May 14 update

Hello everyone!

Sorry for no update this morning, been another very busy morning with very little sleep. We did rest last night but the warrior had some people come visit him for a X-ray and some labs and Brandi was up making sure she was keep up with her meds and getting nutrients for Walker. We were trying to figure out the best sleeping arrangements as we have a full size bed and a recliner and with Brandi still recovering we didn’t find the right mixture yet.

When we woke up this morning the doctors were starting to come around and check on things and told that they wanted us to be apart of his morning briefing with everyone, this so cool that we get to be together with this and yes there are words, numbers, abbreviations but we are starting to pick things up. They dumb it down for us sometimes and the biggest thing we got today is his electrolytes, calcium, magnesium, and sodium numbers are improving! They did say he didn’t go into SVT at all yesterday and they are really happy with that. His X-rays are also showing that his left lung is getting better! His right one is looking fantastic so we are winning with his lungs. He is getting pretty regular with his going pee that they are letting him get nutrients from Brandi, so that’s huge they want to get him some more calories to help shed some more fluid, that is still a big concern.

We did meet with ENT (ears,nose,throat) to take at his nose because they were having trouble getting his breathing tube in his nose. They put a tiny camera in his nose and noticed that his nose canal connecting to his throat is very small, teeny tiny hole so that will need to be fixed and one thing we knew could be a problem, but we are at the best place for a situation like this. When they go to fix that he will already have the tube in his mouth so we are good there and assured us that the breathing tube in his mouth will be enough to do that surgery and won’t have to go through his neck, which was a big relief!

we then met his physical therapist which was awesome to see we were doing a lot of things they already and gave us a few more things to do with him that will help us bond with him.

we then met with the genetics team and talked to us about doing some testing to figure out if Walker has anything that wasn’t tested for on the pregnancy NIPS test. And they wanted our dna to test with his to see if there any correlation with ours.

After that we got some more holding time! Brandi got to hold him for close to two hours and then she needed a break with her discomfort from healing which was totally okay. He was so happy and comfortable being with his mother he actually was able to go down on the oxygen that he needed through the vent because he was so comfortable so we now know that we need to hold him more! Kind of tricky with how many labs and needing three nurses to get him to her lap with all the wires, IVs and breathing tubes but we are going to try and do it twice a day now. At this point glamma (Janet) came down to see us and made the decision to head home and get out in some fresh air, see the dogs, hot showers, and get a great night sleep! All of the doctors told us that it was probably a good thing. The nurse said that he is in great hands and they are the best babysitters and will call us with updates!

we are on the way home to relax, shower at home, see our dogs and repack our bags and bring down some of his stuff (swaddles, blankets, and maybe a hat or two!)

We have been asked by multiple people about how they can help, we are still trying to figure some stuff out and really appreciate all of your support we will let you know when we can! Let us decompress and formulate a plan. We are trying to figure out our schedule, the three of us are coming up with a plan on how to do a rotating schedule. We do ask you guys keep Walker in your thoughts and prayers! You guys have been amazing and walkers warriors have been the best!

We also have been asked multiple times when people can come visit and at this time we don’t know what the schedule is for him, he is still in a very fragile condition and don’t want to bring anything to him. It is a NICU with a lot of very fragile kids. We have a very extensive program we have to do just to be in the room with him and his health is number 1 for us. We will let people know when that time will come and it will be a strict 1 visitor a day kind of thing with close family members. Then when the time comes we will reach out to you when it is appropriate.

love every one of you

Walker, Brandi, Tyler, and glamma