A handful of months ago, a sweet mama reached out to me via this blog. Her son had also been diagnosed with trisomy 13 (via the Panorama (similar to materni21) blood test and ultra sound) and a HLHS heart defect. We kept in touch, and I was so amazed by her strength and trust in God’s plan for their sweet baby. Despite the odds and what doctors predicted, he lived for four amazing days. They even got to take him home for part of that time!!! I wanted to share her story and a few photos of her beautiful son, as a reminder that while a trisomy 13 diagnosis is difficult, it can still be full of so many incredible blessings.
“My world changed on the 16th of April, 2014. It was the day of the gender ultrasound, or so I thought. I remember the tech getting many pictures, while asking me to roll from side to side a lot. After what seemed like forever, she called my husband Ryan over and said “meet your son”. We were very excited as we were hoping for a boy. She then looked at me and calmly said, I’m going to ask you a question, but I don’t want you to freak out. I said ok. She then asked “do you or your husband have a history of cleft lip?”
This is how it all started. We later found out that day when we saw my ob, Dr. Breniman, that Ellis’ heart did not have 4 chambers. He recommended we see a perinatologist to take a closer look. Fast forward a week. The perinatologist, Dr. Chatelain, performed a detailed ultrasound and echo on the heart determining HLHS as well as bilateral cleft lip/palate. He then recommended an amnio. I was nervous about it so he recommended a panorama blood test. Fast forward another week. Dr. Breniman called us in to discuss the test results, which were 99.9% trisomy 13. He discussed with us what trisomy 13 was and how surgery wasn’t usually an option. He estimated that if he lived to term (which wasn’t likely) would live 24 hours. He was as kind and gentle as he could be.
I often thought to myself, how in the world am I going to do this? Love and carry my baby only for him to die? I was consumed with sadness for several weeks but eventually made up my mind that it didn’t matter if he wasn’t going to live long. I would love Ellis for as long as he was here, in or out of the womb. I was finally able to find joy in my pregnancy and sweet baby! I cherished his sweet kicks and hiccups. I had maternity pictures made, I wrote memories in a journal. I talked to him and played music for him. I grew in my faith and marriage. Ellis made me see life differently..he was changing me. Every Dr. appointment I got to hear his strong heart beat. I just prayed and prayed I would meet him alive, even if for a moment.
Fast forward to my 38 week checkup. They found protein in my urine and I had high blood pressure.. preeclampsia! I was also dialated 3 cm. Dr. Breniman decided that i was going to have this baby today! He sent me over to the hospital to be induced. Fast forward 13 hours. Ellis came into the world at 1:39am..5 pounds, 2 ounces. The cord was partially wrapped around his neck, his face was blue. His heart rate was 19bpm when they placed him on my chest. I rubbed on him and gave him some oxygen and he started to pink up. He then let out some grunts and cries, and opened his eyes! He was beautiful!
He kept his eyes open for the next 7 hours. He did not sleep or cry, just took in the world. He later had an og tube placed and we got to learn how to feed him. My sweet Ellis lived with us 4 days, 2 of which were in our home. We got to experience taking him home, changing his diapers, dressing him, rocking him, reading to him, and listening to him squeak and cry. He cried when he was hungry or had a dirty diaper. He loved to be swaddled tightly. He was held almost every minute of his life. He was loved fiercely. Ellis is the biggest blessing in my life, even if it didn’t seem like it at first. He was our miracle they never expected to be full term or live for more than a day. To carry him and to know him has changed me forever. If given a choice, I would carry him again. I would still pick Ellis, my sweet firstborn baby.”
We love you Baby Ellis and will remember you always!
“That is why we never give up. Though our bodies are dying, our spirits are renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now, rather we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.” 2 Corinthians 4:16-18
Paco and I are so excited to be bringing another baby boy into this world! Our anatomy scan went wonderfully yesterday- at 17 weeks, our baby looks perfectly healthy! Praise God and thank you for those who have prayed for us. I know God hears your prayers!
“Rainbow Baby” is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn’t mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.”
Jeremiah 29:11 (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
A month ago Paco and I decided to forgo the new Materni21 blood test (also called Harmony and Verify) that looks for extra chrosomomes at the 13th, 18th, and 21st places (as well as a few other syndromes). I’d heard of false positives on babycenter.com, which I know would create incredible stress for me if we one of those unlucky ones. I did also wonder if taking the test would open myself up to the Enemy’s manipulation (ie. a false positive). I actually mentioned this to Paco and he agreed (I thought he might think it was a silly thought!). So instead we’ve decided to rely on ultra sound for now, and trust God as best we can. Our anatamy scan is scheduled with the perinatologist for a week from tomorrow, at 17 weeks. It’s a little early than the usual 20 weeks, but the doctor’s office said they do them as early as 16 weeks. Hopefully we’ll find out the sex of this baby then too!
We had our 13 week appointment last Friday, and so far things look good. We could see the baby’s profile and nasal bone, and the nuchal fold looked normal (under 3mm, although the doc said that it can be tough to get an accurate measure). There is still a lot of developing to do, so while this positive appointment is reassuring, I’ll feel so much better after our anatamy ultra sound scan at 20 weeks (check all organs, bones etc) which we will do with the high risk doctor we visited while carrying Asher – Dr. Berry. Now just counting down the days until week 20, trying to stay relaxed and nourished.
Yesterday was just sort of an emotional day for me. Everything was going along just fine until the end of the day when a client came by to drop off some paperwork. I’d last seen her last Spring when I was pretty pregnant with Asher, and she’d made several nice comments about my pregnancy at the time. She hadn’t mentioned it over email since (we’d had many exchanges), so I assumed that my boss had told her what happened while I was on maternity leave. Well yesterday she comes by my desk, and says ‘first things first, let me see some photos of that baby’. Ouch. Was not expecting that. My boss was now standing at my desk, and I calmly told her that he’d passed away late in the pregnancy. She looked suprised and confused, and I said it again (she is also hard of hearing so I wanted to be clear). She apologized, and then my boss quickly changed the subject (in an effort to help me). I kept it together until I got to the ladies room, where I had a good cry. It’s getting easier, but it is still hard to tell people that our son died. To actually say the words.
Later that day, Paco and I were headed to a celebratory dinner for this office. He told me that he’d told a few coworkers earlier that day that we are pregnant, and wanted to tell his boss and several others together at dinner. Feeling a bit drained from the encounter earlier, I started to cry at his suggestion. Of course I am excited about this baby, but it also feels a bit scary to go ‘public’ at this point (10 weeks). Like I’m going to jinx it or something. But it would probably be scary at any point. In any case, it was a little tough to take the congrats at first. Everyone was so scincerly happy for us, but I guess that tiny reservation in the back of my mind (however unrealistic) kept me from feeling completely happy in the moment. I think over time it will get easier. Telling my work next week… wish me luck. I’m hoping I don’t cry tears (of joy mixed with deep sadness), which is what I’ll probably feel like doing!!! Guess I just have to embrace the somewhat complicated emotions that go along with pregnancy after loss.
The month following my post titled ’still no’, Paco and I were signed up for our last round of fertility treatments. One last effort at IUI plus low dose FSH “injectables”- our third month with this protocol and our 7th IUI procedure since Asher was born last April. Just to give some context, we were going through these to speed up the process, not because we had a known fertility issue. To be honest, I wasn’t feeling hopeful. But I finally had peace in accepting that it would happen eventually.
Paco and I had previously talked about stepping things up to IVF with embryo chromosomal testing, which I’d always taken comfort in as an option. But now, I was feeling uneasy about it. Was it too much? Did it show a lack of faith that God would bless us? Also, what would happen if we had embryos left over after we were done having kids? Or embrios that had a non fatal condition, like down syndrome? I’d cried to my therapist about my dilemma weeks before, and Paco and I had finally decided that after this cycle, we would take a break from fertility interventions and just do our best to trust that God would bless us when the time was right.
I’d also recently read the book “Supernatural Childbirth”, which talks about God’s promises to us in the bible to bear fruit and be a ‘happy mother of children’. It gave testimonies of women who were told they were barren finally conceiving. And how I could command my body in Jesus name to prepare to implant a healthy baby. I know it sounds a little ‘out there’ to some, but I believe in God’s promises to bless those who choose to love Him. And so I prayed and asked God for the faith to be patient and trust, instead of pouring more time and money into further fertility treatments. I was done trying to control what I couldn’t control.
Well, I don’t know if God was waiting for me to let go, or maybe the time was just right in His eyes, but on father’s day, I got a very very faint positive pregnancy test. So faint, Paco couldn’t even see it. I joked that I had “line-eye” as they say. But it was there. In the days that followed, it got darker, then lighter, and I worried that it might be a chemical pregnancy (baby did not implant). But blood work confirmed that my HCG was going up at the correct rate, and two ultra sounds a few weeks later confirmed a heartbeat.
We have a long road ahead, but I am trying my hardest to not worry and trust that my baby’s days are already numbered. His/her life is already known by his/her loving Creator, and there is nothing I can do to change that. Please pray that our baby is healthy, full term, with fully developed organs, a sweet disposition, and a heart that yearns to know our loving God fully. That is what I am praying for almost daily. I am a mere nine weeks pregnant today, and our estimated due date is February 24, 2015. I know it is early to post this, but I can’t hold it in any longer. Thank you to those of you who have prayed for this for me. I know that God hears your prayers.
(And if you know me in *real life* please do not say anything to me about this yet unless I bring it up, as I’m waiting another month or so to really *go public* with our big news. Thank you.)
Recently a read a mama on the babycenter.com message board say that her grief turned a corner after her lost child’s 1 year birthday. I realized that it has been true for me too. I guess there’s something about letting go a little, go of the monthly birthdays and the anticipation of the 1 year anniversary of your child’s death. My therapist has said all along that she wanted to help me bring my grief from the forefront to a small place inside me, where it would never go away, but would be less raw. I think I’m finally at that place. Not that I still don’t get waives of sadness from time to time, but more often I feel intense gratitude for his life, birth, and the months that we carried and cherished Asher. That he was almost full term and a beautifully formed baby, only a little small given his gestation. Several mothers on the Life After Carrying to Term board have said that they probably couldn’t carry to term again. Yes it is so hard and sad, but I would do it again without a doubt. Whatever days we get with our children are a blessing and meant to be cherished. As time softens the hard feelings, what I am left with is pure love. I don’t know that I could experience that now had I chosen to end the pregnancy when we first found out his fatal diagnosis.
Several weeks ago, our Molly Bear was delivered. I’d heard about Molly Bears last year while pregnant with Asher. It is an organization that was started by Molly’s mother after her sweet baby died at 34 weeks from a knot in her umbilical chord (so sad). On the website (http://www.mollybears.com/our-story), she tells about how a friend gave her a teddy bear in remembrance of her daughter, and she then sewed a small bag of rice inside so that it weighed exactly the same as Molly when she was born.
After Asher was born, I entered his details into the Molly Bear website to request my bear. I was able to put some details in, like his bday and that there was a heart shape in his hand print. I hoped that they would incorporate those things into our Asher bear.
Unfortunately, there are just so many baby loss mamas out there with aching arms, and it took over a year for him to come. But I was so delighted when he did! Weighing a lovely 5lbs, 1oz, his name is on his chest with his bday inside a heart shape. Also he has the most darling little cowboy bow at his neck, so cute! I can’t tell you how wonderful it is to cradle this bear… his weight and size is so close to Asher’s, and he is so soft. I remember my son in my arms when I cradle his sweet bear and kiss his soft head. And what a wonderful way for Molly’s mother to honor her daughter’s memory.
This weekend Paco and I spent another relaxing weekend in Mason. When we pulled up late Friday, I was excited to see that our lemon balm wild flowers were finally flowering around the house. They aren’t native to our place, but are there because we put a Texas wild flower seed mix around the house a few years ago. They are special to me because they are the flowers that I put on Asher’s grave when we buried his ashes this time last year, and ever since I’ve said that they are ‘his flower’.
Saturday evening as the sun was getting low in the sky, I picked a pretty bouquet of Asher’s flowers. Then Paco, Lodi (with her doggie hiking boots on) and I headed up the hill to Asher’s grove. When we got there, I couldn’t believe my eyes. There were several clusters of lemon balm flowers around his grave! The flowers I left there the year before must have seeded the area! I was also thrilled to see that the amarylis bulb we planted at this birthday had grown and was getting established (although critters had pulled up the dafodil and iris bulbs, boo). I laid the newly picked flowers on his baby angel head stone, knowing that while they will shrivel and die eventually, they will become new flowers for next year.
I didn’t have my camera when we were up at Asher’s grove, but here is a photo of the flowers by the house. They are lovely.
A few weeks after Asher was born, a mama on babycenter messaged me about her daugther. She was 20 or so weeks pregnant, and her baby had just been diagnosed with trisomy 13, HLHS, and a bilateral cleft lip. Just like Asher. She told me that she had been considering termination, but reading about our journey with Asher encouraged her to consider continuing the pregnancy, despite her fear and sadness (as of course I could relate). After several days, she decided to continue to carry her sweet daugther as long as she could.
Through out the next several months, she came to babycenter.com to post about her fears and concerns, and share with other mamas in her shoes just as I had done. I continued to post as well, as it found strength in talking about my own journey with other mamas in hopes of encouranging them, just as I had been encouraged in the Spring.
September finally arrived, and this mama was induced shortly before 40 weeks in hopes of meeting her baby alive. To their delight, she was born a beautiful 4 lbs 11.5 oz, wide eyed little girl! After a few hours of cuddling their sweet daughter, the doctors were surprised at just how well she was doing. They decided to run some tests on her heart to see how severe the HLHS was. To everyone’s surprise, her heart was normal!!!! I truely believe that this was a gift from God. And a reminder that a prenatal diagnosis may improve – so don’t lose hope!
Their beautiful daughter lived for two precious days. Her name is Sloane Ramsey, and she reminds me of Asher. We love you baby Sloane and will never forget you.