Newsworthy?

Noteworthy? Yes. Newsworthy? Well, why not? Paxton is News-Worthy! That's why today we had the neat honor of being able to tell his story to a KSL reporter. It will be aired on the 10 o'clock news next Monday, October 18th. Ah!  

The beautiful Jennifer Stagg had come across our blog when Paxton was about 2 weeks old and wondered if we would be willing to share the experiences we were having, publicly. Things were just so critical then and we were so overwhelmed and emotional with all that was going on that we just couldn't do that, emotionally, mentally, or time-allowing. About 6 weeks later when things had settled down a bit, her message kept coming back to my mind, and I wondered if maybe it was something we were supposed to do for some reason, some person out there. So, we said yes! 

Jennifer was so wonderful to work with and made it such a comfortable and relaxed experience. They met with the ingenious head of the NICU (literally, he invented the oscillator that saved Paxton after his tracheotomy!), filmed us with Paxton, and with our boys at home. Of course our boys said the cute tender things off camera and almost immediately after they left, Dave and I started saying to each other, "Duh! How did we forget to say ______, _________, and ______?! That is a such an obvious, critical, or important part of the story!" Agh! So goes it. Some people are made to be on camera and some people are made to be behind it! You all know which one of those I am! There is just so much to the story and so much of it is obvious to us or even behind us a little bit that we failed to think we should explain it. Simple things. But she is talented and I know she will get across what will hopefully make for an uplifting story even with our omissions. And you may just have to indulge me next week and let me share anything else I wish I did!

Paxton is our little miracle baby and here to teach us so much, so I'm so glad his story can be shared. And I feel indulged that someone else would want to share it, too! 

So on to our little bundle. 

Paxton has been doing fairly well. I have learned my posting pattern. I like to share on the blog when something really positive has happened. ALWAYS, the day of or day after I post, we have always learned some bad news on those days. It's like "Really? I just told everyone everything is going so well!" Fortunately today I am posting anyway!...

Getting a little bit of morphine again helped Paxton be able to get more rest and tolerate more interaction and positions when he was awake. He has been having bradycardia (heartrate dropping) a lot and we don't really know why it is happening. But he recovers on his own so without having to intervene they are not too worried about it. He is back to having bolus feeds (every three hours for a half hour), instead of continuous feeds, and for the most part he is tolerating it well. We are trying to figure out if he is aspirating the milk into his lungs from reflux because... again, he has some sort of infection. (Mom thinks there may be a correlation here, folks!) Both in his lungs and his stoma this time. :( This time he definitely seems a bit more sick to me as he has been pretty fussy again and really junky (what we call it when he has a lot of secretions constantly to be suctioned). A good thing is I can hold him now really anytime I want (and do for all of my visits!) and am able to comfort him or work with him most of the time. That is SO wonderful! So we have to see exactly what infection it is and what that means because...

Paxton is scheduled to have his gastrostomy surgery on Wednesday! That is where they put a feeding tube directly into his stomach. Along with that they have always said they would do the nissen surgery for his reflux, and now they are debating it. Hopefully they can decide tomorrow!!! He will also be having his hernia repaired and his circumcision while he is in the OR. Poor guy, big day! I do still hope it will be able to happen so we can get him home sooner rather than later. 

Today they also mentioned in rounds that they think he has edema. Apparently they can tell that his weight gain and "chubbiness" is not just all cute baby fat and is a lot of water retention. I have heard them say now several times that Paxton is a difficult one when it comes to nutrition. His feeds take about 20 minutes for them to figure out and mix together the proper amounts of everything he is getting: breastmilk, human milk fortifier, neosure formula, beneprotein, and microlipids (straight fat!). They are afraid he is getting too much liquid or not enough protein or salt to help it leave the body properly. Luckily for me pretty soon I will get to do the math and the mixing (no, not luckily. I'm not so hot at math).

A sad thing for us today was to hear them talk about their concern for Paxton's head size, that it doesn't seem to be growing proportionately to his body. :( This makes me and Dave sad, obviously. We did know there would be a chance he could have microcephaly and still can. We are hoping for the best. If it's not due to nutrition it could be part of his condition. We are aware there may be many things that will change or become more apparent as he grows older. It won't change a thing about how we feel about him, just how we feel for him. He still looks perfect to us. :)

Paxton's bubbles are from the air coming into his trach and going up the back of his throat. Since his swallowing ability is not as strong and he has no palate, there's no way to really fix that until he is not on humidity and oxygen, which will be a while. So we are wiping them away constantly. Apparently I didn't even notice them on this cute little pic of Paxton reaching. :)

There are also many other simple concerns right now...like trying to help him make progress orally, to take any stimulation around his mouth more positively and suck a binky more regularly. His flat head. Rotation of his ankles. Calming him completely without any medicine to help. His expiratory wheezing. Etc. Etc.

Some hours are good, some hours are bad. More good than bad though. Counting our blessings, definitely. Overall great progress and looking forward to the next phase of having him join our family and life at home, and learning what our 'new normal' really will be like. Much more learning and blessings and relying on the Lord ahead!

Thanks for reading and supporting us still. We sure love you all.