Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Lilypie Second Birthday tickers

Lilypie Second Birthday tickers

Tuesday, December 8, 2009

The Triplets Story

I recently realized that many of the readers of this blog may not know my trios birth story/NICU stay experience because I didn’t start blogging until all three were home from the hospital. When they were in the NICU I was sending out almost daily mass e-mails to our friends and family updating them on the trios status and requesting many, many prayers. So I think it’s time to provide a brief overview of their story…

It was Valentine’s Day 2007 when I took the pregnancy that changed our lives forever, we were finally pregnant!! We found out in week 7 that we would be having triplets! We were excited, scared, shocked all at once. The doctors wanted to discuss fetus elimination but that was not an option for us – God gave us three babies and He would see us thru the pregnancy in whatever way He intended. I was having a fairly good pregnancy, needed to take phenergan to control the morning sickness to gain weight, was on partial bed rest at week 16, and needed to take indocin to stop contractions but other than that I was fairing quite well up until week 21/22 when my cervix started shortening. I ended up in and out of the hospital a few times and did get an emergent cerclage placed at 23 weeks. Thru this there were multiple discussions with the doctors of our choices – would we choose to delivery all three if one started showing distress or would we let that one pass to try to keep the others in longer? We knew we would deliver all three at one time as they were all given to us at one time. The cerclage worked great and up until my ultrasound at week 25 things were looking good. At that ultrasound it showed Mady not growing as well and having reversal bloodflow. I was hospitalized on a Thursday, given the steroid shots for lung development, then on Sunday morning Annabel’s water broke and they had to take me off the indocin. My ultrasound on Monday showed that Mady had corrected her bloodflow but on Tuesday morning (7/17/2007) my contractions started coming stronger and stronger and it was decided it would be delivery day, which was just 26 weeks. It was such a weird day emotionally – scared, excited, nervous, sad, happy, all at once! That day all of my favorite doctors were on so I was surprised with the calming feeling I had. Between that and the date – so many 7’s, I felt that God was truly right there with us, watching over myself and the babies. I prayed that once they were taken from me that he would take their hands and lead them on, assisting them in fighting for their lives. I am so thankful for all he has done for my precious babies!

Below is a brief description of what each of the babies faced while in the NICU and where they are today:
Annabel Louisa – Baby A, born at 10:16 a.m. weighing 1lb 12ozs.
- Day 5 discovered Grade IV/Grade III brain bleeds – doctors didn’t want us to continue care, predicted no quality of life
- Required ventilator for 3 weeks before transitioning to CPAP and then to cannula to no support. Has asthma.
- ROP but did not need surgery – has strabismus requiring patching and wears glasses for far-sighted
- Fought 1 or 2 mild infections, requiring some blood pressure meds and antibiotics
- Would have been home prior to my due date but had to stay to gain weight to have her shunt placed (she has had one revision since the initial placement, January 2009)
- Overall had the best NICU course
- Came home on day of life 100
- Has mild hemiplegic Cerebral Palsy, left-side – developmentally delayed but the belief remains that she will walk someday. She is currently sitting up on her own, getting herself into a tall kneel to play, and recently is pulling halfway up to stand. She wears orthotics to provide extra support when walking in her walker and standing. She is quite delayed in speech but is making sounds and using those sounds to express herself, belief is that she will have speech someday as well.
- Annabel receives OT (2x’s/week), PT (2x’s/week), Speech (2x’s/week), Aqua therapy, and Hippotherapy.

Madelyn Marie – Baby B, born at 10:18 a.m. weighing 1lb 8ozs.
- Day 5 discovered Grade III bilateral brain bleeds - doctors didn’t want us to continue care, predicted no quality of life, her bleeds resolved
- Required ventilator for almost 2 months before moving to CPAP and then cannula to no support. Has asthma.
- Required PDA ligation which we believe she never recovered fully from, leading to numerous infections requiring blood pressure meds and antibiotics, in which she almost didn’t make it (last infection was when she was 2 months old – she was fighting it ok and ended up taking a nose-dive, we really didn’t think she was going to pull thru this one)
- Had a NEC scare, her belly was very distended and one point had a drain put in which provided an unexpected result of no drainage. She thankfully never did perforate but did end up with a hernia at the tube incision that required surgery. She almost came home with an ng-tube but thankfully did not need one in the end.
- ROP requiring laser surgery in both eyes, wears glasses for astigmatism and far-sighted
- Came home on day of life 140
- Is still slightly delayed developmentally delayed (mostly in gross motor) but is closing the gap rather quickly! She is walking up stairs on her own with assistance of the railing and walking down using the railing and our hand, jumping, and running. She wears orthotics to provide extra support.
- Madelyn receives PT (2x’s/week).

Johnathan Robert – Baby C, born at 10:19 a.m. weighing 1lb 15ozs.
- Day 5 discovered Grade II-III/Grade I brain bleeds – doctors were more optimistic for his future, his bleeds resolved
- Required PDA ligation which we believe he never recovered fully from, leading to numerous infections requiring blood pressure meds and antibiotics, in which he almost didn’t make it multiple times (his last resort at one point was this drug brought in from Canada, 5FC and thankfully his little body decided to fight it. At one point Johnathan was so swollen from being septic that he weighed 4lbs when he should have only weighed 2lbs.
- ROP requiring laser surgery in both eyes, had to be transported to Beaumont for victrectomies in both eyes to prevent retina detachment (successful) and was discharged to home from there. Johnathan wears glasses for near-sighted and has a script of -14.xx in both eyes.
- Required ventilator support for almost 3 months before finally going to CPAP and cannula to nothing just before coming home. Due to the oxygen requirements he has BPD and asthma but is slowly improving.
- Also due to his oxygen requirements and medicines to fight his infections he has mild to moderate hearing loss in his right ear and moderate to severe loss in his left ear. He wears bilateral hearing aids and he was quite delayed in speech for awhile but he’s taken off recently and in November was evaluated at being between 24-36 months – completely normal!!
- Came home on day of life 108
- He is also a little unstable in gross motor skills and wears orthotics for support and to shape his feet properly but overall he is catching up nicely as well! He is also running, climbing stairs (mostly crawling up), and doing small jumps.
- Johnathan receives PT(2x’s/week), OT(2x’s/week), and Speech (2x’s/week).

So as you can see they truly are our little miracles. They have each come much farther in 2 ½ years than any doctor would have ever predicted. If anyone ever has any questions please feel free to contact me – I truly believe that sharing our experiences helps each other thru immensely.

Jamie

5 comments:

Nichelle said...

Oh my Gosh Jamie I had no idea! You are truly a inspiration to other moms in that situation, by the grace of God you did not give up and either did they:-) Just by knowing/reading about them they have come a LONG way. I know in my heart they will continue to be the best they can be:-)
Great job Jamie!!

Andrea Cominini said...

please answer me back on my comments of your halloween post... Thank You

Andrea Cominini

Jamie said...

I just found your blog and find it all too similiar to read about! I had triplets on 7/30/07, just about 2 weeks younger than yours. One of my sons did not make it so I have two survivors. They had similiar NICU stories. Besides bad lungs and a perforated bowel, my son did pretty well and came home at 100 days. My daughter had her PDA ligated, a resevoir and shunt from a Grade III/IV brain bleeds, and 5 eye surgeries (two vitrectomies to reattach her retinas). She also has severe hearing loss so wears hearing aides (and glasses). Very simliar to your kiddos!

And on top of our kids being similiar, my name is Jamie too!

I was wondering where you have found shoes to fit over your girls braces. Lindy wears mostly little white tennis shoes but I can't find many cute girly shoes to fit over her DAFO's.

I've enjoyed finding your blog and reading through it! Your kids are adorable!

Christina K said...

Your story is amazing and I'm so glad you re-shared it.

I'm honored to know you and your family.

Krista said...

Thanks for sharing. What an inspirational story of never giving up hope.