Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Thursday, January 29, 2015

Update #8

I can hear his voice!!! Alex's village is amazing.. The nurses run their fanny off making sure every need is managed, doctors fret and worry over him, staff such as techs and housekeeping make sure he is super comfortable.. Every single person works tirelessly and with compassion and gentleness. Yesterday we started to remove lines and tubes, chest tubes, foley cath, pherisis catheters. Today Alex was successfully extubated. He is on high flow but holding his own. It's a much better place than last time. He has been able to talk to me. Asking for Chapstick for his super dry lips, his favorite stuffed dog Bensy, and little pink swabs with water. He is still pretty tired but is happy to have more mobility. We are all doing great as well.. Thank you all for the continued prayers and every other thing that has been done in our behalf.. 

Tuesday, January 27, 2015

Update #7

Wow has it really been so many days.. It all blurs together. It has been a lot rougher than I ever could imagine. Alex was very very sick and his body wanted his new heart and isn't rejecting it so far, it's just that it was so much of a wonderful thing all at once. Like too much ice cream can give you a belly ache. On Saturday we tried to extubate, which was successful for a time, then he needed high flow and then Bipap and then once again Alex was placed on the ventilator. Our fear was that he was having acute rejection. Alex went down to the cath lab and underwent a series of tests including a biopsy which would help us understand what was going on. The surgeon came in and was very sad to report that he didn't know how Alex was still alive with the pressure he was experiencing in his heart. He had never seen a patient like this before. Later that night the biopsy showed zero rejection.we were really baffled as to why this all was happening. The conclusion of most is that his body was accepting the new heart but had been so sick before hand that it was adjusting very slowly. That because he was so sick before he had adapted to "making it work". So he was still fighting in a less than ideal circumstance. I went from the happiest happy to a very low low time. Over these past couple of days we have watched him improve. Pressures have gone down and his body finally seems to be celebrating with the rest of us. And maybe his body grieved the loss of his heart that had worked so hard to sustain him. And his new heart grieved the loss of its first home. Both needed time. Baby steps. Alex is still intubated and very much asleep. He responds to daddies voice the most. 
He did open his eyes and nod when I told him about his baby brother. We took Ry with us this morning. She is such an amazing big sister. She wanted to be one of the first to know. We also saw a beautiful lip and nose(no cleft) healthy bladder and kidneys, spine looked great and a glorious four chamber heart! I will follow up with MFM to schedule a fetal echo. Today we feel blessed beyond measure! 

Saturday, January 24, 2015

Recovery day 2

What a great day! Alex is doing well. You don't think about urine and bowel sounds being a super stellar thing until you realize how a finely made human body machine needs a way to get rid of waste and then you cheer when there is output!!! 
He had pherisis today and we plan on taking out his breathing tube.. We hate to rush anything, but he wants that darn thing out.. We will let you know when it comes out! 

Friday, January 23, 2015

First glimpse

Here is a glimpse of our boy. 
The eyelashes on this little guy are enviable.

Update #6

He is doing wonderful! He has stayed asleep in order to aid in his recovery, but we are just now talking about letting him wake up a little. He received his second plasmapherisis, finished about an hour ago. I would like to add that we have everyday heroes from those who donate to the blood bank. This couldn't have happened with out those amazing donors too. 
I bawled when I saw this!!! 
The white ones say "Gator's heart day" !!!
I couldn't be more proud to be part of such an amazing school and neighborhood! 

Some of the other small things we are doing. We need to slowly wake up his tummy, so he will be getting some formula through an NG tube.. He also had an Echo to see if everything is still working well. Good news so far. 


Our Love

We know a lot of you love Gator.. We also know everyone is probably thinking this anyway, however they have asked and I obey! For the next week Alex can't have visitors. This will give him a big open time to get feeling amazing. He will also be receiving the plasmapherisis over the next couple of days and this is a big machine that will be doing an important job. He has also started on his immune suppression meds.. These meds are life saving but come with a caution. He can get sick.. Another reason... The less amount of exposure the better. 
Love you all.

Update #5

If there are words to describe my feelings, my brain can't recall them. We feel sort of like we've been given the world. Thank you everyone. Our little boy was very very sick, now his new healthy heart is beating  happy in his chest. I hope that our donor's family can feel our gratitude. While there is nothing that I could do to ease their grief, I would hope that they will know how much I will do to take care of my son and to honor and respect them. I don't take this responsibility lightly at all.

 We have been able to see Alex. He looks all pink and even better then I imagine. His tummy is less swollen, it could get bigger because he hasn't really gotten out of the post surgery honey moon stage. His liver that we have been so worried about... Yeah, it's like it's done its own happy dance and is already feeling and looking better.

 Now the critical waiting post op hours. He will have plasmapherisis again today to keep those pesky antibodies at bay. Rest rest rest and work on breathing on his own. Big jobs. I on the other hand am not cut out to be a surgeon.. I can't stay awake this many hours without side effects. While seeing Alex I felt the room spinning and couldn't suck in enough air and finally had to sit down before I ended up on the ground, hahahaha. We are all trying to get a little more rest. If it were just for me I would feel guilty not being right by Alex, but his baby brother or sister really needs me to take care too. And I really need Jeff for all of us.