Friday, February 15, 2013

Ready or Not

It is hard to believe that it has really been 4 weeks since I was pulling heading to St. Louis to see Kelsea and go with her to what I thought was our last normal routine NST and dr. appointment. I am not really sure where the time has gone. I do know however that I am thankful for the strength and patience that God has given myself and Kelsea over the past four weeks. To be able to sit here, in a semi-comfortable chair for up to 18 hours a day, without even batting an eye, is truly the power of God.

Wednesday was not a good day for us. I got here at my normal time of 6:00 a.m. Alarm goes off several times before I finally get out of bed at 4:45, shower, go downstairs, start coffee for "Ronald" and then start the 11 mile trek from the Ronald McDonald House to Children's. At 5:30 in the morning, it's not really a trek. There is little traffic and it's an exciting drive!

Wednesday morning was an exciting morning. Hayden was getting circumcised, meeting with a car seat specialist to see if his car seat could be adapted for his eventual trip home. After that, a reporter and photographer from the Quincy Herald Whig were coming to meet us and spread Hayden's story and how God provides Grace and Mercy. One of our night nurses got Hayden dressed up in a cute outfit and even put his "leads" (wires to measure his heartbeat, respiration, and oxygen saturation) on his back so they would be hidden from the camera!

Phil and Maggie were awesome. It was nice to meet them and it was so relaxed. They were crib side with Hayden, Kelsea and I for almost 90 minutes. Towards the end of the interview, Dr. Warner stopped by and wanted to see Hayden's Omphalocele since it had been a few days since he had seen it last. This is where things started to change for the day. While changing his dressing, we realized his cords were wrapped in the diaper, so we had to take that off. Once that was off, he made a little mess, so we had to change his diaper and his dressing from his circumcision. Well, Hayden didn't like this and started fussing and crying. After Dr. Warner changed his diaper and then rewrapped Hayden's O, he felt since there was such great skin coverage, it was time to start applying compression. He used an Ace Bandage and then was able to go spend a few minutes with the QHW staff for an interview.

Well, Hayden did not like the compression from the bandage and he struggled all afternoon and evening. He wasn't tolerating feeds, he was screaming and crying, he was arching his back and his saturation levels kept dropping. Surgery came back and loosened it a little, but that did not help. He was spitting up his milk (and I mean spitting) and it was just a horrible evening. Kelsea did such an awesome job to comfort Hayden. I was amazed at how her mommy instincts took over every time he would spit up and start screaming. I fell in love with her even more watching her jump in to action. As her mommy "nurturing" instinct took over, I felt my daddy "protective" instinct taking over. Hayden was in obvious pain and nothing that was being done was working. It is hard to tell exactly what was causing the issue, and I know the doctors and surgeons can't rule anything out, but I KNOW what was causing the problems. I was waiting, hoping our doctors would make the right decision, instead of waiting for the morning for somebody else to make a decision, but it didn't happen. Finally, around 9 pm, after his third episode of spitting up and screaming and arching his back, I told the doctors that loosening it was not an option for me and if they don't decide to take it off, I will. Well, after 25 minutes of things getting worse, that wrap was in the garbage and within 3 minutes, he was in mom's arms and back to his normal self.

I know the compression wrap is going to be a very important part of getting Hayden on track of putting things back inside. However, I was not ready to compromise the progress we have made with feeding. I figured I would make surgery mad by going against their decisions, but at that moment I didn't care. I know there will be discomfort with having pressure put on his organs and that we won't be able to get around. However, as surgery said on their rounds yesterday morning, "Hayden told us he wasn't ready." I couldn't agree more. I also told them I hope I'm not viewed as the "bad" guy now! Everything is all good. I don't want to be "that parent" that questions everything the doctors do and second guesses them and I don't. We came here because they are the best and we have put our full confidence in them. If we didn't feel that way, we wouldn't be here.

After finally leaving the hospital at 12:30 (Kelsea stayed until about 1 a.m. I think), I was able to get about 3 hours of sleep and was back at the hospital yesterday morning by 5:25. Kelsea and I were there for a little over 18 hours on Wednesday, but we wouldn't have been anywhere else. I stuck around for rounds and after things were good, I came home and slept for a few hours.

Since then, Hayden has done awesome on his feeds. Kelsea or I haven't been able to get him to take a full feed from his bottle yet, but the night nurses have. Last night, he took 3 out of 4 bottles completely!

That is HUGE! We are hoping today that mom or I can replicate that! Tomorrow we will probably do the PO ad mouth, at will. That means we won't wake him up at 3 hours to feed him. We will wait for him to tell us he is hungry and we won't put the leftovers into his feeding tube. Today is a big day and tomorrow is an even bigger day. We are so close..... and we are SO ready to bring this boy home. It will definitely be an adjustment, but we are ready!

Hayden also made an appearance in the Huffington Post. Check it out HERE.

By the way.......doctors just did their rounds so I stopped typing. However, I was just told to plan on having his "home" pediatrician check him out on Wednesday!!!!!!

And one last update....Dad just fed him a full bottle for the first time!!!! No holding back the tears this time!

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