Lexi's War

6 weeks, a month and a half, 42 days or 1,008 hours; however you look at it, it has been a long journey!  Part of me sees it as just yesterday that I was feeling that little life wiggle and kick inside of me,  yet at the same time it seems like its been years.  Alexis is now a chunky 4lbs 11oz!  She has had a few struggles with losing weight but we are optimistic that it is behind us and she will continue to plump it up. The ophthalmologist has seen her 3 times now, each assessment carrying the same result.  Her vessels are immature, and she will be seen in another 2 weeks.  This is something else that should mature as she ages beyond her due date and she will be followed.  Lexi required yet another blood transfusion, leading me to decide to now join the population of blood donors and help save lives through the donation of blood.

We have had great days and we have had terrible ones but I can honestly say that I have continued to praise God through both.  One Thursday afternoon while sitting in the NICU holding my sweet girl, the pain that I had experienced throughout the day became intense and beyond bearable.  I went down to the ER only to discover that the same thorny 1/2" kidney stone which caused so many problems throughout pregnancy, was ready for battle yet again!  This time that stone was causing much chaos and we were going to put an end to it.  I was admitted that night and surgery was scheduled for the following afternoon.  My physical pain was soon coupled with emotional ache.  I was told I would have to stay in my room because my Urologist had not given any orders, allowing me to roam about the hospital.  There I was stuck, not only in the same hospital as my 1 month old but the same floor on the opposite side in med/surg.  I called down to let them know where to reach me and to check on little Lexi.  The next morning brought bad news,  "Alexis had a very rough night,  she dropped her sats and stopped breathing beyond our stimulating her.  Ms. Cimburke, we had to 'bag' her multiple times to get her back.  She is now back on the warmer (intensive care table) where we can watch her more closely."    Suddenly, I felt that all the progress she had made was pointless because there she was....2 steps backwards.   I so badly wanted to be there with her, singing to her, comforting her and just letting her know "mommy is here".  How could it be that we both had such troubling nights?  Perhaps we truly needed to be together.  My surgery was a success and the stone was gone, leaving behind nothing but a healed and determined mother anticipating discharge.  Upon signing my discharge paperwork, I was racing to my baby.  32 hours, we spent apart....yes, I counted!  She looked so hopeless and I felt so helpless. I put that hope right back into my savior and he pulled us all back through it again.

She was put back on oxygen for about 12 days, but during that time she started thriving again and made her way back to her open crib and then to a big girl bed (what we refer to as the "peds bed" because it is the same style they have on the pediatric floor) where she was elevated to help with her reflux problems.  On March 23rd with the help of oxygen, she finished her first bottle by mouth!  It was a very proud moment and I am pretty sure I was all smiles for hours.  Since then she has been about as fickle as a teenage girl, when it comes to eating.  Still only getting 2 attempts a day at taking the bottle by mouth.  Today she finished her 3rd full bottle ever, but this was the first time she did it without the help of oxygen.  Small strides towards her homecoming.

We are all feeling comfortable with her blood pressures and the cardiologist has already noticed a difference in her heart!  Since it is not working as hard, the muscle has had the chance to relax a little more and is softening back up.  This is a long process and it will be a while before she has a healed heart.  She still has the murmur and although the PDA ( Patent Ductus Arteriosus) seems to have closed, she still has a PFO (Patent Foramen Ovale).  We have faith that it will also close and cause no further complications for Miss Alexis.

St. Patty's day, mommy made green bows for all of Lexi's girl "roommates"

She is on quite a few different medications now for various problems.
Lasix - lungs and fluid retention
Aminophylln - apnea and lungs
Captopril - blood pressure
Sodium Chloride - supplement (the Lasix has removed too much of what she naturally produces)
Potassium - supplement (the Lasix has removed too much of what she naturally produces) 

She now gets 44ml per feeding, and is eating either by mouth or NG (nasal gastric feeding tube) every 3 hours.

I am sure I am failing to update on something, but I think for I have covered the most important.  I am writing this entry during my 1 hour break from the hospital.  The big question that everyone asks "when is she coming home"  I do not have an answer to.  She needs to take all feedings by mouth, continue to gain weight, and keep the apneas to a minimum   If you want to know.....ask little Lexi, its up to her ;-)