Thursday, January 24, 2013

Days of Life or Days of our Lives?

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So we are starting "day 6 of life" (as the doctors call it while doing their rounds)! I can't believe it has been more than five and a half days since Hayden joined us in this world. It has been such an emotional roller coaster. I knew this would happen, and tried to prepare myself. However, this is one of those things that no matter what you do, you're never quite ready. Even talking with friends from church, best friends from childhood, and new friends from work, their similar experiences help prepare for what lies ahead, but you never fully understand until you get there.

Casey and Lisa brought their kids down to the zoo on Saturday, so they were kind enough to stop by the house and dump some clothes in some bags for me and bring them by. On that note, I would like to thank everybody who has sent loves, prayers, gifts, and kind words during this time and the past four months. The prayers obviously worked because Hayden surprised us all and is doing much better than what I thought he would. I would also like to let everyone know that I might have missed some phone calls and not replied to some questions on Facebook. If you have a question, please send me a private message. E-mails are coming through on my phone like crazy and most of the time, I don't even go to Facebook. I just read the e-mails. However, I don't want you to think we are ignoring you. Basically, if a question is asked on a picture post, I usually forget to go back and answer your question. Thank you again for everything! On Monday, I was able to make a "quick" trip home and do some long-term packing. I hoped to be at home for no more than 3 hours. However, it is kind of hard to fit 2 days of work into 3 hours. I ended up not leaving Quincy until about 3 hours after I had originally planned. I even tried to pick up the house, somewhat....but I know it wasn't like what I should have done. I didn't like being gone and the longer it took, the more frustrated I became because I wanted nothing other than to be back in St. Louis with Kelsea and Hayden.

Dad was able to snap a picture in between taking
 out the drainage tube coming from mouth and before
 inserting NG tube through nose. It is amazing how much
 he has changed in 6 short days!
I'm sorry if I'm repeating myself, but Hayden's heart and lungs look good. He does have what they call a PDA, but so does every other baby. It is a small hole between his between arteries that is critical to blood flow before birth, but, as soon as he is born, or within a few days, it closes and allows blood to flow to the lungs to pick up the oxygen. I am more and more amazed at how God has designed out bodies and how there are so many different systems that completely change the moment he was born. When you really dive into these things, there is no way that these things happen by accident. This little boy laying in front of me, everything inside of him and how these systems interact and change and adapt is living proof that there is a greater being that is responsible for life. Anyways, the PDA should close on its own, and if it doesn't, they can hear it while listening to the heart. Again, the Neonatologists (newborn medicine are not concerned.

Dr. Warner
His Omphalocele is looking good. Skin is already starting to grow up the side. Dr. Brad Warner, who is the name that continuously popped up on the Internet when doing my initial research, was the doctor who wrapped his "O" the first couple of days. It was amazing to meet him and realize Hayden had one of the best doctors in the country helping him. I felt like I was talking to a celebrity, yet he was very friendly and outgoing and made you feel like you were a part of the team. Since then, we have met many, MANY doctors, nurses, students, assistants, etc... First, you have the Pediatric Surgeons and then you have the Neonatologists. In each of these two groups, you usually have the attending doctor and a fellow, as well as residents and possibly even interns. Surgery does their rounds first thing in the morning, around 6 a.m. After that, Neonatology usually does initial rounds around 6:30. After doing their rounds, checking in with the patients/parents, and attending nurses, they all get together and cram about 20-25 people into a conference room and discuss all of the patients. It truly makes you feel blessed to realize that there is not just one person who is trying to run the show. It kind of reminds me of the three branches of government we talk about in class at different times. They keep each other in check and help each other to run the show. Too bad our government couldn't learn a thing or two from Children's hospital in St. Louis! It has the potential to be overwhelming and confusing, however, they are very caring and when a word is used that I have never heard of, they are quick to explain when I ask. They listen to parents concerns and also trust the nurses who are by Hayden's side most of the time.

Future Blue Devil right there!

The past few days, we have been trying to feed Hayden breast milk through his NG (feeding tube). However, he has not had the easiest time digesting the food. On Tuesday, he spent most of the morning and afternoon spitting up the milk that his stomach couldn't handle. It was not fun to watch, but part of the process of trying one thing to the next to find out what exactly works. They have tried different amounts, different times, different position, and even added Pepcid (I think) to help him digest. He made it about 31 hours without spitting up his food and even seemed to be digesting a little bit. Or at least there were signs that his stomach was working to digest the food. This is a common problem that babies with Omphaloceles deal with and it is just a matter of trying to get the systems to work and usually is just trial and error.

Whatcha talkin' bout Willis?? 
This morning, the nurse said he didn't spit up, but she could tell he was getting "full" and stopped the feeding....he was getting 2ml/hr of breast milk....not very much, so he has also been getting supplement through his PICC line, which is the IV that runs through a vein in the side of his head down to his heart. It doesn't reach the heart, but gets very close. Surgery did give him a suppository and the nurse said he had an "impressive" stool. It is still some meconium, and surgery and neonatology are very hopeful that this was still blocking his system and with this passing, will maybe help jump start the process!

He has graduated from his isolette "table" to a big boy bed and we were able to decorate it last night. Kelsea and I have a couple of "toys" in there, as well as a blanket grandma Trudy made for Hayden! He also has Ompahlo....the Seal which Kelsea and I bought at the zoo on our first trip to St. Louis last fall. All of the doctors and nurses absolutely love that we have a sense of humor and are trying to stay light hearted through this.

This is "Omphalo....the Seal" He is Hayden's
watch seal when we are not around! This was
the first gift Kelsea and I bought for Hayden
 on our first trip to St. Louis to meet the doctors.
 We went to the zoo after our visit because it was
 such a beautiful afternoon!

Kelsea and I were able to get into the Ronald McDonald House (RMH) at by 270. This is a beautiful complex which is basically brand new. It was built 2.5 years ago and was the 300th RMH, so it was kind of a big deal. However, I have to admit, last night was, without a doubt, the hardest thing I have ever had to do. Every night for the past 5 nights, when we have left Hayden, I didn't feel like we were leaving because technically, we were still under the same roof. Even if it was a 8 minute walk to Kelsea's hospital room, it was still under the same roof. However, last night, actually having to get in my truck and drive was difficult. I know we are only 15 minutes away and he is in the best care possible, it was still hard. Kelsea and I are trying to be patient with each other, but sometimes (many times!) it is difficult. We are trying to lean on God, but we are humans and selfish and we get caught up in what we want and what is best for me. When we do that, things don't work out. It is a constant struggle between what I want and what God wants. It has been easier with Hayden here because most of my decisions have been made based on him. However, at the end of the day, I still think about myself.

This what we will call "The Thinker"
I will say though, that driving down the interstate this morning, pulling onto Kingshighway and into Children's parking garage, I had a sense of excitement overcome me.....I felt like it was Christmas morning and I was running down stairs to see what gifts had been brought. That is the best part of my day once I get back into the NICU and finding God's gift to us! And like the sands in an hourglass, so are the days of our lives!!!


  1. Tears of joy well up in my eyes when I see Hayden.,and a sense of pride knowing he has you and Kelsea for parents..what a great choice. God is very wise indeed...feel double-dipped cause he brought you into my life and has renewed my faith. Continued prayers on this journey and many thanks

    1. Kelsea and I are very thankful that God is using Hayden to reach out to others and remind them of his love for us.