Day 8: Families Can Be Together Forever

Even with everything going on, my body needed sleep. Every ounce of energy had been drained and my body just couldn't handle any more. Luckily we had a room at the hospital that they were letting us stay in; however, it was a hospital bed that I am fairly certain is smaller than a twin size bed. I had the shakes so bad that even with the layers of clothes I had on, and the blankets, and the heating pad on full blast, I was still shaking uncontrollably. So for that night, I was thankful for that tiny bed, because at some point Logan finally came in there and snuggled up close enough that the shakes finally stopped.

That morning our families trickled in to kiss and love on him. For the first time, we were able to dress him. Emmy was also able to come in and hold him and sing. Thankfully, she didn't understand what was going on at the time, so she was nothing but excited to see her baby brother again. She would frequently glance around the room, noticing others that were emotional, and look confused as to why we weren't whole heartedly smiling with her. I'm so glad she got those last moments with her baby brother, and even though I'm not sure she will remember, I'm glad we have pictures that she can look at to remind herself of the joy she felt while holding him.

Eventually it was time for our family to leave. This is when I know for a fact that as the comfort of our families left the room, a team of angels and our Heavenly Father quickly filled the empty space. I sat in the rocking chair and was handed Dawson, finally dressed and wrapped in a soft, thick blanket. The monitors were removed so we could hold him without waiting for the wailing of the alarms. We held him tight and rocked him, as if we were just waiting for him to take an afternoon nap. He stared at us for only moments before he peacefully fell asleep in our arms.

A moment that before I went through it I would have imagined as heart-wrenching and absolutely devastating, is actually held as a dear memory in my heart. It's a memory of a time I felt nothing but love for my most perfect baby. It's a memory of a time I felt prayers streaming in at an outrageous speed. It's a memory of a time I felt nothing but love and comfort from my Heavenly Father.

We miss our sweet baby Dawson daily. But we know his frail body is no longer feeling the pains of this world and that he is being taken care of while he waits for us. We know that we will see him again, and we are so very thankful for that knowledge.

DAY 7

After talking to the doctors Sunday morning, we realized that he was slowly getting worse, and that the best thing for him would be for him to slowly be taken off oxygen. We knew this was the best thing for him, and that his time on this earth was coming to an end.

However, I had gotten really sick. I had a high fever, couldn't stop shaking, and severe pain in my side. After talking to Dawson's nurse, we decided I better head to the ER incase my incision had become infected.

The ER visit was quite entertaining. My incision looked fine. I didn't have any kind of infection. I got to have a CT scan. Long ER visit short- I was just still recovering. I needed to be eating better, taking my pain meds, and relaxing. Maybe I had over done it a tad-at least thats all I'm gonna post here. If you want the official of what my doctor actually said after looking at me then ask me in person. ;)

When we finally got out of the ER, I had to go lay down and sleep. I was beyond exhausted and couldn't handle anything more that day. We decided to keep him on the oxygen he was on, relax that day and night, and come back to it the next day. I would get to hold, stare, and love on him for a little while longer.

DAY 6

I honestly don't think I got very much sleep that night, if any, and remember feeling like I was just going through the motions but not really there.

This morning was supposed to be Emmy's first ever dance recital. She had practiced long and hard for months for this day, and I couldn't imagine not being there for it. So much had happened that week and I felt like I had put her on the back burner, and I just couldn't do that to her for this moment too.

I wore the same clothes I had worn for 2+ days, got in the car with Logan from the hospital, and we headed towards her recital. For the 3 minutes that she was on stage I was taken away from all of the heartache. She was beaming the entire time she was up there and couldn't wait for her next recital.

After her recital we headed back to the hospital. From that moment until that evening, I don't remember anything that happened. I'm sure there was a lot of sitting in the recliner by his bed, a little bit of holding him as to not disturb him too much, and a lot of wondering what was to come.

That night I lost it, which is probably an understatement if you ask my husband. I was confused. Friday night I thought I understood what was happening. I thought that even though he was pretty much on life support, that at some point his fragile little body would just stop responding to the oxygen. I guess I thought it would be that easy, and that we wouldn't have to make any more decisions for him.

But that night I needed more answers. I had been told he wasn't much longer for this life, but yet he was still here. I was mourning him but still trying to soak all of him in. Turns out it is hard to do both, and it can really throw you off.

It's hard to tell you how I was feeling, because unless you are going through it then you have no idea. I know a lot of people thought they knew what was happening. I know a lot of people thought we would be able to keep him but he would just be a little different. But that wasn't the case, and we knew that. Even if you came to visit us at the hospital, you couldn't know how we were feeling through all of this. You weren't there when we would talk to the doctors and nurses. You weren't there watching his every (lack of) move. And you especially were not there when we would cry to Heavenly Father looking for answers.

They stuck me back in a room with a hospital bed that night and Logan made me sleep, because that's truly what I needed to do to be able to make it through the next few days.

DAY 5: Diagnosis Trisomy 13

That morning we woke up and headed straight for the hospital for the doctor meeting. At this point we knew that there would most likely not be any "good" news, and that the chances of us just waiting for the Chromosome test to come back would be our routine for the next few weeks.

That morning at the meeting we were shown a picture of his brain. Most brains have ridges, his did not. We talked more about meeting with a neurologist so that he could tell us what parts of Dawson's brain were functioning properly and which were not. Honestly, I didn't want to know what wasn't functioning. I'll admit it: I was too scared to know. I wanted to pretend he could hear me, smell me, SEE me, and know that I was his mom. The last thing I wanted was for a doctor to tell me that he was nothing more than a cute little body.

With all of the awful news we kept receiving, we were still happy to hear that later that day we would be able to hold him.

My dad arrived that day with his camper in tow so that him and my mom would be able to stay as long as they needed to.

Around 5 the nurses called to tell us that they had to switch him from a normal oxygen tank to a non-invasive ventilator, which was pushing oxygen into his lungs and was one step away from intubation, because he had stopped breathing 10 times in one hour.

We were getting ready to head to dinner when we got a call from the nurses again. They wanted to know when we would be in because the doctor was coming in (on a Friday night) and wanted to talk to us. We decided that Logan, my dad who hadn't gotten to see Dawson yet, and I would go ahead and go in and talk to her before we went to dinner.

It was pretty obvious she didn't have good news for us. Not only had she come in on a Friday night, but she also asked us if we had eaten dinner yet. She pulled us into Dawson's little area, closed the curtain, and told us the news. She had gotten a call back about his Chromosome test. He did in fact have Trisomy 13.

At that time we were asked if we would like to sign a DNR, which means Do Not Resuscitate. Because we had signed the DNR and he had been having so many problems that day with breathing, we were under the impression that he would not make it through the night. Family members were able to come in and hold him and we had pictures taken of him.

Even Emmy was able to come to the hospital and see him for the first time. I'll never forget how she looked at him with such love, care, and worry when she saw the place on his hands that he had been poked multiple times for an IV. She loved when he would wrap his clenched fist around her finger, which before this night had been clenched too tight to hold. Everyone was able to hold him, but I think Emmy could have held him and sang "Twinkle Twinkle" to him all night. He didn't open his eyes much, but when she started singing his eyes would dart around.

It was surely an exhausting night for Dawson, but he was able to be held by those who wanted to hold him without having any apnea episodes. After everyone left, Logan and I stayed in Dawson's room. Logan slept in the horribly uncomfortable recliner, but I had to go to a couch in another room to get just a little sleep since my incision was not liking the recliner.

It was a restless night full of the unknown of when or if he would decide he could no longer breathe.

DAY 4

After the awfulness of Day 3, my parents decided it was time for them to start heading my way. It was clear that this was not going to be as easy as we thought and that we would need more support. I was also starting to worry about how all of this was affecting Emmy, so I was ready for my mom and dad to be there so that they could get Emmy back into her normal routine and make it easier for us to make trips back and forth to the NICU.

Before we went to bed on Day 3, his night time nurse came by to talk to us about putting a PIC line in Dawson so that they could stop having to re-do his IV.

At 3 a.m. that morning I woke up crying and didn't know why. Not 2 minutes later that same nurse walked in and told us that they had inserted his PIC line and that it was working great and that he did good with the procedure. One of our many prayers had been answered that night. He wouldn't have to be poked nearly as much as he had been.

That morning we weren't as excited for the meeting with the doctor. We were afraid of more bad news and didn't think we could handle hearing any more. After looking at the EEG, the doctors had agreed that there were no signs of seizures, which was a relief. However, they noticed that there wasn't as much brain activity in certain areas as there should have been. We asked to have a meeting set up with the neurologist in hopes that he could explain more about this and more about what areas of the brain weren't responding as they should.

Just when we thought the meeting was over, the doctor added one more thing that made us realize that there was a chance that no amount of money may be able to help him. She told us she suspected that he had Trisomy 13, which would mean that his life expectancy would be incredibly low.

I didn't even ask to hold him that day. He was going to get the wires and wrap off of his head from the EEG and have his brain x-rayed so I knew he would be exhausted from all of that and didn't want to cause him to lose any more sleep.

That afternoon my mom arrived and I was released from the hospital. Logan, Emmy, my mom, and I went back to our house. We ate a normal dinner, bathed, and Logan and I decided we couldn't handle it any longer. We had to get back to the NICU and see him. It felt so wrong being home without our baby boy. It felt wrong sitting in what was to be his room, no longer pregnant, but without him laying in his crib.

At some point that night I did what everyone always tells you not to do: Google it. I started to look up the signs of Trisomy 13 and even looked at pictures. While many of the pictures and signs were much worse than Dawson, I knew in my heart at that moment that he had Trisomy 13 and that he most likely would not be healthy enough to come home with us.

DAY 3

The night before, I had sent Logan home to get some real sleep. Poor Logan had been sleeping on the chair/couch thing that they have for the dads that really just looks like a really hard cot. Not only that, I was waking him up every couple of hours to help me get out of bed to go to the bathroom, get my pump ready, then walk Dawson's milk down to the NICU. Before that night I didn't realize that he was also taking advantage of Dawson's care times as well. So Logan was being a baby hog and getting to change Dawson's diaper and take his temperature, which before I sent him home that night I didn't even realize there were set times for that!

Wednesday morning, probably around 5 a.m. I walked down by myself because I was going to see Dawson and hand deliver his milk and change his diaper. While I was down there I remember talking to the nurse and she said every thing had gone great through the night. I was ecstatic. This would mean I would get to hold him AGAIN this afternoon.

We couldn't wait to get to doctor rounds that morning. He was doing awesome so maybe we would get to try to feed him a bottle on top of holding him?! Things could only get better.

Things didn't get better. In fact, more problems were coming to light. I just stared at the doctor as he told us that the nurse thought she had seen signs of a seizure in the night. I thought there was no way. I had visited my baby in the middle of the night. Everything was fine. He was fine. That afternoon he was to be hooked up to monitors for his brain and have a video camera on him to watch his movements.

But that wasn't all.

He had another chest x-ray to look at his lungs and within the past 48 hours there had been no improvement. Even worse-at some point his collar bone had broke. This x-ray also showed that his bones were incredibly brittle. They were going to do x-rays of his lower half to make sure all of those bones were ok.

Those two things meant one thing to me at that moment: I would not be holding my baby today.

The doctor would not tell us his suspicions of what kind of condition we were looking at with Dawson at this point. He just kept saying we would most likely have to wait 4-6 weeks for the chromosome tests to return to find out if he had a chromosome syndrome.

Craving something to be normal in my life, I sent Logan to go get Emmy and to take her to dance class. After she went to dance class I wanted her to come see me, because if I couldn't snuggle Dawson then I was going to snuggle Emmy.

After he left I made my way back down to the NICU. Unfortunately I had walked in on them hooking the monitors to his head for the EEG. That was the moment it became real to me. I never imagined that my baby would have to have an EEG.

I took no pictures on Day 3. I was hoping it would be a day I could forget.

As I sat there watching my baby sleep and cry, I wished more than anything that I could take all of his discomfort away. I wished he didn't have to have his head wrapped. I wished he didn't have to lay on and around all the wires. I wished he could stop being poked and prodded and having to get new IVs all of the time. And I wished the machines would all stop beeping at him.

We did a lot of praying that day. Praying that all of the tests would come back that he was fine. Praying that this would be but a fleeting moment in his earthly journey so that he could live a long and happy and healthy life.

DAY 2

This was by far the best day that week, and will definitely go down as one of my top days ever. Every morning the doctors and nurses would do rounds in the NICU and talk to the parents and get them up to date on what was going on with their baby. That morning they had decided it would be ok if I finally got to hold Dawson for the first time. I was over the moon and could not wait.

He was so precious. I hated all of the things he was hooked to (oxygen, feeding tube, IV, and a bunch of other things that I didn't understand) but I got to hold him and that's all I cared about at that moment.

While I was doting on my baby, there were things happening that I didn't get, but the doctors were throwing things around. Dawson's lungs weren't doing well so he was on antibiotics to get gunk out. He was having a hard time swallowing so they were having to suck saliva out of his mouth a lot. His umbilical cord was questionable, which made them suspicious of his kidneys and bowels. And probably more noticeable to others than to me at the time-his forehead was shaped a little different because his fontanelle had closed prematurely. The doctors also kept asking me about my blood Chromosome test results, but I didn't think anything of it. Surely they were just asking a lot of routine questions.

All of that meant nothing to me at the time because I looked at him and thought he was just my perfect baby that was just a little bit of a preemie.

How could anything be wrong with my baby? Everything was going to be fine and he would be in the nursery I had stewed over for months. He was going to wear the adorable outfits I had been very picky about. I was going to get home and finish his blanket because in a couple weeks he was coming home with me. And I couldn't be more excited. 

DAY 1

I'll be honest. I don't remember a whole lot about this day, just that we were overjoyed and sure that we would ALL be home by Christmas.
Dawson had a hard time breathing, but being that he was 6 weeks early I wasn't really surprised. But since he was 4 lbs. 12 oz. already I figured we would be in and out of the NICU in no time. He was so cute and I couldn't take enough pictures of him, even though they all looked the same and he was hard to see because of all of his wires.

I also finally got to hear his sweet little cry for the first time.

Proof that I was feeling like things were great that day- I had done my hair and make up. Excuse the ugly hospital gown. I hadn't changed yet because I was still scared of my incision and I don't think I had had Logan go get me clothes yet.

(I guess I should also say to excuse my roots. Good thing a couple weeks later my sister-in-law Jessie was able to come to town so I could have her fix me up.) 

Emmy had stayed with my mother-in-law the first couple of days. Unfortunately, kids aren't allowed in the NICU so Emmy couldn't go see Dawson. She was pretty excited to see pictures of him though. 

Happy Birthday Dawson Gerald Gray

The day before Dawson was born was a normal Sunday. We had gone to church and gone to Blackfoot to have dinner with Logan's family, but apparently I like to go into labor on Sundays. I had just laid down on my air mattress which was the only place I was able to get comfortable for the past couple weeks. The Walking Dead had just come on and on the commercial I was planning on getting back up to find a snack and a drink, which an hour later I will have wished I had just gotten it before I laid down because there would be no getting up to get a snack, instead I would be on my way to the hospital.

10:50 p.m.- Moments after laying down my water broke. At first I thought what most think at this moment. "HOLY CRAP WHY AM I PEEING MYSELF?!" But after trying, there is no stopping. I yelled for Logan as quietly as I could so Emmy wouldn't wake up but making sure he knew I meant business. He came running out of the bedroom and I told him my water broke. He must have thought it was a joke considering I was only 34 weeks pregnant but there was no denying the steady flow of water. This was no trickling!

11:00 p.m.- Luckily I had just been texting my friend in the neighborhood so I knew she was still awake. Ingrid came over to stay with Emmy and we rushed to the hospital, unlike when I was in labor with Emmy and we just took our time. Whether because I was nervous or because it was cold outside, I couldn't stop shaking.

11:15 p.m.- After standing in the check in area of the hospital leaking amniotic fluid for everyone to see, they finally get me to Labor and Delivery.

11:30 p.m.- My awesome doctor, Leavitt, shows up. They start to monitor contractions and baby Dawson's heart rate.

11:45 p.m.- They realize Dawson is not doing well with my contractions. They are causing his heart rate to fall and it is continuously getting worse. At this point they start telling me it would be best for him if we do a c-section, but it needs to be immediate with how his heart rate is falling.

12:00 a.m. December 1, 2014- I am getting ready for surgery and Logan is also getting suited up. Luckily I didn't have to be put under because of the position of Dawson so Logan is able to also be in the room.

Since you receive an epidural during a c-section, you aren't able to feel anything, just pressure. However, this pressure was not fun. There were times I felt like my insides were being squished and like I couldn't breathe. All of this was making me hot, so I had Logan fanning me. Well, he was so intrigued with watching them rip out my insides that he wasn't paying attention and kept wapping me in the face. Also, all of the movement of my insides and being hot started to make me shake uncontrollably and nauseous. If I could pick whether to have another c-section or normal delivery, I would have to say a normal delivery is way more fun! This was plain torture! haha.

12:30 a.m.- Our precious Dawson Gerald Gray was born. Unfortunately, I didn't get to see him yet because he decided to give his mom quite the scare and wasn't crying yet and had to go straight to the NICU.

Logan was able to go see him and take his first picture so I could see him.

Pregnant with Dawson

We were SO excited when we found out we were expecting again and that Emmy would be a big sister. It was also perfect timing because a few weeks later, Emmy and I would be heading to Georgia for several weeks so the majority of the time I would be the sickest I would be with my mom and have help. I also got really lucky because we (my mom, sister, and Emmy) had a girls trip planned to go to Disney World but I ended up not getting sick until we were on our way home from it.

Until about 20 weeks I was still sick and could barely eat anything of substance, but I was no where near as sick as I was with Emmy.

But of course, true to pregnant Katie fashion, I started having other issues. The rest of my pregnancy I was dealing with a kidney that was not emptying as fast as it should have been because it was a tad "squished". It would cause so much pain that at first they thought I had a kidney stone and were treating me for that, until they realized it wasn't that and that I would just have to deal with it. YAY.

I also had really, really bad acid reflux. I tried multiple medicines that didn't work, then found out the secret of pickles. Turns out pickles get rid of acid reflux, so I was eating about 5 a day, until about 30 weeks when just the thought of a pickle made me want to puke, so I started to just deal with the reflux, AKA not eating past a certain time and definitely not laying down until 5+ hours after I ate. But as you can imagine this was not a good solution for a pregnant girl, so mostly I just ate and ate and ate and prayed I wouldn't be able to taste the acid seeping up. TMI I'm sorry.

At around 16 weeks I started to have Braxton Hicks contractions regularly in the evenings. On our anniversary date when I was 30 weeks pregnant we were at a movie and I started to notice I was having contractions every 10-15 minutes and that lasted for 6 or so hours, but the doctor had told me that unless they were 8 or less minutes apart to not worry, at which point I would go to the hospital with the NICU if under 35 weeks pregnant. This continued to happen frequently until I gave birth.

A foreshadow to what I would find out 5 days after Dawson was born, I had accidentally taken a blood test to see if my baby would be born with Chromosomal syndromes. I say accidentally because I don't think I took this test with Emmy and unless you are someone who would abort your child then knowing this information wouldn't really come in handy since there is nothing you can really do. A week later I got a call- my numbers were 272 (if I remember right) and anything over 269 is considered a positive. The nurses said not to worry because it was just barely off so most likely it was just a fluke and my baby would be perfect. After telling Logan, we decided not to do the invasive test because the only Chromosome Syndrome we even knew of was Down Syndrome and we would love him regardless. At our next ultrasound, however, the tech looked for signs of a Chromosome Syndrome and found none. We were sure Dawson would be born perfect, and we were right, just not in the way we would have ever imagined.

Rewind to 34 weeks with Emmy

WARNING: This is a fairly boring story with no pictures.


Up until a month ago, I thought 34 weeks pregnant with Emmy was the most traumatic time in my life, so before that moment surely disappears from my memory, since it now seems so small comparatively, I feel like I should blog about it.

While pregnant with Emmy, I had a sharp pain in what I thought was my hip. At around 25 weeks it started to progressively get worse and worse, but would only last for a little while and I could typically sit in a position that made it disappear temporarily. After telling my doctor this, he assumed it was just a pulled muscle from my body growing, which would have made perfect sense. At 32 weeks, it had gotten to the point to where I would have to sit on the couch in a certain position to get any sleep, but I kept blowing it off as a normal pregnancy discomfort.

On a Sunday night, when I was home alone (at the time, Logan was working in North Dakota-11 hours away) I was in so much pain that I tried just about everything. I sat in my normal spot on the couch with no luck. I did multiple yoga poses in hopes it would just give me a moment of relief with no luck. I laid in a hot shower until it turned cold with still no luck.

By 4 a.m. I was done. I called my mom in Georgia and told her I either needed her there with me or that Logan was going to have to come home from work until I had baby Emmy, to which she responded, "Call your mother-in-law now or I will." Well, I was not calling my mother-in-law at 4 a.m. for a little pregnancy discomfort. How embarrassing! So I called Logan and gave him my same sob story, to which he told me that he was calling Lori (mother-in-law) because she could be there way faster than either him or my mom could be.

An hour later in walked Lori. At that point I was nauseous, laying on the cold tile floor in front of the open door (in February in Rexburg, Idaho) eating ice by the bag. I thought all I needed was someone to sit there and tell me everything will be fine, but she walked in, took one look at me, and told me to grab my purse and jacket because we were going straight to the hospital.

After lots of poking and prodding, and laying in an ER bed for what seemed like an eternity, they realized I was actually having contractions every 2 minutes and sent me to Labor and Delivery. Once there, they told me that since I was 34 weeks pregnant, they wouldn't stop the contractions but a few hours and quite a few painkillers later, they gave me a shot to stop the contractions. They told me they didn't know why I was in pain or why I was having contractions. And then an ever so kind nurse informed me that I would be more comfortable at home on my couch. I'm being pretty sarcastic when I say kind, and I wish I knew her name so I could tell her she was very wrong and I got home to my couch to realize I was in more pain than I had been when I first showed up to the hospital.

So Lori and I did as the nurse said and went home. It was a Monday evening so my favorite show was on (The Bachelor). After watching for a few minutes I got in so much pain that I turned it off. If you ask Lori, this is how she knew I was really hurting and that we needed to go back to the hospital. Haha. We had a sectional couch at the time with cushions that came off, so she grabbed those and made me a "bed" in the back of her Excursion. Turns out there are a lot of pot holes between Rexburg and Idaho Falls because that morning I had felt every single one, and the trip back was worse even with the cushions. The contractions would hurt so bad that I would moan (maybe even scream I can't remember) every time we hit a bump. (These contractions are also the reason I didn't realize I was in labor when I really was. My labor contractions were a breeze compared to these!)

Once there, they took me straight to Labor and Delivery and started the process all over again. At this point, I was so exhausted that I don't remember of that night. There were a lot of doctors, a lot of nurses, a lot of tests, and a lot of ultrasounds. All of which showed nothing but a very pregnant girl with contractions. Lori remembers the ultrasound better than I do, but apparently Emmy's hand was near the spot that I felt pain near my hip, almost "pointing" to it.

At 10 a.m. on Tuesday morning they decided they were going to take me for surgery to remove my appendix even though they knew it wasn't my appendix that was causing the pain. They hoped that once in there, they would be able to determine what was wrong. They also told me that since they didn't know what was going on, I could come out of surgery with Emmy having been delivered. Logan was then able to leave work in North Dakota and head to Idaho Falls.

Between Logan not being there before the surgery and the uncertainty of what would happen while I was in there, I was freaking out. They wheeled me into an all white room that had hip hop blaring, put a mask over my face and told me to take deep breaths. I don't think it took more than 3 seconds for me to pass out.

I am pretty sure I will never forget coming out of that surgery. When I woke up I immediately started crying hysterically. I couldn't swallow so they gave me the littlest sip of water then I quickly asked if they had to cut me all the way open. (I hate that stuff.) Nope I was still pregnant and I just had three little cuts and they were bringing in the machines to check on Emmy. A nurse came in, checked on Emmy, said she was fine, and quickly left. It happened so fast that I was sure they didn't really check on her and asked them to bring her back in to check again. Of course they didn't listen and just started to wheel me back to my room and calm me down. Hearing later I guess I really was a mess. Haha.

When I got back to my room the doctors came and explained to me that I had good reason to be in pain. I had an ovary torsion, which basically means that as Emmy was growing, my ovary was twisting and had cut off it's own blood supply and died, so they had to remove it. I was so incredibly thankful that they had finally figured out what was wrong and that I wasn't just crazy. Nine hours after Logan had left work (it usually takes him 11), he was at the hospital showered and with my things. I was so glad he was there to help me recover. After a few days of being at the hospital, we were finally able to go home.