Am I Dreaming?

It is 11:15 p.m. Saturday night. I got Hayden fed and back into his crib and was going to watch Saturday Night Live. However, I figured I would take a few moments and update everybody on our first week at home. As always, I have had great intentions of updating before today, however, as many of you know, it is not the easiest thing to adjust being home with a new addition! I never thought I would say this, but at times, I kind of miss the NICU. I don't think it is the NICU itself, rather the nurses and doctors who were right there by our side the entire time. Even though I didn't always agree with what was being done, we were around some of the top medical personnel in the country and they became a huge part of our life. Even though they were there to do a job, it was so much more personal than just a job. Many of these people became our friends and it is always hard when people who come to mean so much to you all of a sudden disappear.

It has been a wondeful week for the Hoskins and we hope it continues. Kelsea and I finally got the courage to go pick Tucker up Wednesday from Rome and Tiffany. Well, I went...she stayed home with Hayden! We were a little apprehensive because we knew it would be a lot more work added to our load, but we were excited to see him. We can't begin to thank the Frericks enough for their graciousness by "boarding" Tucker for a month. I know they said it was no problem and they were glad to have him, but it was just so wonderful of them to give Tucker a place to stay and a new buddy to play with at all hours of the day!

 

 Tucker definitely did not respond how I thought he would be when I got him home. I figured he would go craxzy when he saw Kelsea and tear through the house checking things out. He was far from it. However, aftet nor seeing Kelsea for 6 weeks and being at his "friends" house for 4 weeks, I am sure he was a little leary of what was going on. He really hasn't left my side (except he is in bed with Kelsea right now) for the past 72 hours. He knows he is not the "top dog" in the house anymore and even though he does "mope" around the house (not sure if that is because mroe attention is being given to Hayden or he misses playing tug-o-war with Buster every day) I think he approves of Hayden. He loves to sniff him and lay near him when Hayden is on the floor.

 

We were also very grateful for the Teels and Hackett's for taking care of the cats while we were gone and all of our other neighbors for keeping an eye on things when mom and dad weren't around. The neighbors have gone above and beyond what I ever could have possibly imagined a group of people would and could do. They have spoiled Kelsea and I beyond belief and have, and will continue to make our lives easier for several weeks. It is one thing to see God working in your life, but it is a completely different thing to see Him working in others' lives. The generosity of those around us (and those not around us) are truly an inspiration and even make me upset with myself when I think back to many different times when my selfishness stood in the way.

I tried to pay it back somewhat when we had the snowstorm the other night. I tried to help out several neighbors by clearing their driveway. I was going to do more, but the snowblower started cutting out on me after about 10 hours of use! I took it in to get serviced yesterday so I didn't get to do as many as I planned. It does look like I will have another opportunity to help others out...as long as I can pick it up on Monday!

 

I have not returned to work yet. I am planning on going back a week from Monday. I wanted to make sure that Kelsea and I have all of Hayden's in home medical "things" taken care of. This past week we had a nurse, PT (Physical Therapist), and OT (Occupational Therapist) all visit and will continue to do so in the future. The biggest reason for OT and PT is because he has to spend most of his time on his back, Hayden will get very limited (and modified) "tummy time." This could potentially have an impact on him reaching different milestones such as sitting up, rolling over, crawling, and walking. However, I know Kelsea will be his biggest advocate and will do everything she can at home to help him reach those milestones. Hayden also had his first appointment with his local doctor. Kathy Asbury, who is a Family Doctor and also goes to our church is going to be Hayden's primary doctor in Quincy. We feel truly blessed to have her as Hayden's "go to" doctor in Quincy.

 

We have also spent some time this past week with a reporter and photographer from the Herald Whig. Not set in stone, but it looks like next Sunday's edition will include a story on Hayden and our journey.

His feeds are going well and for the most part, he is taking his full amounts. We have had several issues the past couple of days with him spitting up after many of his feeds......sometimes it is several hours after he eats. I know this is a common thing and many babies spit up, however it scares me because feeding and eating is always a major concern and possible complication seen in babies who have omphaloceles. We have been charting and tracking our every single move. One more thing to add to our list, but we hope it will help us narrow down what is making him throw up/spit up his milk and that it would even turn out to be just everyday baby stuff!

I am sure there are many things I have left out as well as many people I have forgot to give thanks to. We continue to get cards in the mail and we greatly appreciate every single one. We apologize if there is anyone out there who hasn't received a thank you (whether it be text message, e-mail, personal letter, or form letter) but Kelsea has done such a wondeful job of trying to stay on top of that. As I said earlier in the week, I really enjoy typing these posts and keeping everyone informed. However, I have quickly realized that they are going to get a little thin until we get more in to our routine. Especially with me going back to school in a week, however, I promise to try my best! Since this is my "time" to be sleeping, I should get to bed. I will still cotinue to post links on Facebook when I have an update, but remember, you can sign up for e-mail notification when I have a new post.

 

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Pure Bliss

Update time as I'm waiting for the coffee and the boy hasn't woken up for his 6 am feeding yet! Things are going great. We couldn't be happier to be home. It took us a day or two to acclimate ourselves to our home. We kept thinking this or that was new and had never seen it before. Kelsea couldn't find the bowls and I couldn't find the silverware! However, I think we're good now!

The feeling was unexplainable when we pulled into the driveway! We don't ha e our (Kelsea and I) schedule down yet, but we will. It has been bust trying to organize, put things away, and of course find the bowls! Thank you to my parents for having a clean house to come home to. They were so excited to see him come home before they headed home. We got back to Quincy about 6 Saturday night and they had a 7 am flight out of St. Louis. They stuck around for an hour or two before finally heading out on what I'm sure was a very long drive to St. Louis!

So far I'm 2 for 2 on trips to Walmart the past 2 days. It also looks like I need to make a third today! Cats are going to the groomer again today (we started shaving them to cut down on hair on floor), Hayden has his first appt. with his local dr, AND we are going to pick up Tucker'! Although a little nervous about bringing him home knowing the attention he will need, we are very excited! I'm also gonna show Hayden how to fire up the snow blower today and let him practice for tomorrow. After all, that is why you have kids, isn't it? To help around the house??!!

I quickly learned that updates and posts will be fewer and farther between, especially after I start back at school. Not exactly sure when yet. We need to get everything under control (medical stuff mom and dad have to do, PT visits, OT visits, home health nurse visits, and everything else) and then decide.

We also don't mind visitors, we just ask that you call, text, or email before so we can let you know if things are good. We also ask that If you are, have been recently, or have been around somebody who has been sick, that you stay away!!!! We also ask that kids not come as well and don't be offended if I have you squirt germ-x on your hands every 5 minutes!!!

Thank you again everybody for your love, support, and prayers. We know God answered many of your prayers and He is the reason Hayden is doing so well.

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!

Full Speed Ahead

Well, the past few days have been a whirlwind. We have had lots of family in town and it has kept us busy! The response from Hayden's news segment has been crazy. Mandy Murphey's report was shared on Facebook via the Fox 2 website over 1,000 times, 4 times on Twitter, and even once on Pinterest! Kelsea and I are so happy that God is showing others His love through Hayden's journey and hopefully giving other families who might be facing similar or difficult situations hope that and faith that He loves them and He wouldn't lead them to their place in life if He wouldn't lead them through it. On Thursday, there were also over 1,000 page views on this blog, which was absolutely crazy! The more we travel on this journey and the more people that join us, the more I want to keep everybody up to date!

Hayden has been doing awesome on his feeds. He is currently getting roughly 80 ml in a one hour period (that is his current feeding goal) and starting last night, over half of that is coming from a bottle feed. He is becoming quite the hungry little boy and is taking his bottle feeds like a champ! His Omphalocele is getting smaller every day.....still pretty big, but I can tell by the amount of dressing that is used to cover it, there is more and more left over every day! Kelsea and I have taken over the dressing changes because we will be responsible for that once we go home. Speaking of home, our main doctor last week mentioned that if his feeding still progresses like it has, we could possibly be looking at heading home as early as the end of this week. We are not getting our hopes up just yet, and nothing is set in stone, but it is getting closer! The nurse also told me last night in response to some questions I had, that as they prepare the baby for heading home, they will start to do this and that! Wow! Preparing for heading home..... How awesome did those words sound! On Monday we will do our CPR class and then we have to watch some videos.

Another thing we will have to figure out before we head home is the car seat situation. After doing my research on Consumer Reports, and talking to a few friends, we purchased the Chicco Keyfit 30 travel system (car seat and stroller). However, as was before, our current concern is if we will be able to use a regular car seat. We have read on different websites and blogs how PT's and OT's from different hospitals have been able to create/mold a protective shell/harness that would adapt the car seat to fit safely around the omphalocele. The problem is where the harnesses come down and buckle into the bottom is right where his "O" is and it is probably not the best to have that pressure right against it. I wrote about my frustrations with this problem in the post titled Perfection and how I didn't want him to have to go home in a "bed" laying down. Well, we might be travelling down that parth and even though it is not what I want, if that is what God wants and what it takes to get him home, then tell me where to sign up! Besides performing level II/III ultrasound out of my basement, I am going to add to my list of jobs to do in my spare time.....manufacture an alternative to the Hope Car Bed. I think I could retire from teaching! If you want to check out the link, check out the pictures/facial expression of the baby used. I love how they use "psychology" to make you feel like your baby will LOVE the bed they are selling!

The nurse who came on at 7 was just talking to me and said we probably need to start preparing NOW for going home! As I said earlier, we don't want to get our hopes up, but something has been telling me that by this time next week, we will be waking up in our own bed! Praise God and good job Hayden! Full speed ahead buddy!

In Case You Missed it.....

Last night was truly amazing....all over again! The suspense was killing me! That was definitely the longest 48 minutes of my life waiting on the segment. Mandy Murphey did an absolutely fantastic job. Kelsea and I feel so blessed and lucky that we will be able to relive that moment whenever we want. I can't even begin to thank (let alone mention all the names of the people in the OR) everybody who was a part of Hayden's big day.

It is also amazing to see the love and support of everybody around the world. Hayden is definitely being used by God to touch the hearts of many, many people. Kelsea and I are thankful for the continuous prayers from our church family, Columbus Road Baptist Church, our friends, family, and strangers. We know every single one of you had a hand in this and will continue to do so as Hayden grows and improves every single day down here.

I left my house exactly three weeks ago and am definitely ready to get home. However, we are here for as long as it takes. As Mandy Murphey said in her special, we couldn't imagine being at a better place. The Fetal Care Center and St. Louis Children's Hospital is filled with some of the best doctors, nurses, and medical staff in the country and we are blessed to live this close. This is why we came here!

In case you missed it, which I'm not sure anybody did, here is the link to the story and the videos associated with it, from Fox 2 and Mandy Murphey. I tried to embed it in the post, but couldn't get it to work!

http://fox2now.com/2013/02/07/baby-born-with-organs-on-outside/#ooid=IwNzE3OTorA7oREm7TOOXDJkHvgv2UhT

Making Room for Milk

Today was such a fantastic day, with the exception of a two hour round trip back to Barnes. Hayden reached his feeding goal of 21ml/hr at 8 a.m. this morning. Fifteen minutes after that, the neonatologist team came by for their morning rounds. Our new doctor who started her month long shift in the NICU last week is amazing. We are not sure if she is German or Norwegian (guessing  based on accent) but she is something else. Everybody is amazing (with the exception of one person who we had a negative interaction with one shift) and I can't say that enough. She is very gun-ho about Hayden and VERY impressed with the way he is progressing. It is so uplifting to see and hear them talk about him and brag to other doctors about how well he is doing!  There is also a Neonatologist fellow (think she is a fellow) who absolutely loves Hayden and I'm pretty certain she would take him home with her if she could. She keeps telling us she wants to hold him, but she hasn't yet. She has been in the NICU since day one (today was day of life 19!) and she is so gentle and sincere with him!

While speaking to the other doctors and talking about plan of actions, the doctor said that the two teams (neonatologists and surgeons) agreed that we are competent parents and will continue to just use the Xeroform wrapping, which is basically a petroleum based gauze. The goal is to keep the sac wet and help the skin to grow over his Omphalocele. Think of keeping a cut, or strawberry from sliding in baseball/softball, moist with Vaseline and covering it. It never scabs over and skin grows back almost immediately.

Since Hayden reached his feeding goal today, we were going to wait 24 hours, then give him the same amount of shorter periods of time with gaps in between to give him sleep/wake cycles and times of hunger. Well, the doctors and nurse said he is doing so well, they were going to skip the wait and go ahead and try him on his bottle. Kelsea and I would like to thank everyone who said a prayer for Hayden today because he was a champ! We tried 20ml in a bottle at 11 this morning and we had no idea what to expect. We thought he might play with the nipple, spit the milk out, purse his lips together and not take the bottle. Well, to see how this ended up, just take a look at the two videos below. FYI....the laughing you hear coming from myself, Kelsea, and our nurse is due to Hayden "making room" for his milk! He is definitely not afraid to make his presence known. He is loud and proud!

Well, after his feeding (he took down all 20 ml) he was worn out. Kelsea burped him and he was out like a light! The nurse said his vitals (heart rate, respiratory rate, and oxygen saturation) were the best she has ever seen out of him. He basically slept for 4 hours straight until he woke up and took down another 16 ml! During this time, Kelsea had a little scare. She came back from the bathroom and her incision was bleeding a little bit. She has had zero issues since her surgery. Since she hasn't really even had any bleeding, this really concerned me. She called the doctor's office and they told her to go to the Pregnancy Assessment Center at Barnes. Ok. Now, I'm really getting freaked out on the walk over. I had visions of her incision opening up and her having to be put back under so they could reclose the site. It also didn't help when she had to be "admitted" to Barnes again just so she could lay on a bed! However, after about 90 minutes of sitting in a tiny little room that was making me claustrophobic, another wonderful (imagine that) OB resident came in, said it was just a tiny opening in the outermost part of her skin and closed it up with some topical solution and we were good to go!

However, our short visit was filled with lots of questions and joking around with the nurses because they all remembered us as the "ones who were going to be on the news." They have probably seen hundreds of patients in the past 3 weeks, but we stuck out! They all kept asking when it was going to be on tv, and promised to watch, etc... This has kind of been the norm the past few days. The NICU doctors keep talking about their "star" who is going to become more famous now and not just because he is doing so well! I will post more information regarding tomorrow night's newscast on Fox 2 and how you will be able to view it if you are not in the St. Louis metro area.

Once we arrived back to the NICU, the Fetal Care Center public relations representative came to the NICU and talked to us about doing their interview and film next week sometime. Again, something that was pushed back due to Hayden surprising us a few days early!

I'm not sure if it was the imitation Starbucks White Mocha I had from the Barnes & Noble bookstore or if it was my nerves when we had to walk back over to Barnes, but my stomach was not feeling good. I left the hospital around 5:15 and left my bride behind. Surprisingly, traffic was minimal and I was able to make it back to Creve Coeur in record time! I even had time to make it to Walgreen's and treat myself with some Charmin toilet paper! Imagine your life using toilet paper from work, 24/7 for 3 weeks straight. For those of you who work in the QPS, you know what I mean! And yes....I did just go there!

Well, my wife just got off the elevator and sat down next to me. She is going to tell me about how she learned how to wrap Hayden's omphalocele tonight (being the "competent" parents we are and all!) and I am going to impress her with me showing her how I "cleaned house" which basically meant organizing the room that we are living out of!

Information for Fox 2's newscast/report on Hayden and his birth. It will be on the 9 o'clock newscast, Thursday February 7th,  but we don't know exactly at what point. There are several ways that it can be viewed if you are not in the metro St. Louis area. You can access their live streaming site by clicking on this link http://fox2now.com/on-air/live-streaming/ or if you have an iPad/iPhone, Android and/or Blackberry and would like to watch on any of those, they have an app that can be downloaded at this link http://fox2now.com/2012/08/24/download-fox-2s-news-weather-apps/.

If you happen to miss the live feed, you can also go to the first link and find archived stories. I will also post the video in a future post.


We have a busy four days ahead of us, but we are looking forward to seeing family and friends again. Kelsea's mom is making it back down tomorrow afternoon and staying for the weekend. My sister and our friend Chris is flying in late Friday night, and my parents will be back down for a couple of days as well. It is tough to share time with him, but we manage! We have gotten pretty selfish!

Feeds

We have reached our goal of 21ml/hr. we are asking for a quick prayer because at 11 o'clock, we are going to try our first bottle feed. If it works and he takes some, this is a HUGE step towards bringing him home! The doctors are so encouraged and Kelsea and I are as well. God is so good. I don't know if its mercy or grace He is showing us, but it is good!

Moving Mountains

Kelsea has done it more than I, but every now and then I like to go back and read some of my posts from the past 4.5 months. Well, this morning, once I arrived at the NICU (The doctors all make fun of me because they wonder if I ever sleep) and was briefed from the night before, one immediately came to my mind.

Only a Mountain was a post from September 20, 2012. It was my 2nd post, but I believe in it. It was written half way through the middle of one of the toughest weeks I have had to deal with. We had so much going on in our lives in five short days. I didn't know how we were ever going to make it. We had just found out about Hayden's Omphalocele, we had a trip to Springfield for our first specialist visit, and we had a 24 hour trip to a funeral in Minnesota and back after Kelsea's cousin had been murdered a week before.

I was talking about only telling some people the "exciting" part of our ultrasound from Monday, the 17th, which at the time, I meant that we were having a boy. Looking back though, the exciting part was the whole story. It was God's whole story, omphalocele and all! It is great that we were having a boy, but looking back and rereading some of the e-mails and cards we have received, reading the stories of others testimonies and how our testimony has changed their outlook or renewed and strengthened their faith, I now realize that this is His story! It was never about us or Hayden, it was how we fit into just a tiny part of God's greater plan.

All of the things that Kelsea and I have thought were mountains are disappearing faster than we can blink an eye. As I sit here this morning, watching this beautiful boy and typing (literally) I can't help but smile as I think how far we have come and what he has accomplished. I know there are many more hurdles ahead of us, but he is winning the race and we are not looking back.

As of this morning, Hayden has reached his birth weight of 2770g (6lbs 2oz). He is 13.5 hours from reaching his feeding goal of 20 ml/hr. Once he reaches this, he will then start bolus feeding. This means it won't be continuous, it will be larger quantities in smaller time periods. This will help give him more sleep/wake patterns and will hopefully help him nurse. Speaking of nursing, the past few days, he has been nursing on Kelsea. Not a lot, but a couple of times. However, since he has been on a constant feed, he doesn't really have a "need" or hunger. Hopefully that will all change. He also dirtied his drawers in every single diaper change last night! I told the nurse sorry, but then cheered Hayden and gave him a high five.

This is only a mountain
You don't have to find your way around it
Tell it to move, it'll move
Tell it to fall, it'll fall
This is only a moment
You don't have to let your fear control it
Tell it to move, it'll move
Tell it to fall, it'll fall

Snow Worries....It's in God's Hands

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First off, we want everybody to know that Hayden will make his big debut this Thursday, February 7th, at 9 pm on Fox 2 in St. Louis. We're not sure exactly what part of the newscast we will appear, but it will be sometime. I also have no idea how I will sound, but if they decide to keep me in the video, I know I will at least look funny in my clothes! If you can't find it on TV, they do have an iPhone/iPad App that carries live streaming of their newscasts. They might also have it on their website.


So yesterday was a rough afternoon. We went from tears of joy around 10 a.m. to frustration and worries around 2 p.m.

I slept in yesterday morning and didn't come in until 10! That is a first I think, but it was needed. That's ok though because I stayed late Friday night and Hayden and I listened to Matt Longo on the radio (Tuned In app) on the iPhone. It wasn't a win, but Hayden enjoyed listening to the game! He raised his right arm as if cheering a couple of times....when Matt would stop talking!

When we came in yesterday, Ann (our nurse for the day) was talking about his feedings and how he had the doctors had increased his feedings 1ml every 8 hours. We were up to 15ml/hr and were within about 24 hours of reaching his goal for his daily feedings. Ann told us that when we reach that, if Hayden can tolerate the feedings, they would probably take out his PICC line. This is the line that runs from a vein in his head close to his heart. It is used to give supplemental nutrients and is more of a permanent line since it can be so hard to insert an iv into his small veins. When she said this, I was overcome. It is so wonderful to think of my boy having one less line running to him. It is more of a mental thing, but I am so cautious when I pick him up because he has so many lines running to him. Four of them are just stuck on which monitor his heart, breathing, and oxygen saturation, but his NG tube and his PICC line are a little more permanent and I'm always so afraid of pulling them and hurting him when I pick him up. Kelsea is an old pro by now. As for me....I'm still learning to deal with it. The tears were great though. I never mind tears of joy!

Shortly after this, I was holding him and the March of Dimes came in for our first family photo session! We signed up for this, something they offer to NICU families every so often I believe. The photographers loved Hayden, as everybody does!

After 12:00, Hayden's O2 saturation levels started dropping. He couldn't keep them above 90% (I just assumed he inherited dad's sleep apnea!) and the nurse was not liking that. Neither was mom! we tried a couple of different things and gave him some Tylenol, but nothing seemed to work. He finally calmed down for a few minutes, so Kelsea and I snuck out to get some well-needed snacks! We went to the Ronald McDonald room for soda, combos, and a Kit-Kat! Kelsea headed back to go pump, and on my way back, I was talking to a maintenance worker in the hallway. She texted me a few minutes later and said I probably needed to get back because his saturation was down again, and his heart rate and respiration had increased and the doctors were bedside. Of course, this is never what you wanted to hear. We were a little anxious and overwhelmed I think because all three things were doing stuff they weren't supposed to. Doctors decided to give him a little help with breathing and give him some oxygen. Ann kept telling us not to worry, that this isn't a setback, but of course, when you have to add the nose prongs to give him a little help breathing, parent's don't like that!

Well, it was basically just room air, but it helped him. His levels immediately went back to normal and calmed down. His temperature stayed low and he was good to go.

After a good visit from Aunt Bonnie and Uncle Bruce, we met them for dinner at Fortel's Pizza Den in Creve Coeur....one of us soccer coaches favorites! We always consume mass quantities of Shelly's Deluxe when we're in town for Eric's tournament in the fall!

Kelsea and I headed back to the hospital around 7:00 and Hayden and I caught the end of the Blue Devil basketball game again (not a good one!). Well, it was more like I did because he was sound asleep and his vitals were perfect. We stayed until about 9:30 and he only opened his eyes once. It was such a good night!

As we left, it started flurrying. By the time we got home, got done with out chores (wiping down dining tables at night) and headed up for bed, it was coming down pretty good. The weather channel said we should only have about 1/2". However, when I left this morning...they were way off!! Ended up with probably close to 3" in Creve Coeur, less in the city. However, 64 was horrible coming in! Good thing it was early Sunday morning and there was zero traffic!












When I got here, Christina (the night nurse) filled me in on Hayden. His weigh jumped last night. He was up to 2725g (just a little over 6 pounds..first time he has been back over 6 pounds since the first few days when he dropped) and we are only 45 grams shy of his birthweight! Christina also said he did perfect overnight, had two small poops, and vitals were perfect. Plus, his oxygen prongs were not even close to his nose, so she told the doctor on rounds this morning that she doesn't think he needs it. Well...the end result is this we pulled the plug....I mean prongs and his heart rate, respiration are still fine and his O2 saturation is still at 97-98%! Great start to the morning! Surgery came in and changed his dressing on his "O." It is amazing how much it has changed. I purposely haven't put pictures on here because of it, but am going to today. However, I will put some space between the end so you have to scroll down to see it...if you want! It's not bad looking...just something different!

Again, all three of us thank everybody for your thoughts and prayers. Hayden is truly a miracle from God and it is truly amazing what he has done for us, our family and friends, and people we have never met. This has been a long journey, but we haven't questioned it. For whatever reasons, God chose Hayden for Kelsea and I and we couldn't be happier that His plan is so much better than we could ever fathom.

Baby it's Cold Outside

Holy cow! 6 degrees when I left Creve Coeur this morning. Thank goodness I get on I-64 within about 2 minutes of leaving the RMH because it would've taken a half hour to warm up the truck driving 30 mph!  I have always loved driving, especially in the morning, with a cup of coffee as my co-passenger! Even when I lived in Florida, the 30 minute drive every morning from Venice to Brookside Middle School was kind of pleasant. Now, I wouldn't like driving (more like sitting) in heavy traffic every morning, but if the vehicle is moving, I like driving! The mornings here in St. Louis are even better. When I leave the house about 5:30, not only do I have my good friend "Joe" with me, but I am going to see my son! It is like it's my birthday every morning! Every mile marker that flies by me, every car I pass (I let some pass me just so I'm not the fastest one out there...), the anticipation builds. When we were little, anytime my parents would take us to St. Louis, we would always have a competition to see who could spot the St. Louis Arch first. Well, on my morning drives, the Arch has turned in to the Barnes-Jewish complex and blue Children's Hospital sign! Every time I come around the corner and out from under the overpass, it pops up on my left hand side like a spotlight, leading me "home!"


This morning, it was pure joy again! Hayden pooped 4 times yesterday and is still tolerating his feeds! His TPN (total parenteral nutrition) was removed yesterday afternoon because he is getting enough nutrients from Kelsea (via NG tube right now). He is now just getting sugar water I believe in addition to his breast milk. Surgery came by about 20 minutes ago and they are going to increase his feeds more rapidly starting today. Instead of increasing every 12 hours, they are now going to go up 1ml every 8 hours! That is awesome news because it means he is getting closer to his goal of daily feeds. Right now, according to his weight, that is about 21 ml/hr. However, as his weight increases, he will need more calories, so that could change in the next couple of days. Speaking of his weight, he was up another 20 grams at last night's "weigh-in!" He now weighs a little over 2690 grams, which translates into about 5 lbs and 15 oz! We are inching closer and closer to that birth weight!

Ok, more about his feeding. Once he hits his goal of ml/hr, they will then do what they call Bolus feeding and start working their way backwards, kind of. It is intermittent feeding (on a side note, I love hearing about 15 surgeons and neonatologists talk outside our room after the surgeons did their rounds, filling in the rest of the team.... "Mr. Hoskins is doing great. He is tolerating his feeds. He is awesome. Yadda, yadda, yadda!") that more resembles actual eating at certain time periods. Once they reach the 21+ml/hr, they will then start chunking it into certain feeding times. The goal then is for him to become hungrier in between feeds and hopefully start breast feeding more and/or taking some by bottle.

It is amazing and evident that prayers have been working. We can't even begin to thank you enough for everything that everyone has done for us. It is humbling. It is amazing. It is reaffirming. It is the power of faith and God!

I thought about this last night while reading an e-mail from my mom. If anybody knows my mom...and me....you know that neither of us like to sit still. Her more so than me! We are both early risers (which by the way, a nurse just walked by and asked me when I sleep!), and even though she can accomplish more in a 24 hour time period, neither of us can sit still long. I attribute it to my self-diagnosed ADD! In my classroom, I think I might walk 5+ miles a day because I am continuously walking around the room. Anyways.... she mentioned in her e-mail about how she was praising God because he has allowed her to be calm and patient when she is in the NICU. This was one concern I had talked about with Kelsea a couple of months ago because I was afraid that the days would drag on and on and on while sitting here. I thought I would go stir crazy and that I wouldn't be able to sit here hours on end. However, I also have to thank God because just the opposite has happened. Believe it or not, the days actually fly by and I tell Kelsea many days that I feel like I didn't have enough time to get everything accomplished. I can sit in this chair, that I complained about to many, many people beforehand because I thought it would be horrible, for 8 hours straight, get up and go to the bathroom, and then do it again. I stare at Hayden without blinking an eye. I can stand over his crib and let him squeeze my finger or hold his pacifier without getting tired. I can't hold him that long because, well...for those of you that know me....you take my body heat, plus that same quality that he inherited from his father (the nurses call him their "little hotbox"!) and those two don't mix well after about 15 minutes!!!

With all of these things that are happening before us, it is hard not to praise God's mercy and his plan for everything that He has done and put in place for us.

I am waiting on the Neonatology rounds and then Kelsea has her follow-up appointment at 8:30. It's a good thing the whole "compound" down here is connected via covered walkways or I might have had to hold him right before we left for the appointment because....baby, it's cold outside!






As always, if you would like to be updated by an e-mail whenever I add a new post, add your e-mail address in the form below and then click subscribe. You will get an e-mail asking for verification. After you verify your e-mail address, you will get an e-mail the following morning between 9 and 11 a.m. (Central I believe) that shows you I have added a new post.

HOWEVER....TO GET THE FULL EFFECT...INCLUDING PICTURES AND MUSIC, YOU WILL HAVE TO ACTUALLY GO TO THE BLOG WEBSITE. YOU CAN READ THE BLOG ON THE E-MAIL, BUT IT IS BETTER IF YOU OPEN THE LINK AND GO TO THE WEBSITE TO READ!

 

 

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