Miracle Dan

I've started this blog post so many times I've lost count. I haven't been able to blog it, let alone write it down on paper. As Daniel's first birthday in heaven is quickly approaching, as well as his first angelversary, I've decided I have to write it down (or type it up) before those dates come. Its all so fresh in my memory still, but as I begin to type the words leave. I panic, I cry. But it needs to be written down so I can have it to read later on in my life.

Starting from the beginning.
Tyler and I decided after almost 4 years of marriage, it was time to start our family. We got pregnant on the first try! (July 2010) August 2010 I found out I was pregnant with our first child! I was scared, excited, terrified! But mostly excited because it was the next step in our life! That August we went to Las Vegas with some friends, Spencer and Lauren. Lauren was also pregnant and we went and saw Lady Gaga in concert! It was awesome. Las Vegas was a big trip before the baby came. (Due April 22)

At my very first prenatal appt, I did my bloodwork for the first time! (Never once had I donated blood or had my blood drawn for any reason in my life -- at least if I did I didnt remember.) To be honest, I didnt even know what my blood type was. (Yeah, I know.) So at my second appt I was informed that I had A- blood, and that I had very low blood platelets. Around 70,000, when normal is like 100,000-440,000 or something like that. From there I was referred to a Hematologist and he diagnosed me with ITP. Idiopathic Thrombocytopenia. What is ITP?

Idiopathic thrombocytopenic purpura (ITP) is the condition of having an abnormally low platelet count (thrombocytopenia) of unknown cause (idiopathic).[1] As most incidents of ITP appear to be related to the production of antibodies against platelets, immune thrombocytopenic purpura or immune thrombocytopenia are terms also used to describe this condition. Often ITP is asymptomatic (devoid of obvious symptoms) and can be discovered incidentally, but a very low platelet count can lead to an increased risk of bleeding.
(Thanks wikipedia for the definition)

So from being diagnosed from there on I met with a Hematologist every so often to do bloodwork. I thought I was so picked on! Having to draw blood and get my finger poked all the time. (I'm pro now) *Tip don't complain about having blood drawn to me, I will roll my eyes at you...j/k I know it's horrible for some people. I just have really good veins. :)

So pregnancy is going great, I have no morning sickness, day sickness, NO SICKNESS AT ALL! Never once. I enjoyed the first part of my pregnancy! It was fun getting the attention. At my 17 week appt we thought we would be finding out what we were having (the mid-wife I was seeing said we might) so we invited my parents and Tyler's parents to the appt. She told us 70% chance that our baby was going to be a little girl. I was right! I knew all along it would be a girl. My friends that had girls had felt fine when they were pregnant and my friends that had boys were sick! So, I thought for sure it was going to be a girl, and we would name her Elliot, calling her Elle for short.

My 20 week appt everything changed dramatically!! Our little 70% chance girl had somehow grown a penis! Tyler was so excited! I can still see his face. He knew all along it wasn't for sure a girl, and he cautioned me about buying a whole lot of girl stuff! He wanted me to wait til we heard 100% girl. He was right. And good thing I only bought one little pair of cute little shoes for a girl! That was the first of the news at our 20 week appt, we were now having a boy! and it was 100% confirmed that HE was a BOY. They tech continued to scan and scan and scan, then she got to the heart and became completely silent. She zoomed in, she zoomed out. In and out. Clicking and clicking and picture after picture. I knew something was wrong. She stood up and said she'd be right back. (Pretty sure that gave it away right there) She came back in with a radiologist to look at the ultrasound and within a couple of glances they told us our baby had a special heart. A heart with a heart defect. He told us we would need to go down to Primary Childrens and that the baby had somekind of a septal defect. Nothing made sense, it was all a blur. How could OUR baby have a heart defect? I am a healthy 24 year old girl at the time! Active, healthy, ready to have a healthy baby. It just didnt make sense. This particular radiologist is a patient at the office I work at, everytime he comes in the memories come back of him telling my my baby would most likely need open heart surgery when he was born.

We scheduled a fetal-echocardiogram (pretty much an ultrasound that just focuses on the baby's heart) at Primary Childrens in SLC. Most horrible experience ever. I hated it. I understand now a lot more now than I did at then. Sat there doing the echo for about 2 hours, getting all the views. (That part of it was fine) Luckily we had Tylers parents there to help us "take it all in" and understand. They took the 4 of us into a tiny little room. We met with a cardiologist and the fetal heart coordinator. He started off saying our baby's heart was very complex, very different. AVSD (atrialventricular septal defect) Heterotaxy and Pulmonary Atresia. Then he went on to some options. First was to terminate the pregnancy. 2nd was to take him home when he's born (if he makes it out of the hospital) and to just enjoy him until he dies sometime at home. 3rd was to start a series of difficult surgeries not knowing if they would be successful. I remember thinking.. "Did he really just say that? Are they sure its that bad? Why us? Why not someone else? This is our first baby!" They gave us packets of info, pictures and diagrams of the heart... information overload really. We told them then and there we wanted to try surgery. I was so angry that he was not positive about things at all. The drive home was long and teary. (I now understand how complex Dan’s heart was and I can see where they were coming from.)

Next fetal-echo was a couple weeks later. From there we got a new diagnosis. No Pulmonary Atresia! It was good news. The doctors we met with that day went over things with us again and they all seemed more hopeful. They told us another fetal-echo wouldnt be necessary, but they advised that I deliver my baby at U of U hospital so he could quickly be transferred over them for urgent care and possibly open heart surgery.

From there my pregnancy was like this. People would ask "oh are you so excited!!!???" "Yeah I am, excited and scared, our baby has a heart defect and will need several surgeries when he is born and throughout his life" People didn’t really know what to say after my response. I mean, of course I was excited! But there was a lot of unknown.

We didnt know what to expect! I had to start taking Prednisone steroids early on in my pregnancy because of my ITP and low blood platelets. It helped to raise my platelet count. (Platelets below 100,000=no epidural, due to risk of bleeding in your spine which can paralyze you...) So weekly blood draws continued throughout my pregnancy, and finally my body stopped responding with the Prednisone. my platelets were dropping. Plus, prednisone during pregnancy can give you high blood pressure w/risk of preeclampsia.. so of course I got high blood pressure towards the end as well. The last 6 weeks or so of being pregnant I was doing weekly blood tests, and non stress tests1-2 times a week to check baby's heart down at the U of U in Salt Lake.

I was due April 22, and scheduled to be induced on Monday April 18. Baby Dan decided to come early (of course when I was waiting for my insurance to pre-auth a blood platelet infusion!!) My water broke on Tuesday April 12 around 5am! I remember thinking oh no, he's gonna be born on the 13th! and unlucky number (LOL) Little did I know, I would be in labor for about 36 hours, with no epidural due to my platelets dropping to 40,000 with a high risk of bleeding! I dont remember a lot of my labor with Dan. I remember being in severe horrible worst pain ever! But when I think 36 hours, it didnt feel like THAT long to me. Probably because I was so worn out and exhausted, starving, etc. I remember Tyler playing "Enya" on Pandora to "relax" me..yeah right. I remember my mom and my mother in law pushing on my hips, and Tyler pushing on my knees (to relieve pressure? pain?) It felt like they werent even pushing.. I remember yelling at them to push on my hips harder! Lol. I had several different doctors since I was in labor for so long. ( of course MY doctor was out of town during all this) One of the resident Drs at U of U actually delivered Dan. I remember them taking Dan right after he was born, I just got a quick glance, and they passed him throught the NICU window to stabilize him. He wasn't breathing when he first came out and was pretty blue/purpley. My body pretty much went into shock afterwards (oh and getting a catheter put in and out and in and out AND IN AND OUT when you are not numb hurts ....really bad!) Anyways, I was cold, and then hot, with severe shivering... for about 30 minutes. It was horrible. From there I remember someone brought me and ice cold coca cola, and I finally got to just rest. I wasn't even thinking about Dan, how awful is that? I had no idea what was going on ...magnesium I guess?? Just plain exhausted. The nurses took me to a recovery room to rest and soon after we got "the call."

Dan's dr's at Primary Childrens called us, to tell us things were worse than they thought. His heart had gotten worse as he was growing, and he was no longer a candidate for any kind of surgery. They told us he was getting worse on the machines, and that we needed to hurry over. Tyler went right away, but since I had just had a baby, having developed severe preeclampsia, and being filled with magnesium they wouldnt allow me to get up, or even sit in a wheelchair to be wheeled over. (Still had the catheter in too, hooked up to IV fluids and blood pressure monitors and oxygen..) So it felt like an hour but they wheeled me in my hospital bed through the hallways to Primary Childrens. There I got to see my baby up close for the first time. They handed him to me almost immediately. HE WAS BEAUTIFUL! tubes, wires, iv's everywhere, but he was gorgeous. Tyler and one of the Dr's had already given him a name and a blessing. I didnt get to be there for it which makes it still really hard to sit through baby blessings at church.

From there in the CICU in Primary childrens, we had so many visitors that night.. pretty sure we broke some rules.. but we were in a pretty isolated area... (me laying in my hospital bed/with my gown on and a catheter in still... ) yeah it was wonderful.. the staff in the CICU were amazing. I wish I would have gotten all of their names. I do remember one of the nurses caring for Dan was named sarah, she was very sweet. Our families came back, Tyler's sister drove up from price, along with his g-ma and also our Bishop came. I dont even remember about that time this all was happening at, but I know it was late. NILMDTS (Now I lay me Down To Sleep) came and took pictures for us right after we took Dan off of life support.

They told he wouldnt last long. Tyler and I slept in the CICU that night, we took turns holding Dan all night long, I think tyler's parents stayed with us too. The next day they had us go back over to the U of U and we stayed another day there. We had a ton of visitors there too, Im glad the staff was so understanding. We didnt know how long Dan would be here with us! The cardiologists that came in were shocked. They told us they were very surprised he was still with us. They didnt think he would last 5 minutes, let alone over night. I couldnt help but think they missed something, or something miraculous has happened!

We finally came home on the 16th, which was terrifying. They again told us he might not make it home! We had hospice home care come and get Dan set up for comfort care.

I didnt like the hospice Dr one bit... I know he was just doing his job, but i felt like he just kept saying over and over, "your baby is going to die" "so WHEN he dies, you are going to need to do this" they never spoke of it like "IF your baby dies" No one seemed to believe in my baby! He had already proved the Drs wrong. "Heres some morphine for WHEN your baby is in respiratory distress" It was horrible.

Dan came home and we showed him his awesome Super Mario nursery. Tyler and I cried and just held him. Dan seemed to have a little shortness of breath. So Tyler read him a story-to help relax him. We read him the story of Easter, a childrens book Ive had since I was a little girl. Seemed appropriate since Easter was around the corner and it also talked about the Ressurrection. From there we were able to do SO much with Dan. I am so blessed he was such a fighter. So lucky to have such amazing pictures of him. I love Dan so much and I miss him like crazy!

The first couple days at home were madness. we had so many visitors, but we enjoyed it. I love to show Dan off, he was so beautiful! Everyone couldnt believe how much gorgeous brown hair he had! He was so perfect, so tiny.
I didnt have any newborn size clothes for him, so i had to make a quick run to Carters to buy some with my sister in law chelsie when dan was probably a week old. (we had thought he would be in the hospital about 8-10 weeks after birth so we avoided buying any newborn sizes because Dr's had mentioned that the clothes probably wouldnt fit by the time he came home! and he wouldnt be wearing them in the hospital)

Dan didnt like to take baths, he just cried! We tried to make them as quick as possible because sometimes he would have a hard time recooperating after he cried. His cry was so cute though, and I miss it. I miss it so bad!

We even had a birthday party for Dan when he turned one week old. Birthday cake, balloons and everything.. it was a luau themed party! Thanks to his grandparents and aunties doing all that.. i love that we got to have a little party for him.

Grandpa Mark even took Dan camping in the basement! I knew he was up to something, everyone seemed to be sneaking around the house for a few hours that day... finally it was announced we were taking Dan camping in the basement! I was AMAZED by how different our basement looked! There were house plants everywhere, sleeping bags, strange stuffed wild animals :) camping chairs, a cooler with sodas in it! Grandpa mark went all out, and it was something I will never forget. He even asked that we dress Dan in "camping clothes'! so we dressed him in a little brown and white onsie with a little bear on it (hand me down from my friend Jamie I think) and some cute little brown pants. Tyler even used our projector to project a real campfire on the wall down there. Can you say Amazing Grandpa?

Dan always slept in someones arms, until the last week we had him. We finally decided to let others get some sleep :) and Dan slept in the pack n' play next to our bed. (grandpa mark stayed in the basement on the uncomfortable couch just in case we needed him) There were only a couple days during those 5 weeks that i had a couple hours of being alone with Dan. I wasnt worried. I knew Heavenly Father would take care of us and not let Dan pass away when i was by myself.

When Dan was 2 weeks old, we called the Drs and told them we wanted another echo to be sure of Dans diagnosis. The next day they called and said they could try a cath procedure to try and balloon open a valve to get more oxygen for Dan. we jumped on that and took him in the next day. it was so scary handing Dan to the nurses, they surgeon and anesthesiologist stressed he might not make it out of the hospital that day. But he had to try it. The cath was unsuccessful and Dan was sent to recovery, they again told us he might not survive once he was off the machines. But he did, and we enjoyed him for another 3 weeks. I am glad we at least tried the procedure, i would have thought about it for the rest of my life.

I am so grateful for the technology we have today, digital cameras, video cameras, etc. I haven’t watched any home videos of Dan in a while. When I do I turn the volume down so Tyler wont hear it, I don’t want to make him sad. I am so grateful for the newborn pictures that our friend Ashley from Miles of Memories photography took for us. They are beautiful. I look at them everyday, and we have them posted all around our home. We are so lucky to have these amazing pictures, and to use one on Dan’s headstone makes it very special to me.

Dan loved going for walks in his stroller. His eyes would go so wide and he was so alert! I hope he liked feeling the fresh air on his face. It was so nice to feel normal, like a normal mom just taking her normal baby out on a walk. I miss those walks with Dan! We took him around the neighborhood and we were also able to take him to a cute park in Clinton too. We also went to Emma Russel Park in Roy with our friends Spencer,Lauren and Dominic for a walk . Dominic is just a few weeks older than Dan so I am really glad they got to meet. Who knows what kind of trouble those two would have gotten into when they were older.

Mothers Day was extra special with Dan. I was a mom! My son was STILL there with me!! This mothers day will be hard for me, even though I know I am still Dan’s mommy. (Baby Lou on the way) We did a special little photo shoot in the yard with Tylers family for mothers day. Tyler and Dan gave me a beautiful “mom” necklace on Mother’s day, too. I hope Dan knows how proud I am so be his mommy!

Dan also was able to watch several soccer games with his daddy! He was a Nottingham Forest game, a Real Salt Lake game, and 2 or 3 of Tylers team that he was coaching. (U8 comp soccer for Rampage) It was so fun to be that mom on the sidelines with her beautiful baby boy. The weather was great and it was really nice to get out of the house a little bit with Dan. (Side note, there were several sweet little players from tyler’s team that he coached that came to Dan’s viewing and also gave Dan presents when he was born…they were the sweetest little boys! I miss watching their games.)

We also made sure that Dan watched plenty of movies with us. He of course watched my favorite “The Little Mermaid”! He also watched Ninja Turtles, The Incredibles, Zoolander (Tyler’s favorite….haha not quite appropriate for a baby.. I think he slept through most of Zoolander) Sleeping Beauty, and his favorite was Despicable Me. He was wide eyed during that movie! I even have a picture of him and you can tell he is staring right at the TV. It is so cute!

I loved playing lullaby music for Dan too. I got an awesome “Lullaby Renditions of NO DOUBT” cd from my cousin Shirley that I loved to listen to with Dan. I also got the “Lullaby Renditions of Weezer” cd. Dan had a pretty good taste in music. We listened to Pandora Lullaby Station almost 24/7… there we discovered the group “Renee & Jeremy” the singers of the “Miracle” song, which fits Dan perfectly. I bought their lullaby cd and I absolutely love it. It is so relax and so chill, but I haven’t been able to listen to any of it since Dan passed away. Hopefully I can stuff it out when Baby Lou is born because I really love the songs on it!

Dan was such an alert little baby, especially for a newborn. He was so smart, so bright. He knew what was going on, and I really truly believe he knew his time was limited. He hung on with us for 5 weeks! He was so well behaved. I think he knew I am kind of a worrier and would really freak out if he cried all the time! He cried and fussed just a little when he was hungry, or when he needed to be changed. He absolutely loved being held by his Grandparents and Aunties and Uncle Nash. He was such a good baby. So studly, so handsome, so perfect. I miss him so much!

Dan knew my voice, he knew Tyler’s voice. He also knew his Grandpa Mark’s voice. He would open his eyes when he heard Grandpa Mark. I loved when you would be sitting next to someone holding Dan, you could talk to him and he would look in the direction of your voice. He was a smart little baby!

I am so grateful for the time Dan was able to spend with all of his aunties. He had almost daily visits from Aunt Chelsie, Aunt Daylan, Aunt Rilee, and Aunt Susu. And Uncle Nash, too. Chels and Nash would stop by on their lunch breaks. Aunt Daylan spent a whole day just hanging out with me and Dan. He sure loved them all. Rilee even sang the Miracle Song at Dan’s celebration of life. It was so sweet. I still haven’t listened to CD of the services yet.. I will bawl my eyes out! Aunt Susu loves baby Dan, she was so supportive to get the Heterotaxy H2O bracelets ordered for us. I am happy she was able to visit Dan so much.

We never knew how much time we had with Dan. Each day I am haunted with “did we do enough? Did we do all we could do?” We didn’t have much time so we just had to enjoy every minute of it. We took so many pictures. He probably got millions of kisses a day! I pretty much never wore lip gloss when Dan was here, because I didn’t want to get it all over his face.

Every night we prayed that Dan would be even more of a miracle than he already was. We prayed he would get better, we prayed that the doctors would find somehow to operate on his heart to make it whole, we prayed for more time. We also prayed for comfort and strength for if or when he did pass away. I secretly prayed that if he did pass away I wouldn’t be home by myself. I was so scared I would be alone and he would just stop breathing for me. I didn’t know what to expect. The doctors couldn’t tell us what to expect either. It would either be suddenly stop breathing, or have respiratory distress and then stop breathing. It was so scary each day.

I knew it was happening early in the morning of May 19. He didn’t wake up to eat, so I set my alarm. I got up and fixed him a bottle and he wouldn’t eat it. He was also really fussy and his breathing was fast. I put him back in his bassinet next to our bed and kept waking up every hr or so to try and feed him and to check on him. He still didn’t want to eat. He hadn’t had a wet diaper in a while either. He was crying that morning, not a lot, but he was crying, and he never really cried. Tyler had to go to work, and I was home by myself. I layed Dan on the bed next to me and just looked at him, I talked to him, I kissed him. But I knew what was happening. He would cry and then stop crying, but he could never “catch up.” His breathing was really quick, and he would sometimes gasp for a breath of air. This was around 9am. I was constantly texting Tyler and updating him and I decided he needed to come home. He came home around 11. We called our family and the hospice nurse. The hospice nurse helped us give him some morphine to help calm his breathing….it made his eyes roll to the back of his head and he stopped breathing for like 1 second. I was holding him and it scared me to death. It was horrible. He came to and opened his eyes and I just held him close. We tried to keep him elevated and upright so he could breathe better all day. We called people and told them they might need to come and say goodbye. It was a rainy gloomy day that day, but Tyler decided we should take Dan for a walk in his stroller because he LOVED his stroller. We took him out and the rain stopped. Dan’s breathing also seemed to improve and I really believe he enjoyed his walk. I walked with Tyler around our little neighborhood/blocks /cul de sac area 2 times. Then Nash and Mark went with Tyler another 2 times, and then I went out with them another 2 times I think. We went back inside because the rain started to sprinkle again. We were just sitting in the living room and we decided to put Dan in his swing and let him relax. We were just sitting around and talking, I was in front of Dan in his swing and Tyler was next to me. A few minutes later Tyler said “He’s gone” and Dan was gone.

It was exactly 5:00pm. He had taken his last breath. He enjoyed his last walk in his stroller, got to relax in his swing, and then surrounded by his loving family he returned to his Father in Heaven. It was heartbreaking. I held him so close and cried for hours. It was the worst night of my life, having to say goodbye. I know it was hard for everyone. The song “Somewhere over the rainbow” was playing on Itunes. My best friend Nikiesha came in and hugged my not even minutes- maybe even seconds after Dan passed away. I was on the floor holding him still and I remember that song was playing when she was hugging me. Tyler held Dan’s little body after me. I remember feeling heartbroken, but almost relieved at the same time. No more wondering when or how or if it was going to happen. He was finally whole again. He wasn’t going to suffer any more. He wasn’t going to have to endure several hard heart surgeries, organ surgeries, or even a heart transplant in this life. He wasn’t going to have a feeding tube in his nose or belly, he wasn’t going to have to go to the hospital all the time and get poked and scared. I miss him so much, but I am a little grateful he won’t have to do all of that. I didn’t want him to feel any more pain.

Everyone took turns holding Dan. I wasn’t aware how fast bodies change after they pass away. Especially babies. Their bodies change a lot quicker than adults. The mortuary came to get Dan’s body at midnight. It was a good time for them to come. We changed Dan’s diaper and clothes and dressed him in an all white onesie and little white socks. We wrapped him in his Minky Coutre blankie. Giving him to the Mortuary guys was so hard. One of the hardest goodbyes. They were so understanding though, and they took good care of him. I watched the white van pull away and I just cried and cried. Our Bishop stayed with us til after midnight comforting us, and supporting us. He gave us an overview of what the next couple of days would be like with planning the funeral, etc. Mindy Gledhill’s version of “Be Still my Soul” played on Itunes and it was the perfect song. It was just what we needed to hear. I love that song so much.

We had an amazing celebration of Life for Dan. It was exactly what I wanted. The balloon release was perfect and Im still so grateful to Chelsie and Nash for getting the balloons. The floral arrangements were absolutely beautiful, I wish I would have taken pictures of them.
Tyler and I ran away to St George for a few days after Dan’s celebration of Life. It was nice to just get away and not be a at home for a while. Coming home was rough. It was like coming home to an empty house. Dan wasn’t here anymore.

I sit here on April 13th finishing this long blog post/journal entry/whatever this is. I can’t believe tomorrow is April 14th already. I guess all I can say is I know Dan is still near. I can feel his spirit. I know he knows I miss him, because when I pray I ask my Heavenly Father to tell Dan how much I miss him and how much I love him. I know that I will see him again. I know I will raise him in the next life. I know that this life is going to be hard for me, but if I keep going and have faith everything will be explained to me. Here’s a poem I wanted to share that I saw on the good old facebook the other day :


"It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels to go live on earth and be born.


One of the sweetest angels says to Jesus "I don't want to leave. I like it here and I will miss you." He reassures the scared little angel that everything will be okay, and that he is just going for a visit.


He is still not swayed. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still scared.


He asks, “Will I be okay with only half of my heart?" Jesus replies, “Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan.


He says, "When you are born, your mommy and daddy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart.


Enjoy your time with your family; play and laugh every day. And when it's time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves”


Happy 1st Birthday in Heaven to my amazing sweet little boy. Not a single day has passed where I don’t miss you or long to hold you in my arms. Every day I wonder what you would look like, what you would be doing, how your smile would look, how many haircuts you would have had to have. I have had many special moments since you left us where I know you have been near. I believe you are near me during the moments where I miss you the most with tears rolling down my cheeks. (Like right now) I cant believe a year has passed since I got to see you for the first time. Bringing you into this world was so painful but I would do it all again a million times for another 5 amazing weeks with you. I cherish every memory I have of you. Each day that goes by I know I am one day closer to seeing you again. I love you so much Dan and I hope you know how proud I am to be your Mom. XOXO