The following entries were originally posted on Caring Bridge and document the beginning of our story.
November 24, 2013
It is very hard to know where to start this story so I’ll start near the beginning. Joe and I tried to get pregnant for close to three years so when we finally found out we were back in August we were both shocked and excited. For those that know me well, you know that I’d always said I’d be ok if we didn’t have children, but as soon as I knew I was expecting, I was in love.
Everything at the beginning went smoothly. Our early ultrasound looked good. We heard the heartbeat. I felt really good– I was tired and wanted to eat… all the time… but never felt sick. Joe and I started dreaming and wondering if we’d have a boy or girl.
Because of my age, it was recommended we see a genetic counselor and were offered an additional screening ultrasound and testing. We decided to go ahead with the ultrasound because in my mind I thought it was screening for Down Syndrome and we figured we’d want to be prepared and possibly deliver somewhere in St. Louis versus in Illinois. You meet with a counselor first and they go through all the chances something will be found. And they are small. We went to the ultrasound room and that’s when our lives would change forever. The tech found a cystic hygroma on the baby. Basically excess fluid under the neck. It is an indication that something else is wrong– a chromosome or heart defect. We held out hope that it would go away or was caused by something so microscopic that you’d never know. With this information, though, we decided to go ahead with the DNA testing. They drew my blood which has the baby’s dna in it. And we waited two long weeks for results. They were inconclusive, meaning we were tested too early and had to wait and do it again.
In the meantime, we continued to have hope and also prepared ourselves for the possibility of Down Syndrome, Turners or a heart condition. We thought we could live with all of these. They’d present their own challenges but we would all get through. We had ultrasounds every two weeks. On the 16 week ultrasound, we were told the baby “looked good” and was most likely a girl but they’d confirm in two more weeks with the dna test and another ultrasound. But she was developing and growing and squirming around. It was beautiful.
We went to our 18 week appointment expecting to get the results of the dna. They were not back yet again. We’d have to wait 2 more days. The ultrasound started out really well. They confirmed it was a girl. Her brain, spine, heart, kidneys all looked good. The hygroma had gone away. We were so relieved. Then they found she had a club foot (meaning it is turned the wrong way). So along with the cystic hygroma and her small size the doctor told us she was concerned that our baby had Trisomy 18. And I felt like I got hit by a truck. Joe left with a positive hopeful outlook. I did not. And then we waited until Thursday for the call with the test results.
Thursday came and they did not have good news. Our little girl has a “high likelihood” (they have 3 levels on this test– this is the worst) that she has Trisomy 18 and coupled with the results of the ultrasound they are confident in the diagnosis. We are completely devastated by this news. Her chances of survival are extremely small. If she would happen to survive to birth, the medical complications are staggering. Heart problems, kidney issues, feeding problems, severe cognitive delays. And those are just the things I can pronounce. Less than 10% of babies make it a year.
We met with the genetic counselor again so we could have our questions answered. We are left with a series of horrible decisions to make and very little, if any hope. We are choosing not to do an amnio. This could confirm the diagnosis, but the experts are already confident in the diagnosis and it would not give us much additional info. I feel like we have been traumatized– and will continue to be– enough so we are forgoing that option for now. We are also choosing to continue the pregnancy. Moral and religious beliefs aside, I have seen my little girl wiggling on the ultrasound. I have talked to her. I was making plans for her future. Even though continuing the pregnancy opens us up to many more months of trauma before we can begin to heal, I feel like we are making the right decision for us.
We go to the St. Louis Fetal Care Institute at Cardinal Glennon in December. There we will once again meet with the genetic counselor; we have the option to meet with any of the specialists and a “footprints” coordinator. We are told they can help us navigate the difficult road ahead. Everything from deciding how and where to deliver, how much care to give her– if we want to provide comfort care or if we want to medically intervene should she make it to a live birth, and even how to handle things like baby showers and if you even buy a car seat knowing she is not likely to ever come home with us.
We’d been tossing around name ideas before all of this happened. Zoey was our frontrunner so we’re going with it. Zoey means “life” in Greek. It seems a bit ironic now, but she is still our baby. We were given her to take care of and love while we have her even if it is just for another week. Her middle name is Tamsyn… yes it is unusual but I searched for a female version of Thomas, which was my father’s name, and found it. It is important for me to have a name for her. She is our daughter even if we never get to meet her.
I know people do not know what to say to us and that’s ok. We don’t know what to say to you either. We don’t know how to get through the day at some points. We sure as hell don’t know how to make it through the coming months. I personally am extremely thankful we have so many family and friends that love us– all three of us. Your thoughts and prayers mean so much to Joe and me. We will need your support as we go through this. The joy has been taken from this pregnancy and we will look to find any glimmer of it wherever we can. I cannot begin to understand why this happened to us. Our worst nightmare has come true. Joe and I have always felt we had a strong marriage and I am thankful for that. I cannot imagine dealing with this with anyone else. We will not let each other fall. Yes, we cry and we are heartbroken. But we will try to get out of bed every day. Please know what we are grieving the loss of our dream of a healthy baby. We have already been through almost every stage– denial, anger, depression. Haven’t reached the “acceptance” phase yet. We are preparing ourselves for a long, difficult road ahead.
I will use this page to update you as we go through this journey. If you have questions, you may ask. I may not have the answers.
Joe and I appreciate all of your thoughts and prayers. They will help us get through this. We will survive. And we will love our baby girl.
November 27, 2013
First the medical update on Zoey. We had a “regular” (as in not the specialist and no ultrasounds) doctor’s appointment on Monday and heard her little heart beating so we know she’s still with us.
Tomorrow is Thanksgiving which seems to be a bittersweet time in our lives. On one hand we’re going through a horrific time and on the other you are supposed to be giving thanks for all the good in your life. It seemed like it might be hard to find things to be thankful for.
However, I spent part of the day with a new friend who came into our lives because of this. She reached out to me early on and has sent notes, prayers and kind words our way. She took me to meet one of the nuns who has been praying for us daily. And for just a few moments I felt like there were people that not only understood our pain, but also understand how close I feel to Zoey and how much I feel responsible for doing my very best for her while I can. I had a few moments of peace in the middle of the storm. So I can come to you today and say that I am thankful for so much that is good in my life.
Joe and I have great families who love, support and are trying their best to be there for us. We have amazing friends– from the one who went to dinner with me to give me a few minutes of “normal” to all those who have sent me texts, messages, cards and left notes for us. I may cry every time I read one, but they mean the world to me. I also have an amazing husband. Words cannot express how glad I am that I chose him (and he chose me). I can’t imagine how people who do not have such a wonderful spouse would make it through this. We are walking this path together.
And I am thankful for this life inside me. I certainly do not like what is happening to her, but she has brought us joy. Someone said to us “you are parents. You created life”. Zoey made us parents and nothing can take that away or diminish what it means to me. I look back at when we found out I was pregnant. I’d had all these cute ideas on how I would tell Joe if and when the time ever came, but as soon as I saw those double lines I just had to tell him. The first time hearing her heartbeat (and EVERY time I hear her heartbeat). Yes there is pain, but there has also always been joy tucked in there too.
I’m going to make every effort to find more joy during her time with us. I want her to know that we’re happy to have to have her. She’s heard so much crying that it’s time she heard laughter and happiness. So I imagine some people might think I’m crazy but there are things I want to do with her now since I may not get the chance later.
And that’s where you come in! Many of you have asked what you can do for us. I want to read to Zoey, but the books I normally read are not what I want her to hear. I want her to hear stories about me and Joe, how any of you out there met us, a story about one of your favorite memories of us, a story you like to tell your kids… anything. And if you don’t want to write, you can send Zoey your favorite children’s book.
December 6, 2013
My Story to Zoey
I want to first start this post with a few things I’ve had on my mind not because anyone has done or said anything—only for my peace of mind. I’m sharing this journey with you all because it helps me for a variety of reasons. It is extremely personal and I am not trying to exploit our situation. I merely want to tell you how I’m feeling and make sure that my daughter’s story is told. I hope that as we go along and quite possibly have some extremely difficult decisions to make that you will just accept that we are doing our best. We will do what we feel is in the best interest of our child. It may be a very different path from what you would take in a similar situation. I simply ask that you not make judgments. All of this has certainly opened my eyes to a few things. What I am 100% sure of now is that even if you have a similar situation you can never really know how and why someone has chosen certain things. Everyone has their own story, their own path they have to take.
On Monday we head to Cardinal Glennon for a series of appointments and also another ultrasound where we’ll hold our breath until we hear Zoey’s heartbeat. It occurred to me that while we’ve been reading her all the great stories you’ve sent us—both original and favorite children’s books—that I haven’t written her a story yet. So here’s my attempt:
There are so many things I want to tell you. And I thought I’d have years to fill you in on everything, but I’m afraid there’s no way to fit a lifetime of stories in the time we’ll have together.
I want to tell you all about the friends in our lives. They make us laugh. They hold us up when we are broken. You should know about all your aunts and uncles and why we’re so blessed to have them in our lives. About your cousin Hannah who gives the most genuine hugs of anyone I’ve ever met. And about how when we were little my favorite memories include her at our grandma’s house. I want to tell you about your grandpa who left us too soon, but was a great father to me. And how even though he claimed to hate cats, he didn’t kick out the kittens living in his ’66 Mustang. You should know that the women in my family are ridiculously strong and they love with all their hearts. Meaning they lose with all their hearts too. But how even after pain, they get up and love again. I want to tell you how your dad and I finally got together after so many years of “chasing” each other. But that despite all those years, when we did finally find our way to each other the timing was perfect. I want to tell you about our first date and the beautiful island where we got engaged and later married. I want to tell you how he changed my life for the better.
But since I don’t know how long we have together, I want to tell you the most important story. The story about you. I admit that I wasn’t sure about being a mom. I never really had the overwhelming “motherly instinct” that so many of my friends had. As I got older though, your dad and I decided to give it a shot. He really wanted to see what a “Joe Dawn” hybrid would look like. It wasn’t easy to get you either. We wished for you for a very long time. We were almost ready to give up. And then surprise! I was still in disbelief even after our first ultrasound. A few weeks later we heard your little heart beating. You know the rest—soon after the doctors found some issues and the long wait and prayers began. I’m sorry that you had to go through that too. I don’t want you to ever think all the tears and worry were because we didn’t want you. Quite the opposite is true. As soon as I knew you were in my life, I made plans for you and dreamt of beautiful things for you and I was quite simply heartbroken to know what was happening to you. But that doesn’t diminish what you mean to us and what you mean to the world. I don’t know how long you’ll be here, but I know that you have impacted my life in ways I never thought possible. You should know that I did not really understand how truly and deeply you could love someone who hasn’t even taken a breath in this world yet. So the most important thing I can ever tell you is that I love you. Your dad loves you. So many other people in our lives love you. No matter where this journey takes us or how long it lasts, you will forever be my daughter and one of the only true loves of my life. I’m hoping I have more time to give you more details on everything else, but just in case I don’t: I love you. And that’s all you really need to know.
December 10, 2013
St. Louis Fetal Care Institute
I should probably wait to write here until I’m having a better day, but I’m sure some of you are curious how our appointment went yesterday. I have good days and bad days. Today is bad. I’m angry, upset (and sad as always). Some days I have a better attitude, but I’m afraid today is not one of them. So bear with me.
The most important news first: Zoey’s heart is still beating and she’s still squirming around. In fact, the ultrasound tech and doctor have a somewhat hard time getting the pictures they want because she won’t hold still. They also confirmed that even if something would happen at any point now, I’d still be able to hold her after delivery and that was comforting. It is important to me to get to see her, hold her.
We are extremely impressed with everyone we met at the St. Louis Fetal Care Institute/Cardinal Glennon and grateful they are there. Even though they can’t change the prognosis for us, it is comforting to know they have helped other families through similar situations and are very supportive of any decisions we make. We met our nurse coordinator, Jenny. Turns out I know her from the Y so it was nice to see a familiar, caring face. We also met with a social worker, the Footprints coordinators, a doctor and a neonatologist. In one word: exhausting.
While we were in the ultrasound, I couldn’t help but think that it is both an amazing moment and a heartbreaking one. I get to see her moving around and growing, but at the same time they always identify another problem. I don’t want to go into details on what they found this time, but it absolutely devastated me. I’m not sure why this particular finding hit me so hard because I know the end result is the same, but I just can’t understand why my little girl has to suffer so much. It’s not enough that her chromosomes are so screwed up that her brain will likely not tell her body to perform the “normal” functions of life like breathing and eating, but her poor little body has to have physical deformations as well? Where is the fairness in any of this? So far her heart development shows she may have a small hole in her heart so not a major defect. As of now there are no indications that she will pass before birth: they look for things like major heart defects, size less than the 10th percentile (she’s in the 11th). But they can’t accurately predict how long we’ll have her.
The other extremely overwhelming conversation was with the neonatologist. The scenarios we need to plan for are nothing short of a nightmare. And the truth is we just don’t know how things are going to go. Zoey could make the decisions for us. But we still have to think through all of them and make plans. I can’t tell you how much I wish our toughest decision was whether or not to have an epidural.
The Footprints coordinators encourage you to make memories now. And we’re trying. But it isn’t easy to get through anything without thinking “this just isn’t how it is supposed to be”. There are moments that I can’t imagine how we’re going get through all of this. I’m sure we will. Joe and I help each other. We have a great support system, but it is a long, treacherous path. We really appreciate all the stories and books you’ve sent and would love to read her more, so please continue to send if you can.
Thank you all for all of your kind words, support, notes, texts: everything. I may not respond but please know I read every one of them (sometimes two or three times) and it is extremely comforting to me. Today Joe and I are focusing on getting through the day. And, as always, loving our little Zoey.
December 13, 2013
My father passed away 16 years ago today so of course I think of those times more than usual around this time of year and especially with what is going on with Zoey. So while I don’t have an actual medical update to give you today, I thought I’d tell you a little bit more about how I’m trying to handle all of this.
There were some really beautiful moments that occurred while my dad was sick. Obviously I would never wish his suffering upon anyone and if I could change our current situation, I would in a heartbeat. But that’s not an option. So my focus then and now is to find the beauty in the middle of the storm. It certainly isn’t easy. And there are days I do a terrible job at it, but I am trying.
I remember one night about a year before my dad died. We went to his company Christmas party and I got to dance with him. We knew he had cancer, but we had no idea that he would leave us a year later. We didn’t know at the time that he’d miss my wedding. We didn’t know it would be the last time we’d dance. It was just a simple moment between a father and a daughter, but I held on to that moment. At his funeral I played the Garth Brooks song “The Dance”. I don’t know how others interpret the song, but here’s how I’ve always looked at it: we don’t know where life is going to take us. And we’d like to be spared all the really miserable, painful times. But we don’t always get to choose. We do have a choice in how we deal with the situation and how we look back upon it. I choose to look for the beauty. And sometimes you have to look really hard. But there are moments of joy, moments of light even in the dark. If I wasn’t looking for those moments, I would have missed dancing with my dad. If I wasn’t looking for them now, I’d miss out on the quiet times with just Joe and me sitting on the couch and reading to Zoey. I’d miss out on appreciating how much we are loved. I told Joe early on in this that some people go their entire lives and never know how much they are loved. But we know every single day. Reading some of the stories to Zoey last night it really hit me. People love us and they love her—this little baby that nobody has ever held, met, laid eyes on. That fills me with wonder. I certainly didn’t choose this, but this is what we’ve been given. And I don’t want to miss out on the beauty. As the song says “I could have missed the pain, but I’d of had to miss the dance”.
The Dance, written by Tony Arata (performed by Garth Brooks).
Looking back on the memory of
The dance we shared beneath the stars above
For a moment all the world was right
How could I have known you’d ever say goodbye
And now I’m glad I didn’t know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I’d of had to miss the dance
Holding you I held everything
For a moment wasn’t I the king
But if I’d only known how the king would fall
Hey who’s to say you know I might have changed it all
And now I’m glad I didn’t know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I’d of had to miss the dance
Yes my life is better left to chance
I could have missed the pain but I’d of had to miss the dance
December 18, 2013
The Joy of Loving Someone
We went to the doctor yesterday and baby Zoey’s heart is still beating and I can still feel her moving around, so all is well today.
Joe and I met with a family that lost their precious daughter to Trisomy 18 in August. I cannot begin to express how thankful I am for the time we spent with them. They were so open and honest about their experience and their on-going journey through the grief. We know we still have a long road ahead and will be forever changed by this experience, but are confident that we will still find joy and happiness in our lives. All of this will be a lesson for us in love, hope, faith and resilience. Another friend sent me a blog from a woman who lost her daughter. She said something that stuck with me: “You taught me that the joy of truly loving another human being always outweighs the void that is felt when they are gone.” And while we haven’t lost Zoey yet, I can say that it is a joy loving her.
We don’t go back to any of the doctors until January (and so glad to have a little break!) Have a Merry Christmas! Thank you all for your continued love, support and prayers.
January 3, 2014
The Magic of Disney
We had another appointment yesterday with an ultrasound. One of the many strange parts of this journey is that we have a new status for how appointments go: awful or not awful. Yesterday was not awful so we consider that a win! Zoey’s heartbeat is still going strong and she was quite active yesterday. She also didn’t really want her picture taken. They got one of her profile and then she rolled over and refused to let us see her face. She’s tipping the scale at a little over one pound. There’s some extra fluid, but nothing to panic about yet. They did mention that if there is too much fluid they can sometimes drain it and I certainly did not ask for details on how that actually happens. There are some things I just don’t want to know. Just praying that it doesn’t get to that point! Often times the extra fluid is an indication that she’s not swallowing. There’s just so much that we don’t know until after birth. They can only tell so much from the ultrasound. The doctor was great and basically said let’s just try to get her at least 14 more weeks (they certainly don’t want her coming early—she’ll already have enough issues that adding those extra complications will not help anything). He also encouraged us just to focus on that: get her here. If she gets to go home with us we can buy anything we need later. Someone can always make a run to Babies R Us.
I have to admit the holidays were rough. You just never know what is going to trigger a reaction or emotion and I certainly experienced that on both Christmas and New Year’s. It is hard listening to all the “let’s put 2013 behind us and have a better 2014” talk when we’ve been all but guaranteed a really rough 2014 already. But we made it through and are still trying our best to make memories now. As you know, Joe and I are beach people so we did try to find a way to make our way back to the ocean before my “travel ban” goes into place. But all along I’ve had this little nagging voice that told me to take her to Disney World. And then my sweet friend went to Disney Land and sent Zoey Mickey ears. I also read a book from a woman who lost her daughter – it’s called “I will Carry You: The Sacred Dance of Grief and Joy” and they went to Disney World while she was pregnant. So while I am fully aware that Zoey will not actually be able to “see” Cinderella’s castle, the fireworks and the parades, I am hoping she can feel the magic. So we’re heading to Disney World soon.
There is a song called “I will Carry You” as well—the woman I mentioned above is married to a man in a Christian music group and they wrote the song. I found it soon after we found out about Zoey’s condition. I even had the Christmas ornament I had made for her engraved on the back with the words “I will carry you”. So while I hate to make anyone cry, I’ll include the lyrics & “You Tube” link to a performance of it below.
As always, thank you for your continued thoughts and prayers. Joe and I are still amazed at the warmth, generosity and love we get from everyone.
I will Carry You
There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?
People say that I am brave but I’m not
Truth is I’m barely hanging on
But there’s a greater story
Written long before me
Because He loves you like this
So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who’s chosen me
To carry you
Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says…
I’ve shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?
I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who’s chosen Me
To carry you
January 21, 2014
Since I last wrote, we took our trip to Disney World! So first the medical update—there’s just not much to report. I now see my regular OB every two weeks like a “normal” pregnancy. She checks for Zoey’s heartbeat. She’s still kicking and I love it every single time. I have mild panic attacks when I don’t feel her for a while (and yes, I am probably giving her too much caffeine and sugar just so I can try to feel her more—or at least that’s my ice cream & cookie excuse). Our next visit to Cardinal Glennon is in February for another ultrasound. The “decisions” have started and I’m just hoping and praying we’re making the right ones as we go along.
Disney World was a great trip. Our resort was lovely—the Wilderness Lodge modeled after the hotel in Yellowstone Park, complete with geyser. It was much warmer and only rained a few times—but not enough to ruin anything. We visited Animal Kingdom, Epcot and Magic Kingdom. We met lots of characters including Mickey, Minnie, Goofy and Donald. They were all great—it was the princesses that caused a few awkward moments. The problem with “human characters” is that they can talk and ask questions. And I, unfortunately, have not learned to stop talking to avoid awkward encounters. So when the princesses asked when Zoey would be back to visit them, I think I made Aurora and Cinderella feel bad.
We watched the fireworks over Cinderella’s castle—which was awesome and hard. It was great to stand there with Joe and my mom with little Zoey kicking inside, but then they play “When You Wish Upon a Star” and you sort of want to pluck Tinker Bell down from her zip line and smack her. Despite the hard moments, I am so glad we went. It was a brief respite from the cold weather here and more importantly a great time to make memories with our daughter.
February 4, 2014
I’d like to start by wishing my wonderful husband a happy 40th birthday!!! He doesn’t look it, does he?
We had another appointment at Cardinal Glennon yesterday. I know I said last time that we’ve started considering appointments either awful or not awful, but as it turns out they can be both. First, her vital stats: Zoey’s heart is beating well and she now weighs in at about 2 pounds. She’s comfortably settled in with both feet poking at my ribs. She’s very active and still likes to dramatically put her hand in front of her face for the ultrasounds. I mentioned that I don’t feel like I’d ever make the “kick counts” that so many people talk about and it seems odd because she’s obviously extremely active. I still have excess amniotic fluid which is giving her more room to float so that could be why I don’t feel her as often—although there are times I think she’s doing cartwheels and taking great pleasure in punching my bladder. I love those moments (even when they come in the middle of the night) and hope that she starts punching hard enough that Joe is able to feel her soon too.
We met with the neonatologist again to see what we need to include in our “birth plan”. It was awful. How are we supposed to go through this and remain even somewhat sane on the other side? While the plan is just a guideline of our wishes and is in no way set in stone, the discussions that surround making the plan are nothing short of horrific. Joe and I have to go in with a good idea of how we feel about quantity versus quality of life and what exactly that means. Part of the problem is that nothing is black and white except that we love her and want what is best for her. The grey is what exactly that means. I can see both sides. Some parents will choose to do everything medically possible to prolong the life of their child. Some parents will choose to only provide comfort care. In the end, parents have to do what they think is best for their child. There are just so many variables. And they can change in a heartbeat. I believe Joe and I will be on the same page thankfully, but we were just too exhausted after yesterday’s talk with the neonatologist to even go into any sort of discussion. We will get there. We have to weigh what is best for her health, her comfort, her quality of life and we also have to take a good long look at what we would be doing out of our selfish desire to keep her as long as possible versus letting her be free of suffering.
After the long, exhausting meeting with the neonatologist, we had an ultrasound and were able to see Zoey squirming around. Again, it goes back to being both amazing and heartbreaking. She looked so real this time. We saw features we haven’t seen before. The ultrasound tech mentioned it looks like she has long toes—like mine. And it broke my heart wondering what other features she’ll have. My eyes? Joe’s coloring? And all you can wonder is “how?” How are we going to get through this? How did this happen to her? How is this diagnosis true when you can see her wiggling and flipping and hiding from the ultrasound tech? How are we going to say goodbye when it is time?
We’re still making memories the best we can. Our friends gave us a session with a photographer to catch the “baby bump” and she did a great job. We took Zoey’s “things”: the blankets that have been made for her, the books we’ve been reading to her, Mickey Mouse ears and her new teddy bear.
I know some of you have asked what you can do for us. All we ask is that you continue to keep us in your thoughts and prayers. Pray for us to have the strength and wisdom to make the best choices for our daughter.
February 27, 2014
Yesterday we met with Dr. Vlastos, had another ultrasound and got set-up to deliver at St. Mary’s. Little Zoey is now weighing in at 3 pounds so still small, but growing. She was happy to show off her heart, kidneys and legs but she still puts her hand in front of her face so we don’t get to see her pretty little nose or eyes. I thought she was embarrassed, but Joe thinks she’s a drama queen. Her heart is still beating well and there are not currently any signs of pre-term labor. I’ll keep her with me as long as possible! As much as I want to hold her, I also want to keep her safe for as long as I can.
We will not get a good idea on what her prognosis will be. We just have to wait until she arrives on the planet. Obviously for a person who likes to have plans, this is very hard. But there’s a part of me that also believes it is for the best. If we knew for sure what the future holds, would it change the way we feel? Or the way we parent her now? The uncertainty of her future with us makes me appreciate every kick and punch she delivers. And I still love sitting on the couch reading to her. Joe’s reaction when she kicks hard enough for him to feel her is priceless. I would not trade these moments.
As for me, I still have a lot of excess amniotic fluid. I’m measuring somewhere between 34-40 weeks even though she’s so small. I will start weekly monitoring to make sure Zoey is still doing well and that I’m not showing any signs of pre-term labor. The excess amniotic fluid can promote labor or cause me breathing issues. I’m resolved not to have a giant needle stuck anywhere near my child though, so let’s just hope it makes me look big but causes no other issues. Let me warn you, if anyone thinks it is a good idea to tell me that I “look huge” or any similar sentiments, I can’t guarantee your safety. Otherwise, the physical symptoms of pregnancy are the normal aches and pains—swollen feet and ankles (please don’t mock my old lady shoes), discomfort sleeping and the inability to zip my coat (another reason warmer weather is welcome anytime now!). But I have to say that I don’t have any real complaints about pregnancy. I definitely enjoy carrying Zoey.
I’m hoping for warmer weather soon so we can take Zoey to the park and to the Zoo. We continue to read to her and we have little talks on my way to work in the morning. I’m starting to assemble a photo album of all her ultrasound pictures and my feeble attempt at “baby bump” photos. As always, thank you for the continued support. The closer we get, the more anxious I am about her delivery (and not the physical part of it—I could not care less about that at this point). If I seem on edge or just start crying, just throw me a Kleenex and know that it will pass.
March 11, 2014
34 Weeks—and Zoey is 3lb8oz
Zoey passed her first “non-stress test” last week but I’m wondering if we will or need to continue doing them. I don’t feel like it will change the outcome of anything. What will be, will be. All the appointments are stressful and I wonder if our time is better served just loving her. I’ll be back at Cardinal Glennon Thursday, so I will try to think clearly and ask more questions. I thought she was pretty cute on the ultrasound last time though—she was tucking and untucking her legs. And of course hiding her face.
I had a regular OB appointment yesterday followed by a pediatrician. I left feeling completely useless. I didn’t prepare a list of typical questions I think you’d ask when looking for a pediatrician. Maybe I was completely unprepared, but what do you ask other than “are you willing to see my child who has Trisomy 18?” We have no idea if she will ever see this pediatrician and if she does, we have no idea what condition she will be in—will she have breathing tubes, feeding tubes? All of the other questions seemed silly to ask. What are your hours? What are your views on a vaccination schedule? I realize all these questions are important for those of you expecting or who have recently added additions to your family, but for me, sitting there yesterday with only a few weeks to go and feeling my tiny little baby kick, it all seemed so trivial. In the larger scheme of things, all those questions may not even be questions we need to ask. I may not get the chance to care if they have a “sick side” or a “well side”.
I also know that I’m overly sensitive to those around me who are pregnant too and are excited about their upcoming due dates. I know that when they complain about how “miserable” they are, they aren’t looking at my situation and putting their swollen ankles in the same category. I realize that all the people asking “are you ready” are doing so to be nice—they aren’t focused on the nightmare that may soon unfold for us. To answer that question for all of you who are also wondering: yes, I want to hold my baby girl. I want to kiss her little forehead and see the face that she keeps hiding from us on the ultrasound. I want to look into her eyes and tell her how much I love her. But I don’t want to let her go. And I know that is a very real possibility. I don’t want to hand her over to a stranger, never to see her again in this life. I love to feel her little feet kick me and I don’t want that to stop. I don’t want that to be gone.
I’m trying desperately to focus on the positive. To find the joy. But I can’t express to you how difficult it is sometimes. Our future is terrifying to me. I wake up at night and the dark thoughts enter. It’s hard to make them stop. I know that we could have her for a little while, but it will never be long enough. And what is that going to be like for her? Is she going to be in pain? Is she going to be miserable? I certainly don’t want that either. What is best for her might in the same breath be our worst nightmare.
I want her to feel our love more than anything. I pray she does now. And I pray the day she arrives that she feels it from us and everyone around her. But that doesn’t stop our pain or fear.
That’s where we are now. I don’t want to speak for Joe, but I know he’s had similar thoughts and feelings. Thanks for reading and for letting me at least express mine. I’m not looking for sympathy or solutions, but you’ve all been following our story and so supportive of us that I felt I could share with you our bad days too. Please continue to send us your good vibes, thoughts and prayers. We definitely need them.
March 25, 2014
I think today’s update is: no news is good news. We’ve been going for the non-stress test for a few weeks now and all is well. Zoey’s heart is beating well and I don’t have any contractions while on the monitor. She’s still growing—about 4 lbs 8oz now! After one of the tests, the doctor referred to her as “running a marathon” in there which is twice as much as I have ever run and certainly more than I’m doing now so I’m sure all my Red9 Runner friends would be proud. I still feel fine, so let’s hope that continues over the next few weeks too.
We had a sweet little moment at the Zoo on that one beautiful spring Saturday before it snowed again. As Joe and I walked through the butterfly exhibit, a little butterfly landed on my belly where Zoey often kicks. We appreciated the moment and hope it’s a sign that she feels our love for her.
Hopefully there won’t be much to report over the next few weeks and we can try to enjoy this time before her arrival. As always, thank you for your continued love and support.
April 21, 2014
40 Weeks (and 2 days)
In case you were wondering, yes I am still pregnant. Zoey passed her due date and has decided to stay warm and cozy. I have an appointment Tuesday and then again on Thursday for monitoring. I still notice her rolling around, but not as many kicks as before. Maybe she’s running out of room—she is up to 6.5 pounds now! We have not set a date for induction, and I am not in a hurry to do so. There are just too many implications that go along with that for us. Joe and I would much rather Zoey make her own decision on when to arrive.
Over the next few days, please understand that while I appreciate all of your calls and texts, I may not return them. I appreciate knowing you are thinking of us, but please know that both Joe and I are extremely scared and anxious about Zoey’s upcoming delivery. I am trying to cherish these last few days that I get to carry her with me. The future is uncertain, but I have her now. It’s also very difficult to answer the question “how are you”. Physically I feel like I am doing extremely well. Emotionally is another story. I had no idea that reaching her due date would bring up so many new feelings. I cried often throughout the weekend. It amazed me that I had new thoughts too—I really believed that I’d processed most everything over these last few months. But on Saturday I was hit with overwhelming feelings of guilt— feeling like something that should be bringing so much joy is also bringing so much pain to those around me. Again, I know the rational side says that I am not at fault, but those thoughts still creep in when you least expect them.
We still have no way to predict what her delivery will be like and how long we’ll have her. Maybe it will be a few hours, maybe a few months. What will be, will be. I’m really trying to focus on just making every moment of her life full of joy and love. I want her delivery to be that too—a joyful event. We are welcoming our daughter that we love more than I ever imagined possible.
May 2, 2014
Welcome to the World!
I’m sitting here holding my beautiful daughter! Zoey Tamsyn joined us yesterday, May 1 at 1:34pm. She weighed in at 6.2 pounds. I won’t go into the details of her delivery, but I will say she is worth every moment. She is doing well. She’s breathing on her own and is the most amazing little person. Joe also appears to be completely taken by her. It melts my heart.
We know our journey is not over but we are cherishing every moment we have with our beautiful daughter!
May 9, 2014
Happy 8 days Zoey!!! We are thrilled that our little jellybean came home with us on Monday. We honestly did not think we would see that day, but as I sit and type she’s napping cozily. We are completely in love with this beautiful little baby and happy to report that she’s doing well right now.Unfortunately, her prognosis has not changed. They confirmed the Trisomy 18 diagnosis when she was born. And just so you’re not surprised when I start posting pictures, she has a cleft lip and club feet. And both of them just make her— her. She’s gorgeous. And perfect just the way she is. She also has a heart murmur which you obviously can’t see, but you can feel when you put your hand on her chest. Many people have asked when these things will get fixed. The short, bluntanswer is: they won’t. We are not goingto subject her to any surgeries especially ones that are merely cosmetic. We aren’t even guaranteed to have one moreday with her and there’s no way we are sending her to a hospital or subjectingher to one ounce of preventable pain. Surgeries will not help her long term survival. Our only goals are to love her completely and unconditionally and to make her life with us as wonderful and comfortable as possible. Wings, a pediatric hospice, is working with us on Zoey’s care. They have nurses that will visit afew times a week as well as social workers and expressive therapists to help usnavigate the road ahead. As always, no one can give us any idea how long we’ll have her. We are focused as much as possible on making the most of every minute with her.We are covering her in love and kisses. She really likes to be held at night—which makes for a tired mommy, but it is totally worth it.
I’ll give you the condensed story of her arrival here. I was induced last Wednesday after it became clear that she had no interest in arriving on her own and prolonging delivery would only put her in danger. By Wednesday night, I’d made very little progress so they decided to try something involving a balloon. I definitely won’tgo into detail on that—but don’t be surprised if I completely freak out nexttime I see anyone blowing up balloon animals. Wednesday night was painful and uncomfortable between the balloon, monitors on my belly, contractions, only being allowed to lay on my right side, oxygen mask and no sleep. They were definitely testing me, but we were hoping that labor would progress after all of that. Zoey was being monitored constantly to see how she was reacting to the contractions. By Thursday morning after I was able to get an “early epidural”, they noticed her heart rate would drop with each contraction. The doctors came to us with a choice: continue labor for a natural birth and most likely lose her during the process or have a c-section. The c-section did not guarantee she’d join us alive, but gave us the best chance. It was an easy choice. I did not carry her all this time just to lose her during labor. They prepped me for the c-section and that’s when my little drama queen had to make things interesting. We thought we’d have an hour or two after the decision was made, but my heart rate started to drop and so did hers. It became an emergency to get her out. I wish Joe could tell you the story as he witnessed it all. As soon as they cut me open, she flipped and became breach. She stuck her hand out, but apparently that’s the only part of the body they can’t deliver first so they stuck it back in and had to go in and try to flip her. They were finally able to get her out and she was not breathing. They took her to the table and gave her oxygen through a mask and got her going. I don’t know how much time went by that she did not breathe—all I know is that I was holding mine until I heard that first little cry. It wasn’t loud, but it was there. Our baby girl was alive! Joe was able to bring her to me so I could see her beautiful face. After they sent us back to recovery, she was baptized and Joe gave her a bath. A few hours later we were in our own room holding this precious gift. I think part of me is still in shock. Thankfully we have a wonderful support system and the troops rallied to make sure we had everything at home when we arrived on Monday. We went from thinking we’d come home empty handed to bringing a living, breathing beautiful girl home.
The last week has been indescribable. It is beautiful as well as exhausting, overwhelming and a million other things at once. But we could not be happier to have her. I cannot begin to thank everyone at St. Mary’s enough. Our question of why did we know during the pregnancy was answered: if she’d been delivered anywhere else she would not be here with us.
Just as we spent the pregnancy focusing on making memories with Zoey, we will spend her life doing the same. She really is the most amazing and strong little person. And she is beautiful.
May 22, 2014
Zoey is 3 weeks today! We are completely in love with every part of her–even the all night crying parties. She is eating well with the special bottles we have for her and is weighing in at 5 lbs 12 oz. Her nurses say she looks good and is doing well. She still has a full head of long hair and the cutest darn feet I’ve ever seen.
Our first horrible dose of reality was delivered on Sunday when she stopped breathing. It was a sobering and awful day. Thankfully she started breathing again on her own after a few minutes, but my heart stopped until it did. Joe and I are still recovering from the incident, but she seems to be doing fine. Although we knew this was a possibility and these episodes can continue to occur—Trisomy 18 babies are prone to it—nothing can prepare you for that moment. I held her and begged her, God, the universe and anyone else who would listen to bring her back to me. I know we will never be ready to let her go. I could cover her in a million kisses and will always want one more. We are blessed that she’s still here with us and I’m so thankful for every day.
There are so many moments I wish we could just hit the pause button on our lives. When she’s nestled on my chest napping: pause. When I look over at her in her dad’s arms and her bright eyes are looking up at him: pause. When she thrusts her arms in the air (we call it “baby power”): pause. The sweet little coo as she falls asleep: pause. But I know we are not allowed. Time moves forward and nothing is guaranteed except our love for her.
Our cousin Nicole of Nicole J Photography was at the hospital the day Zoey was born and then did a photo shoot after we returned home.. I cannot possibly post every amazing photo she took—she really outdid herself! She also created a video where you can see many of the photos. If you ever need a photographer, call her. She’s beautiful inside and out and has provided our family with priceless memories.
July 1, 2014
I’m so happy to report that Zoey is celebrating her two month birthday today. Plans included watching her dad nearly have a heart attack during the soccer game and a walk through the neighborhood. Health wise, we’re working through some minor digestive issues, but if that’s the worst I will definitely take it! Her nurses continue to be impressed with how well she’s doing. We haven’t weighed her in a while, but we think she’s getting longer if not heavier. We are soaking in every day with her.
The other night I walked around with her and watched her big blue eyes take in the world around her. We walked outside to check out the flowers and watch a bumblebee buzz around. I found myself tearing up—I was just so in awe of how wonderful she is and how amazing it was to see her eyes taking in everything. After a mosquito landed on her nose, we came inside for a tour of the house (staring at the living room ceiling gets pretty boring). I found myself tearing up again when I took her to our room where I have photos of our vacations framed—our favorite beach, a row boat in the sand, sea turtles—because then I was overwhelmed by images of all the things I wish I could show her but might not get the chance. I want her to know what it feels like to have the sand between her toes. Taste the salt water on her lips. Hear the sound of the ocean meeting the land. I have to stop myself from going too far down that path. We must focus on the wonder and amazement of today. And today is wonderful even if it just the small things around us. I love the weight of her against my chest when I’m holding her as we go to sleep. The way her breath feels on my skin. The way her tiny little hand rests against my heart. I could play with her soft little feet for hours (at least until she gets tired of it and kicks me away). I love watching her wake up from a nap—the way she throws her hands in the air and sticks out her tongue. Have I mentioned how I melt when she looks up at her dad when he’s holding her? I could go on and on about how adorable I think she is. She has definitely changed our lives and I love every minute of it.
August 21, 2014
Zoey is 16 weeks today! Unfortunately as I sit here cuddling her, I don’t have the happiest of updates. We’ve been struggling with formula and digestive issues all along but the other day after another switch, Zoey began crying during feedings to the point her intake significantly dropped. When her nurse stopped by yesterday, she also noticed a sign of potential liver failure. That coupled with her loss of appetite and dehydration led her to suggest I take the rest of the week off work to spend more time with Zoey. To say I felt like I’d been hit by a truck doesn’t do it justice. And then I waited for Joe to get home from his work trip to tell him our precious daughter may leave us.
Yesterday afternoon we had to give her an anxiety medicine to calm her. She’d been crying so long and so hard that we felt it was the best option. We also started her on an acid reflux medicine because I’ve felt that might be causing some of her issues eating.
I told my daughter things no mother should ever have to say. I won’t go into detail but I told her I understood if it was time and that her “sister” Hattie & my dad would be there to meet her. And as always I told her how much I love her.
Joe & I gave her a bath– I adore that clean baby smell. Then we sat on the couch together. She was very calm and awake and happily took in the world around her.
Thankfully the combination of meds seems to have helped and she’s been eating much better. She doesn’t fight it and is closer to her normal intake.
We remain hopeful that she’s rallying. She’s such a strong little girl and continues to defy the odds. Maybe this is just another scare and we’ll have much more time to cuddle. We know the hour glass has a finite amount of sand, but let’s pray there are a few more.
We’ve ventured out a few times since my last update. We’ve toured a few parks and sat on the swing and fed the geese. She met Fredbird at the Cardinals game and attended her grandma’s 90th birthday party! I’ve included a few pictures.
Through all of this, there are moments that threaten to break you. But there are moments that build you. And as I looked into those gorgeous eyes a few minutes ago, I became stronger. We will not give up on her.
Zoey had another nurse visit today & she was not nearly as doom & gloom. Zoey ate really well yesterday. Today not so much, but we are trying a few things. Her color looks good & her heart, pulse & temp were all fine. She’s not lethargic–in fact when I try to feed her she gets really angry. I’d rather her be happy but I’m glad she’s got the energy to fight me. Needless to say we’re relieved & hopeful we can get her eating back on track. A feeding tube is being considered but we’re going to try a few things this weekend first. You know how you feel after you ride a wooden roller coaster–your stomach in knots, head banged around, a little dazed? That seems like a walk in the park compared to the last few days. Feeling more optimistic that our little super baby is going to keep on chugging along. Fight fight fight!
August 28, 2014
The world seems a little darker today, but the heavens are brighter. Our beautiful blue eyed princess left us today. There are no words. She passed peacefully laying on my chest where she spent so much time. I don’t know how to sleep without her resting there.
We know everyone wants to say or do something that will help. Your prayers are enough. We ask for no visitors or phone calls at this time.
Thank you all for going on this journey with us and for loving our Zoey.
September 3, 2014
I’m not going to lie and tell you that the past few days have been easy. They have not. We miss our baby girl more than I can begin to explain. We’ve been trying to stay busy and we get out of the house often. The best I can describe the past few days is empty. My arms are empty. The house is empty. I’m thankful to have Joe and a wonderful group of friends and family that I know are behind us, thinking of us and praying for us. A memorial service has been set to honor our precious girl. Please see information below:
Please join us in celebrating the life, joy and love of Zoey Tamsyn Waymire
Saturday, September 20th at 1:30pm at the St. Louis Zoo
Dress is casual. A service will be held followed by a dessert reception.
September 26, 2014
Yesterday marked four weeks since Zoey left us. We’re getting through and are thankful for some amazing people in our lives that are helping us. It’s not an easy journey. I miss her more than I can possibly explain. Zoey’s service was last Saturday and it was a beautiful day to celebrate her beautiful life. Everything at the Zoo came together well and we’re overwhelmed by the amount of love shown to us. We know that some of you couldn’t make it for a variety of reasons, so I’m posting the video my wonderful friend Tony put together of the service. Within that is the amazing video my other wonderful friend, Nate, put together for the service. It’s around the 19:12 mark. Thank you for your continued thoughts and prayers.