Monday, June 24, 2013

God and Lint (not Lent)

God is so good to us. It is so hard to comprehend how He can continuously show us love when I feel like it is much more than what I give in return. I can't remember if it is grace or mercy (Bob Cowman had an excellent definition/illustration a few months ago either on his blog or Facebook and maybe he can re post it!), but it is such an amazing feeling when you receive it from God. Hayden is doing so much better than we ever could have expected or dreamt and he is resting peacefully right next to me.

My mind is running a million miles a minute and I am not even sure where to start. Kelsea and I decided to drive down to St. Louis last night so we didn't have to fight traffic early this morning. The drive from Troy to Kingshighway was absolutely horrible. We had heavy, heavy rain, thunder, and lightning the entire way. We probably averages 40 mph the last 40 miles. I couldn't get over how much water was on the highway in so many different places. Cars continuously were hydroplaning and sliding all over the place due to water on the road. We made it and checked in to the hotel around 7:15. After getting checked-in and Hayden fed, we were hungry and decided to get food from the Applebee's that is in the hotel. Well, to make a long story short, for those of you who know what happens when we (particularly Kelsea) dine out, the curse continued! For those of you who don't know, Kelsea CANNOT eat/order food from a restaurant and expect to get the correct food delivered/placed in front of her!

 After getting everything straightened out, we finally ate dinner around 9:30, got Hayden to sleep, and tried to go to bed ourselves. I'm not sure about Kelsea, but I know I struggled. My stomach was turning every way possible. I know I did get some sleep, but not certain how much. Kelsea probably had less than I did. He woke up at three and Kelsea fed him. At 4:30, I gave him a little more to eat as this was the cutoff time for feeding him.

While getting ready this morning, Hayden did awesome. He was hungry, but was still his happy self! Talking and playing with toys on the bed while we took turns showering and getting ready. It wasn't until right before they took him back to the OR that he started to fuss a little bit. In the pre-op room, we had the normal gamut of questions, repeated 7 times! Mandy Murphy and Fox 2 is doing a follow-up story on Hayden, so her film crew was in the room shooting a little footage of Kelsea, Hayden and myself. They were also in the operating room for his surgery. More on that at a later date. Dr. Warner met with us first and told us there were really three options and he didn't know yet which method he would use for Hayden until they were able to get in side and see how he responded to different situations. The first was full muscle closure which is what we were wanting. This would be a one time surgery and he would be able to stretch the muscle and skin together after putting all organs back inside. The second option was partial closure utilizing mesh. The mesh would be used to connect the muscle fascia and then the skin would be closed over this. The third would be a reduction in size of the omphalocele which would lead to another closure surgery at a later date.

As Dr. Warner said, "I can be the hero and get full closure today. However, this could compromise his ability to breathe and wouldn't help us achieve what we want." We were ok with Hayden dictating what his body could handle! We obviously wanted to have everything back inside and have full closure, but if he wasn't ready, then we were fine with that too.

Next came Hayden's ENT dr. that we met with last week. I have praised God so many times today for pushing us to meet with a GI doctor in St. Louis a week ago. It was His plan all along for the GI doctor (we met with her to look into his vomiting/feeding difficulties) to miraculously hear his wheezing while breathing and refer us to an ENT last Thursday. We also almost didn't keep the appointment last Thursday because I wasn't wanting to make another trip to St. Louis, plus we had another appointment in Quincy at the exact same time. Well, it was a true lifesaver we did. His ENT didn't find anything last week, but wanted to do a short procedure before his surgery this morning. She found out that Hayden has Tracheomalacia as well as Bronchomalacia which means his trachea and bronchus collapse when he breathes. We don't really understand this completely yet, and how it will play in to Hayden's recovery, but his ENT didn't seem too overly concerned at this point. She said most babies outgrow this by two years of age. I also think, from my quick research I did while he was still in surgery, that this is a fairly common associated "thing" with babies that have Omphaloceles. Why...who knows. What does that mean....who knows. She will follow in the background this next week and watch Hayden while he recovers.

About 2.5 hours after Hayden was taken back to the OR, which was one of the hardest things I have had to Kelsea hand him over to the nurse.....Dr. Warner came out. He was able to achieve full closure!!! We were floored. Kelsea and I thought there was no way that would happen. They almost didn't leave him on the ventilator either, but wanted to give him 24 hours to see how he does. Right now, he is on the ventilator, but breathing quite a bit on his own. The plan is to continue to wean him off tonight and if things continue the way they have, then they will look at extubating him tomorrow.

Hayden is currently resting peacefully and has a 1,000 tubes and wires hooked up again. I am doing better than what I thought I would be at this time. However, when Hayden is startled, he does "come to" somewhat and even though you can't hear him, you can see him "crying." This is infrequent and usually doesn't last long, however it still breaks our heart to see him looking at us, him attempting to cry, and his arms restrained. His abdomen looks absolutely amazing. Dr. Warner said it was flat, but we still planned on him having a bulging belly. Boy were we ever wrong. It's in flat! I'm still floored at what he was able to accomplish in the OR!

I napped this afternoon and am hanging out in the PICU with Hayden tonight. Kelsea stayed with him this afternoon and is back at the hotel getting some rest (hopefully). Our first goal right now is to get Hayden off of the ventilator. Our second goal is for him to increase his urine output. So far, he has had very little output and they have increased his IV fluid intake. Hopefully that will help shortly. As Dr. Warner said after the surgery, we are not out of the woods yet. He has come a long ways, but we still have huge hurdles to cross. We are asking for prayers for Hayden's continued success with breathing as well as getting fluids to pass through his body. The next request is for his GI tract. Since his organs grew in different shapes and sizes outside of his body, when they are put back inside, things are necessarily in the right place so babies with Omphaloceles potentially have continued feeding issues. The surgical team will be looking at that some time later in the week.

Kelsea and I so blessed. WE feel like little kids on Christmas morning. The tears of fear after hearing from his ENT after her procedure this morning quickly turned in to tears of joy. They have been on and off all day, yet we know God is still on our side as we start this next leg of our journey. It is scary figuring out the PICU life (especially if you have a nurse who is great at what she does, but not so great at explaining what she does), but we know he has absolutely the best care possible as well as the biggest cheering/praying section available to him!

We are also asking that you say a quick prayer for Frankie and his family. He is another baby, from St. Louis, who is having his closure surgery tomorrow morning. They have had a long journey to get to this point and we are so excited for them. They could possibly be on the same floor, and it just hit me....considering we are the only room in the PICU that is a "double" room (every other room is single) is it in the cards that Hayden and Frankie will be bunkmates??? How crazy would that be!!! Either way, we are sending love, prayers, and good vibes to Frankie, his parents Alex and Joe, and his sister. We know, as Hayden was, Frankie is in good hands with the surgeons, nurses, and doctors at St. Louis Children's. 

Oh yeah...almost forgot...if you read yesterday's post (6.23)....God gave the thumbs up on Hayden collecting belly button lint!!

1 comment:

  1. grace is when you are given something you do not deserve and mercy is when you are not given something you do deserve