Home Part Deux

The video for today explains it all! Wouldn't you know, as soon as we turned on to Kochs lane last night, this song was on the radio! Welcome home Hayden Owen Hoskins!

Test Ride

Today was another GREAT day for Hayden and the Hoskins family. It was another day filled with full bottle feeds and "riding" in his car seat for three hours! This test ride simulated the car ride home. Since we are 2.5 hours from home, he had to sit in his car seat for 3 hours (in his crib!) and they monitor his vitals and make sure that he has no Oxygen desaturations or increased respiratory rates. We watched for an hour, and then went and met some friends at Tom's Bar and Grill in the Central  West End for lunch. Excellent choice. It was good to get some good bar food! Well, when we returned, Hayden had "just arrived" from his trip and passed with flying colors! One more thing to check off!

The last thing that really needs to be done to him is his hearing test. I am not sure if I posted or not, but Hayden's genetic testing came back and there were zero chromosomal issues and/or concerns. Another big sigh of relief came at the end of the day. Surgery was ready to put Hayden's compression wrap back on. We were able to sit down and discuss options, outcomes, and overall plan. I was open to it, but also a little defensive. At first, I was misunderstanding what the plan was, what the ideas and what possible effects were. However, once we all got on the same page, it was explained that it would be nothing like it was the other day. And when we put the compression wrap on, it WAS completely different. It is all good and Hayden did great with it!

We continue to be amazed by God's grace and mercy and how He has fulfilled the promises He had made. We are definitely not past the mountains yet, but He has already moved so many of them for us. He continues to answer prayers that are coming from around the world. We are so grateful that we have the friends and family, and even "strangers" in our life that have joined us for this journey. We also are so grateful that we have had God right by our side the entire time. I can't imagine going through this without him. He truly has been "leading us through it." Sometimes I feel like God puts certain people in certain situation because He knows they can handle it. Other times I feel like He puts us through these situations to "test" us and remind us that we need to rely on Him. Well, I am happy to say that with our faith and our reliance on Him, we are passing the test.

 



A Video for Today

Hayden wanted to share with everybody a song he found that was written many years before he was born. He knows that Zakk Wylde and Lemmy Kilmister wrote this song thinking about this very day! With that being said, he knows that many people are not a fan of this person, but, if he could talk, this is exactly what he would be telling Kelsea today.

Quick update

Wifi is not working at hospital, so just a quick update. We are over 24 hours on full bottle feeds. Car seat test today and feeding tube will be pulled tonight or tomorrow morning! Fitted him in his car seat and PT made some modifications!

We also have a dr appt with Hayden's dr on Wednesday. Now guess where?

Yep, you got it....in QUINCY!!! Looking at being kicked out Monday or Tuesday!

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 lib....by 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!

What restores our faith in God?

What a perfect song on this mighty, awesome, wonderful day. Praises have continuously been going up for God's plan for Hayden Owen Hoskins and the blessings continue to fall. Yesterday, his weight jumped up to 3130 grams. That equates to 6 lbs and 14.5 oz. His weight is still low, but he is rapidly putting it back on! One potential issue babies with Omphaloceles deal with are feeding and low weights. However, I think Hayden is going to surprise everybody, once again, and have no issues with his weight.

Even better than the weight gain is the news we found out about his bottle feeding last night. He still has his feeding tube in and in order for that to come out and for us to head home, Hayden needs to be able to fully rely on the bottle/nursing for his feeds. His goal is to PO Ad lib, which basically means feeding by mouth, at will....or having his cycles of sleep and then waking up and wanting a bottle every 3-4 hours. In the beginning, he was taking 20 ml per bottle of his 60 ml. After 2 days, he seemed like he always wanted more, so we upped it to 40 ml per bottle. The first few, he took down
the full amount, but then backed off and the next couple took about half. However yesterday, he struggled. Surgery wanted to go ahead and take him off the NG feed and do the Ad lib, but I was hesitant because he was barely taking half of his bottle feed and didn't want to have a setback. So, we stuck with giving him as much as he would take and then feeding the rest through his feeding tube. However, he seemed more fussy yesterday and just wasn't a happy camper. He took down about 30 for me in the morning, but then went down hill. He only took 15 at his 11 o'clock feeding and then roughly 30 at his 2 o'clock, and then about 24 at his 5 o'clock feeding.

Thankfully, our miracle worker nurse came in last night and he did so well. His first bottle under her watch, at 8:00 pm, was demolished! She said there was no stopping him. She said about an hour after his bottle, Hayden went ballistic. Screaming, crying, not taking his pacifier and even spit up a little food. She said there was no calming him and this is VERY out of the ordinary. He never cries/screams. He grunts a little and fusses every now and then, but is never a problem. Then came the explosion that rocked the NICU. She said he let out a monstrous fart! Then he had several monstrous poops. Some of the worst he has ever had! She just told the next nurse that it was like Mount Vesuvius! Several diapers were needed, but that is normal! He has never been a one-diaper guy! She said he was fussy and upset before, but after, he was good to go. His 11 o'clock feeding was done through the feeding tube because he was so worn out, but his next two, at 2:00 and 5:00 a.m. went smoothly. He did what I asked of him. We keep telling him that the quicker he can reach his goals, the quicker he can get home and see his pets!

Well, we are going to hold off on his ad lib feeding today because he is getting circumcised this morning. Our nurse said they usually have a bad day when they are circumcised, so we are going to take it easy, not force anything, and possibly try again tonight. I know we will be good because even though I know this was all a part of God's plan from the beginning, our mighty, awesome, wonderful nurse is back again!

Even Hayden knows who is responsible for his miracles!

Setting Goals!

It is hard to imagine we have been here for 25 days already. The time really has flown by quickly and we have met some great people and have had the absolutely best care. One of the fellows (neonatologist doctors), who I think would take Hayden home with her in a heartbeat, finally got to hold him yesterday. She is so sweet and loves being around and talking to Hayden. Even with the great care and great people, we are ready to come home. Kelsea has been in St. Louis for five and a half weeks and I have been down here for three and a half. It is the worst feeling in the world to leave Hayden at night. I don't feel like a bad parent, I just don't like leaving him here. It doesn't feel right. However, we are comforted because we know the nurses take exceptional care of him when we are gone.

With that being said, we still don't have a date, but all we keep hearing is "Do you have a go home date yet?" One of the doctors this morning asked me if Surgery (the surgical team) had given us a date yet. Well, it still all depends on his feeding and him becoming self reliant. In order for him to reach his goal, he needs to take 45ml by bottle Q3 (which means he gets a bottle every three hours) or 57 Q4 (4 hours). Yesterday, he was taking roughly 25-30 ml in his bottle feeds and last night, his nurse said he took 35, 45, and 43 I think. That would be so amazing if he could reach that today. If he does, then tonight we would try to bottle feed him only. Once he relies solely on his bottle, then we can try breast feeding again. Once those things are in place, we will be heading home. It feels like it is within reach this morning. We are so hopeful to be home within a week.

We continue to be amazed at how well he is doing and we know that it is all because this was a part of God's plan. So many prayers have been answered over the past few weeks. We are so grateful for the people who have put their selfish needs aside and put my family at the forefront. I was humbled again yesterday, and amazed. I was on the elevator up to the NICU and started talking a couple who was going to the NICU to visit their grandchild. When we got off the elevator, the gentleman asked me my son's name and then said, "We're gonna do this right here and right now." He then immediately broke in to prayer, right in the hallway outside of the waiting room for the NICU. It was so powerful and such a moving experience. Once again, I was shown the love God has for us and seeing other's faith and love for God and trust in His plan lifted me up. I couldn't stop smiling after that brief, but short encounter.

Yesterday, we also found online a new article that was written by him. It was posted in the Daily Mail (click for the article), which is the 2nd largest newspaper in the U.K. However, it was only posted online and on the U.S. site. The author, Victoria Wellman, took the news report from Fox, found some information on this blog and Facebook, and wrote a fantastic story. Kelsea and I were again amazed and grateful for the opportunity for God's great work to be spread around the world through Hayden.
 

This morning, I arrived at my normal time: 5:55! I was given a wonderful report from the night before. Hayden gained 75 grams yesterday, which is roughly 2.5 oz. That was an amazing jump over night. That means he weighs about 6lbs. and 9.5 oz! However, the nurse also said he might have dropped some weight because of what he did about 4 o'clock this morning! She said he scared himself, as well as the cleaning lady because of the sound that came from his diaper this morning! She said it was a two-diaper job! After that, she said he stayed wide awake and they hung out (she held him) while doing work on the computer! When I walked in, he was wide awake! I usually don't mess with him when I come. I give him a kiss and then sit down and work on the computer. However, since he was wide awake, we got to "play" a little this morning. Finally about 6:45 he tired out and fell asleep. Which is what he is doing right now. Shortly though, I will change his diaper, change the dressing on his Omphalocele, and then feed him.

I told him his goal for today is 45 ml by bottle. Kelsea and I keep telling him that the more he can take by bottle, the quicker he will get home to see Tucker, Killer, and Slice!