Uncle Jason Comes to Town

As of this weekend, Alexis has now met each and every one of her aunts and uncles. Jason was excited to be an uncle for the first time, so he flew in from Orlando this weekend specifically to meet Lexi and spend some time with his new niece. Jason's experience with babies has been limited to date, but if he was at all uncomfortable holding her for the first time, Lexi didn't notice, as she slept peacefully the entire time.

We don't know if Jason can take credit for being a good luck charm, but there was some outstanding, unexpected news this morning when her counts were done. Her platelets jumped from the low 90's, where they have stabilized over the past several days, to 137 today. That is still slightly below a fully healthy range of 150-200, but it is strong evidence she continues to improve dramatically and make her infection a thing of the past. The doctors were very pleased with her counts which led to the best news we have received in a long time...she is now off all her powerful antibiotics and only remains on the one longer term antibiotic. So, we can now say that Lexi is tube free and pretty much drug free, which is the greatest feeling!

Typical Tests, Atypical Results

When babies spend an extended period of time in the NICU, doctors often perform typical benchmark tests early. Since doctors are anxious to learn everything they can about their patients, and since the children are living in close proximity to the testing equipment, they often perform tests that might otherwise be done at routine pediatrician visits. Today, Lexi underwent some routine bone and organ tests, and the results were not quite routine. Most tests were just fine, but we were introduced to some abnormalities found in her hips and her kidneys. These abnormalities shouldn't be life altering in any way, and that is what really matters. However, follow-up tests will be necessary, because her hips appear to be subluxed (joints are under-developed or misplaced, risking hip dislocation), and her left kidney's ureter (which carries urine from the kidney to the bladder) appears to be dilated. The former will require an orthopedic specialist to look at her hips, while the latter will require a radiologist to conduct a contrast dye test to get a better look at her left kidney. Both of these abnormalities are pretty common and most people aren't even aware they have them, but we now have analyzed every inch of our little girl's body, and therefore probably know more idiosyncrasies about our child than most parents.

Neither issue is a big deal individually, but these types of things are adding up on us a little bit. Thus, we were prepared when our doctor and pediatrician recommended we eventually do some more extensive genetic testing down the road. We take great comfort in the fact chromosomal tests already have ruled out the usual suspects. However, when all of her relatively rare test results are considered in combination, we must admit there is a small chance something else is in play. The doctors aren't aware of any connections and are almost certain these are just random abnormalities completely unrelated to genetics. However, we might eventually spend the day with some experts just to be sure.

For anybody out there who said the two of us weren't a good combination, I thought five successful years of marriage would have proved you wrong... but apparently there's still a chance we're literally not a good combination! Laura's already threatening to go to the sperm bank if we decide to have any more children, so I want the genetic testing done just to prove her wrong and stay in the game!!

Ten Fingers and Ten Toes

Today, August 7th, is Lexi's due date (for those of you who had this date in the baby pool, you were 36 days off and shouldn't quit your day job). That almost seems impossible given how much time we have spent with our little girl. Our story for her early arrival is that Alexis just couldn't wait to enter the world, because she wanted to begin her life with us and didn't want to miss the Cubs/Cards series in town over the 4th of July weekend. Lexi's story is that she loved the womb, hates her expansive network of tubes and IV's, and arrived early only because doctors prematurely nabbed her from her peaceful home. Even though this is technically her blog, we're going to continue pushing our version of the story.

The big news today, just in time for her due date, is that Lexi now has 10 fingers and 10 toes for the very first time! You probably think that is a lame metaphor for how she has survived her trials and tribulations to this point, but we actually are serious. Today is the first day where we can utter the trite phrase 'well, she has 10 fingers and 10 toes' and really mean it. Lexi technically was born with six fingers on each hand, though the sixth digits really resembled nothing more than tiny skin tags on the outside of her pinky fingers. A couple weeks ago, a neonatal plastic surgeon sutured each skin tag, cutting off the blood flow and causing them to fall off. The ten minute procedure entailed literally tying off the skin tags at the point they entered her hand (I seriously think I could've grabbed some fishing line out of my tackle box and saved United Health Care a lot of money.) The skin tag on her right hand fell off Monday night, and the one on her left hand finally fell off today. So, we have a beautiful baby girl with 10 fingers and 10 toes on August 7, 2008, just as we had planned. Having a child is as easy as that.

Although it has been difficult at times to call Lexi's emergency surgeries or nasty infections blessings, we have had no such trouble calling her skin tags blessings. Moments after Alexis was born, one of the nurses blurted out that she had 12 fingers. Then, Laura's anaesthesiologist immediately leaned over to us and said "In my religion, we believe a sixth finger is a blessing from God." While we do not plan to switch religions on the grounds of this one belief, we certainly have adopted this belief and appreciated the perfect comment at the perfect time.

Antibiotics: The Final Chapter?

Since Alexis has progressed so well lately, we don't have too much to report today. The doctors want to err on the side of caution and move forward slowly on her feedings, so she has stayed at her current 20 cc's of milk. Her platelets and white blood cell counts remained stable as well, with the latter even coming down and improving a little bit.

The only other change was a decision to introduce a 6th, and hopefully final, antibiotic. This antibiotic isn't necessarily to help her fight infection, but rather aims to help her with the digestion of food. The antibiotic is used to clean out all the bacteria in her intestines. Then, eventually we will introduce pro-biotics to replace the harmful bacteria with healthy bacteria. This is similar to grown-ups eating yogurt (or getting sucked in by the new Activia marketing campaign) to help regulate their digestive system. So, the doctors will try to help promote healthy bacteria growth for good digestion and movement of food through her intestines. Once she goes on these pro-biotics, she will remain on them until the completion of her next two surgeries. We're hoping this means her intestines will work great, they will bump up her feedings, and we'll be out of here sometime soon!

Grandma Phyllis Can't Stay Away

Grandma Phyllis was anxious to see Lexi again, since when she left last she was pretty sick, so she came down for a quick 24-hour visit. She was excited to see how filled out she has gotten and how wonderful she looks without all her tubes. The two got to spend some quality time with Lexi staying awake to check out her Grandma. Plus, seeing that Lexi looks so well right now, Grandma Phyllis, who has ranked as number one worrier ahead of the two of us, got to put her anxiety to rest.

Lexi got bumped up on feedings again today to 20cc's. Our ultimate goal (what a baby normally takes) is to get to 60cc's, so we are a 1/3 of the way there and hope she continues to tolerate her feedings well. She also got taken off her Amphotericin, which Mom and Dad were very excited about, as that is her antibiotic with the most dangerous side effects. So, another good day is in the books....

Moving Up!

Well, Lexi seems to be moving up on all accounts. Her platelets came up to 91 today, which was a good sign. If they continue, she might even get off one of her 5 antibiotics in the next few days. The rest should slowly go away as we progress through the week.

Her x-ray also was clear today, so she moved up from 10cc to 15cc on her feedings. She's getting closer to numbers which reflect real food amounts, instead of just a little snack. We are excited to be back to taking her temp, changing her diaper, and giving her a bath like most new parents do, instead of worrying so much about x-rays and blood counts.

6 Pounds, 12 Ounces

Lexi's road to recovery has continued to make solid progress over the weekend. CRP counts were done Sunday morning for the first time since Wed morning, and they dropped once again, this time to 1.0. This techically means she still has an infection, and thus her stream of antibiotics are continuing, but we love the current trend and where she appears to be heading. Her white blood cell counts also improved by dropping to 17 with almost no left shifting. The only lingering concern is now her platelets, which dropped from the high 90's to 70 from Wednesday through today. Doctors are hopeful they will not fall any further, as that would necessitate another platelet transfusion, but even that possibility seems relatively minor compared to what our concerns have been these past few weeks.

Lexi also has grown quite a bit since going back on her ultra high calorie diet of IV's 24/7 these past couple of weeks. She has consistently gained 2 ounces per day, and at her last weigh in, she was up to 6 pounds, 12 ounces. We hope she can continue this healthy weight gain when she transitions back to breast milk feedings as her condition improves. She still is at just a 10 cc 'snack' every three hours, but doctors already are talking about green lighting her for increases starting on Monday.