Lexi Turns 1 (month)

Lexi is one month old today! What a month it has been. We are so blessed to have our beautiful little girl who is such a fighter. She is such a blessing in our lives, and we couldn't ask for anything more. We also couldn't ask for a more supportive family, or more supportive friends and co-workers during the past month. We have been very appreciative of the phone calls, e-mails, text messages, and blog postings you have sent with your support. We've needed that support to cope with the fact we've already spent more time in the NICU than any parents should.


With that, and in honor of Lexi's one month birthday, here are our top ten reasons a month in the NICU is way too long:

10. Nurses at shift changes are being told to just ask Mom and Dad for Lexi's protocol

9. We talk to Lexi's neighbors Gavin and Robbie more than we do our own nieces and nephews

8. We find ourselves using lingo like CBC, CRPs, TPN, and Desats to describe our child's behavior

7. We got asked if we could describe a nurse named Shelley no other nurses knew -- and we could

6. We now empathize with zoo animals when pregnant couples tour the hospital and stare at us through the window

5. Mom's last ostomy bag change lasted over twice as long as the hospital's ostomy specialist's bag

4. The doctor performing Lexi's lumbar puncture had Dad scrub in as the third set of hands

3. We have access to a wide variety of breast milk after memorizing the security code to the freezer

2. Lexi's "playdates" now consist of everybody sending their monitors on alarm at the same time

1. We've been here long enough that Dad actually met another Cubs fan as crazy as he

Earmuffs!

Late Friday night was earmuffs time for Lexi in the NICU. No, not for the reason they were used in the movie Old School, but because it was excessively noisy. As part of a NICU remodeling project at St John's Mercy, some construction workers needed to knock out a wall and build a doorway in pretty close proximity to Lexi's crib. The noise clearly bothered our little girl, but a nice nurse named Liz showed up with a solution, and Lexi was sporting some earmuffs in no time.

The construction project was supposed to happen quickly, but after it went on for a little while and the clock went past 11pm, we started to scout out other areas where we could move Lexi within the NICU so she could get some sleep. It took a little convincing, but we finally succeeded in getting Lexi moved to a corner far away from where the construction was going on. I'm pretty sure they ultimately just gave in to a couple neurotic parents under the squeaky-wheel-gets-the-grease theory, but we'll take it. We don't feel we have played that card too often, and we feel even more strongly than normal that Lexi needs to get her rest since she is about to enter week 3 in a battle with a pretty serious infection.

Hittin' the Bottle

It's Friday night in the NICU, and the weekend is officially here. For a little lady like Lexi who is finally feeling better, that means it's time to cut loose and celebrate a little bit by hittin' the bottle for the first time in quite a while. That's right... after nearly two weeks of receiving all foods and fluids intravenously, Lexi gets to hit the bottle once again. Granted, she is limited to only 10 cc's this weekend (roughly 1/4 of her pre-infection bottle feedings), but given her potentially low tolerance right now, we fully support the fact they are making her drink in moderation.

Actually, it was a pretty uneventful Friday for Alexis, and that is just fine for all parties involved after the stressful last few weeks. She is still off of oxygen and is not using a repogle, so she is free of all tubes from the neck up. She is still on all five antibiotics and on a steady diet of IV nutrition and fluids to ensure she continues to make progress against her infection. And she is still resting most of the time, but is becoming more and more alert at certain times throughout the day. The goal is to have a few more uneventful days like this one over the weekend, and then see even more positive results when CRP tests and blood work are ordered again on Sunday. In the meantime, Lexi seems to be enjoying her bottle feedings every three hours, even if she is limited to only 10 cc's at a time.

First Friend Visit

Lexi had her first non-family member visit Thursday night. Lisa, a good friend of Mom and Dad's from high school who now lives in Chicago, was in St Louis for a conference, so she came to the hospital to see Lexi. Since holdings are easier to come by these days with Lexi's improved health, Lisa even got to hold Lexi.

Red Letter Day

Today has been a red letter day for our little girl! Among the changes with her suddenly improving health... no repogle tube and no oxygen tubes (so a face free of tubes!)... platelet counts finally inching upwards and white cell counts finally going downwards (indications her infection is subsiding!)... and she has gotten to eat again (that alone is a red letter day for us Ahlstrand's!). Her 'feedings' have only consisted of the amount of a tiny swallow, since they are wanting to reintroduce food slowly, but she technically is getting to eat again! Her lumbar puncture also came back negative for Meningitis, which is obviously wonderful news as well. She looks absolutely gorgeous without all her tubes (if a mom can impartially say that...). As you can see from the pic, she is pretty happy today as well. So, although we know there probably will still be some valleys, we are enjoying the ascent up the mountain for today at least!

Finally Turning the Corner?!

We received some news this morning which we hope means Lexi finally has turned a corner in the battle with her infection. Her CRP test today revealed her reactive protein levels to be just 3.5, which is substantially less than the consistent 12-14 levels that tests have been showing for the past week or ten days. We understand anything over 0.5 represents a bad infection, and one doctor suggested the test be repeated to rule out laboratory error for the suprisingly good results (thank you for raining on our parade), but all indications are that this is great news. In fact, one doctor called it 'the best news we could have hoped for today.'

Still worried about the mysterious nature of Lexi's illness, though, we continue to explore other avenues aimed at finding the source. Today, a head ultrasound was ordered to see if there was any inflammation associated with other conditions, but fortunately it came back with no abnormalities. An infectious disease specialist also was consulted to see if Lexi's symptoms could be associated with any conditions which might be masquerading as a bad infection. The specialist called it unlikely, but she did order a lumbar puncture this afternoon to test for Meningitis. So, Lexi got to celebrate her CRP counts finally coming down a little bit by getting a long needle in her back and being asked for a urine sample. Considering how stoic she has been throughout everything, we should not have been surprised that she let out a brief cry when the needle went into her back, then was asleep seconds later while they extracted fluids and finished the procedure.

We still are anxiously awaiting the results of the lumbar puncture and a few other tests as always, but we are thrilled her CRP counts finally have come down. Our hope all along has been that she conquers her infection and is able to move forward with her oral feedings and post-surgery recovery sooner rather than later. We have been told we might never know the source of her unusual infection, but as long as it is treatable and she ultimately conquers it, we really don't care.

Two New Tests, No New Results

Today was a day of many tests, even by Lexi's standards. The usual chest x-rays, blood tests, and the like were performed, but a few new tests were introduced today. The first was an ultrasound, which is not often performed, but her pediatrician convinced her doctors that a different look inside her belly couldn't hurt. The ultrasound proved to be just fine. The second was a barium contrast study in the radiology group to get x-ray images of the insides of her intestines. Those images proved to be just fine as well, which is great news.

With those test results indicating no new issues, no additional treatments or IV's are being added to the mix, and the watching and waiting game still applies. Fortunately, then, the medical assistance Lexi is getting at the moment is limited to just her oxygen tubes, her repogle tubes, her nutritional IV's, her Clindamycin anaerobic antibiotic IV, her Cefotaxime broad spectrum antibiotic IV, her Vancomycin gram positive antibiotic IV, her Amphotericin anti-fungus IV, her Furosemide diuretic treatments, and another antibiotic IV we can't even remember. Outside of that, she is doing everything on her own and all natural right now, so I think we are pretty close to being in the clear.

Call those last few sentences sarcasm or call them a feeble attempt at humor, but either way, we are starting to explore new ways of dealing with the frustrating reality that we just cannot seem to conquer her infection or even figure out exactly what is causing it. If you have other suggestions for coping mechanisms we haven't tried yet, feel free to let us know and we'll give 'em a shot.

The Waiting Game

Lexi had a pretty good day today. Although we didn't see the improvement that we wanted, she did not get worse, for which we are counting our blessings. She was more alert today and is back to fussing when you change her diaper, which we take as a good sign. We have just started the waiting game of seeing where this goes.

Her chest x-ray came back looking the same, but her output in her ostomy has improved significantly, indicating that her bowels are moving. That is a good sign that there probably isn't a dead area in there that would require surgery. Dr. Coln was very pleased with her output, and we never thought we would watch that aspect of her so much or be so excited about it, but we find ourselves there. If her strong output continues, they will likely take out the repogle that is down her throat, which she will enjoy immensely.

Tomorrow she will probably undergo some additional testing to see if we can figure out what is getting her down, since the 5 antibiotics don't seem to be working very well. However, they will continue to run those through her body for 3 weeks to make certain, as she is showing slight signs of improvement. So, we will wait and see if an ultra sound and barium test tomorrow reveal something more for us. In the meantime, Mom and Dad are taking lots of holding time and are doing our job to comfort her as much as possible. Hopefully we will have an answer soon or she will feel better soon...

Antibiotics: Take Five

The good news is that Sunday morning's chest x-ray showed an improved degree of distension for a second straight day. Thus, Lexi's surgeon still is encouraging her medical team to resist the temptation to take her to the operating room to perform a second surgery and some more invasive tests. However, the bad news is that doctors are beginning to see more fluids in her chest x-rays, and other tests continue to suggest she has been unable to turn the corner in battling her infection.


After yesterday's blog posting, her temperature spiked to 102, meaning Lexi has run a fever off and on for over a week now. Also, her CRP test this morning registered her reactive protein levels at 13.2, which actually represents an increase from Wednesday's and Friday's tests. We really were hoping the third and fourth types of antibiotics added to her IV earlier in the week would put a dent in her infection, but those have failed to make an impact as well. Thus, her medical team decided to add a fifth type of antibiotic specifically targeting fungi to her IV, in the rare event the source of infection is a fungus instead of bacteria. Given antibiotics often take a few days to take effect, hopefully we will know in the next 48 hours whether this fifth antibiotic will make a positive impact. Blood cultures at the broviac and ostomy sites continue to give no indication of what we are dealing with, so we will continue the watching and waiting game for the next few days. Since a fifth type of antibiotic was just added, and since some antibiotics can take up to 10-14 days to make an impact, the hope is still that either Lexi's own blood cells or her antibiotics eventually will begin to win the fight.