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 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 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!


  1. Congrats on your weight gain : ) I know how important it is to see gains. My Son is now 5 months old and 16.5 lbs, a big boy despite his "O" set backs.
    Hope you guys continue to see gains in leaps and bounds
    -Patricia Rock