Oh baby Boy. We love you so so much. Our hearts ache for you.
I noticed around 16 weeks that I didn't feel like I was growing or looking as pregnant as I should but would brush it off and think, "It's probably because its a boy". At our 16 week gender check, he was measuring about 5 days small, which can be totally normal.
At our 22 week ultrasound, the sonographer let us know there were a few things she was concerned about and wanted looked at by a perinatologist...but not to worry too much. She let us know he was measuring about 19weeks and 4 days (about 2 weeks small), had some fluid on the back of his brain, and that he had a 2-vessel umbilical cord (vs. 3). All 3 things could mean nothing... but could mean something.
On Dec. 21 we had our appointment at Timpanogas hospital and while we were signing all the paperwork to get signed in, I noticed on our sheet a whole lot of stuff we weren't aware of.."cerebral defects" etc... and I was wondering if that was really our sheet?? but then thought, "Maybe that is what they are going to be looking for".
During the ultrasound, the sonographer let us know all the positive things she noticed... "this looks great", "that looks great", "the spine looks great"..."I see both bones in both arms and legs" etc... she did spend a lot of time looking at his heart... and let us know she was having a hard time seeing the other kidney... but in no way were we prepared for when Dr. Ball came in. It was like a sledgehammer. He asked us if we were told about the organ defects and we said No. Then he sat down and told us that our baby has several indicators of Trisomy 18 (meaning as the baby was being formed, a 3rd copy of the 18th chromosome was made throughout all or most of his cells, causing severe birth defects). We had no idea what that meant and he explained how serious it was and that our baby's chance of survival is very very small and that he was sorry. We sat there shocked. And then the tears came. Tom said he hated him at first with every fiber of his being for how blunt and straightforward he was with us! And it was before he, himself had even looked at our baby!! It was horrible. But now, we realize that there really is no good way to tell people that sort of news. And now we actually appreciate his straightforward-ness and he has been great at answering our questions and returning our texts quickly from his personal cell # he gave us.
He let us know we should have results within a few days...hopefully before Christmas.
We left and Tom went back to work (which is so crazy to me, but I think at the time we were in such shock and it was so surreal that we just went about what we were planning) and I went to pick up the girls from Jenni's. It was crazy though how many people reached out to us that day without knowing anything.... I got several texts from friends and ward members asking how the appointment went or that they were just thinking of me and wondering how I was.... so it was so strange that within the first day, our entire close circle knew what we knew. Now I see that as such a blessing... we had that many more prayers for us on our behalf. It was such an unreal, strange and hard day, it was like we had already lost him... but no, he is still here! And for that I am grateful!! and yes, I cried a whole lot that day but I don't think it really sunk in until the next day. The next day was horrible, I could hardly function. And the night before I subconsciously thought "well I guess I don't need my zofran anymore" and so I didn't take it and was super sick and puking the next morning....another cruel reminder that I am still very much pregnant and of what is to come is still coming but we don't know when. I could ramble on and on about all the emotions we went through and are going through, but I won't. There is no way to explain it. It is a deep sorrow that I/ we've never felt before.
By day 3 we were feeling so much inexplicable peace and love from the Savior that we were doing ok. We still hadn't heard anything by Christmas Eve but were somehow still able to have an amazing Christmas weekend with our families (that I will post about later).
That is another blessing we have realized.... when we first found out the news that anything was wrong... I was thinking "Really?? And right before Christmas??" But now I see that that was the best timing. I had 2 weeks off the salon, and could cut way back on LuLaRoe, Tom had lots of time off and we got to be together to cope and be around lots of family and friends which really helped boost our spirits.
The Wed after Christmas, I had an appointment with my regular OB. He had all the results from the perinatologist ultrasound and fully agreed with the specialist and basically only brought me in to tell me that Tom and I need to start making a decision of what is most important to us... 1)having the baby born alive as the number 1 priority and inducing early for that, because with every passing day the chance of him passing and having a stillborn is greater... and that would probably result in a C-section. or 2) letting nature take it's course and more likely have a stillborn, but will protect my uterus. Talk about a pill to swallow. How do you even make a decision like that!?
We cried and talked about it for a long time that night but never settled on either scenario. The only gut feeling I have right now is not to rush anything.
The next day, we got back the results from one of the 2 tests run on the amniotic fluid. It is called the FISH test which tests for genetic problems and can also detect Trisomy 13, 18, and 21.... and it came back normal. We (and the doctors) were now more confused than ever! That brought on more emotions and questions... "then what is causing these abnormalities??" "Is he going to be ok then if things can be fixed?" "is he going to live a life severely disabled?" "Maybe some of the things the doctor was seeing weren't really there?...maybe he was so convinced of what he was going to see that he saw what he wanted to see?" "Maybe he will be a miracle baby!" We had new hope but at the same time didn't know what to think at all!!
They told us that we need to just wait for the rest of the results to come in and that it should hopefully tell us more.
Again, we were blessed throughout all this to be able to be doing ok. Some days were ok and we were able to laugh and have fun! And some days were just downright hard. We went to Luke's birthday party and We were able to have a fun New Year's Eve party with some friends and it was great to be able to have that long night of girl talk and games. And we were also able to have a fun family day on Monday and took the girls to the museum of Natural Curiousity and to lunch (I'll also post about that later)
When we got home Monday afternoon, my OB called and told me he got the rest of the results in and that our baby has Trisomy 9. Again, another blow. Another unknown. He told me that he honestly didn't know much about it because it is so rare but that his understanding is that it is even worse than Trisomy 18 with essentially the same outcomes. And so it comes back to that same question of what we want our priority to be in our situation. So of course, when I get off the phone I start googling like crazy and there really is hardly any info on it! It is only about 2% of all Trisomy! But the info I did find is terrifying. And I didn't think to ask the Dr. while I had him on the phone if it was full, or mosaic, or partial... all have varying degrees of severity. Full is fatal, and partial or mosaic would mean a life of surgery and procedure after procedure to try to fix all of his problems. Tom was home that day for Observed New Years (THANK GOODNESS) because that was honestly probably the hardest day for both of us. We thought it would be good to finally have an answer but it was just worse. We were pretty cried and didn't even know what to say to eachother.... there was nothing to talk about.. just coping and feeling more scared than ever.
Tuesday, Dr. Ball's nurse called to let us know that we would be sent up to the genetic counselors at the U of U for an ultrasound and to speak with genetic counselors to go over everything with us. I asked her if she knew if our baby had full Trisomy 9 or not and she read me the report that said that they normally like to test 15 chromosomes but for some reason they were only able to test 12 and all 12 showed trisomy 9. And that the chances of mosaic are small. "So it looks like full". She also said she was going to send my info to the Angel Watch organization that is a great resource to help parents with fatal diagnosis babies.
The U of U called today and we have an appointment set for next Wed. So another torturous week of waiting. I still think I'm in partial denial, so I am ready to see these specialists and hopefully get some more concrete answers and really start to prepare and understand what is to come.
So from what we know right now, our baby will be returning back home to our Heavenly Father very soon after he is born if he makes it to birth. We are beyond heartbroken but are so eternally grateful to be his parents and feel blessed that such a special spirit chose to be in our family. The eternal perspective doesn't make it all better but it certainly makes the unbearable bearable. The eternal perspective, relying on the Lord, Faith, the Atonement etc. has all been "yes that's good and nice" up until this point...but now, we are clinging to it! It is all that matters! It is the only thing that is going to get us through this trial and I'm sure the many more that will come!
