Baby Isaac - Week 1

Welcome to the outside world, Isaac Leo! Two months early, at 31 weeks and 5 days, 3 lbs. 5 oz. and 14 in. long.

Isaac was delivered at 7:09 am on April 8, 2017, by emergency C-section. I had placental abruption, which means the placenta detached from the uterus, causing bleeding, and my water broke as well.

Thanks be to God, Isaac has been strong since the beginning, never having a faltering heart beat or in distress. He came out kicking and screaming! :)

This blog is where I'll sorta-kinda document his journey so anyone interested can follow along. It's going to be a long journey. And it started a long time ago when we first found out he had some issues in utero.

At our very first ultrasound, around 13 weeks gestation, we could see that Isaac had some problems unusual things going on with his tiny little body. At first, the doctors thought it looked like he had a tumor near the end of his tailbone and Isaac had two cysts on his brain. Through the subsequent ultrasounds and finally near the end of the pregnancy, the cysts had resolved(gone away) on their own, there was no tailbone tumor, and, instead, we could clearly see Isaac had a bubble(if you will) coming off of his abdomen. While the docs never figured out exactly what was inside the bubble - called an abdominal wall defect - from what they could tell and figure there was probably intestines, the bladder, liver, and possibly his boy goods inside the bubble (which was a sac covering the insides with a thin membrane).

I was due for a fetal MRI the Monday after Isaac was born, to see more clearly what was inside the bubble, but, as it turned out, the MRI was unnecessary. ;)

Getting ready to fly!

A few hours after he was born, he was flown by helicopter to Phoenix Children's Medical Hospital, about 2 hours from where we live in Tucson. We were recommended that hospital because of its renowned (all over the country) care and specialists. It is no accident he is there - that hospital is PHEMONENAL!!! The specialists, doctors, surgeons, NICU, and NICU nurses are AMAZING. Even though Isaac is far away right now, I wouldn't want him anywhere less awesome.

Three surgeons for this little guy

Once he was out of the womb and at PCH(Phoenix Children's Hospital), the doctors could see exactly what was going on with his body. He has a very rare condition called OEIS complex (more here). His bladder, some intestines, and penis were in the sac that was now gone. They had wrapped all that in (basically) saran wrap and kept it moist. Also, his bladder was split in two halves, apart from each other. Also, he has a funky crook at his tailbone, which is tethered spinal cord, here, but he does not have spina-bifida. We have been told it will take several surgeries to get things in working order (at least to some degree).


He had his first surgery on April 12, just four days after being born. This surgery put his intestines back inside his abdomen, and the two halves of the bladder together on one side. (So basically, an open sphere split in half is what it's like at this point). During the surgery, the docs discovered Isaac only has 18 cm of intestines. The typical newborn has 200 cm of intestines. So he was born with less than 10% of his intestines. When they saw that, they realized he was going to need help with feeding and pooping. After everything was said and done, Isaac came out of surgery with a stoma/colostomy (learn about that here), a G-tube placed in his stomach for feedings (more here), his intestines put back in his abdomen, and the two halves of his bladder sown together on one side.

Isaac did wonderfully! He was great during surgery and his recovery is going well so far.

Just like the song "I Will Survive!" :)

The only bump has been when they started feeding him a tiny bit of breastmilk in his G-tube, which he threw up for a while, so they decided he wasn't ready yet, that his intestines probably just need some more time to get working and out of the anesthesia from surgery. So for now, they'll continue to give him all the nutrients he needs through his picc line, (more on that here).

He had a breathing tube in place until yesterday, the 15th, just for some extra help during the surgery and recovery. They removed the tube, and he now just has an oxygen prong thing in his nose (like old people wear sometimes) which really just puts out a couple puffs of oxygen every now and then. He is breathing great on his own otherwise.

Getting him off the breathing tube was the first step post-surgery, so woohoo! The nurses have been managing his pain well, and he has been very vocal since the breathing tube was removed! :)

We aren't sure at this point when the next surgery will be  - most likely in a month, and that surgery will be to put the bladder back into a whole sphere. From then, the surgeons said he shouldn't need another surgery for maybe 5 or 6 months. The spinal issue is not a major concern at this point and is something that will be addressed later on down the road.

So right now, it's all about getting Baby Isaac growing, healthy, well-managed pain post-surgery, and his body adapting to its several changes and new ways of functioning.
He will be in the PCH NICU for at least 8-10 weeks, hopefully free of sickness or infection, so he can just go up from here. :)

Just want to put this out there also - there were a few doctors who, after seeing the ultrasound results in the beginning, told me about the option to "terminate the pregnancy" because of the possible outcomes of Isaac's very rare condition. They were all pretty grim in their summation of how the pregnancy would continue (if at all) and, even if he did make it close to term, of how he might turn out. Well, one of those docs actually ended up being my C-section surgeon. And, my hope is that she recognized the miracle that Baby Isaac is and has always been. They kept saying at each OB appointment that they just hoped he would make it to 20 weeks, then 24 weeks, then 28, then 30, and so on. God kept him in for almost 32 weeks, longer than anyone on the medical staff thought he would make it. He doesn't have a genetic disorder, his brain is perfect, his heart is perfect. And while his issues were caused by something chromosomal, this very rare condition is NOT something that, of itself, comes with mental/developmental issues. AND EVEN IF IT DID, Isaac's life would have no less value than any other's simply because he would be different. That is truth, and Isaac is a miracle, and the fact that he did not die in my womb is a miracle, and the fact he is surviving and STRONG is a miracle.

Isaac was created for a purpose far greater than anything anyone can imagine. He is loved, strong, and amazing.

Praise God, from Whom ALL blessings flow! And Isaac is indeed one of those blessings.