Friday, May 31, 2013

Summer Time

We are a week in to my official summer and I am loving every minute of it. It has been wonderful being able to spend a little extra time with Hayden in the morning. There is nothing better than waking him up in the morning and hanging out while he takes his bottle and I take my coffee!

The past three weeks haven't been too eventful. Mom and dad made it back to Florida and are settling back in to their routine. Kelsea and I pretty much have our schedules figured out, as much as Hayden allows us to have a schedule! I just finished my 10th year of teaching. It is hard to believe that I have been doing this that long! My how the time flies.

Kelsea has officially resigned and will be staying home with Hayden. She always wanted to stay at home and raise the kid(s) and Hayden's potential medical needs in the future made the decision much easier. Who better to take care of him day in and day out than Kelsea! One less thing we have to worry about  with the boy.

Speaking of Hayden, he has been doing great. He is still such a happy baby. He smiles non stop and is so happy when he sees and/or hears Kelsea or I come in to the room. He has us trained. If we leave the room for a minute, he lets us know with his fake "cry" and stops immediately when we return! He is getting so strong and has gained so much control over his head and torso. Kelsea has done a fabulous job of working with him non stop throughout the day with his modified tummy time and therapy. He still has his bouts of vomiting and is only eating, on average, 16-17 oz/day, but he is growing. He surpassed the 11 pound mark over the past day or two and weighed in at 11 lbs, 2.5 oz. He is still way below the curve, but that is ok. Dad is becoming more comfortable with this fact every day. Kelsea might not agree with that last statement, but I think I am! I am obsessed with tracking how much he's eating and charting all the data, but that is ok! He has an appointment with Dr. Warner next week and we want Hayden to gain as much weight as possible.

Dr. Warner said we would set a surgery date at the next appt. Well, that appointment is a week from today and we are excited. We are looking forward to not having to change his dressing every day. We are looking forward to hopefully getting rid of some of his gas and digestion issues. We are looking forward to seeing him roll over completely instead of getting stuck once his O hits the floor!

With his possible upcoming surgery, we really don't know what to expect. We have a thousand questions and can't wait to hopefully get them answered. We hope he won't have to spend too much time in the hospital, but we also know that is a possibility if he struggles with breathing and feeding post surgery. We are both members of the Mother's of Omphaloceles (MOO's) group on Facebook. Since I am not a "mother" and I post information and ask questions on there sometimes...I still think we should change the name to Parent's of Omphaloceles (POO's!!!!). The families we have "met" through this group have been unbelievable. There are so many people we feel truly blessed to have crossed paths, even if it is over the Internet. Parents, and even adults who had Omphaloceles themselves as babies, are able to share information, support, and lift up each other. It is truly a great thing. However, when it really comes down to it...when you are trying to get information regarding your child and his Omphalocele, there still really isn't a lot of research readily available. The main problem I have come across is that no two cases of Omphaloceles seem to be alike. There are so many different varying associated anomalies and problems that it is hard to compare and contrast cases/children/symptoms.

However, I was able to meet a mom from nearby who had a son born at Barne's with a giant Omphalocele a couple of years ago. Her son had similar issues as Hayden does and Hayden seems to be on the same path her son was, including upcoming procedures and the same timeline. It was so nice to talk to her the other night and hearing her say her son is "perfect" and "as normal as can be" was such a relief. We have met other families who have had similar cases/symptoms as Hayden but different hospitals and doctors and we have met those who have had similar doctors at St. Louis Children's, but different' symptoms and issues. It was very informative and comforting to meet somebody as close as they were.

God has a way of putting people in to your lives at just the right time, doesn't He? He knows just who to put where and when they are needed. The connections He lays before us continue to amaze me. Kelsea and I continue to be so thankful for what we have and more importantly, for what He has given us. I read parents' posts on the MOO Facebook site and it puts things in perspective just how easy we have it. It is weird to think back to last fall and how scared I was of the unknown, but it pales in comparison to what so many people around us are experiencing right now. One story that really tore at me was a mother talking about how her baby had pulled off their gloves which allowed the baby to grab a hold of their breathing tube. They were able to pull it out so quickly and the baby went in to distress and couldn't be saved. I think about all the things that could have happened to us and Hayden and I thank God for what He gave us and pray for those who He has given different situations.

Our church family and my family are losing some great friends next week. I say losing, but that is not the best word to use. The plan that God has for them is taking them on a course away from Quincy. Jeff, Julie, and all of their kids have been such a blessing to our family and especially Kelsea. Julie has been such a dear friend to Kelsea over the past couple of years and has helped Kelsea, and myself, when we were down and questioning things. For selfish reasons, Kelsea and I, along with our church family don't want them to leave. However, we also know that their work in Quincy, is for the time being, coming to an end because God has said their work has been good, and they are needed (for whatever reason that may be) elsewhere. We hate to see Julie, Jeff and all of their kids go, but we know that the friendship is not something that will go away. I thank God for allowing them to stay long enough to give Kelsea strength in her time of need last fall.

They tried to help us with a first for Hayden. Before they left, they wanted to have Hayden go swimming in their pool. Even though it is a perfect summer time activity for a baby, all of the rain lately prevented the pool from warming up and it didn't happen. But...we have all summer!

The Thinker....stillll

First trip to......The Tower!!

Bath fun.

Bat time 2.

Such a sad and depressed boy!


Tucker likes me being home for the summer also.

Tucker's "Thunder Fort" during the storms this week!

Sunday, May 12, 2013

A Day for Kelsea

Happy Mother's Day to all of the mother's out there who are reading this. However, the biggest wish goes out to Kelsea. She has become the most amazing mother I know and I am so happy that God chose her to be Hayden's mom.

What Kelsea has been through and how she has responded over the past 16 months has truly been amazing and a blessing. To watch her hold, cuddle, interact, feed, and comfort our son is such an amazing thing. I know that giving birth to Hayden was a pretty spectacular moment in her life, but there is another one that sticks out that will forever be etched in my mind. I wrote a post about it Ready or Not on 2/15/13. Watching Kelsea spring to action that night to comfort Hayden and support him was such an amazing thing. I see how much she means to him now as he is completely infatuated with her. When I hold him, if she walks by, he will follow her with his eyes until he can't see then he jerks his head around to watch her walk out of the room.

It is great to see the progress he is making. He is deliberately grabbing things, holding on to (and not wanting to let go!!!) many things, responding, smiling, rolling from side to side (still can't roll over because of his "O"), and doing great with his "tummy time" mat. Kelsea has been great helping him with his modified tummy time. He is getting so strong.

Growth Chart App on Phone
After his hernia surgery a month ago and subsequent hospital stay a few days later, Hayden was battling croup as well as his normal breathing and feeding issues. We think we finally beat the croup, but the feeding issues hung around. However, they were different. He was hungry, but anytime he tried to take his bottle, he would suck 2-3 times and then violently shake his head and start crying. We're pretty certain this is related to his two front lower teeth starting to come in. It has impacted his feeds and he doesn't really have a normal amount he takes in a day. Sometimes he will eat 1 oz and other times he has taken 5 oz. Most of the time it is closer to 3 oz. Everybody keeps telling us I shouldn't be concerned about his weight because as long as he is growing and he is having wet diapers and bowel movements, then he is healthy. However, I don't like seeing that his weight is so low according to the charts. I don't like it, but I have accepted it and Kelsea and I are both so thrilled with every oz he gains. As of yesterday, he was 10.47 pounds!

We head back to St. Louis on June 7th for a follow-up appt. with Dr. Warner. It was originally supposed to be the following Friday, but he is going to be out of town. They wanted to move it to a later date, but was able to talk them in to getting us there a week earlier. We are going to possibly discuss and set-up a date for Hayden's surgery so I didn't want to push it back further. We are so excited for the possibility of having it this summer, but also scared knowing that we might have to start over on some things and this could also cause a new and different set of problems.

The reason Dr. Warner wants to move it up (I might have posted this several weeks ago after our last visit) is because his abdomen is getting so big and things are moving back inside. His "O" has changed so much since he was born. My goal is to sometime soon have a post dedicated to his "O" and how it has changed over the past 4 months.

Hayden has really been doing great. We had a rough go at it the first month and a half we were home, but since then, our biggest concerns have been related more to normal baby stuff and first time parent things!

We continue to thank you for your prayers and generous support and love that our friends, family, and even strangers have shown us. I was finally able to find the PDF version of the Herald Whig story. If you weren't able to see it, you can read it by following this link: Hayden's Herald Whig Story.

From Church last weekend

From Church last weekend

Tuesday, May 7, 2013

Quick Update

Even though I knew I was way overdue for an update (I think about it every night, but other things get in the way!), I didn't realize it had been over two weeks. I will try this weekend to get a detailed update with some pictures, however tonight, it is just a quick run through.

Hayden finally seemed to get past his croup and started eating better and gaining weight. We have surpassed the 10# mark and tonight were at 10 lbs, 4 oz!

His O continues to amaze me. We are just about a half dollar away from being completely covered in skin and it continues to change shape daily. His abdomen is getting absolutely huge! He really looks kind of funny with a really wide abdomen now but still a small chest. He has continued to grow in to his happy, care free personality, making mom and dad laugh and smile non stop because that is all he seems to do. Well, until his teeth start bothering him. Yes, he is starting to have a tooth push through.

I get caught up trying to research the difficulties children and babies with an omphalocele have such as feeding and breathing issues, and trouble gaining weight, as well as options for surgery and future outlooks, that I forget that we have our own little "normal" baby growing leaps and bounds every day. I have to remind myself to stop thinking about his O so much and concentrate on the fact that he is a happy, healthy, growing little boy!

Kelsea and I seem to be doing well with alternating jobs on different days and nights. She has helped me out when I have been tired and I would like to think I have done the same for her. We still have our struggles, and our disagreements over stupid things (I know right, who would ever imagine doing that) but we continue to thank God daily for what He has provided us. Even though I (we) am a little scared still about what the future may hold (on many fronts), I/we know that God didn't bring us this far just to kick us out of the car and tell us to find our own way home. He continues to show us the path, day after day.

Pictures and more to come this weekend....