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