New to board.....Irelynn's story (long post)
I really, really, REALLY am so sad to be posting here. My heart is broken and I don't know whether to be angry at god, genetics or my Dr.......
My DH and I decided not to find out the sex of our suprise baby (BFP Oct 2011). We had four ultrasounds total, the last one being in Feb. Each time the baby measured just fine, had a healthy heart-beat and I remember the Dr telling me "the baby looks great".
The last week of April, I looked down at my ankles one night, and noticed they were swollen. I know that happens in pregnancy and my ankles were swollen near the end of pregnancy with DD, so I didn't think much of it. I had a Dr's appt the next morning, and my blood pressure was up and there was trace amounts of protein in my urine. (I did not have preeclampsia with DD). My next 2 appointments the protein increased, as did ME. I gained 5 pounds in one week, and my belly was measuring 44cm at 34 weeks............ The baby was so low, I could feel her shift if I squatted or bend down, and I'm pretty sure I was peeing on myself every time I stood up. I should had demanded another ultrasound or something....but my Dr. didn't suggest anything.....so I figured the baby was just big.
May 10th, my water broke in the bathroom at work, I was 35 weeks. I had already planned a c-section,( as my labor with DD had been 3 days and ended in a c-section anyway) so, I was hooked up to the monitors and ready to go at 3:00pm.
Irelynn Mae Ellers was born weighing 5 pounds 2 oz and was 18 inches long. She made one cry....and then there was silence. I was just laying there, my DH looking to see what was going on as more Dr's rushed in. A nurse came over and told me the Dr. was going to come and talk to us.......then another nurse.........then the Dr. "Your baby is very sick. She is not breathing on her own" was all I heard......and then she was rushed out.
My daughter had a diaphragmatic hernia, as well as facial abnormalities, genital abnormalities and was unable to breath on her own. After being airlifted to UNC Chapel Hill she got worse. She was hooked up to 8 different machines, 3 of which were heart pressure medications. She developed a pneumothorax, which had to be emptied every three minutes. Around 2:00am on May 12th, we decided that our little girl shouldn't have to fight, and asked for her to be removed from life support. I held her as passed.....and then she was gone.
I got to leave the hospital on Mothers day with a memory box and blanket.
We opted to have an autopsy, as the Dr's don't KNOW what she had. My Dr apologized, saying he was "sorry he missed it". WTH is "it" what was missed?? What happend to my baby ????? I wait every day for anwsers and it SUCKS. We also opted to have her cremated, and I wait every day for her to come home and that sucks even more.
I miss her so so so much......
The Dr's @ UNC think she may have some type of gentic/chromosonal syndrome-possibly Frasers or Fryns. Fryns has 50 reported cases EVER. They are both hard to explain, but please feel free to google.
Re: New to board.....Irelynn's story (long post)
Siggy Warning
I am so so so sorry. So sorry. I can not begin to tell you how much I hurt for you. If you need anything please don't hesitate to ask.
There are not many of us in NC and my situation is different but if you need anything at all I will help in anyway I possibly can.
Huge hugs.
BFP#1 9/7/11 EDD 7/23/11 mc @21 weeks caused severe bladder obstruction on 3/14/12
BFP #2 9/9/12 EDD 7/19/13 started to mc @ 8w1d on 12/7/12 ended up with d&c 12/18/12, stopped developing @5w5ds
Unexplained IF
BFP#3 3/3/14 After 1st iui and clomid cycle
beta 1: 137 beta 2: 268
Beta 3:1248
****Hoping for a rainbow baby!!!****
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.
I am so so sorry for the loss of your sweet Irelynn. My heart is breaking for you. Please know that we are here for you if needed.
(HUGS)
As a side note, I also live in NC and my daughters were also born in a UNC hospital. They have wonderful staff.
BFP #1 12.24.07 - DD born @ 39w1d on 08.26.08
BFP #2 08.04.11 - DD born still @ 37w3d on 03.25.12
--------------------------------------------------------------------------------------
TTC #3 since May 2012
BFP #3 12.29.12 - CP @ 4w2d on 01.02.13
BFP #4 10.17.13 - CP @ 4w2d on 10.23.13
BFP #5 04.06.14 - MMC 05.07.14
No longer trying to conceive.
thelossblog.blogspot.com
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
? to Loss+M/PL+TTCAL+PgAL+PAL
PgAL/PAL welcome
We had our son's body cremated as well and the wait for his ashes to come home was unbearable.
Please feel free to post anything here. This is a gentle, loving board- these ladies have been to hell and back and know what you are now experiencing. Big, huge hugs to you. I'm so sorry.
I am so sorry for the loss of your sweet baby girl Irelynn. Please know that we are here for you when you need us. Huge hugs!!
Heather
type 1 diabetic for 7 years. Been on the pump for 6 years.
Most people only dream of angels. I held one in my arms.
WEBSITE:?Olivia Marie? BLOG:?Missing Our Angel Olivia?
All AL Welcome
Oh, honey, I am so, so sorry for the loss of Lrelynn. I can still easily remember the first days after we lost Grace. There are no words that do it justice, and there is nothing that will make it better over night. I cried until I threw up, beat my fists into the floor, screamed at the ceiling, and just stared at the wall. I wore the same clothes with no shower for 3 straight days until I realized it. People came and went. It was terrible. We also had our daughter cremated and held a service for her at my home church.
I also fully understand having no real (or acceptable) answers. All we can be told is "we believe your daughter had this condition and we (the world of genetics) believe this condition is recessive genetic. Although we can't say for 100% on either, but that is our best information that we can give you." Our situation too is rare like yours, with less than 50-100 cases ever (though a different condition). We were told that more or less a month after she was born, but it was confirmed more definitely when we went to discuss TTC in early January. That sent me back into a funk and was really hard to hear.
Just know you are not alone, no matter how alone you may feel. We are all here for you and we do (sadly) understand. Be kind to yourself, be patient with yourself, and don't push yourself to do anything you don't want to do. I was out of work for 6 weeks and I needed that time. Some people feel like they need to get back. Take your time and do what is right for you. I finally saw a grief counselor in January, and I would highly encourage that, even if you think you don't need it. Sometimes we don't realize we need it when we do. I was angry but tried to not be because I didn't want to be an angry person. I didn't realize that anger was part of grief and that I would not be angry forever, but I did have to go through it.
I am so so so sorry for your loss. My heart breaks for you. The first weeks/months are really dark....but I do promise that you will not feel like that forever, though you will miss your baby every day. If you need to talk, you can email me at jenn (dot) craver (at) yahoo (dot) com I am also in NC - Triad area.
Hugs,
Jenn
We are so thankful that our second daughter, Lillian Elizabeth "Lily", was born healthy and happy on February 11, 2013. We love her to pieces.
We lost our first daughter, Hannah Grace on May 4, 2011. She was buried on May 14 during a beautiful service at my home church. We are grateful that if she could not be here with us, that she is healed and whole with the Lord. We look forward to the day when we will get to meet her. We love her so much.