World Prematurity Day 2012
Today is World Prematurity Day (hope you are wearing purple!)
Our girls were born at 30 weeks and 5 days. To most people that seems really early. To someone who has has had a 24/26/28 weeker, anything beyond 30 weeks is where you hope to get.
But our girls were not normal 30 weekers. Kathryn had all kinds of issues and Tiny suffered from IUGR, (intra uterine growth restriction) so she was only the size of a 25 weeker. However, she was blessed to have the gestational development even if she was so small.
At 1lb10oz, Tiny was classified as a Micro Preemie. REALLY TINY. But she cried at birth, which was a sound we did not expect to hear. It was so muted and puny. But it was her, announcing that she was here to stay.
Interestingly, I always had a calmness about me with respect to Tiny. From the day we were diagnosed with TTTS until the day she came home from the NICU after 84 days, other than a few scares, I felt confident that she was going to survive.
She was strong, defeated her odds, and just kept keeping on.
But that doesn’t mean she didn’t have her own set of struggles.
Truthfully, if they had been born even a day or two earlier, there is a good chance she would not have survived.
I look back on some of these pictures now and they really scare me. At the time, having just suffered the loss of our other twin, (Kathryn died two days after birth from the havoc that the Twin to Twin Transfusion Syndrome wreaked on her little body,) we were fueled only by the words of great encouragement from the doctors and nurses. They continued to tell us that despite Tiny’s size, she was really strong and doing well.
A prolonged stay in the NICU is so terribly difficult.
Every time the phone rang when I was not there, I worried it was bad news. For 12 long weeks we watched and waited for her to grow and develop.
Constantly worried that there would be a set back or a new diagnosis.
Wondering why she just could not learn to drink from her bottle.
Scared to death that something was wrong with her… something had been overlooked.
My hands cracked and bled from the constant washing, scrubbing in each time I came into the NICU.
More babies arrived daily, and we gradually progressed through the rooms as Tiny grew and stabilized.
I watched other sets of twins come and go, and hurt deeply as I saw two carseats and two babies being wheeled out in the double crib that we would never use.
We watched as all of our “friends” on this journey were sent home, one by one, while we stayed.
And finally our day came when she was ready to go home. 84 days later.
Finally life began to become a little more normal. And our baby gets stronger by the day.
Tiny is an amazing baby. And we are blessed.
We are so grateful for the advances that have been made with respect to caring for the teeniest of the teeny. Days like today, we talk about prematurity and share our stories to help create awareness and encourage support of the organizations that continue to push for more research and advances (like the March of Dimes).
During her time in the NICU, our Tiny benefited from key advances such as:
- Steroids and lung surfactant to help her lungs develop (before birth)
- Medications to help prevent brain bleeds (administered before birth)
- Better incubators and oxygen systems
- Machines to monitor heart rate and bradycardias
- Feeding procedures that decrease the chances for NEC and bowel abruptions (to include a focus on receiving breast milk because of the studies that have shown how much gentler it is on Micro Preemie stomachs, intestines, and bowls)
- Caffeine treatments and other drugs that help stimulate the brain when it is trying to learn to do things the mothers body should still be doing for the baby (like breathing!)
- PICC line to reduce wearing out veins and infections from IVs
- Skin to skin and kangaroo time
- Blood transfusions for severe anemia and other issues
- Feeding therapies
- Pediatric surgery
And so much more.
katbiggie
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PENNY GIELEN says
November 17, 2012 at 9:17 pmShe is beautiful!! You are truly blessed!! I HATE TTTS!!!!!
Kat Biggie says
November 18, 2012 at 10:39 pmThanks Penny! ME TOO!!
Leigh Ann says
November 17, 2012 at 10:23 pmShe’s precious. I’m so sorry for your loss, but thankful for the hard work of the March of Dimes and our NICUs so that Tiny survived.
Kat Biggie says
November 18, 2012 at 10:40 pmAgreed!!! Thank you for your kind words!
Natalie - Mommy of a Monster says
November 18, 2012 at 6:36 pmI’m so sorry for your loss. Thank you for sharing your story – it sounds like you are so blessed with your beautiful little girl! I can’t imagine having to deal with NICU…it must be so scary and stressful. Thank you for linking up and sharing your story!
Kat Biggie says
November 18, 2012 at 10:40 pmThank you for coming to read it! Yes, the NICU time stunk, but we got a good prize at the end of it! And yes, we are absolutely blessed!
Marianne says
November 19, 2012 at 12:32 amOh my gosh. I’m stunned. Just stunned. I don’t know how any mother could’ve shown such strength, but I am in awe of you and your journey. I am so sorry for the loss of beautiful Kathryn, but so glad for the joys of Tiny. What a remarkable post.
Kat Biggie says
November 19, 2012 at 11:03 pmThank you so much Marianne. We are so blessed with our children, and Kathryn, in her two days of life, has already touched more people than most of us ever will! 🙂
Kathy at kissing the frog says
November 19, 2012 at 2:41 amYour pictures are remarkable. I cannot imagine how little they were in person. I love Tiny’s Christmas bow! I’m so sorry that you didn’t get to bring both of your babies home, but thank you for sharing your story. You are doing good things. (hugs)
Kat Biggie says
November 19, 2012 at 11:03 pmThank you Kathy! Our nurse made her that bow. She liked to make her look pretty! 🙂 Thank you for the kind words!
OneMommy says
November 19, 2012 at 3:45 pmI have tears rolling down my cheeks right now.
Such amazing pictures and story… Words can not express how sorry I am you were unable to take your other angel home, but what a precious miracle your tiny one is!
Thank you for stopping in for my SITS day!
Kat Biggie says
November 19, 2012 at 11:04 pmAnd thank you for coming back, and for your sweet words. I look forward to the day when I will reunite with my Kathryn, but I’m so blessed to have a healthy baby in my arms! TTTS often takes both babies, so I never take for granted the miracle that we have!
Jessica says
November 19, 2012 at 4:04 pmShe is so amazingly small. I don’t think I have ever seen someone tinier than my son was until now. What a survivor. Our kids are such miracles aren’t they. I just wish we never had to learn this after such loss.
Kat Biggie says
November 19, 2012 at 11:06 pmThey absolutely are the most amazing of miracles! I know, I agree… it would be nice if we were ignorant to all of these things, but I like to think that their purpose was to bring us to our full potential. I’m sure Hadley is showing Kathryn the ropes in Heaven! 🙂
Nicole Shaw says
November 20, 2012 at 12:30 amShe is beautiful an inspiring, as are you.
Kat Biggie says
November 20, 2012 at 9:23 amThank you very much Nicole! That made me smile!
Kat Biggie says
November 20, 2012 at 1:18 pmRobin left this comment the other day, but for some reason, sometimes the blogger comment form overwrites the Intense Debate, and those comments disappear…
“I was actually just thinking about Tiny this morning and how, for some reason, I always knew she would make it. I just knew she was determined and strong and would persevere. And, boy, has she!!! It is scary to look at the pictures of those early days. It was pretty darn scary then, too, but the nurses were so encouraging.”
Thanks Robin!