Flashbulb Memory

The day JFK was assassinated. The day we landed on the moon. The 9/11 terrorist attacks. The Columbine School shootings.  I am certain that these are dates that you can probably vividly recall. You probably remember the weather, maybe what day of the week it was, and possibly even what you were wearing and definitely where you were when you heard the news. It is almost as if you had a camera and took nonstop pictures (with the flash on!) at the time of this event.  Two of those I was alive for and remember more details than I ever thought I possibly could.

365 days ago, I think I had two cameras taking non stop pictures. I can tell you what the weather was like, what I was wearing, and pretty much what happened for six days straight. When Kelsea and I first found out about Hayden's Omphalocele, we were devastated. Omphalo What tells the story of our first 48 hours. Kelsea's parents, being OB-GYNs had heard of this. My parents, never. We talked to mom first, because they were waiting to find out about the sex. I don't remember exactly what we told her, but we withheld a lot of information. I knew it would come to light, but we weren't ready yet because we didn't fully understand ourselves. The next thing, I am not so proud of. After Kelsea and I talked for awhile in the parking lot of QMG, I believe we were the last two cars there, we were in a better place and I headed down to Hannibal for the Varsity soccer game. On the way down, the weather changed, and nasty, dark clouds filled the skies. It let loose and the first half was played in a monsoon. I never should have left Kelsea that night. She called at halftime and I headed home. We comforted each other for awhile and talked to God and tried to give Him our worries. It didn't happen immediately, but we tried.

After she went to bed, I started my research. I have always said I love learning. There is a reason why I graduated with my undergrad in 5 years and with over 150 credit hours. There is a reason why I have two master's degrees and am not so certain that I am done. I couldn't help myself. Dr. Kagumba told us not to, but I also have always kind of done things my way! I looked at pictures and became even more scared. That week was the longest I have ever faced. Tuesday came and I went through the motions at school. Matt took the Freshman to Canton that night and Kelsea and I prepared to start coming up with questions to ask on our visit to the MFM Specialist on Wednesday. Wednesday morning took us over to Springfield, IL where we met with an MFM that said she had never seen an omphalocele as large as Hayden's and that after he was born, he might be transferred to Chicago or St. Louis. Well, on the way home, we made the phone call to get the request to see a specialist in St. Louis. Thursday took us back to work, then in a car for almost 6 hours to Minnesota for a funeral for one of  Kelsea's cousins, who was murdered in Wyoming the previous weekend.  We got back late Friday evening and I moved stuff in the basement so the carpet could be installed the next morning. I also has to get ready to head to Lincoln at 6 in the morning for a tournament in Lincoln, IL. After our two doctor visits and 1100 miles in 4 days, I realized, and even wrote about it in LIfe is a Highway, that God was preparing us for the future. He tested our patience, our love, and our resiliency those few days, and really showed us that He was in control and that things would be done His way. We thought is was the worst week we had ever experienced....but we were way wrong!

The next few months now seem like we were on a whirlwind trip. The days were continued with educating ourselves, trips to St. Louis, reaching out to strangers, phone calls to insurance, house preparation, mental preparation, and oh yeah, work!

As Hayden's due date drew closer, our reliance, faith, and trust in God grew stronger as did our commitment to providing the best opportunities for our son. Kelsea left for St. Louis (Best Laid Plans) with my mom, after an amazing night of prayer at Columbus Road. We could actually feel God take some of our worries off of our shoulders and put them directly on to the shoulders of those who reached out to us. Again, God showed us that we can plan and plan, and wish and want all we want, but it is still His show and we are just living in His world!

Hayden came early on January 18, 2013 and Fox 2 and Mandy Murphey were there in the delivery room to document the entire experience. However, this wasn't a complete surprise because babies with Omphaloceles tend to do this. Even though we were there for four weeks and I can remember just about every single day and every single nurse we had, the time still flew by in the NICU. February 17, 2013 and we were headed HOME!

The next few weeks were filled with ups and downs and ambulance rides and emergency room visits and short-notice surgeries, however, Hayden was progressing and growing and his Omphalocele was getting smaller!

Surgery came on June 24th, and as we reminisced with Kelsea's mom and step-dad over the weekend, this is what God had been preparing us for. I lived some things a parent never wants to experience those two weeks after his surgery. There were definitely many more lows than there were highs over the course of two weeks. However, Kelsea and I couldn't be happier that God led us to Barnes-Jewish, St. Louis Children's, and the Fetal Care Center of St. Louis. The doctors there twice saved Hayden's life and God helped guide their decision making process to ensure Hayden recovered as quickly as he could. Thinking back to some of those nights almost three months ago, I still get choked up. It brings tears to my eyes thinking about what those doctors did for us and Hayden and the fact that I feel like I am forever in debt and grateful to them. I hope some day he has the chance to cross paths with some of them. again. 

Our weight is a little over 14 pounds and even though he is not in the heavy-weight category, he is holding his own and reaching milestones left and right! Hayden is sitting up, without support, for small periods of time. His first tooth finally broke through the skin last week, and even though he isn't crawling yet, he is pushing himself up on his arms and working on pushing his knees and legs under himself. He has also become mobile...or at least when we put him in his walker! He loves the kitchen floor and can really get that thing moving across the tile when he is chasing after Tucker! He is not quite strong enough to make the trek over the carpet!

When somebody sees him for the first time, they are always amazed at how well he is doing. They always say it is due to the MANY prayers being said. I couldn't agree more and tell them that they are being heard and answered on a daily basis. We continue to feel God's loving touch on our lives and are reminded daily that he is in control. We have been so blessed. Even though we continue to do things on a daily basis that separates us from God, He continually forgives us because that is what He does!

Kathy Asbury and Beth Griffin have planned a benefit for Hayden that is quickly approaching. I have tried to stay out of it and have tried to not bring it up, but I have to mention just how wonderful people are and how God has been working in them. When they first asked us about it the day of Hayden's surgery, it was going to be a softball tournament. Well, due to some amazing people (MANY to be exact), the benefit took on a life of its own and people were jumping out of the woodwork to help plan the benefit and wrangle up some entertainment. Before we knew it, it was a full-blown K of C BBQ! Not really, but it was very humbling to see what people were wanting to do. It has since been scaled back and will be held at the Columbus Road Kidzone in a week and a half. It will be a more intimate gathering and Kelsea and I still plan to pay it forward as much as we can.

This past year has really put things in to perspective. There have been so many times when we felt like we had things so rough or that things were not going the best for us. However, we usually just had to leave Hayden's room in the hospital and we would pass 15 families/patients in 30 seconds who had it so much worse. There were patients in the PICU (where he was for 11 nights after his surgery) that will never leave. There were families in there who will never get to hear their child talk because of breathing tubes or other issues. Kelsea and I would get down on ourselves and feel sorry for ourselves at times, but we would quickly be grounded. We discussed the benefit (many nights) and what people were wanting to do for our family. We felt guilty because even though there have been many medical costs and future bills, there were still so many people who have bigger issues than we do. God has definitely showed us generosity over the past year and we have pledged to pay it forward and show others the love and generosity that He has shown us.

Before I leave you with some pictures, I want to ask for a special request. Hayden, Kelsea, and I have some special "online" friends in Washington and they have spent more time in the hospital than what any parents wants to do in a lifetime. I know it is part of God's plan, but I ask that you say a prayer today for Ryan, Carly, and Gavin Christiansen today and ask that it be God's will that Gavin be released from the hospital and be able to start eating and breathing without support. Gavin was born just shy of two months after Hayden and he has had a rough go with things. I take comfort in knowing that once this passes, they will be able to accomplish anything. However, they are also due for some quality family time at home again and away from the hospital. I have a feeling that Hayden and Gavin will get to hang out and play with each other one day in the not so distant future!

I honestly don't know when the next time a post will show up, so hopefully this one will hold you over for quite awhile. I enjoy writing and telling Hayden's story, but I would also rather spend my free time playing with him! Sorry, but he takes a little priority. Until next time, I will leave you with some pictures that may create your own "flashbulb memory."

Evolving

Why is it that ever summer, as an educator, once the calendar flips over to August, it seems like the hands on the clock move twice as fast? I guess it can be attributed to being in the building, preparing for the upcoming year. Working on rosters, supplies, rearranging the room for the fifth time, etc... Whatever the reason, we have hit that point. We still have two weeks before the first "official" day back, but it's here. This is good and bad.....I have been at school quite a bit over the past week and although I have missed Hayden and thought about him every single moment, it is also a good practice run to prepare being away from him.

As I'm sure you have noticed, it has been 2.5 weeks since my last post. I wish I had more time to update every day, but there isn't. Unfortunately, with school starting, I have a feeling this will become the norm and I will be lucky if I can get a new post every 2.5 weeks.

Kelsea and I have entered our new normal, once again! This normal is one that most of you have experienced at one point or another. We feel like we finally only concern ourselves with worries that any new parent worries about.......

• He's making sounds in his crib; do we pick him up or let him be?
• What time does he need to go to bed?
• How long and when should he nap?
• Do we take him to the Cardinal game or not?
• Is it too early to strap a saddle to Tucker and let him "babysit" Hayden for a few hours?

My point is that our concerns are everyday concerns and not ones that nobody has an answer to. We aren't worried about the pressure on his lungs, stomach, intestines. We aren't worried about him putting on weight and we aren't worried about the amount he's eating. Ok, I just lied. The last two things are still right up on a daily basis, but he is doing excellent! 12lbs, 13 oz. as of 6:30 a.m.! That's 1.8 pounds in 27 days!

His incision is looking awesome and it hasn't bothered him one single time! Hayden has also found his outside voice! I don't think I have ever smiled and laughed as much as I have in the past two weeks. Every time he experiments with a new sound or screams, it is the cutest thing! I'm sure it won't be so cute in two years when he's throwing a tantrum and screaming in his bed at night! Hayden also loves playing with, staring at, and reaching for the animals. As you can see in the two videos, the cats don't mind Hayden being around at all!

 

 

We also finally got Hayden his high chair this past week. He really enjoys being able to sit at the table with us for dinner instead of lying on the ground! With this, Kelsea was also able to introduce his first "solid." Oatmeal! I still have no idea why it's called solids when it is the farthest thing from it! It is basically breast milk with the tiniest flecks of oatmeal powder!! Whatever it is, Hayden likes it! Why wouldn't he though....anything and everything is going in his mouth! Too bad that the first night we had the high chair, he took a two hour nap and slept right through dinner!

A week and a half ago, I was able to make it down to St. Louis for a Cardinal game. It was a great game; unfortunately, it was the last game they won for I believe 7 straight games. Ugh! It was also a great feeling driving past the Kingshighway exit because it had been a long time since I had done that. The next morning, we travelled back to St. Louis for Hayden's surgery follow-up appointment. We were very excited to see Dr. Warner and anybody else that we crossed paths with. We also were planning on meeting up with the DiFranco's (Baby Frankie's Journey), but unfortunately we left about an hour after we had planned and we told them the wrong Babie's R' Us we were going to! So, since we were on the opposite ends of St. Louis, and it was raining pretty hard, we decided to postpone our lunch until the next trip. I felt bad, but know that we will meet up next time. We were so excited to get to see Frankie again and take some pictures! Oh well, wasn't in His plan. Hopefully next time we will have a different outcome.

Kelsea's MFM (OB-GYN Specialist) who delivered Hayden knew we were coming back down for an appointment and wanted to get a photo with his "team" from beginning to end. They said they would have a photographer and wanted to round up as many people as possible and would take some pictures after his appointment. The appointment went great. Dr. Warner and the fellows were all very happy to see him and his progression. They couldn't believe that he had zero vomits since his surgery. Dr. Warner had warned us that they would probably increase due to the pressure of his closure. I'm ok with him being wrong on that accord and won't count it against him!!! He also cleared us for 6 months, so we hopefully won't be making any trips to St. Louis until after the New Year!

The photograph session turned out to be a little more than what we had planned. The photographer was actually from Outlook, which is Washington University's School of Medicine's magazine that is published six times a year. They wanted to do a story on Hayden and his doctors. It was great and Hayden did fantastic, as he always does. I just hope they share some of the pictures with us because there were some fantastic ones. I was able to get a few myself from behind the photographer. I wish a few of his nurses could've been there because they played such a big role in Hayden's success, but it is a little more difficult to pull the NICU nurses away from the patients. There is a photo with everybody in it, but since I was in the photo, I obviously couldn't take one myself. Hopefully the photographer will e-mail us a copy of that!




This is Shannon (L) and Chris (R) our two nurse coordinators who were there for us at the very beginning. They are two wonderful people who help make the Fetal Care Center click. They took care of all of our needs before Hayden arrived and ensured that things went smoothly.





Dr. Knipstein, who was one of Hayden's NICU Fellows, is his favorite doctor because she loves to snuggle with Hayden every time he comes to St. Louis. We feel very blessed and fortunate that she was one of his doctors.




"Look at that Mom!" He may have
found another calling!

Dr. Cahill (MFM) on the left and Dr. Warner (Surgeon) on the right. These two will always hold a special place in our hearts because she was the one who brought him in to this world (she was the one who said "Hi Hayden" from the original Fox video if your remember that) and he was the one who gave us so much by performing Hayden's closure surgery.


As we continue to evolve and move from "crisis" mode into normalcy, we would like to thank everybody for their continued prayers, thoughts, well wishes, and support that you have wrapped us in for the past 11 months. We know that God has been at work in our lives, and yours (whether you know it or not), and we feel beyond blessed that He has led all of us down this path. From the very beginning of this journey, friends, family, colleagues, and complete strangers have helped to encourage and lift us up, on good days and not so good days. It has been a very humbling journey, but one in which we have both grown immensely in our faith, our love, and our awareness of those around us. What you have done for us in the past, and continue to do on a daily basis, has instilled a desire to show the generosity and love, that God has instilled in all of you, to many more people. We don’t know what shape or form this will take, but we know God wants us to “pay it forward” so to speak so that many more people will see the power of His love and His plan.


Since the posts may get fewer and farther in between due to school starting, you might like to be updated by an e-mail whenever I add a new post. If this is the case, you can 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 that alerts 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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Onward and Upward

As Kelsea and I were weighing Hayden this morning and talking about his current feeding habits, it was hard to imagine that is has been 182 days since that crazy, hectic day (So The Plan Was....). Hayden has been doing fantastic. In fact, he has been doing better than fantastic. As Kelsea put it the other day, we have reached our new "normal." We are no longer living in "crisis" mode as it seemed we were the first five months. All of the problems Hayden had to deal with on a daily basis before his surgery (painful gas, reflux, vomiting, feeding difficulties, slow weight gain) have disappeared. He has done a 180 and we are living a completely different life today.

Before his surgery, it would be a great day if Hayden dank 100 ml (little over 3 oz.) in a feed. Based on his weight, he should have drank close to 28 oz. of milk per day. However, he was lucky if he would get 18 oz. We had to fortify his breast milk with formula to make sure he was getting enough calories. However, due to his inability to keep the milk down, he got nowhere near the calories he needed. Since we have been home from the hospital, which has been 12 days, Hayden has become an eating machine! He has been nonstop eating and hasn't thrown up once (knock on some wood please!!!). Two days ago, he drank 210 ml (7 oz.) in one feeding....this was about 3 times as much as his normal feeding before the surgery. The first day or two home, he drank/nursed over 600 ml. Then it climbed to 700 ml, and he is now routinely pushing close to 900 ml/day, or roughly 30 oz. This is the amount he should be eating based on his weight.

Speaking of his weight....in the past 12 days, since we have been home, Hayden has put on 1.02 pounds! He passed the 12 pound mark this morning!!! It took us 27 days to go from 9 to 10 pounds and 30 days to go from 10 to 11 pounds...however, God decided it was time for Hayden to catch up and get back on track to where he should be. We are just so thankful because even though he only lost about 1/2 pound in the hospital, he had no fat on his body and you could tell just how much he was struggling. In the picture I have included here (screenshot from the app that tracks his weight gain), you can see just how he had struggled with his weight gain (and began to worry his doctors) in the few weeks prior to his surgery. As you can see, he is still below the 5th percentile, but he is getting closer to being back on the chart. When you look at the adjusted chart, which technically we should since he was early, then he is even closer. We are just so happy and so blessed with how well Hayden is doing.

Hayden has also started rolling over. At first, it was only if Kelsea gave him a little help. However, his arm would always get in the way and prevent him from going fully over. Not anymore! He is going from back to stomach and vice versa! He still has PT and OT once a week and they give Kelsea plenty of stuff to work on with him, which she does such an amazing job with Hayden. I am so happy that she is going to be able t stay home with him this year and continue to work with him as he grows. Kelsea also took him "swimming" a few days ago and she said he is part fish!

In case you didn't get to see the report Mandy Murphy, from Fox 2 in St. Louis, did last week, I am including the link below:

Corrective Surgery

As she did in January with his birth, Mandy did an absolutely fantastic job reporting on Hayden, what he has gone through, and the wonderful care he has received from his doctors, nurses, and all involved at Children's Hospital in St. Louis. I also learned something new while watching the video of his surgery. I had noticed that there was tape over Hayden's eyes in one of the shots. With all of the surgeries I have had, I never realized this, but in most surgeries, your eyelids are taped shut so they don't open and protect your eyes. Crazy, huh? We go back for Hayden's follow-up with Dr. Warner next week. We are excited to see him and feel he will be excited at Hayden's progress as well. We are also excited because we are going to try to meet the DiFranco's, who we were able to officially meet after our son's had corrective surgery within 24 hours of each other. It is a neat thing when parents of children who had Omphaloceles get to hang out and meet!

Kelsea, Hayden, and I continue to feel blessed beyond what we deserve. We continue to meet people and hear stories about how Hayden has touched their heart and how he has helped them strengthen or renew their faith in God. We know that this plan God has for us was laid out a long time ago. It is such a wonderful thing to see Him working on people around us. Wednesday night, I had the chance to attend the men's bible study at Columbus Road Baptist Church and the verse that night was the following: Then Jesus said to His disciples, 'If anyone wishes to come after Me, he must deny himself, and take up his cross and follow Me."  - Mathew 16:24

It was a great thought provoking discussion regarding turning away from our selfish ways and giving yourself to God and others. This is something that I struggle with on a daily basis. On an hourly basis. However, seeing others do this and put me in front of their wants and needs is such a humbling experience and great reminder of what He wants me to do. We saw this tonight when a student dropped by the house with an absolutely wonderful handwritten letter and gift from Purina. It again made me feel like we don't do enough and hopefully Kelsea and I can do the same for others. (Thanks Hannah!!)

I would like to ask those who read this to say a quick little prayer tonight or tomorrow for Rose and Ross Finley and the Longo's. She is in the 28th week of her pregnancy with her twins and are in Springfield for a few days while her doctors observe her and the girls. I can't speak for the Finley side, but knowing they have some Longo blood in them, they are going to keep mom and dad, as well as grandpa Matt and grandma Amy on their toes and they could all use a little peace over the next few days.

I feel like this post jumped all over the place tonight and it might not make sense. I am worn down after working outside in the yard for about 5 hours today. Much needed and long overdue....great day to do it...right??!!! However, I have wanted to get a post out for the past 4 days.....so I forced myself to do it tonight.

Now that it is 10 o'clock, I feel like it is way past my bed time. I must be getting old. I am not the only one getting older though....those 182 days I mentioned earlier translates into six months!

Catch Up

By some of the e-mails I have received, several of you are on the edges of you seat waiting to hear how things have been going the past 4 days. I will rewind to my Saturday morning post and try to catch you up to where we are today.

My last post Saturday morning left off as we were waiting for doctors to make their rounds. Hayden had a better night Friday night than he had during the day, but it was still a struggle. Kelsea and I took turns holding him in the chair while the other tried to sleep on the couch in the room on the 10th floor. This went on through the night until he finally fell asleep in Kelsea's arms around 3 or 4 in the morning on the couch/bed while I made my way down for what was probably my 8th cup of coffee and a Snickers as I prepared to watch the next episode of Friends on one of the TV stations.

After waking up, Hayden did much better. He still didn't want to be laid down in his bed, but he was doing better. Rounds came and they said clinically, on paper, he was good to go home. However, they wanted to observe his feeds again overnight. We told them we were ready to go home; however, if they felt it was absolutely necessary to keep him again, we trusted them. BUT....we were ready to go home!

The attending surgeon made her way in to Hayden's room later that morning and checked him out. She said that he looked good and she felt comfortable sending him home with us. She said they know they can trust us and that we are his best advocates and they know that if there was a problem, we would bring him back right away. She finally gave the green light and signed the orders to kick us out. I went back to the hotel to load the vehicle, and just like that, we were gone, heading home, with absolutely nothing attached. I think my dad said it best when he posted the following on Facebook: "Can you believe it? Hayden will be leaving Children's Hospital in a few minutes....... no IV's, no feeding tube, no vent tube, no OG line , no heart monitor, no PICC line.....and for the first time in his life,  NO Omphalocele!!!!!!!!!!!!!! "

Just a week ago, I was certain he would come home with oxygen and a feeding tube. I had even asked the doctors to put a feeding tube in because I was so worried that he wasn't getting the proper nutrition (he wasn't either...remember the PICC line was only a "Pic" line and he could only get the partial TPN!). How many times does a parent ask the doctors to put a feeding tube in??!!!

We were ok with him coming home with those things, apprehensive, but ok if it meant we got him home. However, once again, God blessed us with having nothing attached to Hayden except his mom and dad's arms!

We left the hospital around 3:45 Saturday afternoon. Hayden had a couple of prescriptions, all except for one that were technically OTC. The one that wasn't OTC was the one he really needed. This was to help wean him off of his narcotics. Most pharmacies closed at 6 in Quincy, and I knew we wouldn't be able to get them filled. I thought about getting it filled at a Walgreen's a few blocks from the hospital, but remembered the one in Quincy was open 24 hours....and I was ready to get out of Dodge!

Hayden fussed some on the way home; not his normal asleep in the car self, but it wasn't horrible. We were home around 6 p.m. and I was back out the door by 6:30 (after playing with Tucker for a few minutes) to drop the prescriptions off at Walgreens. They were going to be ready about 7:30, so I pulled around and played on my phone while I waited for them to be filled. However, I was interrupted by a phone call from Walgreen's stating they did not have his medicine and that all the other stores were already closed and they could try again at 10 tomorrow morning once more local stores opened. I had Kelsea call Dr. Asbury and see if there was anything we could do to keep Hayden from going off the deep end with withdrawal symptoms until tomorrow. He was due for his next dose in 30 minutes and would be ready again for the following one at 8 the next morning. She said it would not be good if he missed two doses.

Walgreens informed me that Jacksonville was the next closest Walgreens that was open 24 hours and they would call to see if they had it. My response was, "Jacksonville is 90 miles away and that doesn't help me get the medicine!" I was running on 2 hours of sleep in the past 36 hours, hadn't showered in the same amount of time, was hungry, and ready to be home. The clerk giving me this "dumb" idea was not going to help me. However, I quickly realized what I had to do. Ugh.... Yep.....you guessed it! After all of the aforementioned "negatives" as well just finishing driving 2.5 hours from St. Louis, I left Walgreen's (after they called the Jacksonville store first!!!), stopped and got a large coffee and a large Mountain Dew, and pointed the truck East on I-72 at 8:00 at night!

I called Kelsea as I was pulling out and told her to hold on to him if she could, I would be home as soon as possible. He, of course, was fussing and inconsolable and I felt so bad for her, and him. The drive wasn't all that bad. It went pretty quickly. I was home by 11 and Hayden got his meds. He was in bed asleep shortly after that and didn't wake up until the next morning.

His crying and agitation has continued on and off for the past three and a half days. Kelsea and I try to remind ourselves that Hayden is experiencing many normal baby stuff, but we are also cautious not to just write it off as "normal." We know that gassiness is something that all babies deal with. We know that teething and wanting to be held is something that all babies deal with. However, since his intestines and other organs are not necessarily in the correct anatomical place in his body, we still need to be aware that he does have the potential for problems that other babies wouldn't have. For example, last night was rough. He would not sleep for more than 15 minutes at a time and from yesterday afternoon until about 1 this morning, he had bouts of crying/screaming, almost non-stop along with arching his back. When he was held, he was good (for the most part). When he was put down in his crib, he would start screaming again. When he would fart, he would be better, for a while.

Again, we know these are all things that most babies deal with, but when it goes on for 4-5 hours at a time, it seems like it is excessive.

Sunday brought a new day. Hayden had turned into an absolute pig! The first day he started eating in the hospital, he set a record for the amount he had eaten in a 24 hour period. Since he was eating so little before his surgery, we would still measure the amounts in milliliters and not ounces. His first day, he ate around 650 ml. He had only eaten over 600 ml probably 4 or 5 times in his life!

Sunday, he blew that out of the water and hit the 700 mark. Monday, he did it again and ate over 800 ml in a 24 hour period! This is absolutely some of the best news we have had! Hayden's Broncho/Tracheomalacia can only be "cured" if he outgrows it. In order to outgrow it, he needs to eat. He wasn't eating well before his surgery, but things have changed. He dropped close to half a pound while he was in the hospital, but in the 3.5 days we have been home, he has gained more than a 1/4 of that back!

Over the past few days he has continued to have his crying/screaming fits, but we are still attributing that to gas and his intestines kind of being all over the place. This may be something he fights for a long time. However, he is back to his normal, happy self. Hayden was happy to be home to all of his toys and his Tucker, Slice, and Killer. He was also as close as close can get to rolling over on his stomach (on his own) in the first 24 hours since we had been home from the hospital. If it wasn't for his arm underneath him getting in the way, he would've done it!

We haven't really mentioned it to a lot of people, but if you recall, Mandy Murphy from Fox 2 in St. Louis did a special report on Kelsea and Hayden's birth back in January. You can view that post here. Well, they wanted to do a follow up on Hayden. They actually had their camera crews back in the operating room as they fixed Hayden's Omphalocele. We were supposed to do another interview with Mandy at the hospital last week, but I asked to push it back several times due to Hayden struggling as he was and Kelsea and I were not emotionally ready to do an interview. As luck would have it, Hayden was sent home before we could meet, so she settled for a phone interview yesterday!

It definitely won't be as big of a piece as she previously did (I'm guessing) but it should be pretty informative. It is set to run on the 10 o'clock newscast tomorrow night (Thursday, July 11). Hard telling where it will fit in, but check it out. If you're not in the St. Louis metro area, you can watch it online here: Fox 2 On Air Streaming.

While we were waiting for Mandy to call us, we got a call from Dr. Warner to check up on Hayden. We were both very impressed that he called to see how Hayden was doing since he had been released. Even though we know God is in control and placed this man in our lives for a reason, we are still very thankful for the work/role that Dr. Warner played. I also can't say enough about all of the doctors, nurses, and staff of the PICU and entire hospital. There were several things that I witnessed that a parent never wants to witness that gave me a different outlook. Seeing your son "code" two times (meaning he had respiratory failure) and watching people save his life and breathe for him, put things in a new perspective. These doctors and nurses and technicians took an interest in Hayden, our son, and he was more than just a patient and a job. I could see it in their eyes that they worked on him as if he was their own son. For this, I will always be in debt and grateful for their help.

Obviously, the previous paragraph shows that I am thankful that the good Lord placed these doctors and this hospital so close to us. There are many, many things that I am thankful for and could go on and on for days. Right now, the biggest thing I am thankful for is to have my family all together again....even if there is not room on the couch for me, and that Hayden has been eating like a pig and even though he lost some weight while in the hospital, he is quickly catching up. 

 

Home

We made it home last night....some of us later than others. We are very blessed and fortunate to have God in our life as well as our family and friends 

Will try to get a good post later today.

Waiting

So the story is....well, we don't really know! Hayden had a great day yesterday in terms of feeding. However, he wouldn't sleep and was agitated and inconsolable. Not sure if its gas, pain, narcotic withdrawal, something else, or combination of all of the above.

He had a somewhat better night and is sleeping with Kelsea now. Waiting on rounds to see what the doctors think. I am hoping they say he is just struggling because his intestines struggle while "waking up" and decide to pull the PIC line and NJ tube and send us packing. 

Hope to know shortly.

Complaints

I want to complain about the following things:

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I really could go on and on, but I'm trying not to. Sometimes it is so frustrating to see your child crying, and you don't know what it is for....especially when he NEVER cries at home. Sometimes I want to yell and scream and tell the world just how mad and frustrated I am, but I know that won't change anything. When I take a step back and look at the whole picture, how could I ever complain? When we walk through the halls of the hospital, how could I ever complain? When I see some kids in the rooms next to us who more than likely won't be going home, how could I ever complain? Even though when I look at the moment, when I look at a tiny snapshot of the bigger picture and I get lost in it, I know I need to take a step back and look at where we have come from Since September 17th. I need to look at how happy the doctors are with Hayden. I need to look at the looks on the doctors' faces when they come in and see Hayden. He is a star! There are things that I wish were different right now, but things are good. Things are very good. Kelsea and I are amazed at the outpouring of support, thoughts, and prayers that people are sending out for us. We are truly blessed and sometimes don't feel like we deserve everything God has given to us.

Hayden had to have a little oxygen overnight as we was agitated, however, it is back off and he is doing well. The goal today is to keep him happy. Keeping him happy I think is going to revolve around two things.

1. Keeping his bowels moving gas and poo....he doesn't like it when either get stuck!
2. Getting some milk in his belly. Even though he is being fed, the tube goes through his stomach and into his jejunum so he doesn't get the "full" feeling. Once he wakes up and acts hungry

He probably could have made it out to the "floor" today (10th floor/Surgery Recovery), but his PICU doctors want to monitor him one more night just because he was showing some signs of withdrawal from his medicine. They don't think it was full blown, but they want to make sure. We are ok with that. We would never turn down the extra attention and care he so deserves!

Mom and Dad are on their way back down for a few hours. They said a couple of nights ago, when they got home, Tucker was extremely disappointed. They drove my truck, and when he was looking out the front window and saw it pull in the driveway, he figured it was me. Mom said he ran outside and circled the truck several times, looking inside, but was so despondent when I didn't get out! It broke my heart!

That's ok though because I have a feeling we will be home to see him soon! Until then, it is time to try to give him a bottle. Wish me luck!