they still got to meet Lexi and interact with her for a few minutes. Leah and her husband Gary, and Jean and her husband Will, all live in the St. Louis area, so hopefully they will have the opportunity to spend a longer period of time with our little girl down the road as well.