September 9, 2015

Our Miracle (part two)

The last time I posted was to share Dash's birth story, and right before that it was to share his Miracle Story Part 1. He was just 12 days old. Today he is 70 days old. We have had him home now for a record 13 consecutive days. Things are going really, really well. His story didn't end when he was 12 days old. Little did I know there would be a part 2. A lot has happened since then. I wanted to share those details before I forget, which I already feel like I have a little bit. It's long, just like part one. But it's full of details and photos, and lots of feelings until the very end!

We ended up being in the NICU at Utah Valley Regional for a total of 5 weeks to the day. One week before leaving, though, Dash came down with a fever. The nurses ordered a full work up on him and when the test results came back from his spinal tap it was confirmed that he had meningitis. We soon found out that it was a common viral type called Enterovirus and that he wouldn't need antibiotics but that he would just need to let it run its course. This particular type was running through Utah County like wild fire at the time. He basically had a fever off and on for about 4 days and then he was fine. Had he not caught the infection we probably would have gone home a week sooner. 
(Getting ready for spinal tap)
Up until we were discharged from the NICU we were basically spending all our time getting Dash to eat more breast milk, and continue to poop, grow and not vomit. He had been moved into another part of the NICU- a lesser "intensive care" part. The part where babies go that are getting close to going home. The last week, though, was spent in an isolation room until we left due to the infection. He was doing really well. We had him eating a 2 oz bottle or breastfeeding about every 2 hours. It was magic and worked great for him.

(swaddle bath!)
(the room we were in just before discharge, finally by a window for Dollie to see him!)
The day we were discharged, Saturday August 8th, was a really bitter-sweet day. Luckily, one of our most favorite nurses- Tamera- was his nurse that day and was able to see us on our way. We had stayed the night Friday night so that I could nurse him around the clock to see how he did before going home. He did fine. We left around 2 pm that afternoon. For the first time in weeks Dash wasn't hooked up to a single cord and we were able to freely hold him and walk around. It was amazing! We took some photos and said our goodbyes and headed home. To say we were excited is an understatement. Sad to leave our NICU family, but so happy to be going home with our baby. 

(LtoR: Heather Harper, us, Dr. Susan Morelli, Tamera Ewan, Dr. Stephen Minton)
(Alyssa, me, and Lindsay)
(Just about to head home! Dr. Minton is over the entire NICU. He is the big boss. He LOVES babies! He is the most unbelievable Doctor you guys! He also took care of those quadruplet girls!)
(Tamera; Mama bear when I couldn't be there. LOVE her!)
(Theresa, one of the nurse practitioners)
(Walking out of the NICU with Dash!)
Dollie was ecstatic to have him home. For the next week we just enjoyed him and played and took care of him. The NICU had strongly recommended that we keep him basically isolated from anyone for 3 months. That included keeping Dollie home, too. So for that week we didn't leave the house for anything. Bodie of course went to work but that was it. No one came over, nothing. We had hand sanitizer in every room and were being overly cautious. The last thing we wanted was to end up in the hospital again. That week was amazing. I remember on Wednesday or Thursday telling Bodie that I felt going from 1 to 2 kids was 100 times easier than going from 0 to 1. That entire week was cake! They both woke up around 7:30 am, I took a nap with them every day. I got my house cleaned and things done, and Dash was just so good. Never fussy, super happy.

The weekend came quickly and Bodie had to work on Saturday. He left early and we started our day as usual. I had last nursed Dash at 5 am. I went to nurse him again at 8 am and he had some spit up. Nothing major at all- although it was the first spit up he'd had all week. I nursed him a little but he wasn't too interested. I placed him in his swing and he vomited quite a bit. Nervous, I called Bodie. He told me to call the Doctor and see what they wanted us to do. The vomit was not green, but yellow. I called to see which Neonatologists were working and both the ones we knew best weren't there, but one was on his way so I kept calling back checking to see if he was there. I started to get both Dollie and I ready to leave knowing that we would probably end up going back. I can't remember all the details, but I remember speaking with Dr. Minton around 10:30 am and he told me to try nursing him again and see what happens and to call him back in a couple hours. I nursed Dash right when I hung up and seconds later it all came back up. Dr Minton told us to come to the ER and that he would meet us there. Bodie rushed home, Dollie stayed with our neighbors, and we headed out. We were met right away by Dr. Minton at the ER and were taken straight to a room. (So thankful for the relationship we've built with these Doctors!) Dash had a couple X-rays- just the normal kind- of his abdomen and also had some blood drawn. He also had an IV for hydration because we had realized he hadn't had a wet diaper for a long time. Then we waited. For a long freaking time. 3 hours. Finally Dr Minton came in and said that he himself, and the pediatric surgeon as well as the pediatric radiologist had all viewed the X ray and felt that nothing looked wrong. They felt maybe he had a stomach bug. In my heart I knew he didn't. How could he? We didn't leave the house or come in contact with anyone all week. None of the rest of us were sick at all. Dr Minton said he could admit us to pediatrics if we wanted but that he would recommend we go home because Dash looked fine and we had been through this before so we knew what to look for. We felt more comfortable going home this time simply because we had pediatric specialists looking at the X rays. I asked them to do an upper GI test again but they felt it was unnecessary. I nursed Dash before we left and he held it down so we went home.

 On the way home he vomited a bunch. Dr Minton told us that if it turned green or if he stopped having wet diapers again then to come back. For the rest of the evening Dash continued to vomit and it kept being yellow. He wasn't peeing at all so we called the NICU back and spoke with a another Doctor because Dr Minton had gone home and he told us to come right in and that we would be admitted straight to the pediatrics floor. We loaded up again, left Dollie with the neighbors, and headed back. We planned on demanding an upper GI test when we got there, and luckily they were already planning on it. 
When we arrived Dash immediately got an IV and we went straight for the test. We were met there by the Surgeon. There we were in the exact same place doing the exact same thing that we did before right before Dash was wheeled into surgery and we got the devastating words that he would probably die the next day. We watched the screen as the contrast slowly moved and waited for it to travel. After about 10 minutes I asked everyone if they saw what I saw which was nothing. No traveling. They agreed. The surgeon had them put more contrast down, and then more. It slowly started to travel, but they agreed that there was a partial obstruction. The surgeon left to find out the OR's schedule and when he came back the contrast had actually traveled through the intestine really well. He got some second opinions from Doctors at Primary Children's and then decided that he didn't want to do surgery. We agreed. Seeing that contrast travel through was a big deal. 

So Dash was admitted to the pediatric unit for a couple days until he was well hydrated. On Monday morning a new surgeon came in, the main pediatric surgeon at UVRMC, and said that he agreed that it could have been a flu bug but that I could feed him a couple times and if he kept it down then we could go home. I fed him 4 times that day and he kept it all down so we left. I asked the surgeon very specific questions before we left about what to look for with Dash, and basically he said it was a very green vs yellow matter. That unless Dash is vomiting green then we are not going in for a 3rd surgery and that we can stay home. The only reason to come back is 1. green vomit or 2. no wet diapers/dehydration. So we went home.
Later that night around 10 pm he started vomiting again. Our favorite Doctor, Dr. Morelli, had visited us (along with other awesome nurses and Doctors) while we were there over the weekend and had told me to call her or text her if I ever needed to. Well once he started vomiting again I called her. He just kept vomiting and not keeping anything down. She thought that maybe it could just be reflux which we thought was a very valid idea. So for the rest of the night we watched him. Come morning he continued vomiting and it was turning bright yellow. Also he hadn't had a wet diaper since 1 am. My sweet neighbor ran to the store for me and got some pedialyte and we tried that. Didn't work. We decided that due to the possible dehydration again that we needed to go. We went straight back to the pediatrics floor and were getting ready for an IV and Susan (Dr. Morelli) came down from the NICU to see him. While she was there Bodie was standing up holding Dash and out of nowhere projectile vomits. Susan goes, "Okay that's green." She immediately took a picture on her phone and sent a text to Dr. Skarda (the surgeon) saying, "Dash is here. It's green." Earlier that morning Dr. Skarda had mentioned something to Susan about waiting for Dash to declare himself. At that moment Bodie was like, "Is that declaring enough?" We were kind of frustrated. We knew something had been wrong those past few days and we both felt that a 3rd surgery just needed to happen. He was showing all the signs as before, except for that upper GI test. That test was night and day difference from the first time. Anyway, Dr Skarda said he was on his way to come and talk and I truly felt that he was going to tell us another reason that surgery wasn't going to happen. At that point, we wanted it and we were going to ask for it. 
We were very nervous because we were told that to have another surgery could be fatal. We had known there was an area that was left alone from the first surgery that may need attention in the future but that the problem area was right up against the major blood supply vessels so it was really risky. Even still, we knew another surgery needed to be done. We knew that what was happening was something to do with his intestine again. I remember Bodie crying hard and saying something along the lines of really feeling like Dash needed this surgery and if that meant that Heavenly Father wants him back then so be it as long as Dash doesn't have to suffer on this Earth. 
Dr. Skarda finally came and (to my surprise) told us that he felt it was important to go into surgery right away. He had actually already called the OR and was getting prepped for it. We obviously understood and agreed. But there we were, once again, getting ready to send off our baby for surgery. This time knowing the outcome could be the worst. We immediately got our army of prayers rounded up (you guys, thank you!), notified everyone, and had an LDS Chaplin come in to help with a blessing. We did everything we could do to help Dash in our own way. Before surgery I asked the surgeon if he prays before the surgery and he said yes. I told him that it was really important to me because I knew that the only reason Dash was still alive right now was because of faith and prayer. I told him it was very important to me that he would be lead by the spirit and know what to do during the surgery. He agreed. There were tears from us, the nurses, was just a scary thing. A big unknown. 
(Dr. Morelli just before surgery.)
(FaceTiming with Dollie just before surgery)
Once again we found ourselves walking Dash down to the OR, talking to the anesthesiologist, signing papers, going through the motions. The surgeon had informed us that he had asked another surgeon from Primary's to come down to be an extra set of eyes. This was a very very big deal. We later found out that for this particular surgeon to be humble enough to ask for that was surprising. Not because he is arrogant, but because he himself is an unbelievable surgeon. Anyway, once again we found ourselves kissing Dash's sweet cheeks, handing him over to them, and sending him off through the operating room doors. Once again we found ourselves walking down the hall to the same waiting room where we would wait, pray, cry, pray, and wait some more.
After about 45 minutes a nurse came out and told us, "They said they are in the abdomen, they have found the problem, and they are going to fix it." That was it. And that was enough. Huge sigh of relief. HUGE. We waited another 45 minutes and Dr Skarda came out. We went into another separate waiting room and he explained to us what happened. He said that the problem was in fact the same "problem area" that we knew had been there the whole time. He basically said our intestines are suppose to form like a hedge; attached along the wall. Dash's was more like stalk of cauliflower. So the surgeon has to take that stalk and separate it using scissors, cutting, heat, and suture it into place along the wall- creating a hedge. He said it took a lot of time, that he did need the extra set of eyes, and that they stood back probably 5 times to re-analyze and go back in. He said that he did everything he could to create as much scar tissue as possible so that it would be strong and not able to twist anymore. He also said that with scar tissue comes the risk of having obstructions throughout his life. Dash is at a 10-20% higher chance at having obstructions than the rest of us. But it shouldn't be a big deal. Hopefully nothing more than a little snip here and there and that's it. 
We were so relieved and once again so so thankful to our Father in Heaven for allowing Dash to stay with us and for helping the surgeons to know what to do to help him. Also, so incredibly grateful for every single prayer said on his behalf from family, friends, acquaintances, strangers, etc. It means more than anyone will every know. I received a really incredible message from a dear friend of mine that I want to share with you all. She messaged me on Facebook a few hours after surgery and said this:
"Katie, I need to share this with you. Today when I read your post telling us that Dash was headed to surgery and you were asking for prayers. I stopped what I was doing and closed my eyes to pray for Dash. During my pray a vision came to me and I was watching the surgery being performed on your little boy. I saw the gloved hands working on him with a shimmering light projecting on the surface of him. I had a warm and comforting feeling and I knew God was guiding his hands.

I have never seen or felt this before but I knew right then he was going to be okay.

{My daughter} called me a short while later to see if I had read your post. She was sick with fear. I told her not to worry because my prayer was being answered.

I just wanted to share this with you. Love you all."

Unbelievable, right? I am just so touched by all the kind words and all the support and experiences from everyone. It's been really life changing and special to me.

Dash stayed in the hospital on the Pediatrics floor for the next 9 days. I will say that it was a very hard adjustment for me being on that floor after having been in the NICU. It wasn't bad, it was just really really different. Overall we enjoyed it and met some amazing people. I just love all the doctors and nurses that we have met through this experience. Some will be lifelong friends. Dr. Susan Morelli is like a mother to us. We love her. On the peds floor we had the opportunity to be with Dr. Beverly. He was the doctor who very first showed concern with Dash in the beginning. He played a HUGE role in saving Dash's life. Perhaps the biggest. 
During that time on the peds floor Dollie was able to come with us. For the first week I stayed there 24-7. There was a big bed for me next to his. There was a shower for me to use and since I was a breastfeeding mom I was able to order 3 meals a day from the cafeteria. And for the record let me just say that the food was GOOD! So good! I am still craving some of the items on their menu. Dollie had lots to do. Tons of toys to play with, books to read, movies to watch, and treats to eat. There were volunteers who would come play with her when I was busy with Dash and she loved every bit of it. 

(Right after another successful surgery)
(Watching Tangled)
(A little fresh air outside the hospital)

(Fun times on the Peds floor!)
(Fell asleep in Dash's swing)
Dash spent his days working back up to feedings and recovering from surgery. Things moved lots quicker this time since his intestines were in better shape and since he was older. Eventually the time came when Dr. Beverly said he was well enough to go home. That was on Thurs. August 27th. He got the surgeons approval and there we were loading up to head out! Crazy! This time felt different. This time we were more ready. We weren't as nervous. The surgeon was very confident with Dash. He told us he was 100% fixed. He said he had seen his insides and knew he would be just fine. He said we can't hurt him. We were ready to leave. We were ready to go home and be a family. The peds unit was a lot more lax with us when being discharged. They said that we, of course, need to be careful with Dash and not let him around sick people, but otherwise to have a life, go places, do things, etc. We have found ourselves somewhere in the middle of that and what the NICU recommended.

(Dr. Beverly- We are a little obsessed with him.)
(Dennis wheeling Dollie and Dash to our car)
The past 13 days have been great. It's everything you expect when you have a newborn and a 2 yr old. I am really tired, not getting a lot of sleep. Trying to nap when they nap. I basically stay in my pajamas all day long, maybe take a shower, but definitely don't put on make-up or get out the flat iron. Having him home that first week after the NICU was so easy. It's not so easy now, haha. Dollie loves having Dash here. She isn't overly obsessed with him, but also isn't jealous or mad at him. She is in the middle. It's perfect. Dash is doing great. He is exclusively breastfeeding which I LOVE. I didn't know if he would have after having bottles in the NICU basically the whole time. The only problem is that with him nursing so well around the clock he is not making even the slightest dent in the pumped milk. I have probably 500 bottles split between my freezer and two of my neighbors. I will most likely be donating it. I worked really freaking hard for it though so I hope to give Dash as much of it as possible. Dollie has been drinking some, too. She loves it! Always tries to take his bottle when I do bottle feed him. Its hilarious. Dash sleeps well, wakes every 3-4 hours to eat, sometimes every 2. His bowel movements are great. He has spit up the tiniest bit a handful of times. No vomit. He is happy, he loves baths, being swaddled, and going outside. He is starting to talk and smile a ton. He loves the car as long as it's moving. He is the sweetest thing and always takes my breath away.
We, as a family, are doing wonderful. 
We are all home in the evenings and it's so nice to just be home. We all went to the first hour of church on Sunday it was extra sweet. We are happy, healthy, and together. 
I often get asked how I am doing. My answer is always GREAT! And I really mean that. Yes, we have been through so much. Yes, my heart has been beaten, and I have been on an insane roller coaster ride of emotions. Yes, I was blind-sided and completely caught off guard. Yes, I birthed my baby and just a few days later almost lost him. It was hard, really really hard. The hardest thing I have ever endured and I hope to never experience ever again. I wouldn't wish that fear on anyone ever. The past two months have been really long. Driving to the hospital every day, sometimes twice a day. Add a two year old to the mix makes things 10 times harder. Seeing my husband in the most awful state has been really difficult. Seeing my sweet baby scream and scream after getting who knows how many pokes and IV's. Seeing all the tubes down his nose and throat..seeing him vomit over and over and over. Seeing him lay in a bed and not be able to pick him up. Taking pictures multiple times right before all 3 surgeries not knowing if they would be the last. Dying inside at the thought of Dollie not growing up with him. Dollie not being able to see him for basically 5 weeks. Watching and listening to monitors constantly. Seeing a ridiculous amount of medications pumped through his little veins at less than 2 months old. It's hard. It's all been really, really hard. Pumping every three hours for weeks, asking for help week after week whether it be meals, babysitting, etc...Leaving Dollie over and over. Not being able to go to church, or really anywhere at all besides the hospital. The bills that have started rolling in on a near daily basis. It's all very exhausting. Summer didn't exist for my family this year. 
But the thing is, after all that and more, it's all been worth it. I am GREAT because he is ALIVE. As long as my babies are alive I will always be great. We thought Dash was going to die, and so did everyone else. Susan told us the other day that the surgeon (after the first surgery) told her probably 10 times to prepare us for the worst. She said they were all trying to figure out how they were going to help us get through it. Believe it or not, I have left out a lot of little, but very meaningful details. For example, Heather Harper was our nurse the first 2 days that we were there. She was incredible. Ends up that she has a nephew named Dash Wilson. Also, just a year and a half ago her sweet baby boy Hudson passed away during surgery when he was just a couple months old. Heather was in surgery with Dash when we were waiting to here if his intestine was pink (alive) or purple (dead). Had it gone the other direction and we lost Dash, I can't imagine another individual more important than Heather to be there for us. That's just one of many really crazy things. This entire experience has changed me and my family. I've been told that it has also strengthened others testimony's greatly. This experience has touched many, many people. There have been so many times that I have told myself that I am sharing too much, that I need to keep a lot of the details to myself. If you followed Kycie (Kisses for Kycie) then you will understand what I am about to say. I followed Kycie's journey from the beginning, and the entire time her parents would post the details of what was going on and ask for prayers. I remember telling everyone about her story. For some reason it just really spoke to me. Every time her parents would post details and ask for prayers I found myself praying for those specific details. It was all very powerful to me. I talked about her all the time to my husband and family. I remember one of my friends telling me back in February that maybe I was drawn to her story because it was preparing me for something in my own family. I remember when Dash first went in and we were faced with the reality of him dying and I thought to myself, "I need an army of support and prayers like Kycie had." That's when I went to social media, and everyone in the cellphone contact list. All the prayers helped save his life. From that moment on I felt it was absolutely necessary to share the details of his journey with everyone. Kycie and her parents inspired me greatly. They were wonderful examples to me of what to do during a crisis like this. I don't know them, but they are very special to me. Their testimonies are unreal.
I guess the bottom line is that this has been really hard, but as long as Dash is alive I am great. I really, truly am.

Our testimony of our Savior is real, and it is deep. We know that our Father in Heaven answers prayers and that he allows miracles to happen. We know that through fervent prayer and intense faith that great things take place. Our faith has been strengthened immensely and we hope that through this experience others may know what a gift it is to have the gospel, and to have a relationship with our Father in Heaven. What an important thing it is to have a close relationship with Him. Without one life would be unbelievably difficult and scary. I don't ever want to experience this life without Him. We needed Him more the past couple months than ever before and we are so grateful that He has been here for us. Our Father has been here for us when we've needed him the very most. He always will be, no matter the trial, big or small. All we have to do it talk to Him and ask for help. 
I have some more picture of Dash in the NICU that I am going to share soon so be on the lookout for those.
Thank you for supporting our family. Every comment, message, and text is read. We are so lucky to have all the love! Thank you!!!

There's more to the story: Part 3

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