By Jessica, Seattle, Wa Usa
PROM at 20 weeks + 2 days. Delivery at 25 weeks + 2 days.
Story added: 2011-04-14
Our Story is truly a miracle and if you are on bed rest with the numbers against you and your baby, weighted down with all the stress of not knowing what will happen next, surrounded by Doctors and nurses who can't provide you with any hope, read our story.
A good outcome can happen to your family, we hope and pray that your outcome is half as happy as ours and that you have your own little miracle.
Every day we read every one of these PROM green stories as they applied to where we were and clung to the similarities to our circumstances as we counted the days and hoped, prayed and waited.
Below is an email we sent to our friends and families a month or so after Holden's birth. After keeping my water breaking, the strict bed rest and hospitalization a virtual secret - we were too afraid to share what was going on because we were too afraid of the outcome and didnt want people calling to check in in case it wasn't a good plus we just wanted to focus on us and taking care of our baby. We spent 138 days in the NICU and had many obstacles to overcome. Nobody told us until we left what they were really thinking along our journey, that Holden didn't really have a chance. They told us as we left in a most apologetic way-- how could they doubt our little superstar!
Today Holden is 10 months old (6.5 months corrected age) and is doing great, weighing in at over 16 lbs and 27.5 inches long (he started at just over 1.5 lbs 13 inches!!). He is developmentally within in the band of normal for misadjusted age and seems to be intact, showing no signs of morbidity. It is a miracle, but what is important to know is that he is where he is and he has buddies from his time in the NICU that are doing just as well from similar starting places. As a matter of fact, we saw a vast majority of the NICU babies beat the odds!
July 31st EMAIL >>>>>>
Well, first off my apologies to those of you that I’ve gone radio silent on and sorry for the lengthy distribution list. Just wanted to get the facts out there so nobody feels uncomfortable discussing our little champ.
It’s been a treacherous few months around here and it’s been hard to sit still long enough to reach out and update everyone as to what’s been going on in our lives. Anxiety, ADD, roller coaster, scariest time of our lives, all describe the last 2.5 months.
The Cliff notes version;
May 13th Jessica went to the Dr. and was told that her amniotic fluid level looked a bit low and they were concerned. Tom immediately flew home from a Board meeting and went with Jessica to the first of about a dozen ultrasounds to confirm that she had Premature Rupture of Membrane (PROM). No explanation as to why, we were just told, “Wow you’ve been struck by lightning twice” (We had a 39 week stillborn last August). The perinatalogists were not very encouraging and in fact pushed us hard towards unthinkable measures with a nice little acronym (T.O.P). they told us we were looking at a less than 1% chance of having a healthy baby. We were forced to dig deep and stay positive in the face of very dismal odds--Jessica was amazing and put on the positive outlook hat and never took it off.
Jessica, with the help of her amazing Mother and Sister went right to strict bed rest at home because it was too early in the pregnancy to check into the hospital since the baby was not yet considered viable. She drank every pedialyte and/or coconut water cocktail we could concoct and did everything in the world including acupuncture to try and hydrate and produce more fluid for our little guy to live in and develop in (the develop part being key). 4 weeks into the bedrest things blew up during an acupuncture session, major bleeding and gush of fluid and Jessica went into hospital via triage for tightly monitored bed rest. A round of steroids for the babies lungs, magnesium for his brain to cover our basis right when we checked in (hoping that we were going to be there for at least 6 weeks) but no, 12 days later our guy came into the world at 25 weeks and two days. Every one of those days and hours were key. Lung development being the biggest issue he faced.
What makes Holden's story so unique is that not only was he born within days of what the Dr.’s call “viability” and was incredibly small, but the real concern was his lung development which must happen for him to survive. The 5 weeks of low amniotic fluid, when he needs it most for lung development, really made him more like a 22 - 23 week old baby in his heart and lung development. The Dr’s worked their magic, Holden fought hard and he’s gone through five breathing apparatus and looking forward to hisk sixth and final low-flow cannula as his last stop before discharge. There have been many anxiety-ridden days, especially his heart surgery and the first five hours of his life. Thankfully, the last 12 days have seen a huge improvement as he finally went off the trachea tube and the ventilator that he had so much trouble with. He went for 10 days on a CPAP machine and headgear and just yesterday switched to a high-flow cannula that delivers oxygen through his nose.
He is now within a toenail of 3 pounds in weight, he’s eating mom’s milk like a champ and the Doctors are hoping we are entering the “long boring phase” where he eats, grows, poops etc. We like that idea. We can now see more of him, his eyes are open and beginning to track, he’s whimpering a bit and grabbing everything in sight. Mom is getting to hold him every other day with all his tubes attached and sit in a chair and do what she does so well. He’s truly an amazing little guy and an inspiration for all of us and the sweetheart of the NICU with many, many fans. We know we will have some hiccups and setbacks along the way but with Holden’s spunk we are confident he will continue to impress us all.
One aside from a not very religious guy.
Entering the day of Holden’s birth we’d had a false alarm and thought he was going to be born on the 13th. The Doctors were quite concerned and not very hopeful. We asked Father Doyt from Epiphany to be on standby for an emergency Baptism and prayer. After Holden was born I called Doyt and he agreed to show up at 4:30 AM Monday, four hours after birth. Dr. Mike, Holden’s main Neonatologist was struggling to get Holden’s lungs going. He was not getting enough oxygen through his lungs to oxygenate his bloodstream. His brain, heart and other organs were in jeopardy. The Doctors gave Doyt and I time to pray for Holden and hover over him and then Baptize him with “holy water” (sterile). Within moments his monitor showed better heart rate and his oxygen saturation levels popped up. The next day the new Doctor on the floor was doing rounds and commented without knowing of previous events; “I don’t know what happened at 5AM but he sure took a great turn towards survival”...
Oh, and where did the name Holden come from? Jessica strapped to the gurney for an emergency C-section, Tom in and Ambien induced coma.... Hold On Holden! It was a name we both liked from our short list and seemed appropriate for someone who was going to have to come out fighting. Hold On!
Follow your heart, ignore the numbers and trust in your little one to do what it takes to make it. You will be in awe of how much such a little person can teach you. It is a tough journey, but more worth it than you could ever guess!