Small, But Fierce: It Must Run in the Family

Today is Robert Rylan Landon’s 2nd birthday.  I felt like I should tell you a bit about how strong and special this boy is.  First of all I will always think of him as a gift to us from his big brother.  I knew that there was not going to be anyway I could possibly be pregnant and then handle an infant with the care that Rowan needed.  So I tried to push the possibility of more children after the twins out of my head.  And that was hard, me coming from a family with 5 children…I had always counted on having as many as I could feasibly afford.

When Rowan passed it seemed so incredibly right to try to conceive again.  Of course I was scared out of my mind, but we had been assured that Rowan’s genetic issues were not inherited, so we needn’t worry about another baby being born at such a disadvantage again.  Rowan passed in March and in August I was pregnant.  Because of our history of not only Rowan, but also several past miscarriages I got the VIP treatment.  At only 6 weeks pregnant I got to have my first ultrasound.   But there was no baby visible.  The little fetal sac was empty.  I was heartbroken.  It is a somewhat common event to become chemically pregnant, but not actually have a baby there…and it all ends in a forced miscarriage.  It is called a Blighted Ovum.  I of course was SURE this was the case.  By six weeks there should be something there.  My Doc scheduled me to come back at 8 weeks to check again.  She was very sure I was off on my conception date and everything would be fine.  I was not at all off…I was sure of this.

Two agonizing weeks later I went back for the ultrasound…preparing myself for bad news.  There on the screen was a naughty little Rylan measuring right at 8 weeks.  I had not been off on my dates at all.

So we progressed through the pregnancy.  At about 20 weeks something came up on a ultrasound that the baby(we didn’t know boy or girl) maybe had something minor going on with their kidneys.  Of course I was very scared of any and all complications.  We had an amniocentesis done, where they use a giant needle to draw fluid from around the baby and use the skin cells in the fluid to do genetic testing on the baby before he/she is even born.  It all came back looking perfect.  Breathing a bit easier… except for that dang kidney issue that would not go away.

The baby was measuring over 9lbs on the ultra sound…they had said that this could be off up to a pound in either direction…so we opted to induce a week early.

The labor was hard and a bit complicated…the NICU team had to be in for the final pushes.  He had a bowel movement in utero and they needed to make sure he did not get any in his lungs when he took his first breath.  This was the second time in my life I sat in a hospital room surrounded by people and I was crying out the words “My baby, My baby”.  before I even saw him the the NICU team said, “Boy!”  He did great he did not breath any junk in and he scored very well on his initial tests.  He was cleaned and wrapped and I finally got to hold him.  I just remember looking and this tiny pudgy face and and very dark eyes and telling him how much I loved him.

Everything for the next 24 hours or so went pretty well.  I thought I had finally gotten my happy baby experience.  His kidneys were checked the next morning and they were perfect.  We were calling family and posting on facebook…and our moms came up to visit…it was so exciting…I had the “HEALTHY” baby bed next to me in my “Healthy Baby Room”.

On the second night at the hospital I couldn’t get him to settle down for anything, I tried everything and I was exhausted…so I did what I NEVER thought I would EVER do.  I asked the nurse to take him the the newborn nursery.  The next morning we were woken up by our pediatrician’s partner at about 6:45.  She had come up to check on Rylan and noticed he was making little jerking movements…that very much looked like seizures.  I heard her say that they had decided to transfer him to the NICU right away.  Oh for Fucksake…I shut down at that moment and went and took a shower, while the rest of my world fell apart.  It had only been a year and a month since we lost Rowan.  It had only been two years since we had been in that same NICU with the twins.

We got a call up to the room that Rylan was getting a MRI.  And hour or so later we got a call saying that the MRI had shown a Grade III brain hemorrhage.  I knew baby’s with less of a hemorrhage and they had not fared well. I was scared.  I was giving up…I was seeing everything get dark around me. We quit answering phone calls or texts, or posting on facebook.  For once in my life I felt like I needed some privacy.  I didn’t want anyone but our immediate family to know that something was not ok.

Eventually I made my way down to the NICU to see my “healthy” baby with IVs, heart monitors, and nuero probes stuck to him.  I felt sick.  Another day passed…nothing really new except that this was the day we were supposed to be walking out of the hospital with our new little healthy baby….

I looked at our favorite nurse we we got to know very well with the twins and I told her straight out…”I do not think I can do this again.”  I told her I was scared for my own self.  I had never been so close to letting go of everything and just shutting down.  She cried with me and told me that they had just had rounds and that everything was really looking much much better than they could have imagined.  Our pediatrician walked in at that moment and he said the same thing.  He would most definitely see us being released on Tuesday (it was Sunday).  I didn’t believe it and told him as much.  He convinced me that things were going well.  Rylan was eating really well, he was breathing really well, he was on seizure meds already and they were controlling the seizures.

Now let me stop for a bit and say…just because we were getting to go home did not mean that Rylan was in the clear…not by a long shot.  His prognosis was still very much up in the air.  The hemorrhage could grow and damage more of his brain and/or he could continue to have debilitating seizures. Even if nothing more happened we had no idea what the effects of this hemorrhage would have on his physical or cognitive development.  They were really watch his left side movements as they thought is where the damage on his brain would effect the most.  We were to see a neurologist and a geneticist for the next year…I was adamant, not to have any of the same doctors as Rowan… I was also adamant that I did not want the school system coming out like they had for Rowan.  I learned what worked and what didn’t and I was going to hit the ground running.  If and when he needed therapy we would be going to PTC.  I really got a bit of a reaming from a few counselors there in the NICU but I didn’t care.  Rowan taught me how to be strong for my babies.

So back to Sunday.  I needed to check out of my room…but I could not handle the idea of once again leaving my newborn baby at the hospital while I went home to my own bed.     I also had this awful feeling about the carseat being taken back home empty.  Think about it…the last time I left a baby at the hospital and drove away with an empty carseat, was when Rowan earned his wings.  The NICU team was amazingly generous to me.   I was allowed to bring in an air mattress right into Rylan’s room and sleep right next to him…I attribute this to him being such a good nurser.  Our favorite nurse also suggested that we bring the carseat into Rylan’s room instead of taking it home.  And when he was ready to be moved to a crib…again our favorite nurse hunted down one of those “healthy” baby beds and she even put his cute little name tag back on it.  This is the crap no one thinks about being special until you can’t have it.

I spent the night in the NICU and had my never ending supply of BLTs and oatmeal (a perk of being a nursing mom in the NICU is that you get to order food all day long for “free”).  I loved so many of those nurses that it kind of felt like a slumber party…I was up with a new born anyway…it was awesome to have company!  Also that first night I stayed in his room was the night they killed Bin Laden…I was watching it on the news while nursing my newborn.

Long story short…We checked out of the NICU on Tuesday and Rylan continued taking seizure meds.  We went to all of his appointments, Nuero, and Genetics, he had a head ultrasound done and a review of that…we watched his movements like VERY nervous parents…and eventually we and his doctors realized he was going to be fine.  At nine months old he was discharged from all those Docs and was pretty much given a clean bill of health.

And now I get to watch that rambunctious, but caring, and VERY smart little screwball do whatever he sets his mind to…

To put things into perspective for you this is a small description of the common possible outcomes when suffering a grade III Brain Hemorrhage. From http://preemies.about.com/od/preemiehealthproblems/f/IVH.htm

Long-term consequences may be mild or severe, and are usually related to the severity of the hemorrhage. Infants who have grade 1 or 2 bleeds may have no lasting effects, or may have subtle consequences that are difficult to measure. All children who suffered from IVH as infants are more likely to use special education services than children who did not suffer from IVH.

Many children with serious hemorrhages will have no lasting effects, but children who suffer from grade 3 and 4 hemorrhages as infants are at risk for more serious consequences. Developmental delays may be severe as these babies grow. Children with a history of severe bleeds may also suffer from poor cognitive functioning and other disorders such as attention deficit-hyperactivity disorder (ADHD).

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