my difficult introduction to parenthood

My pregnancy was far from the normal happy time that I had planned. My husband and I were looking forward to our 12 week scan with much anticipation. During the scan we were both laughing and enjoying our first real look at our precious unborn baby. After the scan we sat waiting to speak to the obstetrician. It was to be a very upestting moment and the start of the hardest time of my life.

My babies NT result was 6.7mm those of you would know that 1.5mm is accepted. We discovered this 4 days before christmas last year. We were told that our baby could have downs. We were booked into to have a CVS the next day. That in itself is an awful thing to have to endure. Thankfully the results came back negative. We were then told our baby could have major heart defects and that not many babies with high NT results carry full term or are born healthy. Over the next 22 weeks we had many echos all saying that my babies heart was structually normal.

On the 17th May 2007 I went in for my 34 week checkup and fetal growth scan at 11am. It was during this scan that they identified that my baby heart rate was only 51 beats per minute. At 11:40am I was rushed to hospital and my baby daughter was born by emergency c-section at 12:15pm. She was rushed to another hospital where it would be 2 painstaking days before I got to meet her. I suppose I am still grieving and will do for sometime. My daughter spent the next 6 weeks in NICU and I spent 12 hours a day with her trying to breastfeed. she progressed slowly the extent of her heart conditions were slowly unfolding.

Lucia had a pace maker inserted on the 19th of July and this did help her growth. She will need future operations and she needs to gain weight before this can happen. To date she is nearly 6month old ( 4 1/2 months corrected) and weighs only 5kg. That puts her in the 3rd p/c. Each day is a contant struggle and each hosptial addmission gets harder. We are back to hosptial in the morning as she isnt feeding well and the are going to test for reflux. Developmentally she is far behind and we are attending physio to help this.

I had dearmet being a parent for years but never thought it would be this hard. Each day is a struggle as I come to turns with many emotions I have suppressed as I never had time to deal with them early on. I grieve for many reasons...for the natural labour I planned....for not getting to meet my child for 2 days....missing out on time to bond...i get upset when I think of all the pain she has gone through and all the pain she will go through. I look forward to the day when she can just be a little baby free from pain and spend time laughing and playing.

:hug: I hope you have a smoother road ahead. I don't know what else to say.. just that I am thinking of you

I think that you and your family are doing a great job. Thank you for sharing your story with us and i wish you the very best for the future. You will be in our thoughts and keep us updated to her progress.

Thanks Nikki

firstly i want to say congratulations on the birth of your precious daughter Lucia!
What a long pregnancy you had to endure with the worry of your baby, and you are doing such an amazing job right now.
I hope Lucia is well and it must be difficult with the weight gain issues.
Thinking of you and hope all is well, thanks for sharing your story and i hope it in some way can help you by writing it down and expressing your feelings

Hi and welcome to BellyBelly. Congratulations on the arrival of little Lucia. You've certainly gone through a tough time. My son was born with congenital heart failure, so I understand a little bit of the emotional rollercoaster involved in your daughter's story. There are a couple of sections in these forums dedicated to supporting parents of little ones who have health issues and challenges. I hope you feel welcome and supported in your journey as you get to know the other parents on BellyBelly. :hug:

Congratulations on the arrival of your precious girl Lucia. I am sorry for the hard times you have had, and I hope that as time goes on, things become easier for you both.

Hi and welcome. Firstly I would love to tell you congrats on the birth of your little girl. And secondly, I think your doing an amazing job. You should be so proud of yourself and your little girl. I'm sure she is so grateful that she has you as her mummy. I hope things start to improve for her and for you. Good luck, with all that comes.

Welcome to BB and congrats on little Lucia! A close friend of mine had a baby with a really large nuchal fold, I think it was around 6 mm also. They didn't tell her the risks associated with this measurement, even when the amnio showed no downs. I know she found great support in local networks like SIDS kids and other groups that support parents with sick little ones.

Having watched my friend struggle with the illness of her baby, I have gained a small understanding of how hard it must be, and I know that there is not much anyone can say that makes it better. For my girlfriend at least, meeting and sharing with others that have been through a similar thing helped her accept her grief and allowed her to talk about all the emotions she was feeling.

good luck hun *hugs*