Monday, October 31, 2011

Our NICU story

Now that I have a week break for Grad School I figured that I would try and get caught up to present day of the life of Rylee.  We left off with her first day of life so naturally I felt the next blog should be about our NICU experience.  Some of you know that I do not look fondly upon our 5 weeks in the NICU. So I am going to pre-warn you that this posting is not going to be jolly and full of life.  For the most part it will be emotional and sad but I feel to completely understand where we are now you have to know where we have been.  Enjoy!

I kept a journal while Rylee was in the NICU.  I had to have something that kept me sane.  I didn't actually start it until Rylee was a week old.  Each day I would write down when I went to the lactation room, how much I got in the lactation room, what doctors visited, what doctors said, and then just random other things.  I realized after that first week that I was being given too much information to remember so I need to start writing it down.

The first week (when I didn't journal) was really a blur.  I do not know how I made it through.  The day we had her she was transported, by ambulance, to another hospital that could better handle her birth defects.  I was not able to go.  I couldn't see her, hold her, feed her, or kiss her.  It was literally like something had been ripped from me and was never going to be given back.  My body had been preparing for something for 7 months and, at this point, my body couldn't follow through with its plan.  I felt empty. 

Fortunately, later that evening, Jim was able to go see her.  (I was still unable to go)  He left me there to go visit our baby.  I wanted him to be there but I wanted him with me too.  My whole world had officially changed.  Instantly I felt that no one could understand what I was going through.  There would be no one, not even Jim, that would be able to help me through this.  I felt at that moment there was nothing that would help me except for having Rylee with me at home and 100% healthy.  I began, at that moment, to feel cheated.  Why was I chosen to have a special needs baby?  Why I going to be capable of taking care of her?  Who was going to answer these questions for me?  (Fortunately, as time passed, I began to feel much different.  You will see!)

Jim came back to the hospital later that night.  He slept on a bed/chair that was made for an oompa loompa.  For those of you who don't know him he is definately NOT an oompa loompa.  So while waking up every few hours to help me pump we would grab a few hours of sleep.  A couple hours before we were to official wake for the day he was laying "comfortably" in the chair/bed and he heard a big CRACK.  Oh yes, on top of it all, the chair/bed broke (right in the middle).  That was the exact thing he needed at that moment.  POOR DADDY!  But there was much more important things to worry about.  We had to begin getting prepared to leave so we could make it for Rylee's first surgery (the repair of the myelomeningocele/spina bifida). 

I was actually discharged the same day that I had Rylee but was not actually allowed to leave until early the next morning.  They really didn't want me to leave then either but there was no way I was going to miss seeing or being with Rylee before/during/after the surgery.  The surgery was scheduled for 9 am.  If I remember correctly I arrived at 7 am. I walked into the NICU section of the hospital.  I had to sign in, get a badge and recieve a brief explanantion of how the NICU works.  I was sort of in a fog during this moment.  I couldn't beleive that I was having to do this just to see my daughter.  I was hoping that this wouldn't last long.  I just wanted to see her.  I wanted to know that she was ok.

Once we got back there I was taken aback at all my surroundings.  I do not think that a mother could prepare themselves for the experience of having a 9 week early baby who has spina bifida.  I didn't know how to react.  All I could think to do was cry.  So I did.  (Which is something I did quite a lot during this time).  But I couldn't, for some reason, let her see me cry.  Even during my emotional trip I realized that I needed to be strong for her.  So I faked it.  Honestly, inside, I was a mess.  I didn't know what to say or how to act.  For the first time in our entire relationship I didn't even know how to be with Jim.  I didn't even know how to be for anyone other than Rylee, not even myself. 

 After speaking with the nurse and finding out specifics about the surgery I was asked if I wanted to hold her.  Did I want to hold her?  ABSO-FREAKING-LUTELY!!!!  So what seemed like an eternity she was placed into my arms.



What a surreal experience this was.  There aren't really words to explain how this felt.  My whole body needed this.  It made it real.  I did finally have a baby.  A baby that I had been wanting for almost 8 years.  This moment will be engrained in my memory forever.  I did not feel the cords.  I did not feel the feeding tubes.  I did not see the nurses.  I did not see the bed that monitored her body temperature.  I didn't see anything else but this beautiful baby that God had blessed me with.

I also didn't realize how much my life was about to change.  I knew I was told that she had spina bifida but I didn't really know or understand completely what spina bifida was.  I was told she was going to have surgery to repair it but I what I thought was that it was going to fix it.  I didn't realize that repair simply meant repair. 

**REPAIR?  You mean this isn't going to go away?  How am I going to be a mom to a child that has special needs?  I am going to be so lost.  I needed/need help!**

Well the surgery was a success.  What a wonderful job doctors can do nowadays.  My daughter went in the OR with a bubble on her back and came out with, what is now, a small incision on her back.  How lucky we are to have her alive and be able to physically touch her.  Now our journey will truly begin...

I do not remember much after that (until I started the journal).  I know that my days were full of pumping (breast milk) and driving back and forth to the hospital.  I do not think that I learned much about my daughters disability in those first few days.  My body was trying to heal from having given birth.  I did not take the rest that I needed and became so swollen in my legs and feet that I found it hard to walk.  But nothing was going to keep me from being there.  Being with her was all my heart wanted or needed at that point.

**Thanks to my parents for letting Averi stay with them through all this.  It was a worry that I didn't need to worry about.  She was very lucky to have you guys during this time.**

So, I will fast forward to when I started journaling. I stared on 3/15/2011.  After reading this entry I realize why I began journaling in the first place.  I recieved a call from one of the doctors on this day.  He called me about 7:45 in the morning to inform me that an MRI of Rylee's head was going to be done because they had a suspicion that there was abnormalities in her brain.  What?  It was too early for me to wrap my brain around this.  I call Jim, who was working at the time, freaking out.  What does spina bifida have to do with the brain?

It was apparent that I knew nothing about spina bifida.  Unfortunately I was not capable of asking the right questions to understand anything.  I completely lost the ability to comprehend anything.  I was a shell of a person.  Reflecting now about our time spent in the NICU I truly wish I had been stronger for Rylee because I do not think I handled it as well as I should have.  There was just too much happening and my brain shut down.  It seems, now, a big blur.


She was also placed under lamps because she had jaundice.  That wasn't such a  big deal.  We did, however, get very cute pictures of the glasses she had to wear while under the lamps.






Ok, moving on, we did find out later that Rylee has Chiari II malformation (the abnormality they found in her brain).  We weren't told much about it.  The problem that I had with it was the way we were told.  Much like every thing in the NICU they went to the extremes when they told us about something.  It, what ever it was, was always going to be so extreme.  It felt like they wanted us to be in a constant state of worry.  They would build us up only to let us down.  I guess I should be grateful for that but the high amounts of stress were hard to take at times.  When they originally called me and told me about the brain abnormality they siad that it could possibly mean that she would be mentally retarded.  This was the first, of 3 times, that I would be told that she would be mentally retarded.  Not that this was a death sentence but it does take things to a whole new level.  Needless to say she isn't mentally retarded and after the CT scan we were told that the Chiari II malformation wouldn't have much effect on her.  We probably wouldn't even notice a difference in her, cognitively.  Really?  Thanks guys for flooring me first!


Onto the next day, 3/16/2011.  (I promise there will be some days I skip) Today we had the first of three eye exams done.  We were told that everything seemed fine but that she is still too premature to know for sure.  So another exam would be done in two weeks.  Yep, more waiting.

Today was the first day that the physical therapist would come.  We would finally understand exactly how Spina Bifida had effected her mobility.  (or so we thought)  Her initial evaluation told us that she had no power in the bottom parts of her legs.  Her hips didn't ahve much range of motion.  She was going to have PT 3-5 times a week in order to straighten her legs out as much as possible.  We were stunned.  We didn't realize that she would never walk.  We couldn't beleive that she was going to be in a wheelchair for the rest of her life.  It didn't seem possible.  At this point my brain was on overload.  I didn't know how to do this. I guess only time would tell!

So we carry on....

3/17/2011 was the first day that we were told that spina bifida can cause problems with peeing and pooping (sounds so official right?)  We didn't know the extent of the problems that it would cause (we would definately find out later) but we were informed that it had the possibility to do so. 

Today I also was able to give Rylee her first bath.  I assisted one of the NICU nurse, Natalie, with it.  I didn't get to do much much, mostly because of my hesitance, but it was nice to finally be able to do something.  I do have to say that this NICU nurse Natalie was the best nurse we had throughout our whole stay in the NICU.  She made us feel like people not just another patient.  She went above and beyond her call of duty.  Natalie will always have a special place in our hearts. 

3/18/2011 Jim finally held her for the first time.  I was so happy.  He had been so reluctant to do so because of her size.  It was such a special moment for me!  (I am sure it was for him as well)


Finally it was as it should be.

On this day she was also moved from NICU to IMC.  This was a big deal because it meant that she was improving!  This was great news!!!

3/19/2011  I attempted to breatfeed today.  It was not successful.  She didn't seem to want to latch on. We were going to try atleast once a day!  We hoped it would improve over time.  She actually latched on the next day but it was only for a few seconds.

3/21/2011  They started doing ultrasounds on her every few days because of her hydrocephalus.  They wanted to monitor the size of the ventricles.  When and if they began to enlarge they would perform surgery to insert a VP shunt to take some of the spinal fluid off her brain.  Luckily its was being monitored very early so little if any damage would be done.

Phyical therapy again today.  SHe is very inconsistent with her reaction but she does have some.  So at this point they are very unsure how much control she will have.  But they are not sure.  To me this is hopeful.  It is not that she WON'T is it, like everything else, only time will tell.

3/22/2011  The dressing on her back, her mylo repair, was removed.  The stitches were left in.  But it was nice that we were making steps in the right direction.

Rylee began urinary catheterization today.  It is an in and out cath that is done 3 hours.  After a few days of this they will decided if it needs to continue or if it can be done over longer periods of time.  This scared me.  I did not want to have to do this at home.  There was already talks of the nurses teaching me how to do it.  Again, I didn't understand why.  They didn't do a good job of explaining things.  The docs simply said do it because I said so.  this wasn't good enough for me.  I needed to know why.  Otherwise I am resistant.  So I kind of withdrew from the caths all together.  I would leave when they were doing it.  Looking back this probably wasn't a great idea.  But my defense mechanism is to withdraw.  I am still working on this aspect of myself.  I need to learn to face things better and not run away or withdraw. 

But the very next day she went to having the caths done every 6 hours.  In my mind this meant that she was doing great and there would be no need to learn because she would eventually not have to do it.  (boy was I wrong)

3/24/2011  We were told today that the ventricles in her brain were show signs of enlargement.  There was no other choice but for her to have surgery.  Surgery around her brain.  I was floored once again.  This would be 2 surgeries within 3 weeks of life.  I hated that she had to deal with all of this so soon after birth.  I hated that I had to deal with this so soon after having her.  I hated that Jim couldn't just enjoy his new baby girl.  I hated that Averi hadn't even seen her sister and she was headed back for another surgery.  What if something went wrong.  Averi would never get to meet her. 

I couldn't get these thoughts out of my head!!!!!!!!!!!!!!!!

3/25/2011  We found out that the surgery would be on 3/28/2011 (my birthday)  Wow!  It seemed quick but what other choice did we have?  As they went over the surgery with us they felt that instead of the shunt that they would put in a resevoir, because of her size, and then once she was big enough we would put in the shunt.  This would mean another surgery soon after this one.  Thisis way too many surgeries.  I struggled with feeling like this was alright.  I couldn't believe that we were having to make these kind of decisions.

They also talked with us about placing a feeding tubein her stomache because more than like they she would have trouble eating.  I didn't think this was right because she is showing all the signs of being a successful eater.  But they are the professionals right?  They must know what is right for her.  We are just going to have to go along with what they say.  It sucks!

3/28/2011  This is the day of surgery.  We get there very early (even before the doors were opened to allow us in)  They let us in because she was having surgery and we needed to sign papers and be there while she is prepped.  Once we got there and spoke with the nurse we talked to her about the resevoir and the feeding tube.  She didn't feel like this was the best route for Rylee.  Finally, someone who agreed with us.  She said that she woudl talk to the surgeons on our behalfs and let us know what they decided.  Once the nuerosurgeon got there and she spoke with him he came into the room and spoke with us.  Ultimately, they decided that she would not get the feeding tube and that she would get the shunt instead of the resevoir.  WHAT A RELIEF!!!  I was so grateful for that nurse.  She helped to eliminate one more surgery for Rylee. 

Now off she goes....



She made it through just fine.  We finally got to see her again.



This was so hard.  She was so uncomfortable and in so much pain and there was nothing I could do.  As a mom this was devastating.  I was told that she would be fine but I just didn't feel like she would be.  It was so scary to see her like this. 


I am not exactly sure why but she had to have a blood transfusion right after surgery.  This was the hardest thing for Jim.  He wouldn't allow me to read the papers that he had to sign because he was protecting me but at the same time we was making it harder for himself.  He was trying to carry the burden all by himself.  The negative side effects was too much for him to read.  He had to step out of the room and not see this happening. 

The heaviness of the day had finally set in and we were exhausted.  I think that Jim and I aged 10 years through this whole experience.  It is, it was, a good thing we care deeply for one another.  If it wasn't for him I do not think that I would have made it through what we had been going through without him.

She was going to be fine.  Time was on our side!  (HA!  Time.  I thought you would like that Jim)

3/30/2011  The nuerosurgeon said her ultrasound looked good and as soon as her premie problems were solved that we could go home.  HOME?!?  This was the first time that anyone had even mentioned this word to us.  I was beginning to think we would never be able to leave.

Today was also the first time Rylee was able to lie on her back. It had healed enough!  What a fighter she is.  She heals so fast.  She is such a miracle.

3/31/2011  She was finally put in an open air bed.  She could maintain her own body temp.  It was actually going to happen.  We were going to be able to go home soon.  She didn't to reach five pounds and have no drops in heart rate and we would be on our way!!!

4/4/2011  There was an ultrasound done of ther head today.  It showed that the ventricles were still getting bigger.   How could this be?  I thought the shunt was going to fix this problem.  He informed us that it might take just a bit longer for it to work because of her size.  He was going to give it a couple more days and check again.  He wasn't too worried because she was progressing well.  If there was a problem there would have been no progression.

She also had her second eye exam today.  We were told that everything had developed well and there was no cause for concern.  (For now!)

4/6/2011  Today they decided that her cathing could be done every 12 hours.  They did not feel they were getting enough to do it more often than that.  They wanted to make sure there was the least amount of damage as possible.

4/8/2011  Today they decided that she didn't need to be cathed any longer.  They felt that she was peeing enough on her own and that her bladder was functioning well.  I was so happy.  I was so scared to have to do it myself.  Now I was relieved.  (I wish I knew then what I know now.  Ignorance is not bliss!)

4/9/2011  She is finally eating from a bottle (or breast) at every meal.  If she keeps going like this her fedding tube (through her nose) will be taken out.  Unfortunately she does not breast feed well.  But she LOVES the bottle.

4/10/2011  I want to share a picture of Rylee after her shunt surgery because today was the day they were taken out.


I was so glad that they would be taken out.  It would be nice to see how it was going to look normally.  I couldn't wait until her hair grew over it.  I couldn't help but wonder how people out in the real world would react to seeing her this way.  Why did I care?  I shouldn't care.  This was something that was going to help her.  (I would eventually not care. I knew that.)

4/11/11  There were talks of letting us go home but Rylee had what they call an episode.  She needed to ahve 5 days of no episodes before she could go home.  Now it was just a countdown.  But she did get the feeding tube out today!  She is improving so much!


4/13/11  For some reason they did an eye exam on her today.  I was never told why they did this.  The second one they did came out wonderfully.  Unfortunately this eye doctor's bed side manner wasn't as good as the last.  He told me that he saw things that weren't fully developed and that she would possibly be mentally retarded because of it.  Seriously?  How could an eye doctor be able to tell me this?  I was devastated and a mini meltdown.  He told me that I was going to need to follow up with a pediactric opthamologist once we were discharged in order to get the final diagnosis.  I was going to have to wait a few weeks to know if my child was mentally retarded.  I didn't think  my heart could take anymore.

4/14/11  She had a hearing test done today and she passed with flying colors.  Finally, some good news!  Needless to say, we were thrilled.


Today she had the car seat test done.  She had to stay in the carseat for an hour with no episodes in order for us to go home.  She looked so tiny in that chair.  So cute.  What I love about this pic is that you can tell she is moving her legs so much and they told us she would never do that.

She failed her first test and had to complete it again the next day.  We were so discouraged.  We thought we were never going to get out of there.

4/15/2011  She passed the car seat test.  We were able to go home.  Now all we needed to do was take the CPR class.

4/16/2011  Today was the day we were discharged.  We arrived early to take the CPR class.  We were so excited to leave Jim and I knocked off during the entire class.  It kind of felt like we were our old selves again.  It was nice to be able to joke around with Jim again.  It felt as if we reconnected again.
Here is our practice baby.  It was so funny!


The five weeks we were in the NICU felt like five years.  It was something that effected Jim and I very differently but we were none the less effected.  We are so happy to have Rylee.  It is very hard at times but well worth it. 

In the blogs to follow I will explain how rocky and amazing it was to have a special needs child.