Somethings gotta give....

I suppose 7 full weeks is a long enough break from hospital admission.  We were discharged home at the end of June.  Alexis has been doing very well, an apnea episode (blue spell) here and there but overall she has been progressing.  Our biggest battle has been the struggle of learning how to take a bottle.  There were good days and there were bad days.  There were times she would take that bottle as if she'd been doing it her whole life, then there were days (at times, weeks) that she was like "get this thing out of my mouth now, or I'm going to hold my breath!".  A real wishy-washy little girl, it is her way, or no way. 

Tuesday afternoon, I laid her down to tube feed her.  Then it happened; another horrific event to add to my memory bank.  Her eyes rolled into the back of her head and her head was shaking, then the tremors quickly went from her head to her arms.  It lasted all of 15-20 seconds and then she turned blue and began to choke.  I turned her over and hit her on the back...the typical "save-all" for her frequent blue spells.  Once she started breathing again, I hooked her up to the pulse ox to check her oxygen levels and she was satting at 86% and her heart rate was 203bpm.  I was prepared with her oxygen but I gave her a bit of time and she brought herself back up to 95-98%.  At that point I got the kids dressed, made a few phone calls and loaded them up, rushing to the ER.

We were admitted last night and today we made 2 unsuccessful attempts at an MRI without anesthesia.  Tomorrow, with an anesthesiologist team bedside, Alexis will undergo complete sedation for her MRI.  The neurologist needs to get a better look at the brain hemorrhage she has, to see if that is what's causing the seizures.  We are wondering if her apnea spells have caused the apnea, or if the apnea caused the seizure. Or if perhaps it has something to do with her g-tube and her feeding.  Just a lot of questions right now and we are looking for answers.

I hope to update again tomorrow with good news!

Apnea, Seizures, and Hemorrage -Oh my!

Well, we are back in the PICU.  Alexis had been doing so well post-op that we were moved out to the peds floor.  Her condition quickly worsened after a day, she just got real uncomfortable and was miserable in pain.  Requiring morphine again.  Then she had a cluster of apneas, lasting about 40 minutes. Basically, she stopped breathing 17 times in 40 minutes! Then once we were able to wake her up, they stopped.  The ICU Dr. observed each one and she was concerned Alexis was having seizures. 3 hours later she had another cluster and we were admitted straight back to PICU. An EEG and CT-scan were ordered and the Neurologist, that saw her in the NICU after her first episode of seizures, was consulted.  The CT reveled one of my fears.....there was another hemorrhage on the left side and a larger one on the right, needing an MRI for a more detailed confirmation of the bleed.

after the EEG and getting a sponge-bath

 Right now we are waiting on the results from the EEG, she didnt have any apneas during the 'study' but it will show brain activity.  We have decided to wait on the MRI and do that as a follow-up, outpatient.  Right now in order for them to do the MRI they would have to intubate her (breathing tube) and put her under, b/c her apnea is so severe she cant just be sedated.  However, the brain hemorrhages are not on a "vital" part of the brain and the Neurologist and intensivist have said, there is really nothing they will do at this point anyway.  They would not operate and there is no medicine to get rid of it, so really the MRI would just be to confirm what the CT scan has shown and get a closer look.  So we made the decision to not do the MRI at this time.  She needs to recover from surgery and we are not sure she could handle another breathing tube at this time, I just dont see the reason for putting her at a higher risk.  Once she gets a little stronger and can be sedated with less risk....then we can do the MRI.  They will follow her and check back with CT scan to make sure it hasn't gotten worse and most of the time these things resolve themselves.

Her goal right now is to not have any apneas or seizures and to tolerate the increase in feeds (through the g-tube) and to be comfortable enough with the Tylenol and not require any morphine (it tends to make the apneas worse).  We have been given the option to go home sooner than average b/c we have the apnea monitor, feeding pump, suction, and I am trained and have unfortunately been in practice of doing Infant CPR. Also, they are setting us up on oxygen.  Lexi will not have to be on oxygen 24/7 but if she continues to have "cluster apneas" then we are to put the cannula on her to assist her breathing and bring the apneas to a halt.

Miss Alexis is such a tough little girl.  God gave her the best personality and disposition for all the trials she will, and has already had to, face.  I have seen God's miracles first-hand, and will continue to give him all the glory.  He has always sustained us.
                                     "but those who hope in the Lord
                                          will renew their strength.
                                 They will soar on wings like eagles;
                                  they will run and not grow weary,
                                     they will walk and not be faint."   Isiah 40:31

to quote a friend.... "Still, through everything, this brave strong beauty flashed a smile at the camera. If she can smile through this, what do we have to complain about? Basking in His blessings this morning....."   -M. Gomez

Better days

I stare at this blank entry not knowing where to begin.  Surgery went beautifully, the trouble was in recovery.  The worst was sandwiched between the best though, so overall it has been a phenomenal experience.

She was taken down the hall in what would be her 4th parade during this admission.  As she is rolled down the hall on her float (aka: hospital crib) the nurses all wave and smile at her, with well wishes and love.  I told her that if she intends on being Miss Virginia, then she needs to practice her "parade wave".  She was disappointed that she was being pulled by people instead of white horses, but she managed.  Once downstairs, the first hard part approached...the signing of papers and the handing over of our child.  No matter how many times I do this, no matter how many children I go through this with, that is the one part that has yet to become easier.  So many emotions embody that one gesture, of putting your child's life in somebody's hands.  However, I am constantly reminded of Isiah 41:10 "fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand".  I now have a ring with it engraved onto it and it is a great reminder.  Although we have to leave her, God is always welcomed into the OR with our precious children, His precious children.

We knew she would be in great hands with her surgeons, she actually had 2 working on her, Dr. Oiticica and Dr. Bagwell.  Dr. O was one of the surgeons that separated the conjoined twins from, Dominican Republic, at MCV last November.  Along with Dr. David Lanning (who did Josiah's surgery).  We are so blessed to live in a state with such sought-after surgeons!

40 minutes after taking her back to the operating room, they called the waiting room phone to inform us that she was successfully under anesthesia and the first incision had been made, surgery had officially started.  We were anticipating 4 hours, because that was the duration of Josiah's procedure. 2 hours after that initial phone call, Dr. Bagwell came walking into the waiting room.  My heart was in my throat until I saw him smile.  Since we were not expecting her to be out that quickly, I thought certainly he was coming to bare bad news.  "Everything went great, she did beautifully.  We are keeping her on the ventilator at least through the night.  She will be going up to her room shortly.  Give them about 15 minutes to get her settled and yall can go up."  Of course this was magnificent to hear but as we were in the elevator going up, I could feel the tightness in my chest.  The anxiety had begun and the true terror was setting in.  This was the time in Josiah's recovery that he left us, this was the part that I will never erase from my mind.

We get to her room, and find her in a very peaceful and comfortable state.  It was awe-inspiring to walk into this situation. For a few hours she did not show any signs of waking up.  They had paralyzed her with medication and had paralyzed me with fear and doubt.  I stood over her motionless body and just spoke to God in my heart.  We just wanted her to wake up!  It was hours!!  I put my sister on the phone and held it to Lexi's ear, finally....she started to flutter her eyelids at the sound of her "T-T's" voice, yet again, I stood amazed!  She was in and out.  Continuing to drift back into temporary paralysis.  I was bedside the entire time talking to her, reading to her and praying with her.  We even played a bit of "this little piggy" only we personalized it the Cimburke way.  "This little piggy went to Chippenham.  This little piggy stayed at meanmaws This little piggy had surgery.  This little piggy did not ....and this little piggy cried "weee-weee-wee. WAKE UP!"  Finally she began fighting against the vent and the doctor's decided she could come off and go to oxygen.

off the breathing tube and ventilator and on oxygen

This was the next horrific step.  Often times turning blue then dark all over and stiff....as she fought to fill her lungs with oxygen her stats would drop lower and lower and then we could finally get her to take that breath and she would start to come back up.  She required a high flow of oxygen, 90% at 2 liters but never had to be bagged or revived like the problematic recovery of her brother. Throughout the night she was suffering in pain and could only get morphine and Tylenol but for the most part her numbers were good while on the oxygen.  Miss Alexis the great, then decided she didnt need the O2 any longer and pulled the cannula out of her nose. So it sat on the top of her nose the first part of the morning and she proved herself!  We removed it and she has done terrific all day, and just on Tylenol!  Dare I say, today she has been the happiest and most comfortable that I have ever seen her.  Her entire 4 months of life she has battled the pain of reflux and not being able to breathe properly, finally.....relief!






They started doing drip feeds this morning into her G-tube (the tube that goes straight to the stomach and comes out of her abdomen) first that started with 5ml (1 tsp) every hour and they are increasing her by 5ml every 6 hours. Currently we are at 15ml and she is tolerating it well.  The goal is to get her to 30ml an hour.  No word yet, as to when she will be able to attempt something by mouth but it wont be anytime soon.





We are singing the Lord's praises and I am still just in awe at his almighty power!  Once again, Alexis has impressed her doctors. I can now honestly say, I do not mind being "contracted out" to show God's love and grace and be able to inspire others.




Philippians 4:7  "Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus."

The Broken Can Be Fixed

Saturday, prior to the feeding tube coming out...and now on oxygen.

Wow!  What could possibly be so time consuming about having 3 children at home?? HA!  Well, I have to say that is the reason I am so slack on updating this all informative blog.  It has been almost 3 months and my-oh-my have we had some adventures. Alexis was discharged from the NICU on April 18th at exactly 2 months old.  She actually got to come home on her original "due date".  How cool is that?  Pretty awesome.  Since then we have had 2 more admissions and well....surgery in 10 hours.  The past 72 of her 122 days since birth, have been spent in the hospital.
In case you are still stuck on the "S" word...SURGERY....allow me to back up a bit and give you a quick overview of life since the last blog entry.

First off, the biggest news: NICU discharge!  Below is a quick look at what we faced in the Neonatal Intensive Care Unit;
-2 collapsed lungs, bilateral chest tubes
-1 week on a breathing tube. Ventilator 1 day, oscillator 6 days
-2 congenital heart defects
-unexplained hypertension (high blood pressure)
-congestive heart failure
-IVH (brain bleed)
-2 blood transfusions
-oxygen requirements
-short term seizure activity
-minor kidney issues
-apnea (not breathing for more than 20 seconds)
-bradycardia (low heartrate)
-GERD  (Gastroesophageal reflux disease)
 Feeding difficulties any many immaturities.
 

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When little Lexi first came home she was on so many medications.  I was giving her meds 18 times a day.  Currently she is on 1, yes ONE!

So, now to go back to the 2 admissions...5 days after coming home from the NICU we were re-admitted for failure to eat and failure to thrive.  A nasal gastric feeding tube (NG) was put in and tests and study's were conducted. I convinced them that I had already been extensively trained to use a feeding pump and how to put a new tube down, if she pulled the exsiting one out (which happened 6 times!)  I had all of this training because of Josiah's journey, so they let us leave after 2 days.  Yay, for a short stay!

Well, it is a gift that we know how to live "hospital life" to its fullest because we were admitted into the PICU (Pediatric Intensive Care Unit) a week ago and I am sitting in my chair bedside to Alexis as I type this.  We battled for 6 weeks with feeds and with apneas. She was getting all of her feedings through the nasal gastric tube (NG) but she was not tolerating it at all.  She was vomiting and having horrific apneas, some of which requiring vigorous stimulation.  Then right before admission, she had one requiring me to turn her over and hit her in the back :( ugh....that never gets easier.  Turns out reflux is the culprit for her pain, not wanting to eat, and obstructing her precious airway.  Soooooooo.....it is now time for the next step, to the operating room we go!  Well, to the operating room Lexi goes....to the waiting room mommy and daddy go!  Tomorrow morning she will be having the Nissen Fundoplication, which is a procedure to strengthen the "flap" at the end of the esophagus where it empties into the stomach.  During the same operation they will do another procedure.  Little Lexi is getting a new accessory!  Her abdomen will adorn a nice little silicone g-tube/button and she will make it look good, pppshh!  haha!  In short, Alexis is having the same surgery Josiah had in January of 2011 and she will have the same gastric feeding tube protruding from her abdomen, as Josiah had.

Yup, well I guess I have gotten yall back up to speed in as few words as necessary.

Surgery is scheduled for 10am tomorrow and will take about 4 hours.  We put our faith in Christ and that his will for her is only prosper her, not to bring her harm.


Jeremiah 29:11

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!