# HLHS, Comfort Care - my story



## fernlink (Jul 24, 2003)

I have not been sure where to post in the last month and not sure where to post this one either. My story is about a great pregnancy, surprise twins, tough decisions and losing a twin. Sorry for the long post. Not sure what I can leave out...

My first child is 21/2 and was born at home with midwife and no problems. It was a beautiful experience I wanted to repeat.

This pregancy was great - no problems except I seemed a lot bigger than the first time, but thought is was what happens with a second child. My original due date was Sept 23rd.

Than at 33 weeks, I all of a sudden measured big - 38 cm. My midwife wanted me to get an ultrasound to check to see if there was a second baby in there. I went in not expecting there to be two. There was. It was a shock. I had to rethink the birth plan and my plans for the next two years. I realized I had little time before they could be born.

I couldn't do a home birth because I lived more than 30 minutes from the hospital and it didn't make sense in case anything happened to the second baby. I decided to make the hospital birth as comfortable as possible.

In the next two week, I got prepared and excited to have twins. I was working with a wonderful doctor and nurse midwife at my local hospital. The nurses read my birth plan and were doing all kinds of things to accomodate me - like letting me bring in a blow up swimming pool to labor in and making the monitoring of the twins be less intrusive. My hospital is in a smaller town which means my doctor is on call for me (didn't need to wonder who I would get as a doctor). We also were able to have the nurse midwife on call for me as my second "doctor". We had some technology available - I agreed to have an IV ready to go, but not be attached. My doctor could do C-sections if necessary.

On week 36, that Tuesday I went in for a routine ultrasound (My 4th -I was getting sick of them) and then met with the doctor, nurse midwife and team of nurses who practiced what they were going to do. It was super fun and we all were excited. That ultrasound could not get the head of the smaller baby that was really low. She also saw something funny with the heart.

The next day Wed, I went to a bigger hospital an hour away for another ultrasound to get the weight and look at the heart. Again I was confident nothing was wrong and went to the appointment alone. They confirmed that there was no left chamber, but needed to send me to the University of Minnesota for an detailed ultrasound of the heart. The crying started then and didn't stop for awhile.

We met with doctors, surgeons, specialists all day Thursday and found out that the first baby had Hypoplastic Left Heart - a fatal heart condition. Our choices - heart transplant (not really possible for lack of small baby hearts) or the Norwood procedure which required at least 3 open heart surgeries, the first within the first week of life. The child would eventually need a heart transplant when she was a teenager or adult. The option of not doing the surgeries was also mentioned.

We were able to go home that night with heavy heavy hearts. We tried to do research and soul searching. We didn't know how much time we had. We met with a pastor which helped us a lot. We planned to met with our parents since both sets lived close by and we would need their support with either decision.

The U of M wanted to do a C-section or at the very least induce at 38 weeks. I asked for a vaginal birth, but didn't fight for anything more. I was tired. I had other things to think about at the time.

In our hearts, we knew we couldn't put our baby through the surgeries. Then Sunday morning, my water broke. I was so scared. The baby would be on the edge of the weight - babies under 4 1/2 lbs are not operated on. We called our parents to talk about our options. They heard more details and helped us make the final decison to not do the surgeries.

We went to our hospital and told our doctor that we didn't want to do the surgeries. He supported us and made some phone calls to check with the other doctors. The doctors in at the U of M agreed as well. They said our baby had a terrible prognosis.

Then our doctor made it possible to still have our babies in our nearby hospital. We didn't have to be 3 hours away from home which was one of the first things that went our way.

I had a beautiful twin delivery on August 29th. Nora Grace weighed 4 lbs, 11 oz. Anika Jo weighed 5 lbs 14 oz.

Nora lived for 3 days. She didn't nurse which was really hard - I wanted to see her eat and be comforted by nursing. I pumped and dropped the milk in her lips.

She was never put down and so many family members got to meet her and love her. She died in my arms on September 1st.

We had a funeral that was perfect for her. It put me at peace with all the things we and others did for her. And I do feel at peace with our decision - something I was really scared about.

Anika has a perfect heart. She is a week and a half old today. I find it difficult to morn my child and really BE with Anika at the same time. The first week was Nora's. Now I am with Anika and my son Gavin. But I miss Nora and want to morn her death too.

I guess I am looking for other moms with similar life experiences. I read the book "Waiting with Gabriel" which is so similar to our story except they had 3 monthes to digest the prognsis for their singleton where we had 3 days. It helped to hear others talk about it too.

Thanks for listening.


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## ScrappingMommyof3 (May 4, 2004)

I have no words...only (((HUGS))) and *tears*.


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## nym (Sep 6, 2003)




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## Isfahan (Jul 23, 2004)

I am sorry .... I can't imagine the pain and emotions you must feel both mourning Nora and having the joy of being a new mom to Anika. Hugs.

I know there is a message board on parentsplace for women who are going through loss of a twin:

http://messageboards.ivillage.com/iv-pplosttwin

Its not like Mothering, but they may be able to share your loss and offer a different kind of support.

Shannon


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## iris0110 (Aug 26, 2003)

2 I am so sorry for your loss. It is so wonderful that Nora got to experience three days of her familys love.







3







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## fernlink (Jul 24, 2003)

Nora did get only love for three days. It was really beautiful and peaceful. There were some amazing things that happened in amongst the sadness. Relationships, fellowship, togetherness. Nights were precious to me where I had my enitre family together in calmness.


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## iris0110 (Aug 26, 2003)

2 That is so beautiful. Thank you so much for sharing. I can just imagine her curled up in the love of her family.







2


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## talktomenow (May 9, 2003)

Thank you for sharing your beautiful story.







I know you are not asking for approval or validation (and I'm not trying to give it), but I think you did a wonderful thing for Nora. What strength, courage, and love you showed for your baby.


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## fernlink (Jul 24, 2003)

I know deep in my heart we did the right thing...but it is always nice to hear that others think so too. Thank you so much for the kind words.


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## ChildoftheMoon (Apr 9, 2002)

Thank you for sharing your amazing story. You are a wonderful loving mother. We are here for you whenever you need us.

Love, Brandi


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## RachelGS (Sep 29, 2002)

A friend of mine lost her baby to HLHS also. It has brought her comfort to know that her daughter's short life here was so absolutely filled with love. She also commemorates her little one's birthday and angel days in ways that feel peaceful to her.

I am so terribly sorry for the loss of your precious little girl. You are still her mama, and your love for her will always matter. Thinking of you both tonight...


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## mclisa (Jul 26, 2004)

2
Take comfort with your family and talk to your pastor again if you need to. You have every right to grieve, but I agree it's hard to do that when you have another newborn who needs you so much right now.

My heart goes out to you and your family.


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## babycarrier (Apr 2, 2004)

Sounds like Nora has a wonderful family who loves her so very much. I'm sorry for your loss.
Respectfully,
Jessie


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## wheezie (Sep 18, 2004)

I'm so sorry for your loss. My son Ryan passed in December about 12 hours after his heart surgery. He too had HLHS, although we didn't find out until he was 2 days old. (((HUGS))) to you. Please always remember that you did the best you could at the time. Just remember that when the doubts start, b/c sooner or later, they will come. (in my experience anyway) I have doubted everything we did during those 3 weeks, but I *always* have to remind myself that we did everything we knew to do, and we did it all in his best interests.

Pm me anytime you need to talk.


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