A Day for Kelsea

Happy Mother's Day to all of the mother's out there who are reading this. However, the biggest wish goes out to Kelsea. She has become the most amazing mother I know and I am so happy that God chose her to be Hayden's mom.

What Kelsea has been through and how she has responded over the past 16 months has truly been amazing and a blessing. To watch her hold, cuddle, interact, feed, and comfort our son is such an amazing thing. I know that giving birth to Hayden was a pretty spectacular moment in her life, but there is another one that sticks out that will forever be etched in my mind. I wrote a post about it Ready or Not on 2/15/13. Watching Kelsea spring to action that night to comfort Hayden and support him was such an amazing thing. I see how much she means to him now as he is completely infatuated with her. When I hold him, if she walks by, he will follow her with his eyes until he can't see then he jerks his head around to watch her walk out of the room.

It is great to see the progress he is making. He is deliberately grabbing things, holding on to (and not wanting to let go!!!) many things, responding, smiling, rolling from side to side (still can't roll over because of his "O"), and doing great with his "tummy time" mat. Kelsea has been great helping him with his modified tummy time. He is getting so strong.

Growth Chart App on Phone

After his hernia surgery a month ago and subsequent hospital stay a few days later, Hayden was battling croup as well as his normal breathing and feeding issues. We think we finally beat the croup, but the feeding issues hung around. However, they were different. He was hungry, but anytime he tried to take his bottle, he would suck 2-3 times and then violently shake his head and start crying. We're pretty certain this is related to his two front lower teeth starting to come in. It has impacted his feeds and he doesn't really have a normal amount he takes in a day. Sometimes he will eat 1 oz and other times he has taken 5 oz. Most of the time it is closer to 3 oz. Everybody keeps telling us I shouldn't be concerned about his weight because as long as he is growing and he is having wet diapers and bowel movements, then he is healthy. However, I don't like seeing that his weight is so low according to the charts. I don't like it, but I have accepted it and Kelsea and I are both so thrilled with every oz he gains. As of yesterday, he was 10.47 pounds!

We head back to St. Louis on June 7th for a follow-up appt. with Dr. Warner. It was originally supposed to be the following Friday, but he is going to be out of town. They wanted to move it to a later date, but was able to talk them in to getting us there a week earlier. We are going to possibly discuss and set-up a date for Hayden's surgery so I didn't want to push it back further. We are so excited for the possibility of having it this summer, but also scared knowing that we might have to start over on some things and this could also cause a new and different set of problems.

The reason Dr. Warner wants to move it up (I might have posted this several weeks ago after our last visit) is because his abdomen is getting so big and things are moving back inside. His "O" has changed so much since he was born. My goal is to sometime soon have a post dedicated to his "O" and how it has changed over the past 4 months.

Hayden has really been doing great. We had a rough go at it the first month and a half we were home, but since then, our biggest concerns have been related more to normal baby stuff and first time parent things!

We continue to thank you for your prayers and generous support and love that our friends, family, and even strangers have shown us. I was finally able to find the PDF version of the Herald Whig story. If you weren't able to see it, you can read it by following this link: Hayden's Herald Whig Story.

 

From Church last weekend



From Church last weekend



Quick Update

Even though I knew I was way overdue for an update (I think about it every night, but other things get in the way!), I didn't realize it had been over two weeks. I will try this weekend to get a detailed update with some pictures, however tonight, it is just a quick run through.

Hayden finally seemed to get past his croup and started eating better and gaining weight. We have surpassed the 10# mark and tonight were at 10 lbs, 4 oz!

His O continues to amaze me. We are just about a half dollar away from being completely covered in skin and it continues to change shape daily. His abdomen is getting absolutely huge! He really looks kind of funny with a really wide abdomen now but still a small chest. He has continued to grow in to his happy, care free personality, making mom and dad laugh and smile non stop because that is all he seems to do. Well, until his teeth start bothering him. Yes, he is starting to have a tooth push through.

I get caught up trying to research the difficulties children and babies with an omphalocele have such as feeding and breathing issues, and trouble gaining weight, as well as options for surgery and future outlooks, that I forget that we have our own little "normal" baby growing leaps and bounds every day. I have to remind myself to stop thinking about his O so much and concentrate on the fact that he is a happy, healthy, growing little boy!

Kelsea and I seem to be doing well with alternating jobs on different days and nights. She has helped me out when I have been tired and I would like to think I have done the same for her. We still have our struggles, and our disagreements over stupid things (I know right, who would ever imagine doing that) but we continue to thank God daily for what He has provided us. Even though I (we) am a little scared still about what the future may hold (on many fronts), I/we know that God didn't bring us this far just to kick us out of the car and tell us to find our own way home. He continues to show us the path, day after day.

Pictures and more to come this weekend....

Good Things to Come

Another week, another milestone! So much has happened in the past week, I am not even sure where to start. Let me try to go in order starting with last week. It seemed to sneak up on us, but by Wednesday of last week, Hayden sounded horrible. He was coughing, congested, struggling to feed, and throwing up more frequent than he had previously. After reaching an "all-time" high weight of 4,400g (9lbs, 11oz) on Tuesday, we started a steady drop the rest of the week. With Hayden struggling with his cough, congestion, and vomiting, he didn't stand a chance. He dropped a 1/2 pound (which is huge considering how difficult it is for him to put weight on), but not atypical of a sick baby....it was just disheartening to see him do so well with weight gain, only to have a big setback like that.

On top of it, Kelsea came down with something herself at the beginning of the week. She was running a fever and vomiting herself, so she was quarantined to the basement! Hayden was struggling, but we couldn't risk him getting even sicker. My parents were gracious enough (it really didn't take that much convincing!!!) to come over during the days and watch Hayden while Kelsea rested downstairs. Hayden had his "1-month" out of the NICU check up with Dr. Warner on Friday which was actually 2 months out due to our frequent visits to Children's. This also means that Hayden turned 3 months old last Thursday as well! Well, late Thursday night, Kelsea's fever returned and we had to scramble to make alternate plans for Friday. Again, my parents were there to help us out. Dad drove down and I was able to ride with Hayden in the back. Again, it didn't take much twisting of dad's arm to get him to go down! Luckily, I was able to be in the back because Hayden decided he wanted to throw up half way down to St. Louis!

His dr. visit went well.....if you take out the vomit he had as the nurse came in to talk to us. Of course, it had blood in it again, but I'm certain this was due to him coughing so much last week. I even didn't feed him before we went back to the room (even though he was getting hungry) because I didn't want him to puke while the doctors were "messing" with him. He showed me...as usual!

Dr. Warner and Dr. Fialkowski were great, as usual. He said things are looking and going better than he could have ever expected. He again talked about how great Hayden's "O" looks and was talking about how he was able to get it all temporarily pushed back into his abdomen during his hernia surgery. Sidenote: I had mentioned before that he was able to push everything back in, but I forgot to mention that everything came back out due to the hole in his abdominal wall.....things won't stay inside until they have the closure surgery and are able to cover his organs with muscle or mesh.

As he was talking about his organs, Hayden was crying because he was hungry. Dr. Warner was still amazed at how well it looked and even seemed excited that we were progressing so quickly. He said he didn't want to push on things this time because he was already upset, but before he finished his sentence, he was doing it anyways! ABSOLUTELY CRAZY AND AMAZING to see everything from the outside be pushed back in to the inside. I was able to see my son with a flat stomach and he wasn't in pain. Yes, he was crying and fussing, but he was doing this before because he was hungry and had thrown up. His demeanor did not change one bit when they started literally shoving everything back inside! It was such a great and emotional thing to see. 

We set up our next appointment for June 14th and at this appointment, we will set up the date for closure surgery!!! We are looking at possibly July or August. Hopefully he will only need one surgery, but they never really know exactly what the surgery will entail or what exact method they will use for closure until they get in there. More to come on that as we get closer to the date.

All weekend we pumped the boy full of medicine and did breathing treatments to battle Croup. Saturday, Hayden was able to get his first bath in two weeks (due to his surgery) and he was a little timid at first, but calmed down and enjoyed it. Yesterday, we finally changed directions after having a long downhill slide the previous 5 days. His weight was up yesterday (and today) and he was sounding, breathing, and eating much better.

Last night, he held on to a rattle for the first time. I know it is something little, but it was such a great thing to see! Today, Kelsea said he continued to do it and was even putting stuff in to his mouth! I know, I know.... we will eventually be telling him to stop putting things in his mouth...but for now....he can do it!

Good things are happening around us. We feel like we may have turned a corner (even though I know there will be more "mountains" to come) and we see some good things ahead. Kelsea and I (both Special Education teachers) were on the other side of the IEP table today. Ok, not an IEP, but an IFP. He has been evaluated by Child and Family Services to get continued therapy services due to his needs for physical supports. After meeting with a physical therapist and developmental therapist, we sat down with the two of them and a case manager and developed an IFP...individualized family plan that outlines the path that will be taken to keep him on track to reaching milestones/goals!

Despite our rough week last week, good things (as I have mentioned) continue to happen to us. I have a feeling there is some more in the near future, but only time will tell. Last week, Kelsea and I were completely floored and humbled by what students, staff, and families at QHS and QJHS did for Hayden. Two former students, Julian and Jordan, spearheaded a fundraising campaign to help offset medical expenses. When Jordan contacted me in January asking for permission to do something like this, I had no clue what the two of them would be up to. Two crazy, fun, creative sophomores wanting to "give back" to me was a little scary! As Jordan told me, they are "only a couple of kids" but what they did was far beyond their years. It was a remarkable showing of what really is happening in the Quincy Public Schools. There were literally thousands of students, families, and staff who put their wants and needs behind ours and for that, we are truly humbled, grateful, and amazed.

Short Nights/Long Days

Last week was just an emotional week.

After finding nothing wrong last Monday night/Tuesday morning, the doctors sent us home. Surgery felt it just might have been him reacting to the anesthesia. Everybody reacts differently. That night was the worst of my life. After I looked back on it, Kelsea and I were truly scared and worried about Hayden. We were completely helpless.

I stayed home from school on Wednesday to help Kelsea take care of Hayden and make sure he was rally better. Well, Hayden continued vomiting Wednesday with a lil blood in it Wed evening. After 5 hours in ER in Quincy, Kelsea and Hayden were transported to Children's ER by ambulance. I followed and arrived about 3:15 am despite the rain and fog.

I really don't like leaving for St. Louis at 12:48 am, but the adrenaline kicks in and the drive is no big deal. I think it is harder for Tucker when he sees me walking out the door with bags again. This dog is going to be messed up!

He stopped vomiting but was having trouble breathing. When I got to the ER at Children's, Kelsea was on the bed holding Hayden and he had a mask on to deliver oxygen. It was a long night again with zero sleep and around 8 in the morning he was transferred to a room. He did start feeding and was not having issues.

We were put on the "pulmonary/cardiac" floor due to his oxygen desats and breathing difficulties. His dr thinks it could either be some GI virus or still reacting to anesthesia from surgery. They can't find anything big besides his "O".

Hayden's family dr was gracious enough to get us a room at the Parkway hotel so we could get some rest. We are so lucky that God led us to Columbus Road Baptist Church. We don't know what we would do without their support. All of the support from people all over continues to lift us up when we are struggling. Kelsea went to get some sleep around 1pm. I finally got some sleep around 8 Thursday night and slept for 10 hours. Twice as long as what I normally do!

His doctor, Dr Ferkol, was amazing....as they all have been, and funny. I was back in Hayden's room for rounds and he said we could stay for observations, but, the longer we stay, the greater chances we have of getting a roommate who could make Hayden sick as well. So, i called Kelsea and said lets get out if here. before we left, the dietitians talked to us about Hayden's weight gain. He is putting in weight, but not a ton. Granted, the only times they have weighed him since we left the NICU were times he had been vomiting all night, but it still concerned us.

We got home again Friday afternoon and had a good couple of days. Hayden ate like a champ Saturday to make up for lost time. He did good until he started running a fever today and struggling to eat. A local dr thinks his choking and vomiting problems could be related to nasal drip, so we are working on that tonight! Good news is his weight is up to 4.3kg (9 lbs 7.6 oz) which is his highest! Bad news is, Kelsea is now sick and was vomiting herself which is why I'm up at 4:30 in the morning writing! Lets pray it doesn't make the rounds at the Hoskins Household!

We can look back at our lives the past few months and look to our future and easily get discouraged. Self-pity is something that can easily attack our mind and spirit. However, that is Satan trying to drive us away from God and question why he would make us suffer. Tonight, Kelsea and I continued watching the documentary on St. Louis Children's Hospital. I urge everybody to check out
http://www.childrensforhope.com/. It is a very moving series and makes you realize just how great your life is. As always, it left both of us in tears. Partly because we have a connection to the doctors, nurses, and families we see, partly because the rooms and floors they're on are the same places Hayden has been, partly because we feel sorrow for what some of these families are dealing with, and partly because we feel stupid for ever thinking how bad "we" have it.

It has truly made us appreciate what God has given us and what He has done for our family.

Here's to a good week and no trips to St. Louis before Hayden's appointment Friday afternoon with Dr. Warner!

24 Hours

What exactly is 24 hours? Is it a smaller part of something larger? Is it important? Could we live without 24 hours or is it the whole world. Well, as I approach 24 hours of being awake, my answer is yes! Simply yes.

The coffee pot started that beautiful dripping noise at 2 a.m. Monday morning accompanied by heavy wind, rain, and thunder, and lightning. Kelsea got the boy fed, and I slowly came to life. We were on the road by 3:50 and checked in to the same day surgery center at Children's in St. Louis around 6:30. At the time, we didn't know if Hayden would be kept overnight, but we were shortly informed that he would be kept on a "23 Hour" admittance for observation.

Hayden's surgery went great. Dr. Warner came out to talk to Kelsea and I afterwards and told us that he had two large hernias and they were both fixed. He was also very impressed with his Omphalocele progression. Originally, it was estimated that his closure surgery would occur around one year of age. Dr. Warner stated today that it was looking great, had greatly reduced in size, and even though it was still a large opening, he thought Hayden would be ready for his closure in 3-4 months. While Hayden was under anesthesia, Dr. Warner was able to reduce all of his organs in the Omphalocele back into his abdominal cavity. That was absolutely amazing to hear and made my day. Now, while he is awake, there is still not enough room and Hayden would have complications, but it was great to hear he is progressing well.
However, it went downhill from there. Hayden was inconsolable in recovery. It took about 90 minutes for him to calm down enough to go to his room on the 10th floor. This is where Kelsea and I's patience started to wear thin with each other. My patience was actually being tested by several employees of Children's Hospital who were acting like Kelsea and I had been through this a hundred times and as if this was their first "kids" rodeo. Up in his room, Hayden was never quite himself. I attributed it to the anesthesia and need to be intubated, which caused a ton of gas in his intestines. However, we are not really sure, but Hayden was CRANKY tonight!

He ended up having a horrible night and throwing up for about an hour straight. Surgery team came, and ordered some xrays. Food was withheld, and here we are at 5:34 a.m. waiting for the full surgical team to make their rounds. Kelsea slept for a few hours and then I slept for a few hours. Something else seems to be going on. We have withheld food for the rest of the night until more heads can come together. They allowed me to give him 30 ml after I made everybody feel sorry for him! Everybody has been great. Dr. K came and visited him as well. It has just been a long night and I am afraid they are going to end up telling us (again) they can't find anything wrong and it is just one of those things. I know the doctors and nurses get frustrated as well when there are problems that seem to arise from nothing. I also know that is the issue when you are dealing with something that is somewhat rare. However, its difficult to take in that explanation! We will see what the next hour holds as the doctors start to do their rounds and hopefully, in the next 12 hours, Hayden will get more than the 60 minutes of sleep (not very good sleep either) that he got in the past 18 hours.

Early Morning Show

What a show of force we will see this morning while heading to St. Louis. Crazy lightning all over the place this morning!

Bags are packed, coffee mug filled up, and the boy is about to be woken for a 3:45 departure!

We have to check-in by 7:15 and hopefully surgery will be around 9. Will post am update later, but I know things will go perfectly!

Choosing to go to Holland

When you think about all of the choices you have made throughout your life, it makes you think about how certain episodes could have had different outcomes if you had made a different choice. I am not one to dwell on choices, but as we approach Monday, Kelsea and I have talked about a recent choice we have made.  When you put God at the center of your life, when you let Him into your life, and take yourself out of the equation, you make all of the right choices. When you are living for Him, you can't make a wrong decision.

Kelsea and I, as every single human being does, still struggle with this. As humans, we are selfish and we want what makes us happy. Sure, we can do many things that are for the good of others and make others happy, but most choices are made because of how they will impact yourself.

I came across a poem a "friend" had posted on the "MOO" Facebook Page (Mothers of Omphaloceles....I'm thinking about petitioning to get it changed it to Parents of Omphaloceles.......or POO!!!)) that Kelsea and I belong to. This was a poem that I think either Darlos Mummert or Mary Jensen shared with one of my Special Education Undergrad classes. Many of you have probably seen it before, but recently, it has definitely hit close to home. I think it is titled "Welcome to Holland."

 

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.

“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

by Emily Perl Kingsley

This is a poem that she wrote in 1987 (I think) to explain what it is like to have a child with a disability. Now, I am not sure if having an Omphalocele is considered having a disability, and we could care less, but this poem explains how I feel sometimes. There are many times when we have had to make the choice to be upset because we didn't get to go to Italy or be happy because we are in Holland. I have even written before about how I prayed for Kelsea to experience "normal" pregnant things last fall instead of worrying about Hayden and how he was growing.

At times, I do wish that Hayden could lay on my chest and fall asleep. You always see pictures in magazines and on the Internet of father's sleeping with their son/daughter on their chest. Well, with Hayden's Omphalocele, I can't do that. Kelsea, being the expert Special Education teacher that she is, has been able to make modifications and it kind of works for her to burp him on her shoulder. However, at the same time, every Monday night, when we watch the new episode from the documentary Children's For Hope, which is a 6-part documentary that takes you behind the scenes at Children's Hospital St. Louis, we are so grateful that God has blessed us with this beautiful baby boy. When you see the strength that other families have in situations that make ours look like a walk in the park, it makes you grateful. Putting our trust in God has completely taken the "choice" out of our hands and we have completely forgotten about "Italy."

I still do worry about the future and everything that Hayden will possibly endure, but he is my son, and father's worry about and want the best for their sons! 
Last week at church, a powerful video was shown that made me think about a choice I made a couple of years ago. If you have ever watched Duck Dynasty, I am sure, like me, you had a hard time turning the channel. This is a show that is VERY low on "exciting" things that happen list, but it is hard to turn off! Phil Robertson, the patriarch of the family on this show, was talking about what his life was like when he was 28 years old and the choice he made to turn his life over to God.

Watching this video puts in to perspective what making the choice to follow Jesus can do. I am so thankful that I made this choice 2.5 years ago. Again, I am far from perfect, but I am happy to know that I am not necessarily choosing my own path, but that God is playing a part which road I travel.

The road He has laid out for Kelsea, Hayden, and I on Monday will, once again, take us back to Children's in St. Louis. Hayden will have surgery at 9 a.m. Monday morning to hopefully fix his inguinal hernias. After two trips to the ER because we couldn't reduce his hernia over the past 6 weeks, Kelsea and I felt it was best to have this corrected now instead of waiting until his closure surgery. As a new parent, I am learning that worrying is something that I never really knew before Hayden came in to the picture. The procedure on Monday is a pretty simple one and one of the most common performed in babies. However, as with any surgery, there are possible complications and this does make me think about the choice that was made to move forward with this. I am wondering about what it would be like if he didn't have the surgery on Monday and if we made the right decision. Luckily, we ALL have God on our side to take that thought away and remind us that this was not something I chose to have done......it is His plan and His choice.