Most preemies need blood transfusions. So if you’re in Columbia, SC or anywhere near, come on out to the blood drive on Friday, May 16th.
I think one of the most amazing things to come out of my journey with Twin to Twin Transfusion Syndrome (TTTS) is the relationship with other moms and to be a part of the resilience and the desire to make a change and do something good from our struggle.
One of those moms has become a very close friend of mine. ReNee is blessed to have double survivors, Peyton and Addison (their story is below) but their journey was not easy. ReNee and I met through mutual friends in Columbia, SC after the TTTS connection was made. Her girls are about six months older than my survivor Tiny, and we had the same doctor through our TTTS struggle.
ReNee is an artist and has spent the last 3 years trying to bring some love and light into the lives of anyone struggling with TTTS, premature babies, or loss. She does this through her amazing creations, which can be found on Random ReNee. She will personalize just about anyone for anything. My favorite one she has done recently for me is what I like to call my “what it would look like if I had two” picture.
But this post is not about her artwork, it is about her dedication to bringing awareness to TTTS and to doing what she can to make a difference.
Like hosting a blood drive.
I haven’t done any research on the numbers associated with prematurity and blood transfusions, but I know that BOTH of my girls required blood transfusions, as did both of ReNees. That blood saved their lives. I would make the guestimate that many preemies rely on blood for transfusions, just as any mother who has bleeding and issues during childbirth (which is more than you realize!)
So ReNee, in seeking an original way to do something to give back to the community, raise awareness for TTTS, and raise money for the TTTS Foundation, decided to organize a blood drive.
If you are anywhere near Columbia, SC, we hope you’ll stop by, or at least share the word. And if you’re not local to us, maybe you could think about doing something similar. If you would like to make a contribution to the donation ReNee is making to the TTTS Foundation, you can send it via paypal to ReNeeNeeBeau@yahoo.com
We will have a balloon release for TTTS Angels, and three local families (ReNee, me, and a friend Rachel) will be there with our survivors to tell about TTTS and the importance of this blood drive.
And now I’d like to share Peyton and Addison’s Story.
I’m just going to go ahead and admit that I’m a little biased about this story, because Peyton and Addison live nearby and I get to spend time with them every month! Their mama, ReNee, was the first TTTS mother I met and began to bond with, and she and I have become friends. We even have a picture of my Tiny and ReNee’s Tiny, Addison at about the same age – they look so similar, even we have a hard time telling them apart! (Weird??) We had the same doctor, our babies were in the same NICU, and we have bonded so much over the past year. We have playdates with our local TTTS Moms (we have a TTTS Survivors Group) and we celebrate our victories and mourn our losses together. ReNee has been a major part of my recovery process!
Peyton and Addison (PandA)
by ReNee Bixler
I called my husband with plans of being all cute and telling him, but as soon as he answered I started bawling and saying “I don’t want to lose another baby!” to which he replied “Ok???? So do you not want to try anymore?” and I said, through tears “It’s to late!” not quiiiiiite the cutesy lovey way of telling him, but it really did set the pace for our up and down emotional pregnancy.
I immediately called my Dr. and went in a couple days later.
I had no idea how far along I might be. My best guess was about 5 weeks. So my Dr. did bloodwork to ensure the baby was progressing (unlike my last two pregnancies) and she called later that day and said “Are you suuuuuuuure you’re only 5 weeks!’ I said Yes. She expressed that the hormone levels seemed to say I was closer to 3 months. Which was not possible since I’d lost a baby then.So she wanted me come back in for another blood test the next day. At this point I was already in tears worried that this was BAD. So the next day we went in and she drew more blood and she sends me for an ultrasound…. The ultrasound just showed the sack. No “dot” yet…. which was consistent with my thoughts of being about 5 weeks pregnant.
Then my Dr. walks in and immediately says “Do twins run in either of you your families?” Honestly, it didn’t even phase me or occurred to me why she’d ask this, so I said “Yup, both, why?” at this point I look at my husband whose eyes are HUGE and the Dr says “Well, your hormone levels are REALLY high so either you are much further along then 5 weeks, which we’ve ruled out or…..” and I said innocently and cluelessly “Or what?” My Dr then says “Well, you are definitely pregnant…. It’s just a matter of with how many. Id bet it’s three or less.”
JAW HIT THE FLOOR! We didn’t tell anyone but my parents and best friend that it was likely more then one…. and they didn’t believe it was possible, my mom kept saying “It’s not possible” (while giggling!)
Two weeks later at 8 weeks my Dr had me come in for an “official” first visit and did another ultrasound and as soon as the picture appeared, we saw , clearly – TWO DOTS! Both my husband and I were silent except for sniffles! Happiest moment of my life, Id always wanted twins, and I WAS HAVING TWINS! But that joy changed…. fast…. when the Dr came in…. She looked over the ultrasound and started talking about how it looked like they MIGHT be identical and they MIGHT share a placenta and they MIGHT develop this TTTS thing. But that she wanted me back in 2 weeks to double check once they were more developed.
So two weeks later my husband and I went back in and she did another ultrasound… Baby B was measuring a few days “behind” Baby A. At this point my Dr. earned my HIGHEST respect when she said she really felt it was or would become TTTS and she gave me the limited info she knew, which wasnt much, and was terrifying – and she openly and honestly said she did not know much other then, one baby will be smaller and has less fluid and will stop growing and it was VERY fatal and untreatable. But she also wasted no time and made me a referral to the area specialist in TTTS and high risk pregnancies.
My apt was made with the specialist 5-6 weeks later. Between that apt last apt with my Dr and meeting the specialist I had to say goodbye to my husband as he deployed for a year tour to Afghanistan. The worst day of my life (up until that point) – I was faced with possible TTTS, a pregnancy and being alone…. A week later my parents, and I sat at the specialists office….. the ultrasound confirmed the possibility of TTTS.
The Dr. came in after the ultrasound to talk to us… and within minutes he had me comforted and scared and happy and worried. I left that office with a heavy yet excited heart. They didn’t FOR SURE have TTTS yet, but he really felt they would soon enough. So he had me on and every other week apt routine. And between then and the 12 weeks to follow every other apt was up and down up and down. First both babies were ok, then Baby B was getting smaller and smaller, then their fluid levels were equal, then Baby B was less (but not “bad enough” to do anything) it was topsy tervy at best….
Truthfully I kept ALOT of the ups and downs bottled inside because I didn’t want to worry my husband when he was a million miles away fighting a war and had to focus on keeping himself safe.
At 20 weeks a local friend of a friend contacted me and told me her TTTS story and gave me Dr Delia’s contact info and I contacted Dr.Delia via email and he emailed me right away and said BED REST (I’d already put myself on bed rest due to being scared/worried/depressed) but he also told me to drink protein shakes 4-5 a day, sipping them, so I did….
Then at 27w 4d I went in for my ultrasound, the tech said things looked the same as the previous week. Later that afternoon the Dr.s office called and the nurse said the Dr. had looked at the ultrasound and I had to get to the hospital ASAP and to bring enough stuff to stay until the babies were born and it could be any day up to 9 weeks. I called my parents in NC and told them to head down (2.5hrs) and called my Red Cross contact JUST to get a message to my husband to call me cause I was at the hospital. And then I had a friend get me to the hospital.
I was at the hospital for 4 hours, checked in, got IV , talked to 100 nurses and THEN a Dr. came in and explained that my smaller baby had started to send her blood supply back to the placenta, it was intermittent but it was NOT GOOD if it happened at all. They hooked me up to 100 machines. The Dr. explained they’d monitor me overnight and that my Dr would come by the next morning and “decide what we would do.”
My husband called from Afghanistan a few hours later and I told him what little I knew. Of course I downplayed it and acted as casual as possible. The next morning my Dr. came in and said the reversal wasn’t getting worse but sure wasn’t better… And then he said, words I’ll never forget…. “If we deliver now you have a good chance, and that’s all I can say, a chance, of two healthy babies….. if you go to term you will have one live birth and your smaller baby will be still born.” My heart sank…. I stared at him and then I said “Are you seriously asking me to decide?” and he said “No, that’s the basis for my decision. We need to deliver.” This was a Friday… He wanted to deliver Sunday…… I agreed.
I called my Red Cross contact again, this time to request my husband come home (which is something they offer in extreme circumstances) to which she told me “I put that request in yesterday when I talked to you, I just knew it wasn’t going to be good.” So the process had already begun and he’d be home Sunday night, missing the delivery by a few hours…
When I talked to my Dr. the next morning he agreed that we could wait until Monday so Josh would be home, but mostly because I’d be 28weeks which would increase their chances of survival even more. So we decided to wait until Monday UNLESS the monitoring showed signs of the reversal getting worse or anything changed, in which case I signed/agreed to an emergency c-section if they needed to knock me out at any time… Every time the door to my room opened after that I braced myself that THAT would be the moment!
Sunday night my husband got home and to the hospital at 6pm with the best news he could have brought. His general had discharged him from his deployment. He didn’t have to go back! They reassigned him to a job on base here!!!! To this day, all I can say is, THAT’S GOD, because that is UNHEARD OF in the military. Truthfully though, they did it because they assumed he’d be planning two funerals and grieving and didn’t think it would be healthy for him to go back after that…. Terrifying to think….
7am on Monday I was being prepped for surgery, with my husband by my side!
At 9:18am the Dr held up this baby, this teeny tiny, Baby A. My Peyton! I have never cried so much in my entire life and I waited I wanted to hear her cry more then anything, but I knew she wouldn’t… and then the tears started just in time to hear “Here is baby B” and then they held up Addison. And my heart sank and the tears changed, they changed and my heart broke and I sobbed to my husband “They’re never gonna make it….”
I NEVER thought such tiny little people would be strong enough. Their faces were 1inch from top to chin….. It was the most horrible moment of my life….. This was supposed to be a magical amazing moment, giving birth, this was not how I was supposed to feel, this was not how it was supposed to be….. and then…. THEN, I heard a squeak…. and then another softer squeak and my Dr says “They’re crying… both of them… and breathing on their own!!!!!”……..silence…. “ReNée that’s a really good thing!” the Dr said…..
I still didn’t know if they’d make it but I had hope, because I heard them cry!!! They brought Addison over to me first for a quick kiss then off to the NICU she went. Then Peyton came by for a quick smooch and away she went to the NICU. My husband went with them.
Addison Quinn 1lb 12oz
Once I was back in my room my husband came back and got my dad and grandpa and went to the NICU to show them the babies. (My mom had been in the hall when they pulled then out of the OR so she’d had a peek already and since only 2 guest were allowed in the NICU , she stayed with me.) When my husband came back to show me pictures of my babies he showed me a picture of Addison… wearing his wedding band ON HER ARM…. The most terrifying picture ever! I dropped the camera and was done looking.
Later that night I was able to be wheeled up to the NICU to see my “Teeny” (Peyton) and my “Tiny” (Addison) as they have been called ever since They were indeed teeny and tiny and perfect and beautiful!
Our NICU experience only sucked because it was the NICU and our babies were not at home, but I have to say aside from that it was a breeze. Addison only had to be ventilated for 18hrs about 2 weeks after birth because she got an infection and couldn’t breath and fight it… but other then that…. We had NO issues. They just had to grow grow grow. It was frustrating watching the days slowly pass by but we were truly blessed in that there were NO medical issues with either baby…. They just needed time.
At 66 days Peyton came home and it truly broke my heart walking away leaving Addison behind… Thankfully it was only a couple weeks later and 72 days Addison came home….
Seems like it happened yesterday and it seems a million years ago all at the same time…. I never imagined I’d have two survivors. I didnt think I deserved it and after losing 2 babies before birth I had fully resigned myself that God allowed me to have a step daughter (who I ADORE) every other weekend, because that was the only child I’d ever have…. How wrong I was! And how blessed I am.
I am not the type of person to “preach” to anyone I have my faith and I have my beliefs and I hold them close, but I don’t force them on others…. But looking at my two miracles I can only say My God is amazing. If I didn’t have a strong faith before I sure do now. He has given me everything I ever wanted and more and when I see these two babies I see His grace and His mercy and His love and nothing will ever change that. Bed rest might have helped sustain them. Protein might have evened out their fluid levels from time to time. But I believe God saved my babies and God gave them to me healthy and strong and perfect!
I have recently built up the courage to call the specialists office and ask “what happened” that day at 27 1/2 weeks when I got rushed into the hospital…. According to the nurse (as the Dr no longer practices there) , that day when the Dr looked at my ultrasound and turned to her, she said he had a terrible look on his face and said “It happened, they’ve got TTTS. We’ve gotta get them out or they’re never going to make it.” the nurse said they both stood in silence with tears in their eyes and the Dr went on to tell her to call me to the hospital but not to tell me “how bad” because he didn’t want to freak me out. She said he told her during this conversation that Peyton had a 10% chance of survival if we didn’t deliver and Addison had 0… ZERO %….. I am thankful they did not tell me that then, but am glad I know that now… it is extremely humbling. And all the more pushes me to press the issue of FREQUENT ULTRASOUNDS for TTTS or potential TTTS pregnancies… Had I not had weekly ultrasound and not had that appointment that day, I would not have my babies now!
My babies are now toddlers. 15 months old and they are perfect! Perfectly healthy , perfectly happy! They’re right on target developmentally and have had no medical issues thus far. That amazing in and of itself for any babies born 3 months early and all the more for TTTS babies! But they are perfect!
Peyton is our “hot mess” always fussing/ climbing/ walking/ talking/ playing and is VERY MUCH a dada’s girl.
Addison is our quiet one. She’s just happy sitting with a board book or snuggling and she is very much a momma’s girl!
Both are walking / talking and giving us more joy and love then we could ever imagine – our babies – our miracles – our SURVIVORS!
“… by my God have I leaped over a wall. As for God, His way is perfect.” 2 Samuel 22:30-31