There are no words...

iVillage Member
Registered: 11-16-2009
There are no words...
10
Thu, 10-04-2012 - 11:57pm

So, I'd been getting ultrasounds every two weeks to monitor my cervical length and Aislynn's growth. At 31.5w everything looked great. At 33.5w things were very different. My perinatologist sat me down in a conference room and proceded with the hard job of telling me that Aislynn had a severe bleed in the left ventricle of her brain. It caused a midline shift and her right ventricle was also enlarged. There was also a low amount of amniotic fluid (indicates kidney issue) and her placenta had thickened (calcification of the placenta means it's not functioning well if at all). She offered me the opportunity to cut the cerclage because time was an issue as her head size was increasing exponentially and it frightened her how fast this bleed was increasing in size. She said that if we removed the cerclage and let things happen there was a good chance (about 40%) that she'd die in the delivery.  She then offered further diagnostics by going to OHSU for a fetal MRI (the gold standard of testing for fetal anomalies).

Needless to say I felt like my heart was being ripped out. The other bad thing was that my husband was on a cruise with his dad and wasn't due back for two days, and this was the day after my 37th birthday. I opted to get as much infomation as possible, so I went to OHSU, keeping the cerclage in and getting further tests. Hoping that it was all a problem with their machine.

OHSU is our research hospital, one of the best teaching hospitals in the country, also housing Doernbecher Children's Hospitla, a pioneer in childhood issue research. I had a second ultrasound there, then the MRI the following morning. I met with nine doctors in all including the hospital ethicist (all hospitals have them in Oregon due to the assisted suicide law here). The pediatric neuroradiologist (I had no idea there was such a thing, very impressive) was waiting to sit with me right after the test, she showed me the scans and I was terrified. She said, "This is not a bleed, on the u/s it looks like one, but this is a choroid plexus tumor, there are two kinds, a papilloma (benign) and a carcinoma (cancerous). Now, your doctor said it wasn't there two weeks ago, and now there's this (the scan looked like Europe took up almost 2/3 of the inside of her cranium), it's grown so fast I would wager that it's a carcinoma. These are so rare, I've seen it twice in 10 years of practice.

I just lost it. I wanted her to be able to be fixed, but when I saw this and it was explained how it was seated, in the lower part of her ventricle, it was explained that even with surgery and treatment, she would be blind, deaf and so severely handicapped she would have no quality of life. I was devastated. I was almost 34w pregnant and she was still kicking and moving around. I became so angry. Everyone knew my history and all they could say was I'm sorry.

It took 13 years and 6 losses to get the twins, this was the first spontaneous pregnancy to go beyond 9w.

She was born at 4:40am September 26th, exactly two weeks before her brother and sister turn one. She was 5lbs 5oz and 18.5in after a 2 hour labor. We confirmed at 12pm the day before that she had passed away. She was so beautiful with a head of red hair and looking just like Isabel.

After several phone calls, there was an OB GYN who expressed an interest in her brain for study, I was fine with this, because I'm a nurse and because when I tried to research this, there was one paper on a fetus with a 4mm papilloma who survived, but my baby's tumor grew to 8cmx6cmx5cm sometime in a two week period. Luckily I didn't have to endure the recovery of a c-section because her head was still small enough to come through.

OHSU performed the autopsy and we will have that report in 4-5w, we will also have her ashes next week sometime as they are cremating her for us free of charge.

Now, we have to wait at least 9 months before I can try again as my cervix needs a vacation. The twins turn one next week and I'm thankful I have them as a distraction. It's been harrowing, I never thought this would ever happen to me. My DH has been the most supportive man I could hope for, he's let me have my bad days (yesterday was a VERY bad day for me as our neice announced what her healthy twins were, granted I'm happy for her, but my SIL hasn't been the most tactful, she had to throw in that she didn't want to tell her daughter what was happening because of her pregnancy, nice of her to make sure I knew the conversation wasn't about me, she even slid in there that their u/s on the same day showed her babies spooning). I wanted to jump off a bridge.

I have drugs that are helping, both with the physical and emotional pain, I'm going to focus on the kids, school in December and weight loss. We've decided not to tell anyone the next time I get pregnant for a long time. It was hard for me to put her things away, my MIL returned her swing for me and I returned her car seat yesterday. I'm trying to focus on the idea that maybe she was sent to me so that someone could learn something, it's the only thing keeping me sane right now, because why should the ball slide into my roulette slot? I've even lost a friend over this because we had the option to go out of state and end the pregnancy to keep her from suffering, luckily she passed before we had to do that, but my friend thought I should do everything to keep her living. I couldn't fathom the kind of existence she would have because it wouldn't be a life.

I love my daughter as much as my living children, she will be cherished, remembered for the beauty she was and for the spirit that will always be with us. I was able to spend the day with her and there will be pictures to remember her and teach her brother and sister and any future siblings. They said this doesn't have a genetic component, but I know that I can never enjoy or get excited about another pregnancy, I will be watching the weeks go by and I was told by my perinatologist that I will be watched even more closely next time.

I apologize for the length, I just hate this so much. It was hard leaving that hospital empty handed when I was so close to holding my dream (that's what Aislynn means) I guess it fits well right?

Thanks ladies.

~Tonya:womansad:

iVillage Member
Registered: 08-27-2008
Fri, 10-05-2012 - 11:30am

So many tears for you Tonya.  You have suffered the absolute unthinkable and I'm so very sorry.  I'm happy to hear your DH is there in every way and that your twins will keep you busy as you put one foot in front of the other and try to heal from this.  IMO only the strongest mommies are faced with devastating losses.  She will never be forget I know.  A friend that lost her little boy a few months ago planted a tree with beautiful blooms and put a memorial stone at the bottom of it.  She says it has brought her peace to see it grow and change...and she said it also gives her a special place to go and cry on those bad days.  Lots of love, peace and {{{HUGS}}}

Blog at http://someday-soon13.blogspot.com 

Photobucket

DH - (34) & I (Caryn-37) got Married in Mar '06, started TTC Jan '07
~3 years of TTC, 8 cycles on Clomid, LAP surgery, 3 IUIs and 1 lucky IVF
Kylie Brynn arrived via c-section on May 29, 2010!

TTC #2 - FET in September of 2012 - BFN. Next FET in October, better luck this time, please!

baby growth

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Fri, 10-05-2012 - 12:54pm
Tonya, sending you more (((HUGS))) here, I'm just so sorry that you are going through this :smileysad: Try to find some comfort in the twins, we'll be here for you.

Avatar for duchessdina
iVillage Member
Registered: 03-08-2011
Sat, 10-06-2012 - 11:47pm
Tonya, I can't say anything that will take away the pain you are feeling right now. (((Hugs))) I can't imagine going through something so horrible. I do agree with Caryn that I've heard of couples planting a tree or doing something special to do as a memorial. My cousin lost her 2 week old baby a few months ago and I think she is planning something like that. I'm just so sorry that you are suffering and going through this. I hope you can spend some quality time with the twins and give yourself time to heal. I hope they can learn more about this so they can help someone else in the future. I'm glad you were able to allow them to do the research even though I'm sure it was heartbreaking. I will send lots of PT&P's your way. I'm so so sorry for what you're going through.

Photobucket

iVillage Member
Registered: 02-13-2011
Wed, 10-10-2012 - 9:02am
i am so sorry to hear this. i wish i had the words to offer you comfort...

Diane

Expecting #1 (a boy!) on January 16, 2013

iVillage Member
Registered: 06-09-2009
Wed, 10-10-2012 - 8:44pm
Tonya,

I am so sorry to read this, my heart breaks for you and your family. Your beautiful twins will be missing a sweet sister and hopefully her angel wings will be there to protect them as they grow up.

Sending you lots of hugs and prayers for strength to survive this nightmare.

Lesley
TTCF Grad
iVillage Member
Registered: 11-16-2009
Mon, 11-05-2012 - 11:46pm

Thank you everyone, I'm taking it day by day. The twins' first birthday party was a success, halloween theme and all. I'm starting to prepare myself for school next months, it will be OB/Peds so it will be difficult, but my instructors are already coming up with ideas for me to cope a little easier. Things are getting better, we got her ashes back and the plaster casts of her feet and hands were perfect. I'm just waiting on her post mortem report. I'm hoping to have some answers. She's teaching people across the country, I went to my clinic Friday and got her scans from 9/5 9/19 and 9/25 on disc to give to our cousin from Chicago, she's got a friend who teaches sonography and I'm sure they don't see a lot of anomalous images, so she will get to show future techs what something like this looks like. I still wish she was here, but we do have momentos and there's a lovely shelf in the livingroom where her keepsakes are.

The twins are full-bore walking now, it's crazy. I can't believe how much they're growing. It's frightening me. I'm also doing hypnosis for weight loss and I've lost 21lbs since Aislynn was born, I gained 16lbs with her, so I'm focusing on me now and I feel guilty but I've got to take care of myself, otherwise, how can I care for anyone else?

Tonya

Avatar for duchessdina
iVillage Member
Registered: 03-08-2011
Thu, 11-08-2012 - 10:33am
I'm glad that the Twin's party went well. It's great that you are using all the images to teach others and that they are doing the research to learn more. Hang in there and I hope that you will start feeling less guilty about taking care of yourself, it's so important! Good luck with your upcoming semester in school, I didn't learn all that much in OB Peds when I went through nursing school, it probably would have helped me right about now, but there was so much to cover that we only got a brief overview.

Photobucket

iVillage Member
Registered: 11-16-2009
Tue, 11-20-2012 - 9:20pm

It's the only class I have this next term, so it's about all I can handle. It's 11 weeks. I'm expecting about the same kind of thing as my LPN OB (that was 16w and two separate classes for those LOL). We do get certified for PALS though so that's good. I got her cremation necklace today (it's a diy thing but I got a little bit of her ashes in it and now I'm wearing her close to my heart. A good friend of my who's been TTC her first finally went to my RE (her's has strung her along for 7 years and she's only 28) and he got her in on this IVF cycle and she's the only person IRL I'm excited for. These last few weeks have been weird. I've only really started grieving in the last week (my doc took me off Paxil because I hated the flat affect) so I've been a mess.

DH said in May we go to the RE and make sure I'm in tip top shape, I need to have my cervix measured to make sure it'll be thick enough to hold so I don't have to do bedrest again or worse, another cerclage.

My neice is planning her sister's baby shower (She's having identical boys I wish it had been that easy for me she did it one week of bcp but she was under the impression it was after New Year's) well her sister is hosting a SURPRISE shower for December 1st. Then she asked my SD if she'd ask me if I was going. Luckily she handled it for me, said that it was probably something I wasn't ready for. Cripes, the holidays this year are hard enough, throw this in and it's going to be torture. It took 3 hours at their dinner just to announce the genders.

Anyway, yes, I'm happy for her but at the same time, my DH's family has treated me like I'm invisible and if I even mention Aislynn's name even as a point of reference (told my SIL the twins started walking a week before A was born) and no one talks to me the rest of the night.

I'm trying to focus on the positive. I've lost 29lbs now, I have 55 to make my goal of 150, DH just wants me down to 175 since I have about 30lbs of loose skin that will be removed after we are done having kids.

I've had a rough couple days but there is a wonderful support group for people like  us, who've actually "interrupted" a pregnancy for medical reasons since we actually got a KCl injection to stop her heart because we were terrified of her surviving delivery and then treatment being forced on her (the average life of a child who gets treatment after birth is 9w until docs decide they can do nothing more then it takes two or more weeks for them to pass and it killed me to think that could happen to her). The official diagnosis is a Congenital Supratentorial Primitive Neuroendocrine Tumor. I don't have the pathology and etiology report I'm hoping that will be next week. I hate closure in stages and I just need to get on with life.

Sorry this is so long, I've got everything crossed for you lovely ladies!

Tonya