Up and Up

It's been a while since I could post. The four week mark was a little tough. The adrenaline has worn off and the boys have needed us more at home as well. You would think I am less tired now that I have had more time to heal, but the pace we are trying to keep without 'a break' makes it feel that could not be farther from the truth! I know we are not the only family juggling the balancing act of having kids in two different homes, wanting to give both of them your love and attention, voice and touch, daily. It is difficult emotionally and so very tiring physically. It helps me to know of this difficult period that "this too shall pass."

This week Paxton has been hanging in there trying to get more comfortable with his new trach. He is the smallest baby they have ever done a trach on and they are thinking it is just more for his little body to handle and get used to.  He is having more awake periods but always a part of that time is either in pain on the front end or the back end. It's like he realizes his body or throat is hurting and he just cries and cries. Some days we have seen him be unconsolable for 1-2 hours before morphine and everything else can kick in and calm him down. Because of this, he is still having morphine about every 6 hours. 

We had a great night with him tonight and are hoping and feeling that he has really turned a corner. He still had two of these little spells but all in all just looked and seemed better. 

~

The medical report for the week: 

On Thursday Paxton had another echo on his heart and the pulmonary hypertension looked just about normal again! Yippee.  (That means the right side wasn't working as hard, pressure wasn't as high, and the vessels in his lungs were more relaxed again.) Because of that, they were able to start weaning him off the nitric oxide and today at 10am he was off it completely. Yeah Paxton! Good job, buddy. We are so happy for him and hoping it can stay this way. 

Earlier in the week he had an ultrasound on his head and for the first time since our 19 week ultrasound his ventricles' measurements had changed...we were nervous, until we heard they actually went down!! Just barely, but great news. Such a blessing and hopefully one less thing to worry about for a while. We were extremely grateful and happy.  

Today Paxton was able to switch the CPAP mode on his ventilator for the first time. :) That practically means that he was doing all the work on his own, and the ventilator just gives a tiny bit of pressure to keep the lungs open so they don't collapse and it's easier to breathe. He did great on it before and after his little rough spells (during which they did have to give him some breaks and let the ventilator completely take over so he could rest). We are confident with time, though, that he will be able to handle it all on his own, all the time. Well, we hope! ("...hopeth all things, endureth all things, believeth all things..." Yep! Sounds good to me!) 

Paxton was finally able to start feeds again on Wednesday at 7cc. Today he made it back up to 16cc (he was on 33ml before all this). Doctors are reevaluating whether he will need the Nissen surgery or not when he gets his G-tube. Once he gets back up to his full feeds, they will watch for any desats in correlation to feeding time. If he desats, that means he is aspirating in his lungs from acid reflux. If he has reflux at all, he will need the irreversible nissen-fundiplication surgery that binds the top of his stomach so nothing can ever go back up his esophagus...reflex, vomit, nothing. The surgery has some cons so we hope that this is something he won't have to have, BUT... if he does need it then he needs it and it's better for him to have it! So we will just see what his body tells us. 

The last thing I can think of is that his blood pressure is too high for his gestational age or weight. Tomorrow morning they are doing an ultrasound on his kidneys to see if he is having any renal problems. We are a little nervous because in utero his kidneys were always enlarged also, suggesting possible future kidney problems. If something is wrong with kidneys, we were told things get more complicated as kidney medications are not good for the brain or heart, which are other weak areas for Paxton. We will learn more about that tomorrow. 

On Tuesday night Paxton's doctors decided he was not stable enough to go down to the OR for eye exams and surgery. They wanted him to have more time to recover and postponed it until this week on Thursday. 

His stats are...(drumroll)... 4 lbs. 14 oz!!! Yeah buddy.  And 17 inches. He looks so much bigger to us! Gooo Paxton, Keep on Growin'! So proud of him.

~

Ah so many thoughts to share and things that have happened. Personally, as a mom, this week was really hard. Hard in a whole new way. I just wanted to pull Paxton out of that incubator and hold him so many times when he was hurting and crying. It breaks my heart to not be able to. Thursday I was a complete mess and so grateful to a nurse who just said, "Enough with this, you NEED to hold him." I did need to and I was SOOOO grateful she got everybody on board. Hey - funny thing is it's good for the babies, too! :) He did so great with all of his numbers in that time that every day since then they have let Dave and I take turns holding him. It's pretty amazing how his respiratory rate and heart rate go down, and of course we are in la-la land of joy and feeling a bit of 'how things should be.' He's like a little warm sleeping pill for Dad and a sugar high for mom. :) Imagine that.

Tonight with Mommy.

So beautiful and peaceful.

I'm getting much tougher with accepting highs and lows presented to us medically, not so up and down emotionally that way. However, someone said something to me about "if I could balance more time at home with my other kids now that Paxton is doing 'so much better'" and it broke me for about 3 days. First of all, 'so much better' is a really relative term to a parent with a child in the hospital...for a long time! And on top of all the other emotions I was feeling then I spiraled into feeling like I wasn't doing things right or good enough, that I was failing my older boys, or not doing as good as another mom would. I knew better not to compare, but it made me question myself if I was really in tune with what the Lord wanted me to be doing in regards to them. It was just too much for me. I was completely a mess about what to do and where to spend what time. We are definitely worried about all three children, even though I know, as I have said before, that the Lord provides and I know He will help compensate for our other children what they may have physically missed from us. Especially when he has given us this new beautiful child and spirit that really needs us right now, too. Not that that is any excuse or reason not to worry or try extra hard to make sure the boys are doing OKAY! But thankfully we do also have such great - no, amazing - family and friends that I do think our boys are really happy while we are away. But they sort of hit their wall this week too and have melted down at home. I think they probably need to be able to do that. It's a place where they can show they are sad and missing a bit of the normal life we used to have. With time we will all adjust to our new normal after Paxton comes home. (Yes, there is no more talk coming from us about if he will, just when. Even if we have had moments where we have wondered that, what good does that do to your faith?) But it's very emotionally wearing to worry about all three of the boys all of the time. As our older boys definitely showed us they needed some more mom and dad time this week, we gave it to them, but missed more time with Paxton. I went from having 6-8 hours with him to 2-4. It was so hard to leave him at times that he was crying in pain or awake because I had to get home. That is the complete worse. But such is the life of a NICU Mama. More thoughts on that another time. :)

Camden has had some of the sweetest little things to say, all on his own, about Paxton. He will say little things about wanting to wash his hands so Paxton can come home and not be sick from germs. Today he told me he was a little sad because he wanted all of Paxton's owies to get better so he can come home with us. Each of these little comments are always followed with a hug or cuddle to mom, as he is so sober and really sad about it! Tonight he was sad and not responding to us and we asked him if he was sad because mommy and daddy have been at the hospital so much and if he wanted to go with us to see Paxton tomorrow. Well the biggest smile came across his face and he nodded up and down and up an down. So cute. What a brother. The amazing thing is we don't even talk about it that much with them. Some of you may talk about it with your families more than we do! We want to be so careful what and how we say and are trying to not make all the focus on him when we are home. So it's just amazing to me how much he thinks about it and is sad about it all on his own. Wow these little spirits really know what is going on. 

Speaking of, my last little thought is just that about Paxton. He is such an amazing little dude. Everything projected for him was so severe. I definitely can't say that he hasn't had some rough patches, but I look at him and think he is doing so much better than what they thought. To me, he doesn't even seem 'different.' I'm so grateful he connects with us and that we feel that emotional bond and relationship going both ways. 'The eyes have it', as they say. I know his body has lots of physical problems but I feel like his mind and spirit are right there with us. And if his mind is not at some point, I think it will only make him that much more special. His spirit is already perfect, that is no question to me. That's why I am so grateful he is here for this time and to learn as much as we can from him, and bless him with as much love and support as he can possibly have. He needs that, and we want to give it to him every moment we possibly can. He only has one earthly mom and dad and he just needs to know how much we adore him. I really can't wait to have him come home. Yes, I am nervous, of course. We have so much to learn before that can happen, but we all just want to be together, to be blessed by and bless each other... It will be a great blessing to have Paxton home. 

I love the words to songs. I have thought many times about the words to "You are my sunshine" (and swear they were written by a 'NICU Mama'), or "Temporary Home", and many others I wish I have shared already. Another time. But last Sunday, when Paxton smiled in his sleep for the first time, it was the first time I had played lullabies in his isolette. After he smiled and I was so excited I leaned down to hear if maybe there was a song he really liked, that his spirit connected with, and it was "I Am Like a Star".  How darn cute, I thought! What could be more perfect? So I leave you tonight with the words to how I feel about Paxton, and to the truths I know Paxton knows about himself. His little spirit just melts mine and I am so glad he is here.  

I am like a star shining brightly

Shining for the whole world to see

I can do and say (in my own little way)

Happy things each day

For I know Heavenly Father loves me.

He does, Paxton, and so do we! Every one of us. Sleep tight, our little Star. We Love you, Oh so very much!