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 ;-)

In the ups and in the downs, God is always good.

The past few days have not been the least bit mundane, to say the very least.  Alexis has had more challenging and "head scratching" days, than promising and informative ones.  Upon arriving back to the NICU Monday, after my last blog entry, I was greeted by the pediatric cardiologist.  He was there with a radiologist, echo-cardiogram, and a purpose.  Dr.  Mcquilkin watched the echo in its entirety and with great attention, then discussed his findings with me.  When he told me my innocent 2lb 13oz child had a heart that was thickening and hardening due to her prolonged (and unexplained) hypertension, I am sure my heart skipped a few beats.  Further explaining his additional findings, he also informed me that she does in fact have a PDA (Patent Ductus Arteriosus) which is a hole between the pulmonary artery and the aorta, that should close at birth but had not.  About 15% of babies born at her gestation have this heart condition and it is something I had studied during my pre-term worries.  It can close on its own as she matures but can also cause narrowing and secondary problems stemming from it.  Only time will tell.  She is closely monitored by a group of three pediatric cardiologist and is having yet another Echo, tomorrow.

Two other specialist have been called in to consult on our baby girl's condition.  Trying to find out where her hypertension is coming from, is at the top of everyone's list.  She has had many renal (kidney) tests come back abnormal, as well as a lot of blood work.  Dr. Bunchman (pediatric nephrologist) will be pulled into the great mystery that is Lexi's hypertension, tomorrow.  This afternoon, Dr. Tyson (pediatric endocrinologist) requested all of "baby girl Cimburke's" history and test results and she is going to look into it as well.  In the meantime her dosage of blood pressure medicine has been doubled twice and her numbers have not really come down.  Her average/mean number should be about 34 now and it has ranged from about 85 to as high as 106!  Her sodium levels have been low but the supplement to balance that electrolyte, has become affective...so that is one problem under control.

So, as I warned you, little Lexi has had a couple pretty nerve wrenching days back to back.  She ended up needing that blood transfusion Tuesday and within the 1st hour of increasing that supply, she started to look so much better.  Mommy sat there with her for 2 of the 3 hours of the transfusion and watched the color come back to her little body.

With 2-3 bad days, we were granted a wonderful day to keep us going!  Today was that day.  A day that changed from frustration prompted by insurance stresses and financial medical burden to pride and promise.  Alexis was given the "okay" to start attempting 2 bottles a day. 

This is such a huge milestone that after almost 3 weeks of struggle and progress, we were happy to welcome.  Daddy even left work early to spectate the great event!  As expected, she was not sure what to do with this silicone, milk-filled nipple between her lips.  Even a NICU veteran mom like myself, could not encourage this little lady to go beyond 1tsp.  But 1tsp was progress, progress of her sucking and swallowing and...almost breathing. That is one of the hardest things for a preemie to "learn".  Learning that "suck-swallow-breathe" reflex is a tough one for them.  She dropped her saturation and heart rate a few times as she was forgetting to breathe and choking on her nutrients.  A quick bottle time out a swift pat on the back, brought her back to us each time she dropped.

Tomorrow is a new day, and she will be that much more mature.  I love to watch the progress as she grows and learns and we are constantly encouraged by Emily and Josiah.  Knowing they had similar struggles and are now so....dare I say, "normal", is a great reminder of the possibilities of the future. 

Gaining control over her hypertension is one of the main goals at this time.  It seems that Miss Alexis Ruth continues to keep the Neonatologists, nurses and specialists all on their toes. But then again, this child has been a grand mystery to me since those "two pink lines"!!

If its not one thing, its a .... flutter! (heart murmur)

 With the seizure concerns behind her, Miss Alexis has decided to give the Doctors, nurses and her parents something else to wonder about!  All of her previous testings have come back normal, there is no sign of a seizure disorder and even though she has had seizure activity, there is no reason to suspect it will continue.  There is also no sign of infection anywhere within her tiny, precious body and her temperature is maintaining average.  Her newest thought provoking problem is a recently discovered heart murmur.  She has been having high blood pressure for about a week now and her heart rate still fluctuates.  She has a lot of bradys (low heart rates) due to reflux and when she does brady, her oxygen saturation drops as well because she is not able to take the breathes she needs.  Occasionally her heart rate will go very high for no reason, and then she "fixes" it herself.

A cardiologist is coming to see Lexi today, she is also having an Echo-cardiogram done to get a look at her heart.  This will help determine where the murmur is coming from.  It could be related to the high blood pressure or it could be a separate issue.  As of two days ago, she is now being administered Hydralazine to help lower and control her blood pressure.  We have seen it go down a bit but it is still very abnormally high for her size and gestation.

sissy wanted Lexi to play barbies with her, so mommy brought one up to the hospital for Lexi to play with :)

Today I had to sign consent for her to receive a blood transfusion.  Her levels are pretty low and they are planning to test again in the morning to see if they have come back up.  We were told about the possibility of needing the transfusion, last week but it was not until today that they were more concerned with her levels.  Having low sodium levels as well, Alexis is now getting sodium chloride to help keep her in balance.  Basically, her body cannot replace what it is losing, as quick as it is losing it.  Lexi is also showing that she desires to be like her big brother and sister.  She is having a lot of reflux and vomiting.  Still getting mommy's milk through the NG tube but not tolerating it quite as well as she was.   She now weighs 3lbs 3oz!
Mommy and daddy have been enjoying loving on their amazing little girl!!

I will update again soon.  Hopefully we will know more about our sweetheart's heart tonight.

Alexis has now had her temperature probe removed and is able to wear clothes!!  Even the teeniest preemie clothes swallow her whole, but it is such an exciting milestone!