World Prematurity Day

Today, November 17 is World Prematurity Day.  This year marks the second annual day of awareness worldwide.  This article is a decent place to start for raising awareness.  Over 15 million babies a year are born before 37 weeks.  The most shocking statistic for me though was that "along with stillbirths, prematurity claims the lives of about 4 million babies each year and is the leading cause of death in the newborn period."  

Gabriella and Benjamin were considered late term preemies at 34 weeks.  I realize that the differences between 24 or 25 week old preemies and my preemies are indescribable.  However, without serious medical intervention in the NICU at Christ Hospital for two full weeks for my sweet baby girl and for exactly one month for my brave little boy, I would not have them at home with me today.  I know this.  They absolutely would not have survived.  If not for the grace of God and the knowledge and skill of our medical team, our story would have ended in tragedy.

Gabriella Margaret - shortly after birth

my tiny Gabriella was such a trooper 

my first time feeding her, just 5 ml of breast milk was such a challenge for her

we were so blessed to be able to hold Gabriella about 10 hours after birth
Benjamin is in the incubator in the background, directly across from his sister

Benjamin Ryan - shortly after birth

my sweet Benjamin had to be stronger than any little baby should have to be

after 11 very long days, I finally got to hold my baby Benjamin in my arms, still intubated

physical therapy

Because he spent so much time in the NICU, every three months Benjamin goes back for a neonatal follow up.  We elect to have a physical therapist and a speech/language therapist come in and spend some time with the big guy at these appointments.  Back in October there were some slight concerns about overall core and trunk strength.  They gave us the phone number for Early Intervention and a handout with some exercises to do at home, no biggie.  We waited a bit to call EI, wanting to give Benjamin some time to see how things worked out.
In December he was evaluated, but did not meet any criteria for services - which was a good thing because there has to be a 30% or more delay to qualify.  So we were very happy about that, but at the same time if he needed support we wanted to be proactive and get it sooner than later.
In January (at his 6 month neo appointment), pretty much the same concerned were brought up, and we explained that he did not qualify the month prior.
In the beginning of May at his 9 month appointment, Benjamin was still not sitting up unsupported and when he crawled it was more of an army crawl or he'd roll where he wanted to go.  So we made the decision to have EI come back and re-evaluate him.  This time around he qualified for physical therapy for his core and trunk muscles.  Babies on oxygen for an extended period of time often have low muscle tone, no biggie.  By the time services started (about 3-4 weeks later), he was sitting up and crawling!  We're still going ahead with therapy every week right now.  He is doing a fantastic job!  He'll be flaunting his six pack by the end of summer.  =)  Benjamin not only closed the gap between him and Gabriella, but he even passed her up for a week by pulling to a full standing position on toys and chairs before she did!!!
While everyone continues to adjust his age for prematurity, I really feel like in addition to the 6 weeks he came early, he lost another 4 weeks in the NICU.  He was intubated for a total of 17 days and very heavily sedated for quite a while.  Find me somebody who thinks that he didn't "lose" those weeks developmentally when he wasn't eating or moving or being held or ANYTHING, and I'll crack 'em upside their head.  For real.
All babies are different, but I just feel like a lot of people are super aware of what Benjamin is and isn't doing.  And it makes it hard when Gabriella (or other babies) hit *milestones* at a certain time and he doesn't.  Who the heck cares if he crawls at 8 months or 11 months?  Or if he bangs two objects together.  Or waves bye-bye (which my princess doesn't even do yet).  Honest to goodness, give the kid a break.  Things will happen in their own time.  Benjamin is seriously THE happiest baby in the whole wide world.  And after a rough start (going back to his placenta starting to detach just weeks into my pregnancy, dealing with pneumonia/an open pda/ a heart murmur/ extremely underdeveloped lungs/etc, and riding with lights and sirens when he desatted at home) he's here and doing just beautifully!  I couldn't ask for anything more from my little man!!!

one year ago today - 33 weeks

I have this habit of viewing time in relative terms, which if fun when you're anticipating something but can be a downer when you're looking back.  Like vacations - my mind works like this *one week from today we'll be going on rides at the Magic Kingdom* OR *this time last week we were watching the sunset in Maui* (for example).
I've got a few posts to catch up on: we got our Saint Bernard puppy back in May; Benjamin qualified for physical therapy services through Early Intervention; party planning for the big birthday bash.  But in the meantime, here's what's on my heart right now...
One year ago today I was 33 weeks pregnant and sent to the hospital because of my blood pressure.  I remember the details of that night so vividly.  It seems like it just happened, but at the same time it feels like Gabriella and Benjamin have been with us forever.  My ob instructed me not to eat and head straight for Christ Hospital, just in case they had to pull the babies.  I remember that the babies kept falling off of the monitors all.night.long no matter which way I slept.  I remember in the morning how my heart raced and my bp sky-rocketed when the mean maternal fetal medicine doc that I had during the first week I was in entered my room to go over things with me.  He was just as mean this time around.  Looking back, I wish I would have filed a complaint.  Or demanded a different doctor.  Or something.  But I guess the bottom line is, he was part of the team that kept me and my babies safe, so for that I am grateful.
I have been playing back *one year ago today* all day and I continue to be just flooded with emotions.  I cry a lot.  I look at my sweet babies and just thank God for them.  I still feel pangs sadness for everything that my babies went through in the NICU, especially Benjamin.  I still feel like I was robbed of part of the picture perfect scenes that all mommas-to-be envision, water breaking, holding a newborn, rooming in, beaming as I held my newborns when we were discharged days later.  That just wash't our story.  I accept that.  I am grateful that we have our own happy story to share even if it wasn't a typical, run of the mill type of event.
One year ago today I was scared silly that my babies were going to be born too soon.  I was terrified of having a stroke or seizures.  But I was also blessed to be pregnant with two healthy babies.  I was happy to just take it day by day and keep them in as long as it was safe for all three of us.  I was excited to meet my snuggle bugs very soon.
 I was thankful for everything God had given me; and some things will never change.

baby updates

We took Gabriella to the dermatologist this afternoon.  As soon as we unwrapped her bandaged nuggin' the doctor said that there was no need for the laser.  Beyond excited!!!  Her ulceration has been healing beautifully and the hemangioma has also made positive changes.  We were in and out in about twenty minutes. 

News on the Benjamin front- I called Early Intervention and did his background information yesterday.  A developmental therapist, physical therapist, and his case manager will be out next Tuesday to evaluate his development.  Our concerns are with his neck, core, and trunk muscles.  In order to qualify for services, he would have to have a 30% (or greater) delay.  I cried.  I want him to get any and all help that he needs, but shit.  30%  is a lot of percent.  The case manager understood my fear and basically broke it down like this: Although he's 5 months old, we use adjusted age up until he's two for all milestones.  So they'll be looking at him as if her were 3.5 months old.  If there is a delay, we'd rather close the gap sooner than later. 

Just for conversation's sake, let's imagine a 50% delay.  It's less catching up to do for a "3.5" month old to be only reaching milestones like an almost 2 month old than it would be for a 2 year old to be developmentally at a 1 year old level.  Huh... that made me feel better, but I still just want my baby to be ok.  Ultimately it's not about me or my feelings though; it's whatever's best for my little man.

rewind: the happiest day of my life

I have so much to write about, but before I can talk about what's happening presently I first have to get caught up a bit.  So here goes - a recollection of the single happiest day of my life... 

Ok, step into my time machine, and let's all travel back to Tuesday, June 28.  I was 33 weeks pregnant and here's what I was looking like just prior to my weekly ob appointment:

33 week tummy shot

My blood pressure was high, but if you remember that's why I was hospitalized for a week in early June.  We were on bought time and hoping to keep the babies inside until 32 weeks, which we accomplished.  Since my bp was elevated and didn't come down when I laid on the exam room table for a bit, I was sent (with Jamie of course) back to Christ Hospital "to be monitored".  We had everything we needed in my bags.  We made our phone calls and I kissed Greta bye, knowing I wouldn't come home until the babies arrived.  I was instructed not to eat anything in case we had to do an emergency c-section. 

I was admitted and the babies were kept on monitors 24/7.  They were still looking fabulous, but I was dancing around with many borderline levels associated with pre-eclampsia.  We were taking it day by day.  I pleaded my case to my obs to keep the babies in as long as possible, as long as it was safe for them and for me.  On Friday, July 1, my ob planned the section for Tuesday, July 5, unless something happened sooner that required immediate action.  This put my babies at exactly 34 weeks gestation.  I was happy with this!

I was first on the docket for surgery July 5.  We jam.packed. the waiting room!  My mom, dad, Nick, Brooke, Jamie's mom and dad, brother, 2 sisters, my aunt, and my grandpa were all there.  My babies were going to be welcomed into this world with love beyond measure.  Here we are about an hour before my babies entered the world:

34 week tummy shot
about 1 hour before my babies made their grand entrance

Jamie was almost as nervous as I was, but beaming in his shirt!
about an hour before he met his playmates

Jamie put scrubs on over his new dad shirt.  I walked to the OR with my nurse and was given a numbing shot in my back, then a spinal.  It was so overwhelming.  There were so many people standing by- including 2 NICU teams, one for each baby.  My bp was off the charts, but my wonderful ob told everyone to ignore it.  He knows me well enough to know what was normal and how I respond to stress. I laid on the table and they put up a blue sheet so I couldn't see anything from my chest down.  Once I was numb, Dr. Flosi started working his magic; when things got going, they brought in Jamie.  I can't tell you how incredible my ob is... since we were going to be surprised, he let Jamie peek over the curtain to see the babies as they were born and *announce* if they were boys or girls!  I felt pressure and tugging and pulling, but no real pain.  Then Dr. Flosi told Jamie to have a look.  We were both already crying, but he stood up, took a quick peek, sat back down by me and said "It's a girl!"  A nurse announced her birth time of 8:34 am, and Flosi kept working.  More tugging, a bit harder pulling and pressure this time, Jamie was given the go ahead to peek, and when he sat back down, crying and smiling he told me "It's a boy!"  The nurse announce 8:35 am as his time of birth.  To my right I could see loads of people hustling about taking care of my daughter and my son.  I cried. 

Gabriella Margaret weighed 4 pounds 4 ounces and was 17 inches long.  She was actually my very active baby B, but was positioned transverse and therefore the first actual baby out.  Benjamin Ryan weighed 5 pounds 7 ounces and was 18.5 inches long.  My quiet, calm baby A, already a gentleman to let his sister go first. 

Gabriella's nurse brought her over for me to see and give kisses to before she was whisked away to the NICU.  She was beautiful and perfect and peaceful. 

Gabriella Margaret

Benjamin's nurse followed closely behind with him.  I kissed his sweet little face, too, before he left for the NICU.  He was just as perfect and oh, so handsome. 

Benjamin Ryan

They finished up on me, Jamie went to tell the fan club who the newest members of our family were, and I was off to recovery.  Jamie, one by one, scrubbed in with each of our family members so they could meet Gabriella and Benjamin.  After about an hour in recovery, on my way to my actual room, my bed was wheeled in to the NICU.  The babies were directly across from each other.  Later that night I got to go back in my wheelchair and visit.  It was then that I got to hold Gabriella for the first time.  I had to wait 11 days before I could hold my Benjamin, but we were able to hold his hands and touch him (most of the time). 

We are beyond blessed with two amazing babies.  My sweet little angels that I cried and prayed and begged for for years were finally here.  It was a long road to get them, and the journey has continued with unexpected twists and turns so far.  Some days it seems like they were just born- I remember every detail so clearly.  But other days, it seems like they have been part of our lives for so long- they just fit right in and complete our family so perfectly.

Gabriella was in the NICU for 14 days.  She had low billirubin levels and was on the phototherapy lights for much of the time.  She also had feeding issues- suck, swallow, breathe is a tough concept!  She was discharged on July 19th. 

Benjamin was in the NICU for 31 days; exactly 1 month.  We were ABO bloodtype incompatible and his red count was low, so he needed more plateletts the day after birth.  Breathing was very hard for him.  He was on CPAP, but needed to be intubated and put on a ventilator.  He was intubated for 11 days, came off for almost a day, but then was re-intubated for 6 more.  Apparently premature white boys have the worst time when it comes to respiratory issues.  In addition to preemie lungs, he had pneumonia, pulmonary hypertension, an open PDA valve, and a slight heart murmur (from open PDA).  He was discharged on August 5th and came home with oxygen and an apnea monitor, which we still have. 

On August 5th, Gabriella came with to the hospital to bring Benjamin home.  We needed two cars because I had to sit in the backseat with Benjamin, and let's face it...in a four door car with two rear facing car seats, this girl could not sit in the middle of them (I'd like to meet the person that could, by the way).  My dad, Benjamin, and I were in one car.  My mom, Gabriella, and Jamie were in another car.  Both babies had their beautiful newborn photos taken that day at the hospital.  We were able to take Benjamin's oxygen off very briefly for the photos.

I'm a mommy!

Gabriella Margaret and Benjamin Ryan were born at 34 weeks, via c section on July 5!  Yup, a perfect little girl and boy, born one minute apart.  They are amazing and instantly became my whole world.  I was hospitalized at my 33 week ob appointment, but we bought an extra week of development before my angels joined our family. 
I have so much to write about, but if I'm being honest, it'll probably never get blogged about.  Gabriella spent 14 days in the nicu, an Benjamin is still there (26 days today).  He was supposed to be discharged today, but he started desatting (again) so we'll see what tomorrow holds.