A Day in the Life - by Dalton

I'm so excited, Mommy is letting me write her next post! Yay! She wanted me to share with everyone what our day looks like. It's kind of crazy, hence the lack of postings. I promise she is not sitting around eating bon-bons, we stay quite busy! I will take you through what one of our typical days looks like. Here it goes!

Rise and shine! Good morning everyone. I usually fall back asleep for an hour after my 6 a.m. feeding. Mommy tries to get as much done during that time as she can, but I really don't like her to do anything without me in her arms so I try and wake up as soon as I hear movement. The picture you see here is me in my rock and play. It is the only thing I will sleep in and I like Mommy to rock it back and forth all night long. She likes the arm workout, I think. 

Mommy loves to bring me into her big comfy bed after I wake up. We like to lay and she sings to me. I smile and she goes crazy for some reason. I like to play the game where I pop out my binky then she puts it back in, she falls for anything! Ha!

Mommy puts me in this bouncy seat while she takes these really fast showers. The louder I cry once she starts the fastest she goes. It's very entertaining to watch! 

The Today Show is my favorite. While Mommy blow dries her hair and gets ready I hang out in my Boppy and watch Matt Lauer. I like to keep up with the latest news around the world. No big deal!

After Mommy is done getting ready, she likes to get me dressed for the day. I am finally starting to grow out of some of my newborn clothes, Mommy is so excited! I like to wear as many outfits as possible in a day so I try and mess as many up as I can.

Ready to go by 9:00 a.m. Record time Mom! I love looking at my guitars while in my carseat. My 6 fingers are going to be so helpful when I start my band. Okay, I am off  to the Doctors!

Here I am at my cardiologist. They put a lot of stickies on me so they can see how my heart is doing. I am such a good boy and I lay really still,most of the time. 

Mommy carries this cup with her and the more she drinks the more awake she is. I wonder if she will share?

Why do they keep taking my clothes off? Here we are at our second appointment of the day. Today at the pediatrician I weighed 8 lbs 14 oz. I gained my weight back! Yay! I love going to see  Dr.Reisman. Mommy asks him lots of questions so we usually end up spending lots of time with him and he doesn't even get frustrated with her. 

Even after a long day of appointments we still come home and do my exercises. These exercises are things that Mommy has learned from the physical therapists. I really like it when we do tummy time the best. 

While Mommy tries to get stuff done around the house, I like to play in my swing. I love watching the mobile and listening to the fun music. Usually they let me play in here while they eat dinner.

The most TRAUMATIC part of my day! I hate the bath. Why do I have to be clean? Mommy calls me a stinky boy after I dirty a diaper. I try to explain to her that this is totally a normal and it does not require a bath. She didn't listen. 

It's medicine time. I am the best medicine taker Mommy said she has ever seen. I have only spit it back at her one time. I have to take Zantac to help control my reflux, but other than that I have stopped all other meds! I am such a champ.

Looks like bedtime. This is my "I'm getting tired face". I'll go to sleep...for now.

Blessings

To say that this week has been overwhelming would be an understatement. I always knew being a Mommy was going to be hard but I had no idea how much work it would actually entail. I feel so blessed that my Mom was able to come up for the week to help me get on sort of a schedule and practice getting out of the house everyday. I never knew that having a newborn automatically adds 2 hours to your getting ready routine. So my Mom put me to the test allowing me to make mistakes and learn from them each and everyday. I only let the stroller roll away once! Who knew those things had brakes? Even with the every 3 hour tube feedings, middle of the night pumping, and mixed up days and night I can't help but count my blessings.
Several times this week I have literally found myself just sitting alone in a room with Dalton just staring at him. I am trying so hard to soak up every single minute I can with him and remember them perfectly in my head. If this experience has taught me anything it is to never take anything for granted because with the blink of an eye it could be all gone. I remind myself of that daily and that is what helps me get through those most sleep deprived times. Whether its a gassy smile, a giant burp, or when he grabs my hand to help hold his binky in his mouth- I love every single thing about him.
God has given us the opportunity to have time with Dalton and for that we feel so blessed. I often wonder why we were chosen to be given time with our son, when so many of our new friends were not. He could have easily been welcomed into heaven before we felt he was ready but he wasn't. We were given the chance. The chance to know nothing but love and become a man of God. His road ahead is long and will not be easy for any of us involved. Knowing that God is guiding us on how to raise him and what decisions are best for him, gives me the most comfort.
Everyone always says that God will not give you anything you cannot handle and when we found out Dalton's diagnosis I wasn't sure that was so true. I remember feeling like there was no lower feeling in this world, but giving my pain over to God helped me to overcome and remember that even with all the pain blessings are still possible. They may not be blessings that most people hope for but the little moments are our blessings. If there is anything that I can teach someone through all of this is to be thankful for what God has given you and if you put your trust in His plan you will find comfort even during your darkest days.
This song by Laura Story has helped me so much, I listened to it all through my pregnancy and even in the delivery room. When it was on in the delivery room, Jonathan and I prayed for the strength for whatever was about to come our way. We knew that no matter what our outcome we had been blessed to have 9 months with Dalton inside of me. It has been since then that we have been counting our blessings by the minute and being thankful for what we ARE being given. It's hard not to think about the future and it seems pretty daunting at this point. But we are both learning to live for the moment and know that no matter how much we try and plan for, only God knows what is in store for us.

Here are a few pictures from Dalton's first week at home! Enjoy!

Laura Story- Blessings

Dalton's great Uncle Randy and Gigi

My monkeys.

Holding his binky.

Our little sock monkey.

Gigi and Dalton mastering the feed...without the tube!

Kalee and Matt came to visit!

Update: Week 2

Let me start off with a major apology. I have been totally MIA from the blogging world and keeping people up to date with what is going on. It has been a crazy 2 weeks and I am just now getting the chance to sit and get this all out. As of last Sunday it has been a whirlwind.
Dalton was admitted to the cardiac step down unit after 5 days in the cardiac ICU. Getting to the step down unit was a huge accomplishment. The most exciting part for Jonathan and I was the fact that we got to actually stay in the room with him while he was being monitored at the nurses station outside of our room. Walking into the hospital knowing that we were going to get to finally hold him and care for him was an exciting yet very scary experience. As we sat holding our precious little angel, every time anything beeped or if he struggled to breathe even once, Jonathan and I looked at each other with terror. We always said that we were going to be calm parents but that clearly went out the window. The first full day in the step down unit was absolutely insane. We had about 15 different appointments set up with different doctors, specialists, and therapists. I have never felt so overwhelmed with so much information. It was kind of a bummer because we didn't get to actually enjoy the day with him at all. The Doctors also made us put in an NG feeding tube. He can take his bottle, but he gets so exhausted that he wasn't intaking the amount of calories he needs to heal. I think that having us put the tube in was more traumatic for us than it was for Dalton. I also think the emotions of the exhausting day finally overcame us as we broke down while placing that tube.
That first night was by no means easy. I was also in excruciating pain and it seemed to only be getting worse by the hour. I continued taking my pain medicine and just pushed through the pain to do those feedings and stay up with him when he cried. We spent 3 days in the step down unit and they finally let us go when they felt we had earned our temporary nursing degrees. Having to learn to do everything on our own was overwhelming but we knew to get him home and start our life as a family it was essential.
Going home was a very exciting day and we were so excited to have our first night just the 3 of us as a family. The excitement turned to worry when my pain only got stronger and I started getting violently sick. I knew something was not right but all the Doctors had kept telling me it was just from the delivery and it would start getting better eventually. After a trip to the emergency room and a wrongly diagnosed infection I made an emergency appointment with my OBGYN. They were convinced it was from the delivery as well and said if I felt more comfortable I should go to the GI for the stomach pain. The 3 nights I was home with Dalton were the hardest of my life. Hearing my child cry and not being able to console him because of my own pain depressed me to no end. Luckily, I am married to the most amazing man ever and he did absolutely everything! I swear at one point he was feeding Dalton with one hand and holding my hair back with the other. I have never been so thankful for someone in my life. When I finally got into see the GI they looked at me like I was crazy for not being in the hospital with the amount of issues I was having. They admitted me immediately. Finally someone was going to do something to help me, and I couldn't have been happier. I was missing out on my son's first days at home and I was so angry. Not even knowing that he was going to make it to this point and then to not be able to enjoy it was driving me into a deep sadness. The first night in the hospital I stayed by myself and Jonathan stayed with Dalton. He had it all under control. I am not sure that a lot of first time Dads would have been able to handle everything that Jonathan did but he did so with grace and ease. My amazing sister in law, Katherine has also been such a godsend. She has helped Jonathan and I with so many nurse questions and watched Dalton when we were trying to get all of my health stuff figured out.
They started running tests the second I arrived and continued through the night. No answers. It was so frustrating! Two days later they ran a test and finally discovered an ulcer the size of an orange in my stomach. All of the pain medicines that they kept giving me were basically burning a hole in my stomach and causing the two weeks of pain. When I came out of sedation from the procedure the first thing I asked was if they found anything. After hearing the nurse tell me they did see something I was elated. The Doctor said she had never seen someone so excited about having an ulcer. I had to explain to her that I was just excited to know that this wasn't normal and I wasn't crazy. It felt awesome to finally have answers and know soon enough I would be getting home to see my baby.

We want to thank everyone for your continued prayers and support for this journey ahead. Our path is unknown but one thing is for sure that God has a special plan written for our little boy. God knows every fiber of his being and for that we are so thankful. Being reminded by the geneticists of the problems Dalton will face makes me only want to pray harder for him to prove science wrong. He has already defied so many odds and I truly believe he can continue to do so in his life. Please continue to pray for our strength to care for our special angel and may he only know love in his life.

Trying to sleep whenever I could.

Dalton's big boy bed in the step down unit.

Jarad and Jennie came to bring us dinner and meet Dalton.

I may or may not have been freaking out here.

Daddy driving home.

First diaper change in his new room.

Lyla and Aunt Katherine have come to play lots. Lyla loves "her baby".

Uncle Adam enjoying some quality time.

Daddy giving me a bath. I liked it.

Sort of.

Defying the Odds

I believe in miracles. If you had asked me this before I might have said that yes, they were possible but I have witnessed more in the last week to make me able to say that I am a firm believer. Dalton's surgery on Friday morning went off without a hitch. It was the most nerve racking 4 hours of my life, but when the surgeon came out to the waiting room to tell us that the surgery was successful and Dalton was doing well it was the most amazing feeling ever. We burst into tears, our prayers had been answered. No one knew how he would handle it considering the small size of the left side of his heart but he took like a champ. An hour later we were allowed to go back and see him in the CICU. It was not easy to see him hooked up to even more machines and lines coming out of him every which way. The breathing tube was the hardest, but watching his little chest move up and down gave me comfort knowing at least he was breathing. They warned us that when anesthesia started to wear off that he would get the shakes and it really scares parents. Understood. We decided to go home and try and get some rest. TRY being the key word.
I have been in a lot of pain since the delivery. And the pain was only getting increasingly worse, not the other way around. That night I was violently sick and we decided to go to the ER. As I was writhing in pain I kept thinking to myself, even though I am unable to pray right now for my son's recovery I know somewhere on this Earth someone is. It was such a comforting relief to know that for 24 hours our son was being prayed over.
Well, it turns out I have a bad infection that is causing all this pain and really I was making myself sick by continually being on the go, back and forth from the hospital. As I laid in the hospital just begging for an IV to take home with me, surprisingly they didn't go for it- I counted down the minutes to when I could come back and see Dalton. Jonathan's phone rang and it was a nurse from the CICU telling us that they were able to take out his breathing tube that morning. We were shocked! We were praying for a speedy recovery but this was mind blowing. This news just pushed me forward as I signed the discharge papers and headed home to sleep for an hour. By the time we got to the hospital they had taken out his foley, the drain line from his incision, and his arterial IV line. He was kicking butt and taking names. The nurses were as surprised as we were. While we were sitting there they told us that they were going to try and give him a bottle. I explained that the Doctors during my pregnancy had told me he would be unable to feed on his own and he would no doubt be on feeding tubes. The nurses said they had been given the okay but told us not to be discouraged if he was unable to take it. Mind you this is 24 hours after major heart surgery on a 4 day old, we weren't expecting much. The nurse handed me the bottle and I coaxed it into his mouth. All of the sudden he was sucking and swallowing on his own. Jonathan and I started to cry as this was no doubt the greatest accomplishment we had ever witnessed. It was at that moment that I wanted to be like "Ha! I told you so! ". I knew I had a fighter on my hands but now he was proving it to me and everyone around him. It was like God was looking down on us telling us we made the right choice keeping him and giving him a chance to prove a point. It was truly a miracle to witness and I think it was at that moment we realized, he was our miracle.
Leaving him that night we felt so confident that he was in good hands and he would only make a positive progression. And we were right. We got a phone call this morning that he had such a good night that they were going to move him to the cardiac step down unit. It was like Christmas morning! Cardiac step down means we are in private room with just us and Dalton, and we get to stay overnight with him. We rushed to get ready this morning so we could come hold our little boy, finally. Walking into a room with just the three of us was the feeling we have been waiting to have for 9 months.
He does have jaundice pretty bad but we are keeping him on one of those cool florescent blankets to help with it. As Jonathan and I sit here and stare in amazement that he has done this well we are so filled with love, worry, and anxiety. Anytime anything beeps within a 30 foot radius we look at each other and are stricken with fear. I always said I never wanted to be that paranoid Mom. Well, welcome to motherhood. It has happened, to both of us.
 The hospital is doing a great job though and will continue to teach us how to care for his incision and administer medicine. There is no doubt in my mind that this is going to be easy by any means and we are not trying to say we are out of the woods with him medically- we aren't that naive. This is going to be a long journey and we have the Lord walking by our side every step of the way. Having the main concern in his heart taken care of no doubt gives us peace of mind. When it comes to the Trisomy 13 it is something that we are going to have to closely monitor and the symptoms may not show up until later, but we will cross that bridge when we come to it. For now we are enjoying the time we have with him. Every time a Doctor says shortened lifespan I still cringe but for now I am continuing to place my faith where it has been this whole time, in the hands of the Father. We hope that Dalton has been able to show lots of people that with faith anything is possible. Please continue to pray for Dalton's continued healing and the strength for Jonathan and I to continue to be the best parents possible.

The video of Dalton taking his first bottle!

Dalton's beads of courage. A different color bead to symbolize each triumph he goes through.

Taking his bottle!

I got this!

The proudest Daddy ever.

All gone!

Mommy, why haven't you been holding me the whole time?

I'm in love.

Aunt Katherine and Uncle Adam finally got to meet me! I'm crying because I wanted to see Lyla.

Aunt Mary Riddick came for a visit.

The new man in our lives. Sorry boys!

Daddy loving every second.

Update: Night before Surgery #1

I have been trying so hard to finally get around to this. It has been absolute madness and truly my only focus has been to be by Dalton's side as much as possible. Everything has happened so quickly that we are really just trying to get our bearings. I'll start off with the day after he was born, right where I left off.
Jonathan and I woke up in the hospital and got ready as quickly as we could to go down to the NICU. Obviously I was not moving as quickly as I wish I could have been. I was in so much pain but I knew once I got down to see him again, everything would be okay. We went down to spend some time with him and it was amazing. Just looking at him. I have seriously been in such awe that we created something so beautiful. So we stared, and stared, and stared. Our families arrived to finally meet him.  They were ecstatic and we were definitely the proudest parents ever! My body started to tell me to slow down and lay down so I went back to the hospital room. While we were back in the room letting Dalton and Mommy rest we got a phone call from the neonatologist. They wanted us to come down for the ECHO on his heart. We went back down and they confirmed what they had suspected in utero. The left side of Dalton's heart is a lot smaller that the right side. It is working hard and the main valve to get into his heart is very narrow. Right now he is still breathing because of a fetal valve (PDA) that God gives us all, but eventually closes after 72 hours. They explained that they could put him on medicine to temporarily keep that valve open until surgery. He needs a coarctation of his aortic valve. They also discovered a ASD and a bicuspet valve. Things we are going to have to have taken care of when he is a little bit older. But right now the main concern is fixing that valve so when the PDA closes he can continue pumping blood. Like I said, these were all things we expected but I guess we just were not prepared when they told us they were going to transport him to another hospital as soon as possible.
Wait a second! I am not even fully recovered yet and you are telling me I have to stay in one hospital while my 18 hour old baby goes to a new one? I thought they were crazy. They told Jonathan that he could go with him but I needed to stay for one more night of recovery. After that everything happened so fast. Before I knew it a transport team showed up with 4 people and this giant cart on wheels with all these monitors attached. When they unhooked him from his lines they asked if I wanted to hold him for a minute before he left. I sat down and prayed over my little boy so hard and told him how much I wanted to be with him. They took him from my arms and asked me to start signing papers. I watched as they placed him in that cart looking thing and strapped him in. Jonathan ran over to kiss me good bye and before I knew it they were rolling out the door. The most important thing in my life was leaving me and I had only held him for a minute. I knew that Egelston was the best place for him but I selfishly wanted to be like all the other new Mom's in the hospital. The ones who got to keep their babies in rooms and change their diapers! I wanted a poopie diaper to change! And just like that, he was gone, I was alone. Without my husband or my son and only a day after one of the most physically painful things I have ever done. My family stayed with me at the hospital for a few hours and Brianna even slept on the cot in my room. Bet she wasn't expecting those 3 a.m. pumpings. Jonathan was able to come back for an hour during a shift change at Egelston, so it was nice to get to say good night to him.
The next morning (Wednesday) I was first to be discharged after some serious begging. Jonathan came and picked me up and we went to the hospital to be with Dalton. Just Jonathan and I went down and spent the entire day with him. Was I exhausted and in tons of pain? Yes. Did it matter? Absolutely not. I got to be by my son's side the whole day and it was magical, we even got to read him some Bible stories.. We are still unable to hold him and it will probably be that way for another week because of certain IV lines. We met with all the different doctors and geneticists at the hospital. Learning a whole new staff was hard because we were so used to all of our Northside doctors. Luckily, everyone has been wonderful and very helpful. I even got to change a diaper. I was so excited! We just tried to let him rest as much as possible because he does not like having tests done and that is really all they have been doing to him. He is on room oxygen which is a huge accomplishment! They are feeding him lipids (fats) and sugar water to keep his belly full. They will attempt tube feedings when his surgery is over. Today was kind of the same deal. We went to the hospital to sit in on his rounds at 6 am. Then we did more sitting by his bed, and honestly I do not want to be anywhere else. The thing that is making this all so difficult is that I do not feel 100% and I wish I did. I am still on lots of medicines and very uncomfortable and I pray that God starts to heal me so I can give Dalton my all.
Today something awesome did happen. He was having a little tantrum (apparently he likes to do that when he gets unswaddled) .The nurse was soothing him as I came back to his pod, he heard my voice and stopped! He was completely wide awake, looking around, checking everything out. It was the first time we had seen him keep his eyes open for a period of time. I called Jonathan so fast and he came running up from the cafeteria.
Jonathan and I were talking about how with all the craziness of trying to be with him as much as possible and gather all the information we can from the Doctors we haven't had as much time as we would like to pray. I know you can pray anywhere, anytime but our minds have just been so full of worry with all that has been going on around us. That's why God put a friend like Kalee into my life. She started a prayer vigil to be with Dalton from midnight tonight until midnight tomorrow. Every 15 minutes someone will be praying for our little miracle baby. Some of the times to sign up to pray have even doubled and tripled. We are so moved by the outpouring of love from everyone. It is what is keeping us going and giving us the strength to move up that mountain. Our son will be covered in prayers and mostly from people we don't even know! It is amazing how God is using Dalton to bring so many people to their knees before Him. He is defying the odds and tomorrow morning at 7:00 a.m. he will continue to do so.

Thank you so much! God bless you all.