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.

Welcome to the world Rylee Jo!!!

I held her in for 11 days!

It was now  March 9, 2011.

The morning I went into labor that was all I could think of.  Was 11 days good enough?  Was 11 days going to be good enough?  I was so unsure of what I was about to head into.  This was something that Jim and I could never of predicted.  We didn't realize that by the endof day our dream for the last 8 years ould have been shattered and a new one would begin.

Let me start at the beginning of the day...

I woke up at 7 am that morning; just like I had for the last 11 days.  All my vitals were checked and I was given my "yummy" breakfast tray.  I began to pick at the breakfast when I started to feel very uncomfortable.  I was having a lot of pain in my back.  I looked at the monitor, that was strapped to my belly, to see if I was having any contractions.  I had been having small ones on and off for the entire 11 days so I figured I would see something.  And I did.  The same ole' thing I had been seeing since I was admitted.

But the thing was, it didn't feel the same.  Every 15 minutes I was having sharp pain in my back and I was beginning to feel something in my belly.  Because it wasn't registering at the monitor I kept telling myself that Rylee was just moving alot and that my body was just tired of being in the bed.  Now thinking back I do not understand why I continuously doubt my gut instinct.  I always second guess myself.  I need to realize that I am capable of making good judgements and just go with them.  Anyways...

I then started waking Jim up.  If I was going to be in pain I definately did not want to be in pain alone.  After about 10 minutes Jim rose out of his very comfortable chair/ bed (ha!) and I caught him up to speed on how I was feeling.  He did what he always does and reasoned with me. 

I called the nurse in and explained to her what I was feeling.  She said that she would call the doctor but in the meantime she suggested that I try to eat some breakfast and go to the bathroom.  Although I knew that it was contractions I was feeling she felt, that because they weren't registering well, that they probably were only Braxton Hicks contractions.  The movement and the food would help me feel better.  She promised that she would call the doctor and that she should be here to talk to me within the hour.

By the time the time my doctor came to my room I was crying.  I couldn't at the time explain why I was crying.  I was in pain but I had definately had been in way worse pain in my life.  I now know that I was crying because I was hurting, I knew what was coming and I was scared for what was coming.  While we were there for the 11 days we had a Neonatal Intensive Care Unit (NICU) nurse come to my room to talk to us about what would happened if we delivered before 38 weeks.  We knew physical what to expect but emotionally I had no idea.  I didn't exactly know what caring for a premature baby would entail.  Our first daughter was full term and I didn't have any other experience having a child other than her.  So NICU here we come!


After talking with my doctor she felt that it was Braxton Hicks contractions but because I was crying and that I insisted that it was the real thing so decided that she would give me some medicine to ease my pain.  She said that if it was unreal labor that it would ease the pain and help me to sleep but that if it was real labor I would continue to be in pain and I would be real sleepy.  All I could think was, Great!  Now I am going to feel like a zombie all day while I am in labor.  I KNEW at this point that I was in labor.  Before she left she checked to see if I was dialated and I was only at a 1 and about 30% effaced.  She said this was normal with the breakage of water and she still felt that I would be fine once I got the meds.  Then she left assuring me she would check in with me later.

Then the nurse came in and gave me my meds through the IV.  She said to give it about half an hour and that I should be feeling loads better. One thing you must know about me is that it doesn't take long for medicine to work on me.  I can take children's sleepy time medicine and it works just as well as adult strength.  So when she said that I looked at Jim, smiled, and thought whatever.  I will be a zombie in about 10 minutes. And I was right! About the same time I started feeling VERY sleepy I had another contraction and this time it regitered on the monitor.  Jim suggested that I call the nurse and let her know.  I, doing what I always do, underplayed it.  I didn't want to call her and take her away from another patient for her to just tell me that I was fine.  So I dealt with it. 

At this point I looked and felt like death.  Oh how I dreamt of having a hollywood style labor.  I would look and feel marvelous.  But no, I did not.  I was uncomfortable and no matter how I sat, laid, or moved I was miserable.  So I called the nurse.  She then called the doc.  I was checked and was told that I was officially in labor.  I was already progress to 75% effaced and I was dialated to about a 3.  So then all the preperations for delivery began. 

Jim started making his phonecalls.  He told everyone not to rush becasue I was in the early stages and that it could be until about dinner  time before we were going to be able to meet Rylee.  We didn't know that I was going to be a professional baby deliverer.  (ha!)  It seemed that everytime the doc checked I was up 1 or 2 centimeters.  Really this was going extremely fast.  It seemed that every 15 minutes Jim was calling and updating everyone on my progress.



So then our family started showing up.  We all relaized that this was going to happen sooner rather than later.  We were all so excited to meet Rylee.  You could feel the excitement in the room.                                                                                                                                                                                               

Averi was finally going to have a sibling.  It wasn't a brother but she was finally OK with having a sister and today she was finally going to meet her!

So now we anxiuosly await her arrival! (or painfully in my case)

Our entirely family did their part to make me feel comfortable but I honestly couldn't feel comfortable no matter what I did.  In the back of my mind I was terrified. 

But no matter my pain or worries our family did everything they could to ease it.  Even putting on their smiley faces helped in that brief moment.

After a very hard epidural, I am not going to take up too much time with explaining how I should never get another epidural again and how my body is not capable of handling having one put in, and few hours later I was ready to push.  I couldn't believe it was here.  I was finally going to be able to hold the baby I had been dreaming of for 8 years.

So here goes nothing....

One push, two push, half a push, OUT!!!!!

Thats all it took.  Holding onto Jim's hand I pushed out our beautiful baby girl.  I was crying with excitement.  We had done it.  We had brought into the world the first woman president, an olympic gold medalists, or the person whe finds the cure for cancer.  Or anything she wanted to be.  All I knew was that I loved her with my WHOLE heart.  This was something that God had given to Jim and I.  A chance to be a parent again.  What a wonderful gift!!!!

What?

What did she just say?

I looked to Jim for clarification.  I was unsure of what was happening.  I could hear her crying but I didn't get to see her or touch her or kiss her or see Jim cut the cord or....

Did my doctor just say, "Oh my Gosh, She has spina bifida!".  Huh?

What does that mean.  Why won't they let me see her?  Why, now all of a sudden are there 4 more nurses rushign into the room?  Why are they saying she can't move her legs? 

I had all of these, and more, questions but I couldn't find my voice.  I couldn't even find words to say to Jim.  What do I say to him?  I felt like I had let him down in some way.  I wasn't able to give him the experience he deserved. 

I hated that at the moment I was supposed to be the happiest I had ever been I was crying and scared.  I felt like I was in a bubble.  I didn't, I couldn't process what was going on around me.  How could something be wrong with this child I had dreamed about for 8 years.  She was perfect.  She was supposed to be perfect.  Thats what our sonograms told us. 

NOT FAIR!!! NOT FAIR!!!  This is what I wanted to scream at the top of my lungs.  NOT FAIR!!!  WHY ME!!!!  I couldn't seem to get a grip on reality.  I started to feel like I was in a dream.  I didn't know how to wake up.

They took her.  I didn't even get to see her or hold her and they took her.  Jim went with them.  I was alone and freaking out.  I think it was that moment that I completely lost it.  I dropped way down into a place that I had never really been before.  Where was I and would anyone find me?  Would I be stuck here forever.

The next thing I knew my mom was there.  Could she rescue me?  So I cried!  As I know now crying was my way of screaming, HELP ME!!!  I AM LOST!!!  No one knew what to say.  What was there to say.  None of us knew what Spina bifida was.  We weren't sure at this point if it was a death sentence or if this was something we could work through. 

Really we couldn't come up with the right questions to even get any answers.  So we were lost.  I was lost! 

 After a couple hours, and many tears and prayers, I was finally able see Rylee.  She was in the NICU being prepped to be transferred to another hospital that could better help her.  I was still unable to hold her but I was able to touch her hand.  She grppied onto  mine like she knew I was her mom.  Like she knew I was supposed to be nowhere else but by her side.

Its official, we were new parents of a beautiful babt girl.  A beautiful baby girl that has spina bifida.

There were so many things we werer going to have learn because at this moment we were unsure of what our future held.  But all we knew for sure was that we loved her!



Rylee Jo Betts ~ March 9, 2011 ~ 3 lbs. 12 oz. ~ 17 inches long



What an IDIOT!

Strap on your seat belts...this is going to be a long ride! 

I am going to have to break this up into more than one posting because it will be entirely too long to put into one.  This way it will be easier to skip over the parts you don't want to read.  :)

I am going to do my best to catch everyone up from day 1 of Rylee's arrival into the Betts' family.  It has been a long journey so I might very well leave something out.  So if it is confusing and I need to clarify please do not hesitate to ask me anything.  I am an open book.  Well, I am now.  This is something I need to work on (letting people in on how I am really doing).  Thanks to my big sis Kimber and a couple other people I have realized it is OK to respond to peoples questions with. "No, I am not OK and here is why...) I guess the rambling has already started.  Let me get to the topic at hand.  Alright, here goes nothing...

I will begin by letting everyone know how I arrived at the hospital 29 weeks into my pregnancy.  And for those of you who are counting that is 11 weeks before I was due.  It began with a night out with one of my closest friends Michelle.  It was the first night of my entire pregnancy that I felt good enough to leave the house for anything other than work.  We went out to eat and then to a play at The Vex.  It was a wonderful evening.  I was really enjoying myself.  We met up with Jim, my husband, and Ryan, her husband, at their house.  It was about ten o'clock in the evening and to every one's surprise I was not tired nor was I ready to go home.  I was thoroughly enjoying my conversation and company with Michelle.  Jim offered to take me home but I declined.  Jim was surprised because I was in bed and asleep by nine o'clock every evening during my pregnancy.  This should have been a red flag that something might be wrong but I just thought that I was finally going to get to enjoy pregnancy like everyone else I knew.  This was something Jim and I had wanted for 8 years and I wanted to enjoy it damn it.  :)

But anyways...So now it was about two in the morning, yes two in the morning,  and we were hanging outside in the driveway talking.  The men were smoking cigars and the girls were laughing and making fun of the boys.  A typical night at the best friends house (ha!).  I was actually starting to get tired so I started giving Jim the cues.  Standing up, walking around, then sitting down! Standing up, walking around, then sitting down! Standing up, walking around, then sitting down! Then I was standing next to the car in the driveway and all of a sudden i feel something wet in my pants.  Really?  Did I just pee my pants?  I know pregnant women have bladder issues but this is ridiculous!!!  At this point I was embarrassed.  I didn't know what to do.  I didn't want to scream from the rooftops, "Hey everyone, I just peed my pants!".  So I did the only thing my crazy pregnant brain could think of to do; I sat down.  All I could think of was it was dark outside and I was wearing dark pants.  No one would be able to tell.  After all, Jim was happy that we weren't leaving so no one would notice that I was sitting on the concrete having an anxiety attack and dying from embarrassment.   

So I decided then, 15 minutes later, to call Jim over to me.  He knelt down I whispered in his ear that I had emptied my bladder all over myself.  He just looked at me and said, "Seriously?".  I am sure at that point he really didn't know what to say.  I looked at him longing for him to whip me up into his arms and take me away from this embarrassment.  But all he did was just look at me.  Really, what else could he do.  Then I decided to make it worse for myself.

Loud enough for everyone to hear I ask Jim to get me a glass of water.  All I could think of was I needed that water to dump on my lap so everyone would think I had spilled water on myself instead of what I actually had done.  As he was walking away I yelled, "alot of ice please!".  What?  Did I actually say that?  Why would I say.  Oh yeah, because if I was really going to drink it I would have a lot of ice.  This is how I drink all my drinks but I wasn't going to drink this one.  What an IDIOT!

So, like a good husband, Jim brings me a glass of ICE cold water.  Now what?  My brain kept telling me that I had to follow through with my plan.  There was no way I was going to leave with my dignity in tact if I didn't.  In reflection I now see that my hormonal crazy pregnant brain was taking over all my actions.  I now see that I should of just said something and gone straight to the hospital.  But, I didn't.  I kept moving around, peeing more on myself, just so I could find the right time to dump this water in my lap.  I finally did it.  Then I made a big deal about it so everyone would notice that I had done it.  We all chuckled a bit and the night continued.  No one the wiser.  Then I started thinking that I hadn't done it enough (crazy pregnant brain in over drive again) so I dumped the rest of the glass in my lap.  Now I was soak AND freezing from all the ice water.  Again I say, What an IDIOT!

I then motioned from Jim to come over to me.  I said that we needed to leave.  I was soaked and uncomfortable.  I asked Michelle for a towel to sit on in the truck.  I didn't want to soak Jim's truck seat.  Being that Michelle didn't know exactly how soaked I was she brought me a hand towel which of course was not big enough.  All I had to do was tell her I needed a bigger one but I didn't want her to know exactly what was happening so I thanked her and asked Jim to help me up.  He reached out with both hands and pulled me up.  Doing this applied pressure to my stomach and out came more "pee" and it maybe loud gushing noise that even Jim heard.  His eyes got huge!  He asked if I was OK and I told him that I was.  I just wanted to get home and into dry clothes.  So he helped me into the truck.  There was so much "pee" all over me that I dripped all the way to the truck!

At this point I should have known something was wrong but I could not let myself believe that it was actually happening.  I was still telling myself that I was still only peeing.  What an IDIOT!

I cried almost the whole way home.  I don't know if it was from embarrasment or that I was just plain scared.  Either way I was upset.  Poor Jim!  He didn't know whether to feel sorry for me or to be scared with me but he was great.  He wanted to take me straight to the hospital but I insisted he take me home so that I could change clothes.  I was still convinced that it was only pee.  He was convinced that my water had broke. 

WHAT!?!  My water broke?

That never crossed my mind.   This couldn't be happening.  I couldn't be having her now.  It wasn't time.   We weren't ready.  What would it mean for Rylee that my water broke!  Now I am scared!!!

Jim took me home.  I changed into dry clothes and peed all in those too.  So I jumped on the Jim train.  I needed to go to the hospital and I needed to go now.  I put on more clother, that I soiled as well, and we were back in the truck.  Once we arrived at the hospital I waddled my wet butt inside and told them that I thought something might be wrong.  I told them that I kept peeing on myself and I wasn't sure why.  I am sure they thought, What and IDIOT!  (ha!)

So they brought out the wheelchair and wheeled me over to the labor and delivery floor.  I got hooked up to all kinds of monitors, starte an IV and tucked me into bed.  After the sonogram showed that I had lost almost all of the amniotic fluid (it was official, I was an idiot) I was told that I would be in the hospital until Rylee's arrival.  I was given steriods to help Rylee's development and meds to try and keep me from delivering.  I was told that it would be ideal if I could hold out until 38 weeks but 31 weeks would be alright too.

So now a waiting game.  And waiting we did.  What seemed liked an eternity was really only 11 days.  I held her in for 11 days. Now the "fun" would begin.  I was going to be able to see the angel that I had been waiting for for 8 years.  The baby I had been dreaming about would be here soon; only she would be in a different package...

Work In Progress

Since Rylee was born I have been looking for a way to help me cope with everything that is going on and also try and keep everyone updated on Rylee's progress.  We have been so thankful for all the thoughts and prayers from everyone.  So, after thinking of something that could help me along this road title Spina Bifida (SB), I decided that starting a blog was the best route to take.

I am going to try and post regulary.  Things with Rylee change so often and I truly want everyone to be with us on this journey.  But please keep in mind that I am also a mother to another child (Averi who is 11), wife (for almost 10 years) and I am also in grad school (yes I am a glutten for punishment).  But with this in mind I am also going to make this a priority as well.

PREWARNING...I am probably going to at times ramble on and on about things that some of you might not want to hear about.  Please, feel free, and skip over my rambles.  I am struggling to find my footing as a special needs mother and I think this blog will help me to stand a little straighter.  So, at times, I might be using this blog as a way for me to vent my frustrations, stress, annoyance and also happiness.  So, I urge you, continue to come and read all about Rylee and her CRAZY mom!!!