Two days before Thanksgiving, I went in for my 20 week ultrasound. The whole family came so we could do some Christmas shopping afterward. We already knew we're having a boy because we did an early gender ultrasound in the Valley, but we were a little hopeful that maybe we'd still be surprised with a girl. We'd felt pretty good about deciding to call it good with four kids and an even two and two if it was a girl.
The baby was moving around like CRAZY and Sawyer was being just as unruly. The ultrasound tech was having a really hard time getting the baby in a good position to get all the measurements so Mike took the kids out to go to Walgreens or somewhere where Sawyer could jump around and yell without making such a disturbance. I hoped that the baby would calm down once Sawyer left, and started to worry about how I was going to handle two rowdy boys who seemed to egg each other on.
After the ultrasound, Dr. Connelly came in to review the results like he always does. He said that he wasn't confident in the findings they had because of how much the baby was moving, but that they saw a few things that "could be something, and could be nothing". He showed me two bright spots on the baby's heart but said they couldn't get a good enough look to tell if was indicative of something serious or not. He also said that there was fluid on the baby's brain, which is normal, unless it's above a certain measurement. Again, because the baby wouldn't cooperate too well, they didn't know for sure if it was cause for concern or not. He said that his gut told him it was nothing, but that he wanted me to do a level II ultrasound in the Valley just to be sure. I felt good about it, I guess my gut also told me it was nothing, and I went out to meet Mike and the kids.
Mike was pretty concerned when I told him, and I wished he could've been in there with me so he could've seen how un-concerning it seemed. I figured that even if it did turn out to be something, I couldn't imagine it'd be anything so severe we couldn't handle it. He'd had a strong heartbeat at every appointment and we could tell that his circulatory system was working. We decided to try not to tell many people about it, because there didn't seem to be any reason to raise concern.
I got a call from the perinatologist's office in the Valley a few days later, and they said they could only do an appointment on a Monday, because that was the only day they had a genetic counselor in the office and that I needed to see the genetic counselor and possibly have an amniocentesis.
After the appointment was set, I really started to freak out. Why did we NEED to see a genetic counselor and why would I need an amnio?
I started Googling and that really gave way to fear! Apparently, large ventricles on the brain and "cushions" on the heart are soft markers for Trisomy 21/Down Syndrome. From what I could tell, most doctor's offices had you meet with a genetic counselor if they suspected such a diagnosis and recommended doing an amnio to confirm it. One comfort was that those two soft markers didn't increase the odds by THAT much. One article I read said that it increased your chances of having a baby with Down Syndrome to about 1 in 400. The risk of miscarrying after an amniocentesis is about 1 in 500. Mike and I decided that even if they suspected Down Syndrome after the second ultrasound, we'd opt out of the amnio, as it seemed like it'd be just as likely that I could miscarry as a result of the amnio, as it was that he could actually have Down Syndrome.
We had about two weeks between the two ultrasounds, and I kind of drove myself crazy during that time with worry and mostly FEAR! I felt like if we just knew, we could start coping and making preparations, but wondering was so hard! I kept going down these "worst case scenario" roads. The funny thing is that in my head, even in a "worst case scenario", we'd be okay. Even if there was something "wrong" with our baby, we would unquestionably still love him and he would still have a perfect place in our family. Still, as much as I told myself that in my head, I had to distract myself A LOT to make it through the week!
The weekend finally got here, and we stayed pretty busy as soon as we got to the Valley with friends and family. I tried to fast on Sunday, but didn't make it too long before I became a weak, angry pregnant lady! But my whole family fasted for us so that put my mind at ease. Whitney watched our kids for us the next day so Mike and I could go to the ultrasound alone. (Especially after Sawyer's behavior the last time, we didn't want to risk them interfering with a potentially serious situation!)
We both felt fine in the waiting room, and even started to get a little frustrated that it took over an hour for them to call us back. I kept telling myself that we'd probably just get sent home with pictures of our healthy boy and it wouldn't matter that we'd waited so long. I also saw lots of miserable looking pregnant women, who were there alone, and I was glad I wasn't sitting in a high-risk OB's office alone!
Finally they called us back and we did the ultrasound. He was still moving around a lot, but not nearly as much. When it was over, the tech asked us if we knew why we'd been referred to them. I told her we knew that there were possible problems with his heart and brain. She said that she saw those issues, but that she saw multiple other issues as well. (Mike and I talked later and both said that we felt that "punch in the gut", "heart falling" feeling when she said that.) She said she saw a cleft lip and palate, micrognathia (or a small jaw), large ventricles on his brain, Dandy-Walker malformation on his brain, at least one heart defect and ecogenic (enlarged) kidneys.
Even with her saying all of that, maybe I didn't process it or something, but I still didn't know how to react. I guess I was overwhelmed and confused. What did it all mean? Were these more signs of Down Syndrome? Could they be a mistake? Could they be fixed? She apologized several times and left a box of tissues...so I assumed we were supposed to be crying and that wasn't a good sign.
We were supposed to meet with Dr. Pedron, the perinatologist after that, but he'd been called out of the office for something, so they told us we could meet with the genetic counselor first instead, and then the doctor afterward. The genetic counselor (Kelly) was so nice! She patiently answered all our questions and was very sympathetic. She told us that all of these issues together were indicative of either Trisomy 13 or Trisomy 18. (I'd seen both of those mentioned on websites that talked about Down Syndrome, but never looked into them because they're extremely rare, and I thought the odds were much more likely that our baby would have Downs, if anything.) Both are chromosome abnormalities where the baby gets an extra copy of either the 13th or 18th chromosome. It causes a whole slew of issues that make the baby "very sick".
I finally got the guts up to ask the question, "if it is a Trisomy, does that mean our baby probably won't make it?"
She quietly answered, "unfortunately, yes."
A lot of Trisomy (13 or 18) babies are stillborn or miscarried early on in the pregnancy. She said most parents do "comfort care" if the baby makes it to delivery, which is sort of like Hospice to help his passing be comfortable, but there are rare cases where the baby survives into childhood. With a Trisomy 13 or 18, in most cases, the baby's cells just aren't healthy enough to sustain all of the other issues they have going on. The only way to know for sure whether or not all of our baby's birth defects were caused by a Trisomy would be to have an amniocentesis. If it wasn't a chromosome issue, we'd be looking at lots of specialists and surgeries.
I asked her what she would do if she were in our position. She seemed like a nice, knowledgeable person. I was surprised when she responded that she would do an amnio and that if the results were positive for a chromosome abnormality, she would probably terminate.
She said she would highly recommend doing an amnio, to know for sure exactly what we were looking at, to see what preparations needed to be in place when he's born. She said Dr. Pedron's odds of having a miscarriage from an amnio were 1 in 1000. We were much more comfortable with those odds, and decided to do the amnio so we'd know how to proceed. The doctor was still out, so we scheduled the amnio for a few hours later and left to go get some food.
Whitney was a saint as I kept calling to tell her we'd be even longer than we thought. I was especially grateful that we got the time to get out of there together and get some time to ourselves to process everything. We went to In & Out and Mike went in and got us food while I sat outside and Googled Trisomy 18 and 13. The harsh reality finally started to set in. On most of the forums I read, people said that their doctors had told them that their baby was "incompatible with life" and discouraged them from continuing the pregnancy. Most of the government or medical websites I found said that the odds of the baby making it to delivery are low (about 20%). The average lifespan is about a week if they live, and the odds of him making it to his first birthday are about 8%. As Kelly had told us, most of those that make up that 8% are very sick, with the majority of even that time being in the hospital. From what I could tell, and what Kelly told us, Trisomy 13 is more severe. The medical issues are usually more advanced and the lifespan is shorter.
A huge part of my sadness and unsurety at that time was about how we could make these decisions that were going to inevitably come up. How could we as parents, decide to do comfort care, and not fight for everything we could do to keep our baby alive? Where is the line between doing everything to keep him here for our own comfort and letting him go for his?
We did a little Christmas shopping for the kids, which was a nice change of mindset, then went back for the amnio.
When Dr. Pedron first walked into the door, Mike and I both thought we weren't going to have the best impression of him. He went straight to my chart and started talking to the ultrasound techs without saying anything to us. But then he turned around and sincerely told us how sorry he was that we were having to go through this and talked to us about what to expect in different scenarios. The genetic counselor may have already told him that we had decided against termination, but I'm glad that he never brought it up as an option. I'm also glad that he never brought up the high possibility that the baby could pass before he's born. It was good to hear him only talk about options that dealt with a live birth.
Dr. Pedron had a great sense of humor and the amnio was actually not that bad. It didn't hurt and he kept the mood light throughout it. I felt like the ultrasound techs (there were two, one was being trained, poor girl!) seemed uncomfortable, like they were just waiting for us to lash out in anger at tears at any moment. But Dr. Pedron had just the right sense of humor without being offensive and was compassionate enough to let us know he was sincere when he said that he was sorry and that this was the worst part of his job. He said that he didn't think ANY parents, whether they were good parents or not, should have to go through this with their child. He also gave us a nice compliment and said he could tell how much we wanted this baby and that he could tell we were good people and that this always seemed to happen to good people, which made it all the worse. He said that a lot of people would try to demean the fact that he was our son because he's still a "fetus" with "issues", but that he believed that he was very much a person and part of our family and that we should ensure that he was treated that way. After reading about experiences a lot of other people have had with the doctors who gave them the news, I'm even more grateful we got to have Dr. Pedron!
After the amnio, we had to rush back to pick up the kids from Whitney and get back to Tempe to see a pediatric cardiologist. We were already cutting it close but having to go pick up the kids made it so we were going to be at least 30 mins. late. Whitney was awesome and packed our bags and got our kids ready for us so we literally left the car running, ran in, threw our stuff in the car and took off. I called the cardiologist's office on our way and told them we were going to be late and they were so nice about it!
I went in for the echo while Mike took the kids to get some energy out and then he came back and the office staff put a movie on for the kids while Dr. Stock explained what he saw. He said our baby has Teterology of Fallot, which is a four part heart defect. Basically, his oxygenated and un-oxygenated blood is mixing within his heart, and isn't pumping to his body correctly. Most of this is okay at this point, since he's not really using his lungs yet, but once he's born and is on his own, it's a little more worrisome. He said if this were all that was wrong, it's fixable and we'd be looking at doing the first of several heart surgeries in the fall. He said if we ended up getting positive results for the Trisomy, he didn't know of a surgeon in the state that would be willing to do surgery, as it's too risky for what would still probably end up being a short lifespan. Dr. Stock was also very compassionate and accommodating. He said he wanted to do at least two more echos, even if we did get positive trisomy results, so we could get a good idea of what the baby's health would look like at birth. Again, I didn't realize how much I would grow to appreciate doctors talking about him making it to birth! We also felt in great, caring hands with Dr. Stock, as he wished us luck with everything and stressed how much he truly hoped everything turned out alright. He apologized to us for having to go through such a stressful day and gave me a hug before we left.
Heidi called me as we were trying to decide what to do for food and offered for us to come eat dinner with them, which was perfect timing because I did not want to wrestle our kids through another restaurant.
Mike really wanted to take the kids to see the Christmas lights at the Temple and I almost resisted. It had been a VERY long day and I selfishly just wanted to be done. Before I could though, Mike said he thought that no matter what is going on in our lives, we need to make sure we're still taking the time to make memories with our kids. I'm so glad he had that perspective, because it felt so good to be there with our little family! It was so peaceful and kind of a tender mercy as the reality set in that the only times we may get to go do things as our whole family, may be while I'm pregnant.
We went to Heid and Jake's after the Temple and the kids were stoked to get to play with Cozi and Piper before we had to put them back in the car for four more hours. Heidi and Jake were so perfect about everything, they honestly could not have handled it better! We got to talk about what was going on, and talk and laugh about other things too. Really, it just felt good to be in the company of such good friends!
We called our moms on the way home and filled them in, since it looked at this point like either way, this was going to be a much longer and harder road than we had originally thought.
It was kind of nice to get four hours on the way home to talk to Mike about everything, and again, just be with our little family. The kids fell asleep pretty fast and we got to talk about life and how this would change things. The funny thing is that even through the sadness and tears, I asked Mike why he thought there was some aspect of this that felt so peaceful. He said that he thought it was because despite the difficulty of it, it was still so obvious to see how we'd been so blessed. The rest of the trip was bittersweet as we talked about the hard road ahead and counted our blessings.
We got home at around 11:30 Monday night, and at 3:00 the next morning, Sawyer woke up vomiting and was miserable the rest of the night. Mike had to work that day but still cleaned Saw's bed and washed everything while I bathed and cuddled with Sawyer. He was pretty sick for the next three days and none of us got very much sleep. I kinda started a ritual of rocking Sawyer to sleep and reading to him and playing him lullabies during that time, and before long, I realized that depending on what happened next, this may be the only time Sawyer and his baby brother had together. After that realization, that time with Sawyer took on a different meaning, and even though it meant sleeping in a recliner and getting little sleep, I really started to look forward to it, and kind of even missed it once Sawyer started feeling better!
They told us we'd probably get the amnio results that week, but that it could take up to 3 weeks to have the full results. For some reason, I didn't drive myself as crazy that week. Maybe because I could logically, and probably appropriately prepare myself for the new "worst case scenario", and even though it was worse that the "worst case scenario" I'd let myself go to before, there was some sort of closure in it. I couldn't imagine how our baby could have each of those large birth defects without some underlying cause. I knew we were in good hands with doctors and we'd already been shown by the people who knew thus far that we were going to have a great support system.
That Thursday, Sawyer had an appointment and while I was in the waiting room at the Dr's office, I got the call with the amnio results. I probably should've waited and called them back, but I couldn't help it, I just needed to KNOW, so I answered. It was a good thing we prepared ourselves for the worst case scenario, because the results were positive for full Trisomy 13. They said that normally, they would have had us come straight back to their office that day, but since we lived so far, they just scheduled us with another appointment at the same time as our next cardiology appointment in January and answered any questions we had over the phone. We didn't have too many (like I said, we had researched and prepared ourselves), but they were able to tell us that we weren't "carriers" of any genetic diseases. They said that this type of trisomy is "spontaneous" and that we shouldn't be concerned about it happening again in another pregnancy.
They again gave us the option to terminate the pregnancy, and said time was of the essence since I was 23 weeks and 24 weeks is the cut off in Arizona for abortion. I read a blog post, written by a woman whose baby was diagnosed with Trisomy 18, and she said that when her doctor gave her the results, he told them that they could either terminate, or treat every day as a gift and cherish whatever time they had. They went with the latter, and we'd already decided that if we were put into that situation, we would too!
Sal and my mom pretty much gave us an open invitation to babysit anytime so that Mike and I could have time to ourselves whenever we needed it. They were both also super easy to talk to and both called me or texted almost daily to check in. They both also held it together pretty good, which was so good for me! I didn't want to come home crying every day and looking at the hardship of it all. I loved that Mike and I could count so many blessings even after getting what would probably be the worst news of our lives, and I really wanted that spirit of optimism and gratitude to stick around, and that's been supported by everyone who we told.
I also can't say enough how much I wouldn't rather be walking this road with anyone but Mike! His perspectives and attitude are the one constant that always keeps me grounded and gives me clarity. His love for our kids and me is overwhelming. I've felt closer and more connected with him than ever before as he sits back and lets me have my good days and bad. I thought I couldn't love him any more than I did when he was taking care of us all after Sawyer was born, but he keeps showing himself up! :)
We'd thrown around the idea of naming him Hyrum. We both liked it, but I couldn't quite settle on it. Grant and Remi kept telling us they didn't like the name, and I really wanted the kids to be involved in helping pick his name. We had a Family Home Evening one night and we told the kids that the baby was really sick and that we may not get to bring him home after he's born. They asked a lot of questions, especially Grant. He wanted to know what was going to happen to the baby. We found so much comfort in being able to tell them that we knew he would be okay and that we would see him again.
Our "other parents", the Halls, brought us this picture not long after we found out there were some issues with the pregnancy. It's called "In His Constant Care". It's so fitting, and Remi especially was excited that "Jesus is going to take care of our baby".
There have been several times since this all started that she's blurted it out of nowhere when it's exactly what I needed to hear.
"Jesus is going to take care of our baby". He is already "in His constant care".
A few weeks later, Grant and Remi both started calling him Hyrum. We asked if they liked the name now, and they both said yes, as if we were the hold up! The name Hyrum means "my brother is exalted" and "noble". A perfect name for our kids to get to call their brother! I've also seen a few more meanings recently for Hyrum. One is "whiteness/purity" and the other is "borrowed". Again, perfect! Hyrum it is!
Mike and I were able to go to the temple not long after we got back, and that was an experience I'll never forget! I felt SO much peace and meaning in Hyrum's life, however long it may be. I felt the reality that our mortal existence is a tiny moment in our eternal existence, and that just because Hyrum's mortal life will probably be much shorter than ours, his eternal life has a purpose that we probably won't understand until we get to the other side, but I've felt peace in that too.
Although we are heartbroken, this time with Hyrum in our lives, having him on our minds, thinking, planning and praying for him, have been some of the most spiritual and meaningful times of my life! We love Hyrum so much, and because of him joining our family, our appreciation for our kids and the opportunity that we've had to raise a family and spend time with them has grown so much. The peace and love that we've felt from our Heavenly Father and Savior at this time has been physically tangible. I've never felt this close to my Savior. He truly is the Peacegiver, who can make darkness light, soften hearts and change lives!
Every morning I get to wake up and feel him kicking, every time I get to read the kids a story and know that Hyrum is hearing it too, I'm overwhelmed with gratitude and love for my little family, especially Hyrum! It's so hard to watch the kids when they're playing so well together, to know that their little brother isn't going to be there with them in a few years, and most heartbreaking, that they may not even really remember him. But I'm determined to use this time to ensure that that doesn't happen! We use his name like he's already a part of our family, because he is!
One of my best friends, AK sent me this video after we told them what's been going on. She lost a baby boy a few years ago. It describes so perfectly the beauty and joy that is still present in awaiting Hyrum's birth, and the time we've been able to have with him. We are so sad but so, so blessed!
