Congenital Diaphragmatic Hernia

“There is, I am convinced, no picture that conveys in all its dreadfulness, a vision of sorrow, despairing, remediless, supreme. If I could paint such a picture, the canvas would show only a woman looking down at her empty arms.” Charlotte Bronte

 

I had a plan, as I’m sure most people do. I was going to get married, wait a couple years to have kids, and then “pop them out” about every two years. I was (most likely) going to have 5 and I was going to be finished having all of my children by the time I was 32. If only I was in control like my naïve self thought.

 

My plan sounded good, right? I got married, and a few years later we had no problem getting pregnant right away and our son Dallin was born in Nov. 2008. Being a mother was amazing, hard, beautiful, tiring, frustrating, happy, and just plain emotional. I LOVED it, and I loved him.

 

 

dallin birth

 

When he was almost a year we decided to “try” again. A month passed, then two… then six months… then 9 months… and then we hit a year. A YEAR! I went for my yearly check-up and my doctor didn’t seem concerned at all when I told him. I left feeling discouraged and confused. Months continued to go by, we kept trying but every pregnancy test was negative. I was getting more and more discouraged. In August of 2011 (almost 2 years of trying at this point) I realized that I only spotted a little in June and hadn’t gotten a period in July. I took a pregnancy test and it was positive! I was super happy!! A few days later I started bleeding at work. I’m a teacher so it wasn’t like I could just leave. Thankfully it was early release so I made it through the remainder of the day. The next day I went into the doctor and they confirmed a miscarriage, I was about 8 weeks. I asked the doctor about progesterone but he blew off the question. He also told me we could start trying again right away.

 

In mid October 2011 I got another positive pregnancy test! I couldn’t help but be excited, even after just going through a miscarriage. About 5 days after I started bleeding and cramping, but thankfully it was fall break so I wasn’t teaching this time.  I went into my doctor’s office and once again I heard the words miscarriage, this time I was about 4 weeks. Also, this time around the dr. didn’t even see me!! I had so many emotions going through me: pain, emptiness, despair, heartache, confusion… why was this happening?? What was I doing wrong??

 

The next day I started asking around for recommendations for a new OB. I found one that came highly recommended by A LOT of my friends. I called the nurse and explained my situation and told her I wanted progesterone right away. She told me the doctor would call in a prescription, but I should wait at least 1-2 cycles before we started to try again.

 

In January of 2012 we started trying again. On March 5th I got a positive pregnancy test. I called my new ob right away to get progesterone and to set up my first appointment. I was nervous, anxious, worried, and scared. We went in a little later and he did an ultrasound and there was a baby!! I was 8 weeks, further than the other two!!  I was due Nov. 11th, 2012. I remember it was a Friday when we had the appointment, and the next day I started bleeding and cramping. “NO!” I thought, “This can’t be happening again!!”. I went numb- I felt empty. Thankfully the bleeding subsided and by the evening there was hardly any. I called my ob Monday morning and they squeezed me in. The doctor did another ultrasound and the baby was still there, and everything looked good. I was relieved; I didn’t think I could handle another miscarriage.

 

 Weeks continued to pass and everything looked great. At 15 weeks we found out it was a girl. A GIRL!!! I started getting bows, clothes, socks, there are so many cute girl things!! At the 20 week ultrasound the doctor said everything looked great. The ultrasound was a lot shorter than it was with Dal so I was a little confused. “Are you sure?” I asked and he responded that she was healthy and on track. We got 3d/4d pictures at 31 weeks and she was looking adorable and big! At 36 weeks my doctor did an ultrasound to measure her growth, everything looked great.

15 weeks

 

BABY GIRL 7

 

I figured I would go full term just like with Dallin, however this little girl was a diva from the start. She decided to break my water at 37 ½ weeks at 5 a.m. in the morning. We made it to the hospital around 7:30, my parents met us there to get Dal. The day was normal, just like any other delivery. At about 2 they checked me and I was a 6, about 20-30 minutes later I was in a lot of pain and they checked me and I was a 10. My doctor came and barely had time to get 1 glove on before my precious Lynlee came out at 3:03 p.m.

 

Lynlee birth

 

She didn’t cry. Why didn’t she cry??? They rushed her to the bed. My doctor is telling me it’s alright. Aaron is rubbing my hand raw. I am out of it because my epidural had worn off before I had delivered her. What’s going on?? Nurses rushed in, they took Lynlee away. Why are they taking her away? Time passes, I am trying not to panic. I think it was about an hour before the nurse practitioner came in and told us that Lynlee’s intestines were up in her chest cavity and her heart and lungs were all pushed over to the right side. I started sobbing. They called for my husband to go give her a blessing. Nurses came and took me to her in a wheelchair. I sat by her as they worked to keep her alive. The helicopter to transport babies was in Tucson, so we had to wait until 6:30 until they could transport her to Phoenix Children’s hospital.

CDHpicture

Lynlee birth1

 

They sat a pillow on my lap and put her on it. I couldn’t hold my baby!! My parents brought Dallin in to meet his sister. We spent that time singing songs, crying, and praying. To be honest I didn’t think she would make the night. I was so scared. They got her into the helicopter, Aaron followed (my sister took him). My parents took Dal home. My doctor released me and my friends took me to Phoenix Children’s.

  Lynlee birth3

 

We waited in the NICU family room to hear from the doctors. They pulled Aaron and I into a room and told us that Lynlee had a Congenital Diaphragmatic Hernia (CDH) which caused her lungs to not develop properly and also caused heart problems. There is NO KNOWN CAUSE for CDH, it is completely random. 1 in 2500 babies has CDH (as common as cystic fibrosis and spina bifida). Globally, a baby is born every 10 minutes with CDH. There is a 50% survival rate.

 

 

Lynlee birth4

 

 

Lynlee birth5

 

We spent the next 17 days in the NICU while Lynlee fought to live. She was amazing and such a diva. She gave her all and tried so hard to stay with us. In the end her lung (she only had 10% of her left lung so it wasn’t really usable) and heart wouldn’t function like they were supposed to, so we had to make the choice to take her off ECMO (extracorporeal membrane oxygenation-basically her life support). I was able to hold her for the first time right before she died. I lovingly held her as they cut her tube and she left this world. I sobbed and sobbed. My baby girl died the day before she was originally due.

Lynlee birth6

 

Lynlee birth9

 

 

 

Lynlee birth9-1

 

We decided to try again and in January of this year I got a positive pregnancy test. A few weeks later I miscarried again at 6 weeks. We are now taking a few months off from trying because I don’t know how much more I can take.

 

Mother’s day it will be 6 months since my Lynlee died. 6 months my arms have been empty, my nights have been long, and my heart has been heavy with sadness. Grief is a funny thing. I had no idea the emotions that came with losing someone, especially a child.

 

You may wonder, how am I doing now? I’m a pretty honest person, so every time I get asked this question I have an internal battle with myself. You see, how I am doing changes on a daily (sometimes even hourly) basis. Also, my feelings are so discombobulated inside of me that it’s hard for me to even explain to someone how I am REALLY doing. I never know if the person wants the short or long answer. “I’m doing ok”, “hanging in there”, “taking it day by day” are usually my standard responses because they are short and easy. Much better than writing the real deal.

 

My feelings and mood change throughout the day. I always miss Lynlee but the emotion from missing her seems to hit me in waves- some are little ripples and others are Tsunamis. Just like with waves I have NO idea what the size of the wave will be, when they will hit me or what will “trigger” the emotion. I’m still me- I laugh, I can converse, I do the daily tasks I have to do… but at the same time I’m not me, or not the same me I was. I’ve learned that life can quickly change in more ways than I ever thought possible. I love deeper, I listen better, I squeeze my son tighter (probably sometimes too tight), I cry harder, I get annoyed faster, I space out more easily, I pray more fervently, I judge less quickly, and sometimes I just try to make it through the day. Like I said it’s hard to put into words what I’m feeling, or how I am as I grieve for my little girl.

 

I am grateful for my son; he is one of the main things that keep me going. I know I have many blessings and know I will see my daughter again. I try to focus on the positive, and I try my best to keep the questions that start with “why” hidden in an imaginary box in my brain. I don’t know why my life has turned out this way, but questioning and focusing on it won’t bring my baby back. This mother’s day I will try to enjoy it for my son, and for my Lynlee. I KNOW she would not want me to be sad and depressed.

 

 

 

“To honor you, I get up every day and take a breath,

And start another day without you in it.

To honor you, I laugh and love with those who knew your smile,

And the way your eyes twinkled with mischief and secret knowledge.

To honor you, I take the time to appreciate everyone I love.

I know now there is no guarantee of days or hours spent in their presence.

To honor you, I listen to music you would have liked,

And sing at the top of my lungs, with the windows rolled down.

To honor you, I take chances, say what I feel, hold nothing back,

Risk making a fool of myself, dance every dance.

You were my light, my heart, my gift of love, from the very highest source.

So every day, I vow to make a difference, share a smile, live, laugh and love.

Now I live for us both, so all I do, I do to honor you.”

Connie F. Kiefer Byrd

 
Related Posts Plugin for WordPress, Blogger...

Comments

comments

Comments

  1. cupcakediaries1 says:

    Thank you so much for sharing your story with us. I can’t even tell you how touched I am by it. You’re amazing!

  2. Connie F. Kiefer Byrd says:

    I found your website when I did a search on my poem, To Honor You. I like to see how far it has traveled. I am so sorry that you had to experience the pain of loosing a child. I wrote the poem about the loss of my son, Jordan in 2005. I can tell you that as horrible as it is, it gets better. I love that you are reaching out to people through your grief. I hope the poem helped in some small way.

Speak Your Mind

*