Lighting the Way

I just had to change the title because in my sick stupor, I forgot I sent a short update yesterday on his poop!


Well...since I have been sick since Monday morning with the stomach flu and have seen Hayden for about 30 minutes total in that time...including using Skype twice with my parents, Kelsea has had to fill me in on the updates. It seems like we finally turned a corner yesterday!

The following is also from Kelsea since I have been in bed for 2.5 days...

Isaiah 42:16 
16 I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.

My dearest Hayden,

                It is hard to believe that you have been with us for a little over eleven days now.  I can still barely wrap my head around it.  You are so perfect in every way … Already you have taught me to love in a way that I never knew possible.  For four and a half long months, I worried about you so much.  In the beginning I remember being very scared for you, and selfishly, scared for me.  I had already lost one baby, and was so scared that I was going to lose you too. I loved you so much from the minute I found out you were growing inside of me.  I had prayed for you (well, I didn’t know it was going to be YOU), but I had prayed for a child for so long, and yet, somehow, I was still skeptical that God would answer my prayers.  Although I knew it wasn’t true, a part of me still felt like, because of the sinful past I had lived, I didn’t deserve you. Thankfully, I know that we have a loving and merciful God. I know this because he gave me you …

                I am so grateful for little, six pound, two ounce YOU.  At our first appointment, when we found out about your omphalocele, the doctor was almost apologetic … Daddy and I could tell from her voice that she was very worried about whether or not you would be able to “make it” in this world.  We were scared, but also hopeful … and so began our journey of prayer and dependence on God to see you safely into the world.  We made many, many (for once, this may be an under-exaggeration … no “Kelsea factor” required to account for my propensity for making up or over-exaggerating numbers) trips to different doctors, some of whom were cautiously optimistic, about your odds, and some of whom were not so much … We did lots of reading, most of which scared me more than it helped.  Luckily, you were blessed with a Daddy who has big shoulders and could “handle” most of the tough stuff, while I tried to focus only on stories of other “O” babies who had positive outcomes.

               I noticed that my prayers changed over time as God worked in my heart.  I remember nights of sobbing and crying out to God that I just wanted to get to see your little face, even if that was all I got to do.  Then, came nights of sobbing and praying that I would get to touch you, or at least hold you if the “unthinkable” were to happen.  Then, as we continued to pray, and you continued to clear each hurdle along the way, God began to allow me to see the possibilities of all that you could be.  First, we saw a two hemisphere brain, then a four chambered heart, a clean bill of health on the chromosomal testing, ten non-sandal footed toes, arms and legs of the perfect length, no cleft palate, and eventually, a heart that showed no signs of defect.  You passed each of your non-stress tests (NSTs) and   biophysical profiles (BPPs) with flying colors, and as the days and months passed, God revealed to me in my heart that you were going not only to make it, but to thrive.

                Then, near the end of our journey, I read some posts in a Mothers of Ompahlocele support group about “O” babies who appeared to be perfectly fine, but whose lungs just couldn’t tolerate the pressure of their “O” and were unable to survive outside of the womb.  I shared with the ladies of Columbus Road Church, who attended your baby shower, some of my specific worries (mostly about lung development and you being able to breathe). Our church held a special prayer service just for you (and we know that many, many other congregations and individuals had also adopted you in prayer).  We prayed for very specific things, a full term birth (we ALMOST made it … one day shy), a smooth surgery for both mommy and you, a big scream right when you came out (thank you very much for complying!), that we could see you, touch you, that you would be stabilized, that we would be able to hold you, to feed you, that you would be able to digest food, and the list goes on.

                The most amazing part of it all is that within 48 hours of your birth, pretty much every specific prayer request on that list had been answered.  Is God good or what?  You came out screaming, and pooped while doctors were still stitching me up.  You grasped mommy and daddy’s fingers before being whisked away to the NICU, and  you required oxygen for only a few hours your first night.  Mommy got to see you and touch you about 8 hours after you were delivered and got to hold you the very next day.  Daddy did the most precious and selfless thing ever  by waiting to hold you so that I could be the first.  He knew how very special this moment would be for me.  As I sat in my wheel chair, watching and waiting as the nurse attempted to “free” you from all of your cords and wires, the anticipation built, and I became overwhelmed with love and joy.  I just could not believe how gracious God had been to grant me this, my wish to hold my son, so soon after he was born, when all the reading and research I had done had prepared me that this might not happen for a very long time.  But as I have learned, the statistics don’t matter when God has a plan.  By the time the nurse put you in my arms, my lips were quivering and the tears were streaming down my face.  You were the most beautiful thing I had ever seen. 

                Imagine my surprise and elation again, when, before I had even been discharged from the hospital, the nurse asked if I wanted to try some skin-to-skin time, then again, when the lactation consultant came and offered that I could try “taking you to breast”.  She couldn’t even believe it.  I think she went to check with three or four different doctors before we began because she just couldn’t believe that they were going to let a baby with an omphalocele try to nurse so quickly.  “They’re usually just so sick,” she had told me.  But not you … because God had his hands on you.  He made you so special.  The first time I nursed (well, attempted anyway … you had other plans for a lazy afternoon nap), I looked down and thought to myself how beautiful you were and how your “O” and I were designed to fit perfectly together like a puzzle, your belly right between my  boobs ... (Am I allowed to say that on here?)  But it’s true.  We were a perfect fit.  You nuzzled right up and fell asleep. 

                Hayden, my precious child, I cannot explain to you the depth of my love or devotion … God made you so perfect and so special … Not just any kind of special, but a one in ten thousand kind of special.  You are so loved by so many, but by none more than your mother (your father might disagree, but that’s okay … I’ll let him think that he’s right … I have to do that every now and then.)  As my mother put it in a letter that she wrote to you, back before we knew exactly what your life would be like, “many people in this sinful world might think that because you will not be “perfect”, you would have little or no value.”  By the grace of God, your Mommy and Daddy knew differently.  We had decided early on (decided really isn’t the right word, because for us, it was never a choice … it was simple, immediate acceptance), that we would love you and accept you regardless of your abilities or disabilities … and while we know you still face many challenges in the days, weeks, months, and years ahead, we are so blessed that you have renewed our faith in a gracious, merciful, loving God. ).  You are a light in a dark and sinful world, a light that shines brightly and gives hope to so many who desperately need a savior.  Keep shining little man.

All my love,

Your mother

 

 

When the stars came crashing down
In tiny pieces to the ground
I was all alone down here
Trapped beneath the atmosphere
Then I, thought somebody called my name
I spun around and caught a flame
I gave into a God I didn't know
And now everything is falling into place
A brand new life is calling and I owe it all to grace

It's so much brighter living in your world
Savior what you did for me
You gave me something I want everyone to see
When we stumble and it all goes wrong
Only you can make it right
So I say oh oh oh oh oh
I'm learning to be the light
whoa, whoa
I'm learning to be the light
whoa, whoa

When a heart is cold as ice
You can't melt it with advice
No one wants to listen to
A list of things they shouldn't do
So I build a city on a hill
And I light a candle on the sill
Knowing you'll be always knocking at the door
Oh God I just want to love on everyone
All I have is yours to give so let the people come

It's so much brighter living in your world
Savior what you did for me
You gave me something I want everyone to see
When we stumble and it all goes wrong
Only you can make it right
So I say oh oh oh oh oh
I'm learning to be the light
whoa, whoa
I'm learning to be the light
whoa, whoa
im learning to be the light

that makes the shadows hide
the light that breaks the curse of pride
the light that takes the weary in it's arms

When it all came crashing down
There was only darkness all around
But in the distance I could see
A Flame

It's So much brighter living in your world
Savior what you did for me
You gave me something I want everyone, and I mean everyone to see
When we stumble and it all goes wrong
Only you can make it right
So I say oh oh oh oh oh
I'm learning to be the light
whoa, whoa
I'm learning to be the light
whoa, whoa
I'm learning to be the light
whoa, whoa
I'm learning to be the light
whoa, whoa
I'm learning to be the light

Poop and More Poop!

Well, I can add another "Downs" to the post from two days ago. I am down with the stomach flu. I headed to the hospital around my normal time yesterday morning...5:30 so I can make it there by rounds. On the way, my stomach didn't quite just feel right. By the time I got cleared to go back into the NICU about 6:00, I was sweating and knew something was up. I didn't want to do it, but I gave the boy  a kiss on his forehead and turned around and headed home. Probably the toughest thing I have done in a long time because I knew what was coming and wasn't happy that I was not going to get to be around Hayden for awhile. Boy, did I ever get sick. I have been awake for only about 3 hours in the past 32 hours. Let me tell you....being stuck at the Ronald McDonald House, in bed, with no tv is not very fun!

However, there are way more "Ups" that could be added that, make me sad I missed them, but filled me with tears of joy as well!  This morning, Hayden had his first "transitional" non-meconium poop which means his digestive system is working! Kelsea said she had just changed a diaper when she heard an explosion! She also just told me that this afternoon was the first time he breastfed with her, instead of falling asleep, and then pooped again! On one hand, it sucks big time that I'm stuck here missing out on these, but at the same time, I feel like God made things better. Today was such big step forward!

Ups and Downs

Ups: Hayden's pooped without a suppository yesterday morning!
Downs: He hasn't pooped in 34 hours.

Ups: After fighting a fever above 38C for close to 72 hours, Hayden is finally back within the normal range at about 36C.
Downs: I have no clue what that means because I don't know how to convert using the metric system!

Ups: Hayden's weight is up to 2590 grams, which is the highest it has been since he was born at 2770g. On the morning of the 20th, he had dropped to 2580 grams, with his lowest weight being 2415g on 1/23.
Downs: I have no clue what that means because I don't know how to convert using the metric system!


Ups: Having the great opportunity and experience to stay at the Ronald McDonald House in West County. What an wonderful place. It is 2.5 years old, was the 300th RMH in the nation, and it is truly an amazing place filled with wonderful volunteers and great dinners.
Downs:  Getting used to "community" living where people don't pick up after themselves and some people think running a bowl under the sink and using their hand to swish water around it for ten seconds is cleaning the bowl!

Ups: Getting up early and being able to start the coffee at the Ronald McDonald House.
Downs: Getting up early to start the coffee, trying to help a guy who speaks zero English make coffee and then realizing he wasn't using the coffee maker to make coffee. He was using the coffee pot to put a packet of hot chocolate in, put cold water in the pot, swishing it around, then set it on the coffee pot warmer to heat it up. I tried to help, but couldn't bridge the communication gap. I let that one go and opted for a Mobil On the Run coffee on my way to the hospital.

Ups: Seeing my boy smile and make cute little noises.
Downs: Leaving him at night, even though I am only about 15 minutes away and I KNOW he is in excellent care.

Ups: Spending some excellent, quality time with my wife.
Downs: None here!

Ups: Being able to show God's love to our "next door neighbors."
Downs: Absolutely none. We have been so blessed with God's love and mercy. Our friends and family have lifted us up in so many ways. It was so amazing to be able to do that for somebody else and let them feel God's love.

Ups: Seeing my parents transform into grandparents. It has been amazing how God has been working on their hearts and turning two already amazing/wonderful people into even more amazing people!
Downs: Kicking them out of the NICU when they are visiting. They love Hayden so much, it always hurts to see those you love "hurting." They are not really hurting, they just don't like not being around him, seeing him, and hearing him.


Our life down here is like a roller coaster. As I said to a gentleman at breakfast at the RMH this morning, this morning was such a great day! Hayden's temperature had finally gotten back down to the 98.6 area and his weight is back up to 5lbs 11oz (it pays to have a conversion app on your iPhone!!!) Tomorrow will probably be a day that is a struggle. However, we continue to thank God for what he has done for us, even when  it involves things that we wouldn't choose or ask for ourselves.

I am truly amazed at the people who are following, praying, and sending love to Kelsea, Hayden, and myself. My jaw hit the floor when I looked at the stats and saw how many people have viewed the different posts on this blog over the past 24 hours. It has truly been a humbling experience. One that we are still learning how to deal with and accept. We don't always get to thank everybody for your kind words or gestures, or respond to your e-mails, or your Facebook posts. However, know that we are seeing them, Hayden is seeing them, and they are lifting us up every minute!

Wait or Weight

So after waiting for 6 days, Kelsea FINALLY got to see his "O" today when surgery came this evening to change the dressing. She was intrigued. Not sure if she liked it or not, but she was glad she was here for rounds first thing this morning (not really...she was kind of bored and wishing she was still asleep) and glad she got to see the surgeons. She is changing his diaper right now and he is getting ready to get weighed! He hasn't pooped in 36 hours, but they won't worry about that until he hits 48 hours. He has kept his food down (hasn't spit up) but probably hasn't gained weight. He did have a VERY good afternoon. Even though he fought a fever, they fought it with Tylenol and his breathing was more controlled. We will call that a successful day! Of course, as I'm typing this and Kelsea is talking to him, his heart rate dropped several times in real quick succession. Even though the doctors told us not to worry because it happens and he recovers on his own in about 3/5th of a second, it still cares the snot out of this new daddy! Well, unfortunately his weight was down again, but I guess that is expected since he is not eating! Still praying for digestion of his milk.

Late Night Phone Calls

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Yesterday was another long day. I was here at 6:05 and made it just in time for rounds! It is not important for me to be here because I don't really make any decisions, but it is important to me because I want to know what's going on and ask the doctors questions. Plus, it is quiet, peaceful time in the morning when there are a lot of people around.

I am starting to learn all of the nurses' names and have my favorites, and my not so favorites, however I have trouble remembering which nurse was here on which day. That is another reason why I like being here first thing in the morning...so I can keep track of information and data in my personal notebook!

Hayden struggled yesterday with comfort in general. The night nurse from two nights ago was pushing for Tylenol because she felt Hayden was uncomfortable the night before and he was running a fever. He looked uncomfortable, but he wasn't really fussing. Hayden is not like a normal baby. He rarely cries. However, he does kind of make the cutest, most pathetic little whimpers!

Hayden also got to hear one of daddy's favorite songs last night: 10,000 Reasons by Matt Redman. I wrote a previous post about this song which you can access by clicking here.

If you are new here and you would like, you can go back to the beginning by going to the "Blog Archive" to the right. If you click on the triangle next to 2012, then do the same for September, you can click on "Omphalo What?" to read about where this journey started. "Coincidence or God's Divine Plan" and "Omnipresent or Just Hanging Out in the Heart Station" are two pretty powerful entries if you would like to spend a little more time procrastinating and not working today!

As Hayden was watching his video, as I said in the earlier post, he is reasons # 10,001!

Kelsea and I left last night around 8 o'clock and headed back to the Ronald McDonald house. We were ready for a nice dinner and a relaxing night. Had a nice conversation while eating dinner with a guy who had a baby girl at the NICU at Mercy Hospital. She weighed 1 lb 4oz when born at 23 weeks. It is such a humbling experience.

I finally was able to sit down and turn on the tv for the first time in a week! Wouldn't you know, within about 3 minutes, my phone rang and the number was "unknown." Before answering, knew this was from Children's so I jumped up, turned the tv off, and started to head towards the room. It was a Resident from Neonatology and she wanted to let me know that Hayden's respiratory rate had increased and his temperature was high. This was something he battled all day yesterday, and his respiratory rate, at times, would jump up. However, it would quickly lower. His heart rate also rapidly dropped several times throughout the day, but the doctors said this can be any number of things and many babies do this all the time, we just don't know it because they aren't hooked up to a gazillion monitors!

Anyways, I was freaking out because that is not good when the hospital calls you at 10 o'clock at night! However, she wanted to let me know that they started a couple of antibiotics that would treat a wide array of things, did some blood work and cultures, chest x-ray, and gave him some Tylenol. I thanked her for the call and headed up to the room to turn in for the night. I was glad she called me, but at the same time, I was freaked out by the call. I don't want to think about it, but Kelsea and I will now have clothes in waiting every night in case we get a call that we need to quickly get to the hospital in case there is a problem.

We arrived this morning (Kelsea got up early!) right before 6 a.m. and when Kelsea called back (the NICU is a secure/locked area and you have to have the door unlocked for you) and they told her she could go back and "kick out" grandma and grandpa! As she said that, I was writing our names down in the log book and saw mom and dad had signed in at 4:30 this morning. I had a feeling they were going to come in over the night...I was right!

Doctors are doing rounds now. Hayden's temp is still high, but doing better. Ok, Neonatologist just came by and Hayden's temperature was back within normal range. The doctor's reassured Kelsea that things are good and there will be ups and downs, but it was good for her to meet the doctors on the rounds. She still hasn't been able to see Hayden's "O" when surgery comes to change the dressing...she missed it by about 30 seconds yesterday...which by the way, it is looking good. Skin is starting to grow up the sides and it is starting to harden. We are going to go get some coffee/breakfast and let grandma and grandpa spend a little more time before they leave town!

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 away....it 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!!!

Sleep

Just a quick update. Kelsea and Hayden are doing well. She was discharged today and we are in a "sleep room" at the NICU. It's a bed and its good enough to sleep in! It's 8:45 and I'm already there! I hate to leave the little guy.... But he's in good hands. Will have a better, more in depth update tomorrow!

So the plan was...

Kelsea had her final NST and dr appt on Friday. Well, come to find out, God had a few other things planned for us as well!

I wasn't even going to come to St. Louis yesterday, but Kelsea wanted me there for her interview with Fox 2, and I really didn't want to miss his final appointment. I hadn't missed on yet, so why start now.

Kelsea's NST went as planned and without incident. After her NST, we waited on the MFM appointment. Her blood pressure was high, but not a concern to the two of us because she had been up moving around and packing all morning. She was moving from the Haven House in Creve Coeur to the apartment closer to the hospital. The doctor didn't like her blood pressure and stated he would recheck and if it was still elevated, send us to labor and delivery to have it re-examined. Well, that immediately put us in a "worried" state because it was not what we had planned on. We had a 2 p.m. interview with Mandy Murphey from Fox 2 out of St. Louis, and we couldn't miss it because I wanted to get ahead of traffic so I could have one last night to play with the dog.

Well, her BP was still elevated, so we got to get a free trip - thank you Tryone - for the experience - to the completely other side of the hospital. As we left the doctor's office, our doctor told us Kelsea would not be leaving the hospital pregnant. Kind of funny, but not what we wanted to hear.....I'm beginning to sense a common theme here!

He also reassured us that we would be admitted to the hospital and would probably deliver the following day, on Saturday. We were checked into an assessment room and within a few minutes, Dr. Cahill (who Kelsea had personally requested to deliver Hayden safely to us) came into the room. This was quite a surprise because we were told Dr. Shanks, who we equally loved, was on duty. Kelsea's BP was still elevated and Dr. Cahill told us she didn't feel safe, considering the circumstances, of waiting until Monday, which was our scheduled surgery date. Kelsea asked what time she was thinking for tomorrow (Saturday) and Dr. Cahill responded "I was thinking more like 2 hours! EXCUSE ME??? No, no, no. I'm sorry, that doesn't work for me. I have to get home and let Tucker out. I left at 6 this morning and he is going to have to go potty!!! And we have an interview at 2. Sorry, this just wasn't going to work! Dr. Cahill told us that the news crew had already been alerted and they were enroute. She said she could wait a little bit if Kelsea wanted to, but, she felt it was better to control the situation and deliver him when certain people were definitely available instead of waiting for Kelsea to have more problems in the middle of the night and then have to scramble to gather everybody.

I again stated that I was good with whatever she felt was Hayden's best interest. We came to ST. Louis and Barnes for a reason and I wasn't going to start questioning doctors right now! Bam.....the show just got stated. IV's, ultrasounds, paper works, consents, phone calls, text messages, and prayers.

This was  my test message to my dad at 11:50 yesterday morning. This was en route to the Labor and Delivery side of Barnes "Kelsea's BP is high. Taking to hospital side now to do blood work and monitor. Unless it goes crazy, noting will be done today."

12:09
Don't worry yet. We're good and everything is fine. Will text once we get her checked again."

12:23
"Come to St. Louis. Drive carefully, but it WILL be today."

I started making phone calls, texting people, trying to get things done before he arrived. Kelsea's parents were 4.5 hours away and they weren't going to make it. My mom was in town and was enroute to the hospital and dad was 209 miles away. He wasn't going to make it either to our 2:30 estimate.


Well....as we got closer, and I got more panicked, (not because I was worried, I was freaking out....I temporarily forgot to rely on God during my time of need and weakness), and I REALLY mean PANICKED,  we also began to realize that the mocha Kelsea had from Panera on the way to the hospital was going to buy us some time. The interview came and went, and Kelsea was whisked away to do her spinal. I was then left to somehow manage a way to get dressed in the "clothing" this provided for me.

 

About 20 minutes later, which was full of mom making fun of me in my outfit, I was able to quickly get a pair of scrubs, change, and then be beckoned to join my wife in the O. R. At the exact moment, Dad made his way down the hallway to join my mom. I entered the O.R. to 21 different faces looking at me, including Fox 2 and was told where to sit. About 5 minutes later, Dr. Cahill told me to get my camera ready, then stand up. I stood up, snapped two pictures and froze as I stared at the most amazing sight I have ever seen. At roughly 3:54 p.m. on 1/18/13, Hayden Owen shocked the world at an amazing 6 pounds 2 ounces and 17.9 inches long!

We got to hear him scream right away, which is what he is doing in this pi\cture above. However, shortly after, he had breathing difficulties and a tube had to be put in. However, by the time I got to the NICU around 8 p.m., he was already doing better breathing. He was down to 21% oxygen, which meant he was breating room air (I believe) and within 3 hours, they had removed his breathing tube. As of right now, the only tube he has in is his stomach drain. They will probably put a feeding tube in tomorrow to try and start feeding.

Kelsea is doing awesome. Especially since she was able to hold Hayden tonight for close to an hour and then had close to another hour of "skin to skin time" or "kangaroo" time. It was an absolutely amazing site to see my wife holding Hayden close to her. He didn't make a peep the entire time. It also allowed us to get a quick picture of the three of us...our first one!

As expected, it has been an emotional roller coaster ride these past 30 hours. However, Hayden is doing so much better than we ever could have imagined. We want to thank everybody for their prayers and thoughts over the past four months. We couldn't have done this, nor would Hayden be where he is today, without all of you.


I was able to get a few hours of sleep last night and I am ready for bed now. My goal this morning, as well as most mornings, is to be around when the surgeons and neonatologists make their rounds. It is tiring...and I've only done it for one day, however, it is so comforting sitting next to my son, listening to him make little noises, looking as peaceful as he does!

Home

As Farmer Fran/Old Cajun Guy from "Joe Dirt" put it, Home is where you make it.  (Sorry in advance for the crude language!)

So Kelsea has been at Haven House St. Louis for a week now and it is such a wonderful place. Mom has been staying with her and they each have their own room! came down to St. Louis yesterday and mom traded places with me, after going to our dr. appointment to see the ultrasound first!

As ALWAYS, Kim did a great job of showing off Hayden! He has grown. Not a ton in the past three weeks, but some. He was estimated at 4 lbs 5 oz. This is up from 3 bls 8 oz three weeks prior. Again, these are purely guesses because the three measurements they use are head, abdomen, and femur. However, since his abdomen has some issues (and is essentially not there), the measurements are skewed. His head circumference and femur measurements both measured at 36 weeks (which is right where he/Kelsea is today) but the measurements on his belly bring those down. Whatever his measurements are, we were thankful to hear he gained at least a little over 3/4 lb.

After the ultrasound, Mom left and we went to our MFM appointment. Another meeting with Dr. Shanks went well. It is funny, because he knows I ALWAYS have a list of questions! However, he does such a great job of answering them and making sure we are comfortable. He set up an NST for Kelsea for next Tuesday and Friday and then an appointment on Friday, so it looks as if all goes as planned, there will be no more ultrasounds. Next time I see the little guy will be in person! Because of a scheduling conflict, we missed our appointment with a social worker from the Children's. We were hoping to get the ball rolling on getting a referral to the Ronald McDonald house. However, we have plenty of time. Before we left the hospital, we also met with a representative from media relations. Fox 2 in St. Louis is wanting to do a special on Kelsea and Hayden. We have gone back and forth on this, however we both feel that this is just another thing God has put in our path and that this is a vessel that could be used to possibly comfort and give hope to others who are facing a difficult situation as well as spread a little bit of God's word and promises and how they are the ONLY reason that we are as hopeful and at ease as we are today.

We had a great meal last night at Outback Steakhouse. I had an perfect steak and Kelsea had lobster tail and scallops. Scallops.....eck!

We slept with the windows open....was about 55 degrees when I woke up at 7:30 this morning....very nice. Slowly cooled down all day. Raining here, but still too warm for snow. I think Quincy may be getting some snow/freezing rain right now, but we are not supposed to get snow until around 10 or 11 tonight.

Well, we just got back from dinner. On the weekends, food is usually brought in/prepared by families and/or local restaurants. Tonight, there was Chicken and Rice w/ broccoli, Tuna Casserole, or Turkey Tetrazzini. On the weekends, the food that is brought in is then split up into Styrofoam containers and labeled. They ask you to not open the containers to look inside  because that is obviously not the most sanitary thing! Well, we were the first down there tonight and I so wanted to look at the Chicken and rice w/ broccoli because I am not a broccoli fan, but I am a chicken and rice fan. I didn't look and chose the chicken and rice. Luckily, my smart wife chose the tetrazzini and she DOES like broccoli.....she was nice enough to trade!

I can't wait for breakfast tomorrow. We went to St. Louis Bread Co. last night after dinner for a coffee and we were admiring (drooling) at all of the wonderful pastries as we walked out the door. Well, on Sat. nights, St. Louis Bread Co donates all of their day olds.....when we returned from running errands today, the counter was full of items we dreamt about last night!

Speaking of running errands.....if I would have let Kelsea loose today, I think we could have had part ownership in Babies 'R Us after today. We had quite a few gift cards from showers (THANK YOU EVERYBODY!) and were exchanging some items we had received duplicates of and returning an item I had ordered online. Well, the first lady to help us did not do the best job of making us feel welcome at the store. That is the best way of putting it and we were there to spend an additional several hundred dollars on car seat/travel system and other miscellaneous items. In the end, after the first lady left working with us in the middle of the return transaction (not because of the way we handled ourselves....I'm not really sure why she left and made some other girl do it.....from her eye rolling and comments, I'm guessing it was due to her feeling that the difficulties she was having was somehow our fault!!) they did get the returns correct. If Kelsea wasn't 36 weeks pregnant, I probably would've let her go, but I didn't want her to worry about this situation and risk increasing her blood pressure. Quite a few of you out there know how Kelsea has a knack of getting things "comped" but she also has a way of having 99.9% of her requests/orders not arriving the way they were ordered!


Photo taken from the Haven House website!

On our way back, we got to drive up 270 and went past Mercy where my friend Nikki is currently in the hospital, for hopefully several more weeks, due to complications with her pregnancy, and then on to have Kelsea's toenails painted blue for Hayden's arrival!

We finally made it "home" and are sitting on the couch in the picture to the right. Whether it is Farmer Fran from Joe Dirt or it is Phillip Phillips, home is where you make it.

"Hold on, to me as we go.
As we roll down this unfamiliar road."

These are the first two lines in Phillip Phillips' song and I just know that this is what God is telling Kelsea and I. If we hold on to Him, even going down this unfamiliar road, He will make "this place" our home. Whatever that place is, whether it is Haven House, Ronald McDonald house, Quincy, or a van down by the river, we know we aren't alone and that He will ALWAYS be by our side.

8 days!

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Video

Oops....Kelsea let me know that the video of Tucker in my post two days ago was private and that people couldn't view it. If you're so inclined, this is one of the reasons why he is a crazy dog!

Best laid plans......

of mice and men often go awry (or something similar to that!).....or otherwise known as life!


Before I get in to it tonight, if you would like to be updated by an e-mail whenever I add a new post, add your e-maill address in the form below and then click subscribe. I tried it last week to see what it would look like, and I think you will get an e-mail asking for verification. After you verify your e-mail address, you will get an e-mail the following morning between 9 and 11 a.m. (Central I believe) that shows you I have added a new post.

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Photo courtesy of Stephen Cullo who is
an amazing musician and wondeful photographer!

God did it again last Thursday to us. Kelsea and my parents were less than 72 hours from leaving for St. Louis and the housing that we had planned on fell through. Dad got the call about 2:30 in the afternoon and there we were. I was sitting on the computer and I heard him talking. Before he hung up the phone, I grabbed Hayden's "Presidential" football (what I like to call my 2' binder that has EVERYTHING stored in it dealing with Hayden), went to the couch, and started looking through the "housing" section. Close to a hundred options were out there, ranging from hotels, to motels, to apartments, and hospitality houses.

This was something Mom and Dad had planned on and been working on for close to two months. However, God decided to remind us that He is in control and that His plans are much greather than anything we could ever devise. In a situation like ours, this would be one of those things that would push you over the edge. It would set many people into a frenzied panic. Kelsea had 13 friends coming over in less than 5 hours, the house was a mess, laundry needed folded, we needed a place to stay, and yet through it all, God was right there with us. As I had said the night before at the prayer service at Columbus Road, I can't imagine going through this without God by our side and on our side. After Dad and I both making a few phone calls, our nurse coordinators (Chris and Shannon) called us and started the ball rolling to get us referred to a place called The Haven House (Click on the link to view where Kelsea and Mom are currently staying).

This is a wondeful place for families living outside of the St. Louis Metro area who have to come to the area for medical treatment. It had been recommended to us by a friend, but we didn't feel we needed to look in to it because we had planned on staying at a duplex which is one of several private houses used for people seeking medical treatment needing long-term housing. God basically felt that there was somebody who was in greater need of the place we had planned on staying and you can't question that!

Kelsea and I had our "final" meal Saturday night and you would never guess what we had....... Of course we had to have a Jeff's Special, Margarita Stix, and an order of hot wings delivered from none other than Tower of Pizza! Did you really think it would be something else?

Well, Kelsea got a good night's sleep Saturday night. I told her this would be the last good night, not to mention full night, of sleep she would get at the house in a long time! It is still hard for me to imagine that in 12.5 days, Hayden will join us on the outside and next time Kelsea comes home, we won't be alone! I knew it was coming. For the past two months, after we decided Kelsea would go to St. Louis early, it seemed like this date was so far away. Even though I was ready for it to get here because I knew it mean we were taking the next step in this journey, I was scared and worried. However, right before she left, I got to do something that was one of the most powerful things I have ever done. Kelsea, my mom, my dad, and I all prayed before they left. I think that is the first time we have prayed together as a family (Sorry Kelle, we will get you next time!) on an intimate setting like that. I felt so close to them and God at the same time. I just know that He is looking after and going to take care of all of us!

So, for the past couple of days, I have come home to an empty house (not really...Dad was here last night and it was so nice to lay on the couch and watch the National Championship game last night with him...the couch was nice...not the game!!!!) and have dearly missed my wife and Hayden, but take comfort knowing she is only about 20 minutes from the hospital. It was also nice to know that other's are looking out for Kelsea. I have mentioned it before, but a former "player" of mine has continued to turn the table on me and is teaching, showing and reaffirming to me the love God has for us. Matt Cowman, and a special "friend" paid a visit to Kelsea and my mom today. They took them a wonderful home made pastry, good conversation, and prayer. It's truly amazing how God uses us to fulfill his plans. It also helps that I have been extremely busy planning for my sub that I will have when I am gone. Although it has taken over 30 hours the past 5 days, my sub has everything he could possibly ask for until March 8th! I mean EVERYTHING! All he has to do is open the binder, make a few copies, then stand and deliver. Hopefully my kids won't be like the kids in the movie Stand and Deliver! It has been stressful, but I know it will make my life (and his) much easier when he takes over. I do have to give credit where credit is due though. My "next door neighbor" and former co-teacher has helped me tremendously. It was Kim who gave me the idea to have everything laid out for the sub from when she had Cooper a few years back and also she helped me a ton these past few days filling in the holes of missing files I had from my thumb drive going down the drain 5 days before school started last August!

Even though Kelsea and I hoping to be home with Hayden WAY sooner than March 8th, I figured I would plan that long just in case. I'm just praying that God will make these plans go awry as well!


I couldn't find a place to "slide" this video in to my story tonight, but I couldn't just ignore it either...this dog LOVES the snow!

 

 

Selfish

There is one thing that separates us from God and that is sin. This picture I found tonight on the Internet is very similar to a picture that Bob Cowman drew for me probably two years ago. Man and God are separated by because we sin and the only thing that can connect the two is through Jesus.  Why do people sin? People sin because they are selfish. If we took our"self" out of the equation and were only concerned with how we could please others and God, then there would be no separation.

Tonight, Kelsea and I experienced many, MANY brothers and sisters in Christ take themselves out of the equation and put God and us at the center of their lives. Bob wanted to turn the normal Wednesday night prayer service into a special service for Kelsea, Hayden, and I because Kelsea is heading to St. Louis in four days. Two of those four days are filled with doctor appointments, dentists visits, eye appointments, massages (have to get some fun in the mix!) lists, packing, more list making and more packing!

I knew this was going to happen, but I have no clue how we are going to get everything together before she leaves. On top of that, I had planned to spend my whole break planning for my sub when I am in St. Louis. However, that has only panned out one or two nights! So, that is on my plate in about 25 minutes!

 
That is okay though because the past week and a half has been very enjoyable and spent relaxing with family. My parents and my sister Kelle and her husband Jay were all in town. It was good to see them and spend Christmas with them, but as always, the time went by way too fast. Tucker has also enjoyed this break, especially Jay and Hannah (Kelle's dachshund) visiting, as well as getting to play in the snow on a daily basis.

We were also blessed last week to be able to spend a night with some very close friends for dinner at the Patio. Their thoughtfulness was amazing and words cannot even begin to describe how thankful Kelsea and I are to have them in our lives. Tucker is also thankful that my best friend and his wife (Casey and Lisa) brought "him" a book! Be sure to check it out!

So many people have shown how unselfish they are and it continues to amaze Kelsea and I. We truly feel blessed that God has surrounded us with the friend and family that He has. At church tonight, Bob asked me to speak to everyone there and explain what was going on and what exactly Kelsea, Hayden, and I are dealing with. I was reluctant, because as I said in an earlier post (it's ok if you don't believe it...I'm not sure if I do either!!!) I don't like being the center of attention. It's hard to get up in front of a large group of people and talk about yourself. The bible states that believers should remove themselves from the equation and put God at the center. Only as selfish human beings do we sin. Bob asked Kelsea and I to make a list of specific requests that we had for our family over the next few weeks that we wanted our church to pray for. It was not an easy thing to do. Making this list made me feel so selfish and like I was doing something God didn't want me to do. I struggled a little discussing these items tonight, although tears weren't shed....at least too many! I desperately wanted to praise God for the things he has done for us. I wanted to ask our church family to pray for Kelsea's step-dad who underwent surgery today in Wisconsin to remove a tumor, I wanted to ask them to pray for our friends and family who are struggling to put God at the center of their lives and to follow his commandments, and I wanted them to pray for my friend Nikki Wright who has already faced too many difficulties in her pregnancy, yet her water broke a few days ago at 28 weeks.

However, Bob wanted this night to be about us and what the church could do for us. It didn't feel right being selfish and asking for things "for" us, but it was reaffirming and such an uplifting experience to see others put their selfish wants aside and put God, Kelsea, Hayden, and I at the center.