Ruby's Surgery

We are currently at Gillette Children’s Hospital, sitting in a quiet hospital room with a very sleepy baby wrapped in a turban.  Nixon is at a dog show with a hospital volunteer, which is nice, since he is struggling because he has had two days now without a nap.  To this point, everything has gone smoothly.  

When Ruby was first born, still in the hospital, the pediatrician came to check her out.  Everything looked great but he expressed some concern about her head shape, but quickly stated “it’s probably nothing to worry about though.”  Uh… not comforting.  Six days after she was born we headed to Utah to visit family and that pushed her two week appointment back to three weeks.  Throughout those three weeks, I had this little concern constantly in the back of my mind that something might be wrong with her head.  The pediatrician hadn’t gone into detail about what was wrong or what it might mean, so, of course, I feared the worst.  

At Ruby’s two (three) week appointment I brought up what the pediatrician had said about her head shape.  Dr. Eichten said he could see some irregularity but that we would just keep an eye on it.  He also used those oh-so-comforting words “it’s probably ok.”  Fortunately I didn’t have to wait another three weeks to figure out whether or not it was, in fact, something to worry about.  Bless his heart, even though we were the last appointment of the day on a Friday before a three day weekend Dr. Eichten researched her head shape a little more before going home that night.  He called and left a message that he would like us to meet with the pediatric neurologist and would try to get him to fit us in when he was in Spooner the following Thursday.  He mentioned a condition called “scaphocephaly,” which is where the skull fuses prematurely.  Like most overprotective mothers, I immediately started researching this possible diagnosis.  Normally Google does nothing to ease the anxiety in a worried mom.  In this case, it really did help.  I knew nothing about scaphocephaly, what the potential problems/treatments were, or what it meant for Ruby in the long term. I learned online that if that was, in fact, what was causing Ruby’s elongated head shape, it was very treatable and in most cases does not cause any long term adverse effects.  I was able to wait to meet with the neurologist without too much anxiety.

On the day we met with the neurologist, he could immediately see that there was some premature fusing that happened and wanted us to get an MRI and CT scan.  I asked if this “craniosynostosis,” as he called it (which is more of an umbrella term for premature skull fusing) could cause brain damage in the long run.  He said there were three things we could find with the MRI/CT scan.  The first, which was the best case scenario, was that her skull hadn’t actually fused, but the soft spot was just too narrow for him to detect.  In that case, nothing needed to be done, we would just keep an eye on it.  The second scenario was that the skull had fused for some reason.  If that was the case, they would do surgery, which most kids have no issues with.  The third scenario, which made my heart drop, was that there was some deformation in the brain that caused the irregular skull shape. The MRI would tell us if this was the case.

We had to wait an entire week for that MRI.  Seven days.  Doesn’t seem like much but, oh boy, did those seven days drag on.  I loved Ruby so much, but every time I looked at her I had this worry, this fear that the life I had envisioned for her, wasn’t going to happen.  Not that I would love her one ounce less, of course, but just that it was different than what I had planned.  The day of the MRI came and we drove up to Duluth.  They had originally told us they would put her under during the MRI, but when we got there they decided to just have me nurse her so she would go to sleep and do the MRI without anesthesia.  It ended up taking about 2 and a half hours because she wouldn’t stay asleep.  If you have ever had an MRI or been in the room when they are doing an MRI, you understand why.  That machine is NOISY!  I was worried that, since it took so long, we wouldn’t be able to meet with the neurologist to hear the results of the MRI.  I would have to wait the whole weekend!  Fortunately they were able to fit us in.  The neurologist looked over the scans and very nonchalantly said her brain looked good.  He obviously did not know what had been going through my head all week.  I wanted to jump up and cheer but I held back.  That one statement took so much weight off my shoulders.  I was so relieved. He was still fairly certain that her sutures had fused too early and she would need surgery to fix it but that is a one-and-done type thing.

The next step was to meet with the plastic surgeon at Gillette Children’s Hospital, Dr. Wood.  Dr. Kanoff (neurosurgeon) said there was a good chance he would want to do a CT scan, but Kanoff was hopeful that Dr. Wood would be able to tell if the sutures were fused just by touch. So we headed down to St. Paul.  Meeting Dr. Wood and talking to him and his Nurse Practicioner was so comforting.  The way they talked about the surgery that she would be having was so matter-of-fact and confident that it calmed any fears I had.  Who knew someone could talk about cutting a portion of your child’s skull out and make it sound so easy?!  Dr. Wood has his patients get erythropoietin shots weekly and take iron supplements daily, which takes the chance of needing a blood transfusion during surgery from 100% to less than 5%.  That was comforting too! They scheduled the surgery for when she was 4 months old, and then we just had to wait.  

Yesterday (Tuesday) we came to the hospital.  They took us on a tour, got “before” pictures and scans of her head, and did a blood draw.  As we toured the hospital, everyone was so friendly and sweet to Ruby, it continued to calm my fears!  Because the surgery was in the cities and so far from people we know, we just had to drag Nixon around with us.  He did pretty well, especially when you figure he was without a nap! Chris’s coworker’s mom lived in St. Paul and passed away a few months ago, but her house is still here, fully furnished, so she offered to let us stay there while we are here.  That was so nice of her and helpful!  After our busy day we headed home for some much-needed sleep to prepare for the big day.  Well, Nixon got some great sleep (thank you benadryl!) but Ruby was up all night, which meant so were we!  

I took these before pictures this morning before heading to the hospital. You can see her head is very narrow and long.

Today we got to the hospital at 10:30 and for the next hour were able to meet several nurses, the anesthesiologist, neurosurgeon, and we were able to talk to  Dr. Wood again.  Each person explained their roll in the process and before we knew it, they were taking our baby to surgery.  We had to wait about an hour and 45 minutes before Dr. Kim, the neurosurgeon came out to tell us his part was complete and everything went well!  About 20 minutes later Dr. Wood came and and said his part was complete and it went well too.  He let us know Ruby was on her way to the recovery room and they would be out to get us shortly to see her. Our friends, Brad and Laura Kildow, were so kind and offered to come down today to take Nixon for a little while.  They took him when Ruby’s surgery was complete and entertained him while we went to the recovery room (where Nixon wasn’t allowed) and until we got situated in the PICU.  We were SO grateful for them for that!  It was so nice to be able to both be there together and focused on Ruby.  It was nice not to have to fight a toddler who is now on his second day without a nap.  Seeing Ruby in the recovery room was the first time since finding out her MRI was normal that I teared up.  Seeing my baby covered in tubes and monitors, her head wrapped in gauze, was heart-wrenching.  She was sleeping and didn’t seem to be in pain but it was still a shocking site.  

Pre Surgery - Cute gown!

Doll the Child Life Specialist made for Nixon 

Waiting

Once we were settled in the PICU, we went out and got Nixon and the Kildow’s so they could see Ruby.  Nixon was a little unsure of what was going on and really just wanted to get out.  The Kildows stayed for a little bit, and Chris took Nixon shortly after that.  I spent a long time leaning over the rails on her bed, rubbing her arm.  I was exhausted from last  night and all of the emotions from today but I just didn’t want to leave her.  I didn’t want her to open her eyes and be confused and in pain and feel like no one was there.  A little while later the nurse came and and said it was time to try to feed her.  The best part about that was that meant I got to hold her!  I held her and fed her, then I held her and stared at her.  When Chris came back with Nixon and dinner tonight a nurse very eagerly offered to sit in here and hold her while we ate.  After eating, Chris got to hold her while Nixon went to a hospital activity with a child life volunteer, and then I got to hold her again.  Putting her back in her crib (jail cell) was so hard but I know I need to get some sleep.  And I also know she’s my kid, so she will be up before long to eat again.  Us Bostrom’s don’t like to go long between feedings! She really has been a rock star so far, only whining occasionally, at which point the nurses are quick to come in and check on her and give her pain meds if she needs them.  Tomorrow we will be released from the PICU to the orthopedic inpatient floor.  We will stay there tomorrow night and Friday night, and Saturday if all is well we will head home!  

Post Surgery

Hopefully the only time she will be behind bars!

Love this sweet baby! Every nurse that has come in has commented on the rolls on her thighs!

I am so grateful that this was detected and fixed early on!  I am grateful that the hardest parts are behind us and now we get to move forward and onto the next adventure in our lives!