Saturday, August 13, 2011

Week 36

"Ahhhh!!!!...It's the youngest grandma of the NICU", this comment alone makes me know I have spent wayyy too long in the NICU with my sweet boys! The priest for the NICU and labor and delivery calls me this...I am the youngest mom but yet have been there the longest; ten weeks makes me the grandma of the unit to all the newcomers. This is all too real as I see families who have been delivered after us, leave before us. It is truly bitter sweet! I know how stressful the NICU is and I am happy for the families who are able to end their NICU journey and start a "normal" life. I would however be lying if I said I was not envious of them. I can't help but to let my emotions get the best of me when I see the mom's and dad's packing their stuff and putting their baby's into the car seat to depart from Wilford Hall's NICU. I just have to remind myself of what our situation started as and how far we have come...and know that one day it will be this momma packing her babies to go home!

This week has been nothing short of a week! The team decided to try Brock on room air and after successfully maintaining his stats, his cannula was removed and he was breathing all on his own. That same day, Camden decided he was over his cannula so he tore it off of his face. His nurse decided since it was already removed; to give him the benefit of the doubt and to try and hold his own! What do you know, the boy went from being on 1 liter of oxygen to none! He did great! didn't stop there! Keaton's nurse felt the competition and decided to let him try room air...SUCCESS!!!! Even Grayson was weened from the 5 liters he was on to 4 liters and was doing well! Camden had begun his feeds again and were taking them all by bottle, Keaton took about half of his feeds by bottle, Brock is just plain lazy so doesn't do too hot on bottling, and of course Grayson has not yet had the chance to bottle as his flow of oxygen is too high and would cause it to go in his lungs.

As big of milestones as the boys' were making, I knew they would take steps backwards as three of them were having their hernia surgeries and circumcisions. As much as I was looking forward to this day; I was also dreading it. I was told all of this time to expect Grayson to come back on a ventilator as his chronic lung disease was severe. Seeing my sweet little fighter on a ventilator for his first three weeks of life was enough; even expecting it could not prepare me to see him come back from surgery on a ventilator, that would just not be ok with me. The night before I was uneasy; dreading what I thought would be the inevitable; Grayson going back on the vent. We got to the hospital at 7 am and I sat and held each boy before them being wheeled back to the OR. I had hoped they would bring Grayson first, but he ended up being last. After a nine hour marathon of surgeries my last baby was getting ready to be brought back...the one I had worried about this entire time. When the OR called up saying he was waking up and was ready to be picked up; the RT team began setting up the ventilator. As I sat and held and consoled Camden, tears streamed uncontrollably down my face. My sweet boy had come so far and just couldn't go back on a vent....the ventilator is what is the cause for him needing 4 liters of oxygen, 2 breathing treatments a day, daily diuretics, and the list goes on. When I heard the doors open and the taradactal screams from what could only be Grayson James Evans....I continued to cry uncontrollably; but not sad....RELIEF! I thanked God for proving all wrong and for allowing my feisty fighter to come back kicking and screaming...just the way he left me!!

We also have been awaiting the surgery to see if it would end all of Camden's weekly issues. he began having high blood pressure the day before surgery; and they were waiting to see if it too would be resolved with the hernia removal. Unfortunately it was not. It got even higher when after being sedated during surgery it should have been low for the period of time he was out...and it was not. They started him on 2 rounds of lasix and if that does not solve it; he will be put on a blood pressure medicine and then he will have another work up to see if there is an underlying cause or if it is just due to his lung disease.

Out of the three boys, Keaton has had the hardest post op. his scrotum swelled to what the doctor's called a "quite impressive" size. It really was just pain stakily huge! His face showed every bit of discomfort as did his constant d statting (dropping his oxygen and heart rate to extreme lows). He was the only little boy I have yet to hold after surgery since his vitals have been so tacky. All I can do is to continue to trust that he will overcome this hurdle and be on the up and up.

Brock came to visit his brother Keaton before Keaton's surgery

Keaton trying to get some rest!!!

Brock getting at his thumb after his bath

Holding Keaton!

Wide eyed Grayson...Oh Grayson!!!

Keaton getting ready to feed..."does my bib fit ok???"!

Keaton in his monkey get up!
10 weeks we have been on the NICU rollercoaster....i would haveg time ago but also know that when my boys are healthy and ready to come home....that is the time they are to come home. For now; I will continue to spend the majority of my days and short visits at night seeing my little stinkers. In between; I hope to find the motivation to begin packing this undersized house to move into our spacious new 5 bedroom home this coming week. I have longed for months to begin nesting...and I now have my chance; better late than never!!!! Ups and downs, milestones and setbacks...I will take all knowing I am blessed times 4!!!

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