Wednesday, January 23, 2013

A Rare Story of Monoamniotic Twin Boys

Your response to Nathan's story has been tremendous and so I thought I would continue to share with you the stories of the other miracle babies we participate with March of Dimes to honor.  My amazing friend Amanda, my friend since high school, has written her unique story - one of monoamniotic twin boys.  In this rare occurrance in about 1% of all twins, the babies share a single amniotic sac and a single placenta.  This situation was also rare in that nearly 75% of monoamniotic twins are girls.  These boys are fighters like all NICU babies and their adorable grins are sure to make you smile.  They join us on our walk each year and their big sister even fundraises in their honor.

Our goal with these stories is to not only raise funds for March of Dimes through our family team (you can donate here) but to reach out to other NICU families who might be struggling or searching for answers and support.

9 weeks and 6 days early... OMG we made it to less than 10 weeks, this is my thought as I am calling my husband from the hospital as they are prepping myself and our twins for an emergency c-section. 
Let me start from the beginning.
At 7 weeks pregnant we not only find out I was pregnant but guess what you are having twins… Oh…then a few days later we were told not only are they twins but they are monoamniotic and there is the possibility that they will have to be delivered at any time between 24 and 32 weeks, due to this rare high risk complication. Being an RN this brought a huge lump in my throat and scared me to death.

At 12 weeks I had complications with bleeding and I was put on bed rest for the rest of the pregnancy, oh great this will be interesting with a husband that doesn’t cook and 2 other kids under age 9 at home. At 20 weeks I get to go to the Dr. every other day for stress tests and ultrasounds, to begin monitoring for any signs of stress. We are told that at the first sign of stress, the boys will be delivered that day. During the ultrasounds they look at growth, umbilical blood flow, heart rate, movement, etc.

We make it to Christmas and start with pre-term labor...they stop it. The boys are doing fine there is no stress, or danger so they send me home… made it a week and my water breaks, so I am back at the hospital they get the labor stopped and the plan then is to keep me there and pregnant for 2 more weeks. They wanted to give the boys that extra time, at this point I have already had all 3 steroid injections to help their tiny lungs develop faster.

My body was only able to give them 3 more days. At 857 (Eli) and 859 (Kai) were born weighing 3lbs 6 oz and 2 lbs 14 oz. Kai’s head was literally the size of a baseball. Now after having 7lb 12 oz + sized babies before I was shocked, scared, nervous, scared, and so on. Fortunately, they didn’t have to be on a respirator, only CPAP and oxygen for a few days in addition to tube feedings for what seemed like forever.

They had severe problems with GERD which would cause heart rates to drop to almost nothing and their breathing to slow way down, (brady-apnic event) this problem caused them to stay at the hospital for 7.5 and 9 weeks. They even went home on medication (caffeine) and other meds to keep them stimulated and Heart monitors that they had to wear while sleeping. The first time I heard it go off in the middle of the night, I fell out of bed, it was the loudest most obnoxious noise I have ever heard. Honestly compared to what I have since experienced their problems were and are to this day minimal.

There were so many great nurses, they taught us how in the first days that they cannot be held only gentle touch and soft quite noises so as not to over stimulate them. I have never read so many children’s books in my life. 

The day I went home (day 4) was the first time I could hold one of them, but only Kai, Eli wasn’t up to it yet. Leaving them there and going home without them was devastating. I lived at the hospital it felt like; leaving my house as soon as the older 2 were on the bus and came home in time for them to get off of it and my husband would spend the evenings with them.

The first weeks I was home was so difficult, post c-section I wasn’t allowed to drive and arranging rides when you live 40 minutes from the hospital, well there were not many volunteers (sure I could have stayed at the Ronald McDonald house but what about my other kids?) I called twice a night when I would get up in the middle of the night to pump for them, to check on them. Every night I got new weight information, diaper counts, or any other milestone information, and almost always I would hear the words so and so had another event. Once they hit all the discharge milestones they had to go 5 days without one of the darned events (I don’t know how many times we made it to day 4 with Kai and he would have to start over). 

Time dragged on forever, I have to admit I cheated and started driving myself way earlier than I was supposed to, I had to be there. My favorite times were the quite kangaroo cuddling (I wish they still liked to cuddle like that), changing diapers, and bathing them (It made me just slightly useful in their care) we attempted breastfeeding, however that didn’t go well they took it as a cue to take a nap no matter what we tried. I pumped for them for 9 months, not what I had hoped for, but acceptable. There were sad times and joyous times in the NICU some related to your own child and some related to the other families that you bond with during your time there. 
One of the best days was when I got to the boys bedside and there were no tubes, no ivs, no feeding tubes, no oxygen and they had the tiniest little clothes on (preemie clothes were even too big). The nurses and I had a party on the day they both finally hit 4 lbs, they could move out of the incubator into the little bassinets (of course they had to prove that they could be big boys and handle it and meet all the requirements to be able to stay out of it). The hardest day was February 18th when we brought Eli home and had to leave Kai. I cannot tell you how horrible that feeling was (even worse than on the day I was able to go home without them), the only thing that made it easier was knowing that the staff would call me the instant something was wrong, and one of our room friends had both of her babies there and she said she would also keep an eye on him for me. 
The staff in the Neonatal intensive care unit were amazing, from the nurses, to the doctors, patient care techs, unit clerks, Lactation consultant, department manager, you get to know them all. No matter how much time passes many of them continue to remember you and your child/children, we have been to NICU reunions, I see several of the staff at the March of dimes March, and I work in the same hospital now and see them from time to time, they have become an extended family of sorts. 

March 1st we got to leave the NICU with both boys (they put the Kai in his own private room so that we could bring Eli with us when we visited.) What a huge adjustment! My husband and I both got up for feedings every 3 hours, we had to hold them upright for 30 minutes after feedings (it really did help with preventing it all from coming back out), I have never seen babies that regurged so much. Thank goodness by this time I was pumping so much out that my husband was teasing me about having the milk truck back up to the house instead of the milking barn. That was one great thing about the NICU they came home on a regular feeding schedule! It took everyone a while to adjust, our daughter was in her glory babies everywhere to hold and snuggle. The three of them have a very special bond (although they currently call her the stinky polly bear..yeah not sure on that one). In July of that year they both ended up with Pneumonia, and in the Pediatric intensive care unit for about a month, another great team of doctors and nurses, and only one more hospitalization for Eli since then for RSV. We have frequent appointments with Pediatric Pulmonologists and Pediatric Gastroenterologists, and Eli gets to see a Pediatric Ophthalmologist, fortunately overall they are typical healthy tiny little guys, with minor medical issues.

The boys turned 3 last week, weigh about 26 lbs, wear 2T clothing, are potty trained, have the attitude of my 12 yr old daughter, have been suspended from daycare for a week once for biting (that was a fun 3 month period of time-everyone sported bite marks), and they test my patience to no end, but I am blessed with their miracle. Without much of the research that comes from the March of Dimes, I truly don’t know if they would have had the same outlook and future that they have today.


nandeboleine said...

What an amazing article! I would love to talk with Amanda sometime...I had monoamniotic chiral girls who were also about nine weeks early. We had a very similar story, except that we didn't know that we were having twins until five months along! The photos of your boys remind me so much of my girls, who are now thirteen years old, healthy and smart as can be, and are about five foot seven!! Keep up the good work and would love to get in touch!

Anonymous said...

I am currently 25 weeks pregnant with Momo twin boys. I would love to talk with the Mom in this case.