Kelsea and I have been getting our schedule and routine down, if there really is such a thing as routine with a newborn! Today marks six weeks that Hayden has been on the "outside" with us and things are going wonderful. God is working overtime with this little boy and it continues to amaze Kelsea and I just how lucky we are to have both of them in our lives. It has been about several days since Hayden has struggled keeping his milk down. I think it was Sunday and Monday where he had a rough couple of days. He was up at night, spitting up, not just a little, but quite a bit of his milk he had taken in, and seemed to be in pain several times. However, we altered teh way we approached his feeds and tried several different things. We don't know what it was, but they seemed to have work. He has had an excellent week and is putting on weight. We also started him on an antacid because many times GERD is associated with babies who have an Omphalocele. This has seemed to help as well. He had an antacid put in to his TPN (Total Parenteral Nutrition) IV when he was still in the NICU, but hadn't had this for quite some time. He has had his awake time during the day and sleep time at night....which is good for both mom and dad!
Tucker is adjusting. Not sure how well, but he is adjusting. He definitely likes being around Hayden (or so it seems), but he is also jealous at times. He follows me around the house wherever I go. Some times, when I am on the floor with Hayden, Tucker will bring a toy and come right up next to me and start pushing on me, sometimes even walking and laying down between Hayden and I! We have made a concerted effort to make sure we haven't forgotten about him. Tucker has had some great times this past week playing in the snow outside. We have walked through the woods, around the neighborhood, and chased squirrels in the back yard. He also got to go to the dog park the past two days, although yesterday, he didn't play so well. There was a male rottweiler (who he has played with before) and a female. Tucker was getting jealous and wouldn't stop barking. He kept trying to play and join in the wrestling....but he was not playing nice. We ended up leaving because he wouldn't stop barking and I didn't want to be "that guy!"
Phil Carlson, from the Herald Whig stopped by on Wednesday to do another short interview so he can create an online presentation to go with the 800+ photos he has taken! He and Maggie have done a wondeful job of not being too intrusive and making us feel comfortable around him. I believe it is going to run in next Sunday's Herald Whig, the 10th.
Hayden's doctor appointment went well on Wednesday also. He was up to 7 lbs, 6 oz. Dr. Asbury said she would like to see him gain 15-20 grams per day. Hayden gained, on average, 28 oz per day! We are still monitoring how much he takes every feed because it is such an important issue for him and Kelsea is also able to finally start introducing nursing to Hayden again. We are doing it slowly and starting with one feed per day, but we are making progress. Hayden's Omphalocele is doing AWESOME! There is new skin growing all over it. Skin, although not very thick, is completely covered the organs. It is also getting so much smaller. I am not sure if that means the organs are slowly going back inside his abdomen, but it is remarkable. We used to need 2-5x9" sheets of Xeroform (the petroleum soaked gauze) to cover his "O" before adding the compression. However, we basically need only one and a tiny little strip. We could probably get away with one, but we want to make certain we have mor than plenty to cover the skin and keep it moist.
On a gross note, Hayden stinks! Dr. Asbury told us the smell is coming from his umblical cord "stump." Since we have been wrapping with and keeping it moist, it hasn't fallen off yet. All of the "scab" looking green stuff is slowly coming off and that will soon as well. However, you can imagine. It is basically dead skin. Not a pleasant odor! We didn't want to pull it off because we didn't want to mess with his skin growth. However, we spoke with surgery at Children's yesterday and they gave us permission to go ahead! We will get that taken care of today and get the boy smelling so fresh and so clean!
As we were talking with the Herald Whig reporter this past week, we did a lot of reflecting on the early days. He asked us a lot about our faith, and the people involved along this journey. It made me reflect more about God's plan and how we have no idea what that plan is or how we really play a part. At first, that is something that is hard to comprehend. How do I know I am doing what I am supposed to if I have no clue what it is. Wel, thankfully, He does know.
Jeremiah 29:11 states "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."
It is ok to not know. If we put our trust in the Lord, He will show us the path. We have been fortunate enough to see glimpses of what that plan is, even if it is retrospective. We continue to be amazed every single day at God's plan for Hayden and how He has used him in other's lives. Earlier this week, I got a message on Facebook from a friend back in high school who was a couple of years younger than me. I can't even tell you how many times we talked in high school, but I know our paths crossed different times. It has been 15.5 years since I probably saw her last (WOW! That's kind of scary...I'm getting old!), but she told me of a story about a friend of hers from St. Louis who had a child that is 4 1/2 years old and also had an Omphalocele. When Kelsea and I were approached about allowing Fox 2 in to our lives to do this story, we weren't sure what the right answer was. We were afraid that by saying yes, we might have been just looking for our 15 minutes of fame. After many discussions between with each other and with God, we felt that He led us to this place because He had plans for others. We thought that Hayden's story might give others who were facing a difficult pregnancy some hope. At the time, as always, we couldn't even begin to imagine exactly how vast and detailed God's plan was.
My point is that God didn't give us Hayden, and lead us to St. Louis Children's Hospital just so our faith could be strengthened. He did it to help many others as we are beginning to find out. The girl that I mentioned above was able to show her son exactly what he experienced a few short years ago. She was able to show family and friends exactly what she experienced so they could understand better. When I was reading this message on Facebook, I couldn't stop smiling. It was so amazing to see just another small piece of the puzzle.
To save time...I am just going to add pictures to the bottom of the blog today. It is when I try to add them in the story that it slows me down and I try to get creative....so today, you get the boring blog!
I do remember that smell! We were so happy when the last bit of cord fell off. So happy things are going well for you guys.
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