Today’s Micro Preemie Monday is a story that hits close to home for me. You will meet Micro Preemie Twins who were born almost the same gestation as my boys. In addition to being Preemies, they also are survivors of TTTS and SIUGR. Twin to Twin Transfusion Syndrome and Selective Intrauterine Growth Restriction are both very serious conditions of the placenta where one twin does not receive enough nutrients and the other receives too much. To learn more, or if you know of anyone pregnant with Identical Twins, please visit The Twin to Twin Transfusion Syndrome Foundation.
Now, I will let mom, Sophia, tell you about her Identical Twin Girls.
1. Tell us about your baby/babies
Well, I’ve had 6 babies (all girls!) but only two were MP’s. Evangeline Joy and Noelle Eloise were born at 25 weeks 6 days gestation weighing 1lb 10oz and 1lb 12oz.
2. How long was your NICU stay?
Noelle was in NICU for 104 days and then came home with a feeding tube (temporary one like used in the NICU,) Ileostomy (an opening made in the small intestine) bag, Oxygen and the A&B’s (Apnea & Bradycardia) monitor.
Evangeline was there a bit longer because she got Influenza just the day before she was set to discharge so she was in isolation for a few weeks and was released after 132 days. She was also on Oxygen and had the A&B’s monitor.
What was the hardest part?
Feeling completely helpless. Feeling like I was in the way. Feeling like if I talked to them or sang a song or read a book that I would be judged, so I didn’t. Almost losing Noelle after an intestinal surgery at just 5 days old. She bled out internally because she didn’t clot at all after surgery. Everyone was sure she was going to pass away that night. She looked so terrible. They had me call in my husband and our pastor. It was the hardest night of my life. All that she had already been through to get here and then THIS was going to take her? But she had a full recovery after about 6 weeks, Praise the Lord for that. I also had 4 young girls at home from 6-1 who desperately needed me and my attention but I just didn’t have anything left to give them. I was a wreck.
3. Do you know what caused your baby’s prematurity?
We developed TTTS officially at 22 weeks though there were signs at 18 weeks. We had the laser surgery at Denver Children’s at 23 weeks. We found out that Evangeline (recipient) had 6 liters of fluid and Noelle had zero and no visible bladder or kidneys on ultrasound. Noelle also had SIUGR with only 10% of the placental share. They actually cut her section of the placenta away because they were pretty sure she wouldn’t make it after surgery and we would lose her and they didn’t want her death to affect the placenta and then ultimately affect her sister. However she was a fighter and she pulled through and almost caught up with her sister by birth. Once I Was released from Denver Children’s and back home I was supposed to be on bed rest, but with it being flu season and my girls being sick for 2 weeks, no one was willing to come help with them (understandably because they all had young families as well) and due to over activity my water broke at 25&4. They hoped to keep the babies in until 32 weeks (obviously) but infection set in and within 48 hours it was noticeable and they had to be delivered.
4. How are you and your baby doing today?
Big picture- Fabulously! They are 19 months old, behind developmentally by about 9 months but we are working with therapy often to try to catch them up and no big issues. Noelle had Agenesis of the Corpus Callosum which means she is missing the nerve center between the left and right hemispheres that makes everything fire together and coordinate, so she just recently was able to wave or clap and things that require coordination just take longer for her but her brain and she will adapt. I still get emotional about things, but am doing much better this year than last. I believe I had PTSD for the first year or so. I felt like I never really “felt” anything strongly while they were in the NICU, always putting on a brave face. Then months later I would relive things and fell ALL of the strong emotions. It was kind of surreal in a way.
5. What advice would you give to a new Micro preemie mom?
Find the balance between trusting yourself and trusting your Drs and Nurses. Know what they are talking about every time that they talk to you. Ask ALL of the questions you possibly can. Do research! If they tell you something, write it down and try to remember it. Not in a burdensome way, but because that is YOUR baby and YOU should get to know everything about them and something you remember or have written down can change their care plan in the future. There isn’t always great communication between shifts and nurses and Doctors but if YOU can fill in the gaps, it really, really helps I think. ASK FOR HELP!! With anything and everything! Babysitting if you have older children, feeding your family, feeding you, cleaning your house, taking you to the hospital if you don’t have a second car. Also, let the hospital know if you need help. We only had one vehicle and they gave me taxi vouchers for every single day! They paid my way there and back. People won’t know what to do or say or how to help. You have to ask for help! THIS is hard and you WILL need support and help, and it’s not over in a week. It will last MONTHS for most of us. Always call to check on your baby if you can’t be there and you feel the urge, even if you have already called twice that shift. Always remember that you are their parent and you get a say and you are not an inconvenience or just an extra body in the way. Always touch and hold and talk to and be present with your baby when you can. Always speak up if you think your baby needs something or if you feel they aren’t getting cared for in the absolute best way. Do NOT make big life decisions like splitting up with your partner etc. during this time. It’s just best to leave those things until you have a little more sanity back. Realize that even though your spouse may not be showing the same emotions that you are, are going through the EXACT same thing you are and give them grace.
Thank you so much Sophia for sharing your girls with us. In a few weeks, we will include the twins in our update post to see what they are up to today.
My friend’s daughter was born at only 25 weeks because of major complications. She is doing great now, but she is still teeny.
I’m glad to hear she’s doing good. The little ones are such fighters!
What a beautiful story! Those girls are beautiful and I love the pictures that really show what little miracles babies are. What a strong momma.
Thanks for sharing your story! I hope others with mp’s are helped by your advice. I had a 32 weeker, and it was hard having a 15 mth old at home going back and forth to NICU. It was only 3 weeks for us. You did that for months!! Great job momma!
Wow – what a story! Sorry you had to go through all that but your babies are such beautiful blessings! Thanks for sharing!
These little ones are so precious!
Cried my tears for the day. As a fellow TTTS mom it’s hard to see other stories sometimes, but having met these beautiful little survivors in person I couldn’t help but read and admire even more their incredible journey of strength and will. Your blog is beautiful and your efforts in raising awareness much appreciated. Wishing you Success! Love & Light -Shandara
Thank you so much for reading Shandara! I’m sorry you went through TTTS too. It’s such a horrible thing to experience.
wonderful post… it is always great to hear these miracle stories and really puts a “bad day” into perspective! xoxo
Wow! 104 days in NICU. I couldn’t even imagine that. They look so healthy and beautiful now!
Mikayla | A Seersucker State of Mind.
I personally do not have any experience with this. But I do feel for these little ones, and I wish them all the best.
I just <3 these babies!! The size of preemies just blows me away. I'm so glad these two are thriving.
What beautiful babies and such an inspiring story! Thanks for sharing this.
Wow how touching! I cNt imagine going through this! Those girls are so adorable! I just want to hug them! Way to go mommy for what you’ve done! You are amazing.
Sweet sweet girls. I’m so glad they pulled through and are doing so well today!
Oh thank you for sharing! Hits so close to home as one of my dearest friends had TTS twins one of who’s name is Evangeline! They just turned three and are doing so amazing!! Their story is on http://theandersonfamilystorybook.blogspot.com xo MK
Wow! That is an amazing coincidence. I will check out their story…thank you for sharing!
Wow, what a teary post this was. I believe in the power of prayer and these babies are just so precious. My niece had a preemie baby and in the end everything turned out well but we were terrified and felt hopeless in the beginning.
As always, I am touched by these stories, heartened by the beauty of these babies, and awed by the strength of these moms (and families!)
🙂 Thank you!
This is an inspiring story and those baby girls are truly beautiful!!
This was truly inspiring. I am so happy the babies are doing well and they are FIGHTERS and blessed beyond belief, true miracles. They are beautiful!
Awww how precious. Your story really moved me. Thank you for sharing it with us.
These babies were so tiny! I would be so scared to even hold them! Thank you for sharing this wonderful story with us. I can’t even image how terrified she must have been. What a strong mother!
They are such sweet babies. Glad to hear that they are doing well now. Thank you for sharing this inspiring story to us.
Thank you for reading!
I’m so happy to hear that these pretty girls are doing well now. I admire them for their will to live, they really are fighters.
Thank you for sharing this. It’s amazing how resilient babies can be and can fight the odds!
What beautiful little girls! I’m so glad they (and Sophia) are doing well, and I hope they continue to.
What a blessing that they made it through that difficult beginning! That’s great that they’re doing so much better now.
What precious babies! So glad they survived and are doing well! What amazes me is babies like this CAN survive and thrive, yet women continue to have abortions of babies at the same ages as premies! So horribly sad.
Yes, that makes me sad too.
Oh my goodness! I love your Micro Preemie Monday! Sophia, your girls are gorgeous. I am so glad they are doing well!
Awwwwwwww I love hearing success stories like this!!! I’m always seeing all over Facebook and the news all the super sad stories about babies born too soon! Glad your little ones are doing great now :):)
Wow, what a beautiful story!