July 11th, 2022
Today we were prepared for a very long morning in several appointments with MFM. Nana & Pops drove in from out of town to spend the morning with Theo for us. We wanted them to bring him to the ultrasound portion of the morning so they could all see his little sister.
I've been hoping and praying desperately for a great 3D ultrasound picture of Abigail's face. So far, she is just like her brother. Both of them have always had their arms and hands up in front of their faces, hiding from the camera during the ultrasounds. But we do have an extraordinary picture from Theodore's 33 week ultrasound. I put it in an ornament for our Christmas tree and I have an aching desire to have a matching ornament and picture of Abby for the tree this year.
It was not to be. At least not today. Theo wasn't very interested in the ultrasound either - he was ready to play and get his wiggles out. At the end, Michael did pick him up and take him over to the screen to point out things and Theo was interested then.
The best part of the ultrasound (and really the whole morning) were the two words at the end "She's stable." Abby is weighing around 1lb 5 oz (as best as we can guess), her heartbeat was healthy, her organs all look good, and besides the anencephaly she is stable. There is no immediate concern of her passing in utero any more.
Here's the best picture we got of her face - not 3D but still something:
And here's a profile - that's her head on the left. You can see the outline of her nose and lips. She's got her hand up to her mouth:
Nana & Pops left to take Theo to the zoo after the ultrasound and Michael and I went to our other appointments. A very quick one with D, the nurse who did our last heartbeat check, and then a longer one with representatives from the neo-natal team, the palliative care team, a hospital social worker, and our nurse coordinator.
I was anticipating this would be an incredibly stressful morning. But it actually went quite quickly, we got no bad news, everyone was supportive and kind, and I have no complaints. It turns out the anticipation for today was worse by far than the actual day itself.
The neo-natal team is the team that will be taking care of Abigail when she arrives. I came in prepared to fight for Abby - with all kinds of disclaimers and requests based on my reading and research of how babies with anencephaly have been treated over the course of the last 50 years. There's a lot of variance today across the USA in hospital policies and how these births are handled. Since our story will be different, I won't recount the horror stories and sins against these children and their families that I've learned about. I will just say that I was overwhelmingly relieved I didn't have to put up a fight.
The doctor from the neo-natal team that more or less started our meeting talked about their general ideas of what they'd like to do for Abby when she arrives and I was immediately at peace. She was saying things I had come in prepared to insist for our experience and it is extremely comforting to me to know that without my ever having to say a word, we were already on the same page.
If Abby is born alive, we've asked that her life be spent entirely with us, being held and loved and cherished. The doctor assured us she will immediately be given to me and that they will be able to assess her while we are doing skin-to-skin. Abby will never be removed from our room for any reason. The only reason they would even take her from me would be if they need to put her on a table with more surface area just for a moment to swaddle her - but that would happen just a few feet from me.
Michael explained that we would like to have a monitored labor and birth. At our June 15th appointment we'd discussed pros and cons of natural birth and elective c-section with the MFM team. Theo was born naturally and we actually had a really lovely birth experience. My OB actually even told me not to tell my friends how smoothly it went because they'd be jealous or mad! I'm absolutely terrified of surgery so I'd asked in June what the chances were that we'd be facing a c-section.
Many people in our situation ask for c-sections thinking it may increase the chance that the baby survives birth. But it's not a guarantee, there doesn't seem to be much data supporting one birth method over another in these cases, and the team explained that there are actually several risks to an elective c-section that they want to caution us against - mostly for my safety.
The only one I'll mention - the one that matters the most to me and Michael - is that there is a slight risk that increases every time they cut into me that it will be harder to carry a future baby full term. Both of my babies so far have had anterior placentas - if I have a c-section and my next baby also has an anterior placenta, it could attach right over scar tissue from the surgery. This is bad because although I would be able to get pregnant, it is likely that the placenta wouldn't attach well over the scar tissue and would separate too soon, causing me to miscarry or deliver too soon and lose another baby.
Admittedly, it's not a big risk. But we were asked to consider how many more babies we would like to have. Because if Abigail gets a c-section, the rest of our babies will probably need one too. And that risk gets bigger and bigger with each surgery. And to be honest, the idea of "low risk" or "rare" is laughable to us now. Neither of us feel that anything is really "rare" anymore. We've had too many "rare" things happen now and we aren't willing to take risks. Even if they are small. It's already too hard for us to get pregnant.
So anyway, at that last appointment we'd told the team we'd like to do a natural birth with Abigail, just like we did for Theo. We were told they wouldn't do any monitoring - presumably to make it emotionally easier on me so that I don't know if her heart stops while I'm in labor. But we've talked about it since then and so today Michael told everyone that we will have a monitored labor and birth. We want to hear her heartbeat and we want to be able to be with her in every sense possible - especially if she is going to die in labor. We want to know and I am going to do this thing with her. Together.
We are denying life-saving measures. This means we will not have her intubated or sent to the NICU and we will not have them try to resuscitate her but will allow her to be born naturally and die naturally while keeping her as comfortable as possible. I have asked that these comfort measures include any suctioning they would do for any baby to help make her breathing easier, giving her oxygen if she shows any signs of seizing, and administering pain medication if she shows any distress. We've denied any shots or blood draws or anything being put in her eyes - the normal things done for other babies. We're not willing to put her through that discomfort.
Generally we're asking them to evaluate her specific case to see what she can do - to treat Abigail and not just general anencephaly. If by some miracle she is able to survive for more than a day or two, I've asked that they would give her a feeding tube but not right at the start. Only if she shows signs that she is going to hang on for a little while. Until then I will nurse her and we can feed her with syringes if she struggles with suckling.
Our conversation with the representatives from the palliative care team was much more concise. They will be the ones providing hospice care for her if she is born alive and gets to go home alive. This includes pain management and in-home nursing. I clarify "gets to go home alive" because Abigail will be going home with us one way or another.
This may be shocking to many people, but we will be providing care for her body and preparation for her burial ourselves. Most people don't know this, but there is no law saying you have to hire a funeral home director or use a morgue or even embalm your loved one. In our state, you don't even need a special license to transport a body. In fact, it sounds as if this process will really be rather simple: we only have to sign one form while we are at the hospital and Abigail will be discharged with me into our care. She truly will never be separated from me.
One of the most recurring themes I've found in others' testimonies is that the hardest thing they've ever done is have to give up their baby to a nurse or funeral home director to be taken to the morgue. This is hard enough. I refuse to have to go through that too. I've told Michael I don't think I could ever give her up to anyone but him. And so, one way or another, I am going to continue to carry her, even after she is born, out of the hospital, to our home, and all the way to her grave. And only then when we are at the final point of saying goodbye will I give her up. And I will only give her up to Michael so that he can lay her to sleep until Jesus comes back.
We are blessed to be working with a hospital that has more than one cuddle cot. Cuddle cots are basically cooled baby bassinets. They were made to preserve stillborn babies or babies who die shortly after birth so that families can have more time to say goodbye. We were very excited to hear they have some because that was one of our first questions we wanted answered.
My favorite part of this meeting was when a nurse from the palliative care team - surrounded by specialist doctors - spoke up in front of everyone and declared her support for what we are doing - choosing to carry Abigail full term and to enjoy her life and be the best parents we can for her until the very end. She is the first medical professional to do this for us. Everyone has been kind and even compassionate but no one has come out and vocally declared their approval and support until today. This was a humongous answer to prayer for us and something I've been longing for. It makes a difference to me to know that someone caring for us at the hospital is not just allowing us to do what we want but actually agrees with what we are doing.
Then something surprising happened. The social worker who had mostly been taking notes and smiling and nodding suddenly interrupted and asked, "Can I just ask, what kind of supports do you have!? I mean its obvious that you are a strong team and that you have some kind of supports because you are handling all of this so well!" She asked us who is on our team - who are the people in our corner.
I told her that I know this is going to sound so incredibly cliche but since she asked, I'm going to tell her the truth. And the truth is, Jesus is carrying us. We really do believe in Him and He is our strength. He has provided us with an amazing church that has been so supportive and has really rallied around us. We do know people who think we should have aborted Abby but we also have family, friends, pastors, and Abel Speaks in our corner - some even thanking us for giving her her best chance.
I'm not going to lie, I was THRILLED at her amazement of how well we are doing and I was giddy to get to tell all of them about my Jesus. It's like something I've heard older Christians talk about in stories and a prayer I've heard so many of them recite - the chance to witness for Jesus in a hospital because He is doing something in us that the doctors can't understand.
They were so generous with their time and their smiles and hugs. We showed them her name announcement and more than one of them asked if they could have a copy. Although I'm sure we kept them over time with our questions and stories, we were still out of there in plenty of time to meet up with Nana, Pops, and Theo for lunch.
Turns out the lead-up and the anxiety that it would be a hard day was so much harder than the reality. It was really just okay. Anti-climatic really. There was nothing for me to worry about. And today I am going to bed smiling. Because Abigail's stable, Theo had a blast riding the zoo carousel and spending the morning with his Nana & Pops, lunch was delicious, and today God answered our prayer to have someone at the hospital speak up in our support.
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