Intro--Preparing for late loss of one twin (ticker warning)
Bread09
member
I usually post on PAIF and I lurk on multiples and November 2011 Moms...
Here's my story...I'm currently 35 weeks and 3 days pregnant with twins and we found out at our anatomy scan that Baby A (our girl) had a severe heart defect and possible skeletal dysplasia as she was measuring small and disproportionate. The doctors gave us little hope. We were transferred from our regular high risk OB to a MFM group 40 miles from our house so that we could deliever at a hospital with a Level 3 NICU and a Children's Hospital attached. This hospital is also well known for doing complicated heart surgeries on babies. We were feeling like we were in a good place. Baby A was growing and was more proportionate, although still weeks behind her brother, and her heart defect was named, Hypoplastic Left Heart Syndrome, and was deemed to be repairable--if she could get big enough.
The pregnancy was progressing well and my doctor was so excited that I made it to 35 weeks. He thought we would easily get to 36 and then felt comfortable delivering. At 33 weeks, we started having monitoring twice a week and a growth scan was scheduled for yesterday at 35 weeks, 2 days. Baby A started failing her NSTs but passing her biophysicals and the doctor wasn't overly concerned because she did have the heart defect. Yesterday she failed everything, her fluid was at 1.5 and the growth scan showed that she had stopped growing since the last growth scan about 3 weeks prior and is around 2 pounds. My doctor made the decision that we were going to deliver yesterday to give her a chance and see if they could do the surgery. He thought it was worth the risk to Baby B since the cardiologist has been on board with the surgery since the beginning.
Prior to heading off to Labor and Delivery, we had a final fetal echo. The cardiologist was not happy with the size of the baby and stated that she wasn't sure she could do the surgery. She said we would see what she looked like after birth and sent me to L and D. So off I went to L and D and have now alerted everyone and DH and my parents were on their way. They put me on the monitors and started an IV. DH got to the hospital and next thing we know, the neonatologists and my MFM are in my room saying that they talked to the cardiologist and she stated that there is nothing she can do for Baby A--she is too small for surgery and they all gave her a "close to zero percent chance of survival." They went through everything with us and the decision was made that we are not going to deliver tonight because it was putting Baby B at risk when nothing can be done for Baby A--no matter when we deliver her. She is way too small to live with such a major and severe heart defect. She would never survive the surgery and she is declining so quickly in the womb.
So we were told that Baby A may or may not be born alive (depending how far we go), and if she is born alive, they will only be able to do compassionate care as she will not live more than a few minutes to a few hours. We always knew this was a possibility, but now it is a reality. The plan is twice weekly monitoring for me and Baby B and we will talk delivery of him around 38 weeks depending on how things are going. I have no idea how to prepare to grieve one baby and take care of a very healthy one. I'm not sure I can do it. We feel so lucky that Baby B is very healthy and doing so well, but I'm so sad about Baby A. I tend to go in planning mode when stressed and I started making lists of stuff to take out of our house, stuff that we bought that we need to return, and so on. We have a good support system and they are all said too--which is hard for me to see.
I know I have a unique situation and I am so thankful that we have one healthy baby in there, but so distraught about losing the other. I looked around on this board and the support and strength on here is amazing. My heart goes out to all of you. Thank you so much for reading this.
2/21/11: IVF #1 Begins and results in TWINS!
11/4/11: The twins are born at 36w4d!
11/5/11: We said goodbye to our sweet baby girl as she was born with multiple complications and a severe heart defect, Hypoplastic Left Heart Syndrome.
Re: Intro--Preparing for late loss of one twin (ticker warning)
I am so sorry for the painful and bittersweet situation you are facing. I think jggeno## (sorry! I don't remember your full SN!) on here has also encountered the late loss of one of her twin DDs and may give you some more insight. She also has a blog listed in her posts.
It is perfectly normal to grieve your daughter, even while you welcome your son, and I encourage you to do so (and there is no time limit on this grief). Also, please ask a family member or nurse to definitely contact NILMDTS (https://www.nowilaymedowntosleep.org/) on your behalf right now to take pictures for all of you as a family, of your twins together and of your daughter. Many of us on here, including me, have had them done and cherish these pictures (this is a volunteer org). Even if you aren't able to look at them right away, you can have them to keep. If you can right now, try not worry about returning things (we had to return things too and store are very kind about returns) and just rest and enjoy time with your kiddos before delivery.
Take as much time together as you want, take pictures with your camera too, snuggle/hug/kiss/touch, and enjoy your time together. Many of us also kept the blanket that baby snuggled with so if you have one, bring it with you. We also brought DS's coming home outfit for him to wear and I love that he's wearing that in his pictures. Lots and lots of (((hugs))) and thinking of you in the days ahead. We're here for you.
? to Loss+M/PL+TTCAL+PgAL+PAL
PgAL/PAL welcome
BFP #2 - EDD 2/26/12 M/C 6/28/11 @ 5w2d
BFP #3 - EDD 4/7/12 M/C 8/2/11 @ 4w2d
Too beautiful for this earth
BFP #4 - EDD 12/09/12, Lucille arrived 11/26/12
I am just so sorry. The term bitter sweet just doesn't even define what you are going through. I am glad you found this board. The ladies here are amazing. You will find an incredible amount of support and understanding in what you are going through.
(((hugs)))
T1 diabetes diagnosed 11/95 due to severe pancreatic injury
BFP 1 1/22/10 EDD 9/30/10 Adria b. 9/11/10 d.8/9/11, Transposition of the Great Arteries,
Pleural effusion, Kidney Failure
BFP 2 4/26/12 EDD 1/3/13 M/C 5/13/12
BFP 3 10/3/12 EDD 6/17/13 Twins! Preston and Juliet b. 5/22/13
DD #1 passed away in January 2011 at 14 days old due to congenital heart disease
DD#2 lost in January 2012 at 23 weeks due to anhydramnios caused by a placental abruption
I am so very sorry. There are no words. I too lost one of our twins. It's such a hard place to be in and such a unique situation. On one side you are devastated and on the other you feel so lucky to have one healthy baby. My story is different in the fact that we have not learned a cause as to why Lilah passed. All test results/ examinations came back perfectly normal. It was a true anomaly.
A girl that was on my board lost her daughter to the same condition your little girl suffers from. I listed her blog below.
https://babycsheart.blogspot.com/
please feel free to PM me if you need someone to talk to that understands. I was a mess of emotions. I was so sad/ yet happy at the same time. Then I would feel guilty that I was happy. For a few months afterwards when I would see twins I would lose it, but please know it gets better.
I try to think about the positives. They are honestly what got me through the first few weeks.
On a side note- This sounds absolutely ridiculous, but out of this horrible situation please feel lucky in the fact that you will have the chance to hold your daughter, get to look upon her face, and get to say goodbye. Unfortunately, we were never able to see/ hold Lilah, because she spent the remaining 9 weeks after she passed in utero. We were advised not to look at her. All we have are footprints and It drives me crazy that I have no idea what she looked like.
I will keep you in my thoughts and pray for strength for you and your family. *HUGS*
Lost Lilah (Audra's twin) at 26 weeks. Cause unknown. Forever in our hearts
2/21/11: IVF #1 Begins and results in TWINS!
11/4/11: The twins are born at 36w4d!
11/5/11: We said goodbye to our sweet baby girl as she was born with multiple complications and a severe heart defect, Hypoplastic Left Heart Syndrome.
First, I am so, so sorry for what you're going through. This is only my second post on this board and I haven't introduced myself yet, but I lost my twin daughter Madelyn (also Baby A) five days after my twins' delivery at 32 weeks due to a birth trauma. The situation was completely unexpected and I couldn't possibly fathom this outcome during my pregnancy, so I was unprepared and honestly don't know how I got through those five days. Well actually I do, it was my twin son Jack and my husband. I'm beyond thankful for them in my lives.
This was six months ago and because it's something I think of almost every minute, here are some things I did/did not do:
*I never got to hold both babies at the same time and I deeply regret that. The delivery was so rushed getting our daughter stable (I did get to hold my son in the delivery room) that I didn't get to hold her. No one thought to bring my son up from the Special Care nursery where he was to the Level III NICU where my daughter was when she passed, and in retrospect even though it would have been extremely difficult at the time, my biggest regret is that I didn't get to hold both my babies at the same time.
*We had a Now I Lay Me Down to Sleep photographer come in and I'm so glad we did. It took me four months to look at the pictures she had taken after my daughter had passed, but I'm so glad for them because they are the only ones we have of her without wires and tubes.
*As a twin mom, I always worried during pregnancy how I'd balance having two babies. Realize that that doesn't go away with your daughter's passing - that you are still a twin mom and your love and time is still split (multiplied?) in two. It is not a disservice to your son to grieve for your daughter, and it is not going against your daughter's memory to find joy in your son. I struggle with this, but when I stopped seeing myself as a mother who lost a daughter and have a living son, and started seeing myself again as a twin mom that I really started to feel better about these conflicting feelings I have.
*People don't know whether or not to say congratulations or that they are sorry. I always tell them to please acknowledge both events and that as I mother I deserve congratulations on the birth of my twins and on my son's health (he is doing very well). I also deserve condolences.
*I didn't know that I'd be losing my daughter during my pregnancy, but I was very good about documenting the pregnancy, really enjoying myself, and taking pictures, writing stuff down, etc. That's the time when I feel my daughter was alive and with us, despite still being in the womb, and so preserving those memories and making sure I have a good record of my pregnancy has meant a lot to me since her loss. Sometimes I don't like to think of her time in the hospital when I think about her, I like to think about the joy I felt during my pregnancy.
Again I am so, so sorry for your loss. Even though we went through something similar I hesitate to even compare because I hate comparisons to my own loss and I don't pretend to know what you are going through as this is all anticipatory for you. I hope the best for you and your family and you are in my thoughts and prayers.