Thursday, July 18, 2013

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!








Wednesday, July 10, 2013

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. 

 

Sunday, July 7, 2013

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.

Saturday, July 6, 2013

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.

Thursday, July 4, 2013

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!

video

Wednesday, July 3, 2013

No towels. Need Sleepy.











Feeding tube was placed yesterday (Tuesday). Fairly good day as well, minus a few periods of irritability. Last night Hayden was cranky from midnight to about 5 this morning. Still doing great with breathing. 100% oxygen at 1.5L and saturation at 100% most of the time. Will continue to wean the flow (1.5L.....don't know what that means besides the amount that is getting pushed through tube/support) and start on amt of O2 (100%) and work on decreasing towards room air, which I believe is 21%. 

Parents made it down for a few hours to exchange laundry and give Kelsea and I a chance for lunch and a nap. The dining out curse continued!!!

It's 7:30 am. I have to make some calls regarding insurances and bills, then it's off to bed for this guy. Goodnight moon!

Tuesday, July 2, 2013

Small Glimpse

Rough 36 hours. Hayden, mom, and I have been up for about 33 of them. He continued to struggle off the vent. Actually he was breathing great and was weaned almost down to 1 liter of O2. However, the pain and his addiction to pain medicine got him. They think he was exhibiting withdrawal symptoms from the sedative he was on while intubated, which caused 30 hours of straight crying, which led to swallowing a lot of air, which led to a distended tummy, which meant he was unsuccessful when we attempted to feed him tonight. 

After another one of "those episodes" around 6:45, Hayden was calmed down, had a replogle tube reinserted into stomach to drain gas and fluid, put back on lower dose of similar analgesic, and slept for almost 3 hours. So happy to see him calm for a few hours. Even though I know this is all part of Gods plan, when you see your son struggling, it is hard not to worry and question things. Thank you all for the prayers, for Hayden AND Kelsea and I. I received an email with a perfect message at the perfect time tonight that greatly helped me out. 

Kelsea and I are splitting shifts tonight and hopefully she will wake up and relieve me at 1:30 so I can get a couple hours of sleep and be back by 6 to get ready for rounds. 

Remember, what we are seeing in front of us at this moment is only a photograph, a tiny image of the grand scheme He has laid out for us.