Inspired

So much has happened in the last week and a half. If you are a blogger (which I didn't really become until this whole thing happened and gave me a reason to), you know that you think of how you would like to share things all the time, but then when you actually get the chance to do it, it's like trying to pull it out of the clouds! At least for me. :)  Maybe I will try to post more often and smaller amounts. ? Hmm we will see which is easier! :)

It has been an inspiring couple of weeks. I got to hear NieNie at this!, meet her the next week while taking pictures for a political fundraiser (the first time I had used my camera for work since Paxton of course), and listen to women's and General Conference all weekend long... all sooo inspiring, uplifting, and encouraging. So thankful to people who are made to teach others. I am so grateful I can learn from them!

The BEAUTIFUL Stephanie and Mr. Nielson...with me! Fun!

Another must mention is a little talk given by an incredible man, named Jeffery R. Holland. I wish I could post the actual video so you can see this amazing moment I felt 6 minutes and 14 seconds into his talk, but only the audio is available so far. In speaking to the LDS church members and people all over the world, he expressed "the personal value and sacred splendor of every one of you", thanking each of us and telling us "how loved of God you are." He thanked so many people, all of us for all of the specific good things we do. Then he went on to share, with what I felt was tender emotion, these words:

"I am grateful for selfless parents who perhaps for a lifetime, care for a challenged child. Sometimes with more than one challenge. Sometimes with more than one child."

Wow. Does anything else really need to be said? Did you hear it? I can't think about it without tearing up again. It penetrated my heart. Not because I am selfless, but because I know that God knows us, and loves us. I've always know that. But watching Elder Holland speak, as the camera was straight on him, I felt staring into his teary eyes that he was speaking straight to me! I know I was not the only one hearing it, but it blessed my heart so much. To have an individual thank you from an apostle of the Lord, I knew it was God's way of telling me exactly Himself. And that is simply too incredible to describe. I wanted to share it with you. 

 On to my precious boys, all of whom I have been able to spend very balanced and good time with, so thankfully. Paxton has had ups and downs the last two weeks but overall is doing fairly well. Nothing critical at least. And that's no small thing in our book! But he has had some struggles with just the day to day stuff.

Since my last post:

-The doctors tried to wean Paxton from the morphine needed from his last surgery, but apparently not  slow enough and Paxton had actual withdrawals. :( Measured by much crying, tiny catnaps - not able to sleep more than a half hour at a time, and extreme diarrhea and diaper rash. It was a rather sad week as we felt like he wasn't getting any of his primary nurses and the others didn't quite catch on that this was not acceptable. It took us a few days ourselves to realize how it was all correlated. So just two days ago the doctors agreed and started his morphine again. Night and Day! He has been so calm, sleeping so much better, content when he is awake, staring at me and letting me sit him up, work with him, and do more than one stimulating activity at a time (singing, staring, rocking, OR bouncing, talking, and stroking, etc.). Amazing. It is so wonderful to be able to do more of the things most moms do with most babies! To actually be able to comfort him the way you would another child. I have not taken a moment of it for granted and have loved every second holding him and comforting him. It has made me so happy when I can pick him up and calm him almost instantly. One of the many rewards of being a mother. My Dad asked me today if we were 100% bonded and I assuredly said YES! I think you can sort of tell when we are together. ;-)

-Paxton has been wheezing a lot and been given albuterol to help his lungs expand, which many times it does and sometimes it does not.

-Paxton was sick of his NJ tube and pulled it out. When the doctors met at his bedside for cares they joked and dared him to pull his NG out, and he did. Right then. They loved it. They left the NJ out and only put back in the NG to get him ready for stomach feeds again through the G-tube....

-Last Friday Paxton first made the 3 kilo mark...that magic weight he needed to be to have his G-tube & Nissen surgery. Of course, he fluctuates his weight so much that right now he is still under, but we are hoping by next week he will have stayed there plus some. After that, we will really be on the road to recovery and preparing to come home. WoW!

-Paxton had two studies done under fluoroscopy (video X-ray...pretty cool). One was a swallow study to determine if he was ready to by chance try any type of oral feeding, but it was way too premature. He wasn't even ready to have the nipple of a bottle in his mouth, let alone a strange fluid coming in. They literally got a few drops in his mouth and it just went up into his hollow palate. :( Suffice it to say, there was no swallowing done then. He also had a GI study to make sure there were not any GI abnormalities they needed to be aware of before doing his G-tube and nissen surgery next week. He did have reflux but I haven't heard the official report yet.

-Amazingly Paxton did not have to have eye surgery again at his last check-up. I thought for sure it was going to happen but was so happy for him that they were okay. Checking again in two weeks.

-The nurses had to change Paxton's PICC line dressing every day for a week and thought it was just from his sweating so much from his heart condition. Come to find out, 5 days later, there was a hole in it. It was leaking. To my amazement, they tried to repair it! I was thankful there was not the right size kit so they decided to pull it out. (The PICC line has to always be extremely sterile as it is going into the heart and could cause major sickness if anything went wrong with it.) We (me and Paxton in our lifetimes) have had enough infections that I did not want that risk, and am still amazed and grateful he didn't get anything in that time we were unaware. So it came out. Yippee! So much easier to dress and more comfortable for him. And, because it is out, we were able to give Paxton his first real bath in a little baby tub on Monday! Baths will always be very cautious as we can't get any water down the trach, but sitting him up we did it just fine. At first he did not know what to think of it. He forgot what it feels like to be in water. But soon he warmed up to the warm water and I think really liked it being drizzled over his body. Cute little bug loved being wrapped in warm blankets after and rocking in my arms. Way to go, buddy!

A huge happy thing was that we were told we could start all of the trach training, pretty much our six-week-out marker. It was a happy thing to put it on the calendar! And scary. All this weekend I got very anxious about it. I don't know why. That seems to be all I've wanted, for Paxton to come home, but watching the trach video and seeing these babies fight the care for their trachs, and other things, made me very nervous to start this next phase. Alone. Alone in the sense of no nurses to run to, to ask for help, to relieve me to go to bed at night, etc. As I said on my DDAY post, a life-changer of all sorts. But not a life-stopper. We can do this! On the morning I almost couldn't eat and Dave asked me what was wrong, I came up to have a little study. It's amazing how through one prayer and a little effort, immediate comfort and answers came to me about my fears. What a merciful Father who is SO present if we invite Him to be. I was reminded that He will guide us into knowing all things that we should do, that He won't leave us comfortless or alone, and that all flesh is in HIS hands, as Paxton has been from the beginning, and will continue to be.

Paxton is 12 weeks old (7 weeks corrected age). The last two days I have been able to do some new things with him contentedly: a form of tummy time, grasping a rattle and lifting it, trying him in new positions, etc. He stares at us for so long, tracks us as we move around the room, and handles more stimulation all at once. Some great improvements!

his little "weights" rattle

I never say enough about our sweet Daddy, Dave. I don't say much about him because I can't speak for him and how he is feeling, but I can say how we feel about him! He is a champ Dad through this all right now. (Hmmm I wonder where Paxton gets his Champ-iness from. :) He is totally trying to balance time with us at home, Paxton at the hospital (every day he is in town as well), work, school, travel, church assignment, and homework. I really don't know how he is doing it and I pray he will continue to be sustained. If you all pray for him perhaps pray for him not to fall asleep at the wheel as he is running on such little sleep with the latest nights and early mornings. I love him dearly and so does his Paxton. He knows his Dad as well and is comforted by him. Some of these pics just in the last two weeks sort of sum up their connection. (If we were together there more I would have more pics, but we don't always overlap. :)

classic, both boys are exhausted and so comforted together!

before Daddy's touch

after Daddy's touch

both as happy as can be.