Adam and I had been married just under three years when we found out we were expecting. 5.22.10 I took a pregnancy test and it was Positive! I can still remember sitting in the bathroom and shaking as I looked at the test. We were going to be parents! I ran downstairs and showed him the test, and asked “This means a positive, right?” He didn’t even know I was taking the test, so he just kind of looked at me and said, “I don’t know. Wait, what? What? Where’s the instructions? Did you just take a pregnancy test?!”
At week 9 we had our first ob/gyn appointment. TWINS! Suffice it to say we were stunned. I was set up with a Maternal Fetal Medicine (MFM) specialist for week 17 just as a standard appointment for someone pregnant with twins.
Adam was doing an Orthopedic rotation in Kansas City, MO during August so my dad said he would come down to Omaha for the appointment. Since it was kind of a “big deal,” I really wanted someone to go with me.
At the appointment with the MFM on 8.19.10, I was told our twins had Twin-Twin Transfusion Syndrome. Being that Adam was in medical school, he had told me right after our initial ob/gyn appointment- “well, as long as they don’t have the transfusion syndrome, we’ll be fine!” Well…. we weren’t. And they weren’t. Baby B (Sam) was the donor to Baby A (Jack). Sam was giving all of his nutrients to Jack. Sam was virtually getting nothing, and Jack was getting too much, putting a lot of strain on his heart.
Dr. Barsoom warned me not to Google TTTS. Of course, I did. And so did my family, Adam, and Adam’s family. The news was not good. Being diagnosed with TTTS this early in a pregnancy was not a good sign. My phone conversation with Adam was summed up with this: “Trish, we have to be prepared that Baby B probably won’t make it. And Baby A might not either.”
We had uphills and downhills. But I was determined, and I like to think my boys got their stubbornness and determination from me. I would not let them die. They were going to make it.
Fast forward to week 28- on 11.1.10 I had an appointment with MFM and Baby B (Sam) had a d-cell on the non-stress test. I was immediately admitted to the labor and delivery floor and told I would probably deliver that day. Luckily, I was given two doses of steroids and did not deliver until 11.4.10. My two miracles entered this world and have been fighting since.
Sam was born first at 12:23pm, 1lb, 10oz. Jack born (very) shortly after, also at 12:23 pm, at 2lb, 6oz.
Neither baby required oxygen and things were looking extremely good. However, on 11.9.10, Sam had to be transferred to Children’s Hospital due to a perforation in his small intestine. At that time, it was the single worst day of our lives. A surgery on our little baby, less than 2 pounds? My dad was still with us, and I can remember bawling into his arms as Adam left and went immediately to the hospital.
We were told Sam would almost certainly be intubated. No baby his size undergoing that type of surgery had not been intubated. Well, they hadn’t met Mr. Sam! He was not intubated, and didn’t even require oxygen.
On Thanksgiving, we had much to be thankful for. Our beautiful twin boys were extremely healthy, and it was just a matter of time until they came home.
Then, the Saturday after Thanksgiving, 11.27.10 7:00am, we got “the call.” We were told that Sam’s o2 sats had been dropping to the 30’s (normal is 95-100). They were putting him on “high-flow oxygen.” We got up right away, and as soon as we saw Sam, I knew. I knew he was sick. I knew something was wrong. I knew that our little boy was slipping away from us.
Sam needed to be intubated. After drawing labs, we found out he had Group B Strep with Sepsis (GBS), late onset. Extremely rare, and usually fatal. The next few days were touch and go. And on 12.1.10 at 3:00am we got an even more horrific call- the nurses believed Sam had had a seizure. We needed to give consent for a spinal tap.
That morning we went to the hospital extra early and met with the doctors. They believed Sam had acquired meningitis as well. The battle our small son faced had just become a war.
Against all odds, our stubborn little boy LIVED.
Due to the meningitis, Sam’s slightly enlarged ventricles developed into hydrocephalus. He had a VP shunt placed on 1.25.11- their due date. We had come full circle.
Both of our boys are now home and thriving. We are so thankful to their nurses and doctors, as well as all of our friends and family for the constant prayers and support.
SAM MICHAEL STIBBE
JACK WILLIAM STIBBE
11.09.10– drain placed in abdomen for his perforated bowel/small intestine
01.25.11–VP shunt placed
04.11.11–brain cyst drainage/removal + inguinal hernia removal
06.03.11– brain cyst drainage/removal; addition of v-shaped shunt into second ventricle
07.01.11– shunt malfunction; replace shunt, addition of second shunt
07.02.11– move around the shunts, add a larger one.
12 Comments Add yours
Wow what a story… I cried reading it. They were so tinny when they were born, but there was a lot of fight in them. It is very emotional, I am glad that they are looking very healthy and chunky now, they have come a long way. Those “angel’s kisses” on their face, my son had it too, on his eyelids, they went away after 4 months.
Thanks Jovana… They are such tough little guys!
Love your blog – love the tips!
Beautiful story and beautiful boys, you are so blessed!!
My Sammy and Jack started their lives in the NICU also. Scarey place. Keep up the good work.
They are simply adorable!!
Unbelievable! I am amazed and inspired by your positive attitude and the way your boys continued to fight despite the odds. Great blog. Thanks for sharing your story!
Not sure how I came across your website, but I am sure I will be following it! It looks like our family became frequent hospital vistors around the same time as yours. Our son Liam, at 8 months old, was diagnosised with cancer the week before Thanksgiving.
So happy to see them so big and thriving!!! I 27 week preemie twins as well b/g and we had a rough NICU course as well. They too are doing great!!!
Thank you for sharing your story…
Oh my, I cried! No shame in it! What a lovely story, I am thrilled they are both thriving, you must be so proud 🙂
What adorable little boys, you must be so proud of them.
I read your story with hope in my heart as my Daughter has just delivered her 1st baby, 14 weeks premature and also weighing 1lb 10zs. She is a feisty little girl, and so far in the past 5 days following her birth has been stable. We are blessed with the skills and dedication of the Doctors and Nurses who work in Neonatal units. We know there is a long road ahead but reading your post has given me more hope. God Bless. Jude, Wales.UK
Judith– please know your daughter is in my prayers!!
I appreciate your honesty, some people hide what a struggle this all is trying to be the “strong” mom everyone expects us to be.. Our stories are similar but of course different, and I won’t begin to say I understand your struggles or journey. I have my moments of anger, and frustration, moments of wondering what I did wrong for my family to be punished. Then you look at your family and realize how blessed you are, that despite all that, you have your family. People always ask “how do you do it” I always tell them, I don’t know any different, this is our normal, and what else would we do, they need us. (Your story just randomly popped into my news feed so I read about your family.) Thinking of you ♡