Wednesday, October 28, 2009

Lots Of Updates

Paxton, as many of you know, had a rough weekend. That is part of the reason my Sunday post was so "angry". While my husband was here on Saturday with the boys, we got the call at midnight that Paxton had taken a turn. When the phone rang at that hour, I literally froze. I had just been there at 9, how could he have changed so quickly, but I am learning that is totally possible with these babies at any given time. Friday the speech therapist came to see why he was so "noisy" when he eats as we all felt there was the possibility he was aspirating his food. Not only did she tell me she really felt there might be damage to his vocal cords during surgery (because the vocal cords are right next to his aorta that they worked on), but I came into his room after leaving for 15 minutes to pump, to see this strange woman holding and feeding my son, when I had yet to be given the chance. I was livid. I am his Mommy and I should have been the first one to hold him and she was saying all of this medical jargon about him that I could not understand. I let her know I was livid by doing what I do best... crying! Yep, I cried, there's a shocker. She said "I know this is scary, blah blah blah" was all I heard after that. The only thing I could focus on was the fact that some lady I didn't know was snuggled up with my son. I could handle vocal cords, our son had survived open heart surgery at 4 days old, we can deal with vocal cords. So it was decided there would be no feeding him by mouth until ENT came to check him and until he could get in for a swallow study on Monday. Then to top off Friday, Saturday night he was unable to maintain his oxygen, his feet had turned very blue and his blood levels came back yucky. So the nurse told us he would be receiving a blood transfusion and going back on i.v. meds. So, here was my thought process as of Saturday night at midnight, with the added knowledge and saddness that my husband and boys were headed home the next morning, that not only did he need blood, he was back on i.v.'s and not eating by mouth at all. There is NO way you can even head in the direction of going home if you are not eating, still on intravenous drugs and needing blood. I was devastated! I wanted and needed more than ever to feel that we were close to going home. I miss my life, my boys, my husband, my house. I was rock bottom as many of you read on Sunday.
Monday came and the ENT doctor came and checked him and said that there was no damage to his vocal cords. Woo hoo! We also found out that Paxton has a UTI and we think this is what may have thrown him over the edge this weekend. Something as simple as a UTI to us, can completely throw heart babies over the edge. It's to much for their bodies to take on anything else with all of the work their hearts do on a daily basis just to keep going, so throw an infection in there and it's over. We started him on antibiotics and his oxygen levels seem to have stabilized. I truly thought even on Monday, that he may have to go back on oxygen, but he seems to be stable as of this evening. Obviously if he's getting the oxygen he needs, his feet are no longer blue. (his feet turn blue first because the extremities are farthest from the heart, just fyi)
Yesterday, we went for his swallow study to see if he was aspirating when he's eating and he was. I got to go and watch the study, it was fascinating. They strapped him in a chair and fed him his milk with barium in it and watched via live x ray to see if the milk was going into his lungs. She would thicken the milk, change positions etc. to see what worked best for him. So today, speech came and helped me learn to feed him. He needs to be in right side line position (laying completely on his side, ear in line with chin, chin in line with hip) at all times during feeds to keep him "safe" from aspirating, he is on a super slow flow nipple and has to take breaks because feeding is exhausting to heart babies. Imagine trying to run and eat at the same time... not so much. Gone are the days are propping a bottle and walking away. Nope, I literally have to watch his every move to make sure he taking it ok and not turning blue. So, I did get the chance to feed my baby in my arms for the first time today. He is 3 weeks old and I am finally feeding him like a typical mom gets to every day. Well...except for trying to not accidentally pull the i.v. line going directly into his heart out while simply trying to burp him! I used to be such a confident Mom. I have been around babies and kids all of my life and I feel so awkward and clumsy now. I am sure I will get better the more I am able to do, but man I sure dislike this unsure feeling I have when caring for my son. He's my third, I should so be a pro at this, yet it's so different than anything I have ever had to do. I can't imagine if this were my first child...
Tomorrow or the next day we will begin to wean his i.v. meds, which I PRAY goes well this time. We cannot go home if he can't get off of them. Once he gets off of those meds, we can take the heart i.v. out and work on his feeds and think ( and I say think as a relative term) about heading home. Lord, please hear me when I beg of you to let us go home soon.
Paxton is doing amazing. He really is ahead of the game on so many levels. I try to focus on that and give thanks for it. I know this could have gone much, much worse than it has.
I also want to take a moment and mention that our brave, strong boy has been nominated by a wonderful company whose owners have become dear friends of mine, as their recipient of the month. If you head over to their website who's link I have attached to the title of this post. Just click on Lots Of Updates and it will lead you to them, they will post his story on November 1st. Until then if you scroll down, it shows you a picture of Paxton announcing his nomination. I learned about Baby Be Blessed when we lost baby Tadem. So, once I learned that Paxton was sick and would be in the hospital for so long, I immediatly knew that I wanted one of their dolls for our son. When I went to their website in September, the website said they were overwhelmed with Christmas orders and that they could no longer accept any more orders until further notice. I was so bummed and knew that I really wanted one for our boy. So I emailed Laura and Tina explaining Paxtons situation and asked if I could pay extra to possibly have one made for him. To my surprise, the girls emailed me back saying that they would be happy to make Paxton one and that it was their gift to us. You will see on their website his "Lamby Bear" on top of his incubator in the picture. It has been with him since day one!!! The ladies at Baby Be Blessed really showed me what kindness was all about at the very beginning of this ordeal and as of a week ago reminded me yet again how many people are pulling for our son when they chose him for the recipient of the month.
All throughout this journey, I am reminded of the kindness that is still left in this world. I am reminded that I am not alone. That our son has so many prayers, love and support out there for him.
Thank you Baby Be Blessed for the love you have shown our son and a family you have never even met!
I am headed home this weekend to spend Halloween trick or treating with the boys! It will be hard to leave, but oh my goodness it will be so amazing to be home again. Although, it struck me funny this morning when I realized I needed to pack a bag to go home. Doesn't make sense to me. ONE FINE DAY, I will be packing all of my stuff up to head home with our third born.
I will be sure to post pictures of the boys in their costumes! I will try to get some photos of Paxton eating, but since I am doing the feedings I don't get as many pictures, which is so ok by me, if it means I get to have that boy in my arms!

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1 comment:

Divine Mrs D said...

I've been visiting from Baby Be Blessed since they posted Paxton's information. Your family is in my prayers and I know that God will bring your son home to you soon!

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