Friday, April 4th, 2014
Mark and I went to get our 18 week Anatomical Sonogram. Up until this point, our baby was perfectly healthy - and aside from my morning sickness, there was nothing out of the ordinary about my pregnancy. We were so excited to find out if Baby Cahill would be a girl or a boy - couldn't wait to finally announce it. We sat in the waiting room, which was busy as always, just ready to find out.
Finally, we get called back, the warm sono-gel squirted on my tummy. The sonographer went really quiet, and then left the room saying the doctor would come in shortly. It was a little alarming to say the least, but never in our wildest nightmares could we have foreseen the next few weeks of our lives.
In came our perinatologist - highly educated with her Harvard Medical degree and countless years as the Chief of the Department of Maternal/Fetal Medicine at the hospital. If you want the top level opinion here, this is who you want to hear from. The words, "I'm very sorry, your baby is very sick," sucked all the air out of the room, out of my entire universe. I think I stopped breathing. I forgot who I was. She continued: your baby has Hydrops Fetalis. Most of my previous tests ruled out all the viral / Rh causes of hydrops (also at this point our 11 week sono and quad screening had ruled out any major chromosomal issues), so she concluded that it's most likely non-immune/chromosomal and said our baby had a 10% chance of surviving through the weekend.. or very much longer. She explained that our baby's hydrops was advanced and that there was pleural effusion (fluid around the lungs) and ascites (fluid in the abdomen) — and there's no treatment for this. Then she printed us a picture of our baby and exited.
Tears started streaming. What. Just. Happened. I don't know if I said two words together for the next few hours. I don't know where I would've been if Mark hadn't been by my side. We were so blindsided, we didn't even find out if our baby was a boy or girl. We just drove home beside ourselves. All the while, the aching question - was I just sent home to let my baby die inside of me? - ripped through my entire being. I honestly cannot image a situation more emotionally or mentally distressing. When weighed with the option to terminate, there is no choice - but still, the fear that we would find out that she was gone.. that I was just waiting for the worst? There are no words.
Hydrops Fetalis is a condition in which fluid accumulates - there are many, many, many causes - but the alarming, gut-wrenching part of it is that there's almost nothing you can do. It's usually a result of an underlying issue — and when diagnosed early (before 20 weeks) and coupled with chromosomal issues, the outlook is entirely, heartbreakingly grim.
We spent the weekend attempting to be normal.. me mostly falling into hysterics and crying myself sick. Mark just holding me, doing his best to hold us together. I have the most loving, amazing husband in the whole world. The range of emotions I went through, that he just weathered - I am so thankful for him.
Monday, April 7th, 2014
We followed up with our obstetrician. He's a great guy - supportive in everything, wants to be thorough as possible, fielded all of our questions with the patience of a saint, told us he was with us every step of the way - he ordered more blood work and scheduled the amniocentesis for the next morning. The only thing I remember was the absolute relief I felt hearing our baby's heartbeat - the most beautiful sound I have ever heard:
Tuesday, April 8th, 2014
We returned to the Maternal/Fetal Health Department for our amniocentesis the next day. During our preliminary sono, we found out our darling is a girl - we named her Clementine Grace. Clementine for God's loving mercy that He showers on her and Grace for the gift He's given us.
It was this sono that we initially found out Clementine has an atrioventrical septal defect, a heart defect - at this point, it seemed like her heart might be causing the hydrops.
The amniocentesis is not exactly a pleasant experience. However, I am thankful that said perinatologist performed it. I got to come home on bedrest - which is not as fun as it sounds, either.
It was today that beyond the shadow of a doubt, I realized I was feeling her move. Her little popcorn thump thump thumps. Mostly faint, and every now and again bam! Hello! My sweet little Spartan.
Thursday, April 10, 2014
We got a call from the genetic counselor, of the preliminary testing (100 cells) on the amniotic fluid, 100% came back as Trisomy 21 - Clementine has Down Syndrome. My world shattered again - not for the Down Syndrome, but for the confirmation that she has chromosomal issues, confirmation that her hydrops is most likely fatal and I really do not know what to do with that. I made the mistake of Googling message boards about it while sitting in the Buy Buy Baby parking lot returning some boy shoes I had bought just in case, and I fell to pieces. Mothers who gave birth to their "sleeping babies" at 37 weeks, 21 weeks - those who gave birth to babies who lived for 3 weeks, for 2 hours. The words "I thought we could do it, I thought we could beat the odds." Tears. Endless streams of tears. I just sat there in my car, crying, watching expectant mothers and mothers with babies walking around - I couldn't drive, I couldn't stay. (my heart goes out to all the mothers and fathers who've walked this road, who've known this pain.)
Tuesday, April 15, 2014
We had another Maternal/Fetal appointment, this time with a different perinatologist. This appointment felt more doom and gloom than the first, if that were possible. We felt more pressure to considering termination - that would never happen, I could never take my baby's beautiful heartbeat away from her. NEVER. So she arranged for us to work with a patient coordinator to meet with a pediatric cardiologist and a neonatologist / take a tour of the NICU. Mark was completely distraught at the thought of Clementine being in a NICU, but felt that it was necessary to prepare ourselves.
Wednesday, April 16, 2014
I'm not sure if I've mentioned how uncooperative our girl is. She definitely takes after her mommy. And a little bit of the stubbornness of her daddy. All of her sonograms, she just could not be bothered to let the sonographers see what they needed to - I love her so much.
Well today was the day to get a fetal echocardiogram and meet with the pediatric cardiologist. We sat there watching Property Brothers on HGTV (probably the only thing keeping me from jumping out of my skin). The sonographer was really nice, and at one point broke down when the guy the twins were working with said "I didn't think the roaches were so bad." It was so nice to hear laughter. Mark asked if she could see the heart, since all previous attempts left room for only vague diagnosis. She said that Clementine had finally rolled over and she was getting great views. Clementine was thumping around my belly for sure.
We met with the pediatric cardiologist and she told us that Clementine has an Atrioventrical Canal - and that 50% of babies with Down Syndrome get this. She said that the heart, despite the defect, had great pressure - and wasn't too leaky. She ruled out the heart as the cause of the hydrops. She said that there's some underlying chromosomal or lymphatic issue causing it. The world went flat again. She generously gave Clementine 8 weeks to live. Mentioned things like "fetal distress" and "if it was only the heart and no other issues, we'd be having a much different conversation." Apparently, Clementine's brain has been over-compensating for the "fetal distress" and has been diverting more blood to it, so that's good and bad. Good that her brain is at least taking care of itself, bad that it's causing deprivation elsewhere.
There's that nagging fact that most babies with chromosomal issues, who would ultimately develop hydrops actually spontaneously abort by 8-12 weeks, and you would never know that all of this was going on.. and here's our little girl, holding on, fighting for her life. Every. Single. Day. Every single day is a miracle - a miracle that she's made it that much further, that she's stayed with us that much longer. I love her so much. My heart just bursts with love and joy and thankfulness for her.
Days, weeks blur together at this point. So many other appointments. So many other questions, comments, concerns. The exhaustion.
We inevitably thought of "fetal distress" and her little body:
Do we let Clementine be? Let her stay with us as long as she wants and cherish every minute?
What if she makes it to birth and is too weak for surgery - her issues are too great? What if she's in so much pain, what if all she knows of life is suffering and then she passes on?
Not that it's an option, but if we "take matters into our own hands" would we spare her a horrible future full of painful medical issues?
Through all of this, we clung to our constant prayer — God please be merciful to our baby girl. Please do whatever is in her best interests and if that goes against the hope of our hearts, please give us the strength to understand.
Wednesday, April 23, 2014
One full week later, we went back to Maternal/Fetal medicine. After our sonographer finished up, the second perinatologist we met came in, cheerful as could be. She may not have been the same person - your baby's hydrops is almost completely gone!!! What?!!!! She told us she would take us as far as she could go. I asked if that was up to Clementine, and she said that it was. She went out and sent in the first perinatologist, who also came in giddy as could be for us - she did a little check herself, and declared the hydrops had gone into spontaneous remission! Miracle of all miracles. Considering how rare hydrops is - spontaneous remission is like getting struck by lightning a million times over. Thank You Jesus. Tears of joy!
We asked about her lungs, will they be able to heal/develop - she said since it was so early in gestation, her lungs should be fine moving forward. Will the hydrops come back? I wouldn't think so, she said.
We were just as punch-drunk and walking in a dream as before, but this time, all in the glory of God's miracle, His faithful love for our little one. In the span of a week.. in the blink of an eye, God changed my baby's life like He changes night to day.
There's still a tremendously long road ahead. There's still the pediatric cardiothoracic surgeon to meet with. The prospect of time in NICU. Any other challenges along the way. All we can do is continue to take this journey day by day. But for today JOY. THANKFULNESS. MIRACLES. LOVE.
Thank you for all your support, love, and prayers!! ♥
((an extra big thank you to our coworkers for all of their kindness during this time))
(((also our doctors and their staffs have been nothing but professional, caring, helpful, and knowledgeable. there's no way they could've made any of this less [insert adjectives here] for us, we are very thankful for their efforts and look forward to continuing this journey with them)))
21 weeks & 3 days | 130 days to go!