From then 'til now!

I read over our NICU blog post and I was left feeling a little unfulfilled.  It seemed like I was just trying to go through the motions of writing the entry.  So I wanted to say a little comment about our time in the NICU before I went any further. 

We did have a couple good nurses.  Ones that we will NEVER forget; especially Natalie.  Nurses like her brought sunshine into our lives when otherwise we would be surrounded by rain clouds.  So I wanted to take a moment to thank her for that. 

Also, the five weeks we spent in the NICU was a very hard time for us.  It changed our lives in so many ways, good and bad, and still continues to effect us til this very day.  There wasn't enough positive experiences.  It effected our marriage, our careers and our sanity.  Thank you to those who stuck by us and loved us enough to be there no matter what.  We truly love you all. 

On April 16, 2011 we were finally able to bring our baby home.  It was the day we had been waiting for.  Now it was going to be real.  I wasn't exactly sure at that moment what real was.  I was just focused on the fact that we were no longer going to have to be at the hospital all day long and that I could hold, feed, change, and love her anytime I wanted to.  Our new lives could truly begin.

We were also going to be given the chance to introduce our children to each other.  You had to be 13 in order to enter the NICU so Averi, our oldest, hadn't seen her sister in person.  She had only been able to see pictures.  I am sure this was very hard on her because she didn't really know what was going on.  Jim and I didn't tell her the full details because we wanted her to see that her sister was, for the most part, just like every other baby.  We felt that if we told her everything she would worry too much.  So today was the day.  Our family would finally be one!!!

The rest of the month of April was full of getting used to the new sleeping and feeding schedule.  I was finally going to be able to get up in the middle of the night and take care of my baby.  I felt that I was finally going to be able to get her to breastfeed and finally quit pumping.  But after 3 more weeks of pumping, and her refusing to take it, we decided to formula feed her.  I hated this choice but we felt that our hands were tied, so to speak, and between pumping, feeding, and sleeping I was not able to do anything else.  In the NICU a few of the nurses gave her only formula (and bottle fed her without asking me).  We felt that this set us up for failure.  But she was home, and alive, so in the grand scheme of things it really wasn't that big of a deal.  I think I was just being sensitive about it. 

Also during the month of April I made ALL of my doctor appointments for Rylee.  This is when I realized that I was going to be VERY busy.  When we were discharged, and they went over our discharge information, I didn't realize how much time I would be spending at doctors/therapists offices.  After making all the appointments I realized that I was going to have to have a calendar that went everywhere with me.  I chose a calendar that also had a filing system with it so I could take her paperwork with me everywhere we went.  I also put her medical cards in it.  For those of you who know me personally you probably aren't surprised that I jumped at the chance to organize myself.  :)

               

May

During this month we met with Brighton.  This is a non-profit that comes to our house.   They provide services that include case management, nutrition, counseling (for me), physical therapy, and occupational therapy.  Rylee will not utilize occupational therapy until she is a little older but we will use all other services.  The physical therapist, Lilly, started coming to our house twice a month.  She has been such a god send.  She was the first person that told us that Rylee had the potential to walk.  She said that she was surprised at how much power and control she actually has in her legs.  It was such a relief to hear this.  Finally someone sees the potential in Rylee that we had felt from day one.  Rylee is such a fighter.  I cried the first time Lilly evaluated Rylee.  It was really the first breathe of fresh air we had.  (She still continues to be that for me and for Rylee).

Also during this month we had a follow up with Rylee's neurosurgeon.  His name, being I think its awesome, is Dr. Megahed.  Too funny!  Anyways, after a head ultrasound we were informed that her VP shunt was clogged and that she was going to have to be admitted for surgery but before that we were going to have a VP shunt series done (picture above) Oh gosh!  This is real.  I cannot believe that we had only been out of the hospital for a month and we are already back in.  My heart couldn't handle this.  I thought I was getting a firm grip on being her mom but really I was getting a firm grip on being a mom to a "normal" child.  I could handle the feedings and diaper changes but I hadn't really gotten thick enough skin to handle this.  I was going to have to get it together for her.  I needed to be the strongest person, mom,  I could possibly be.  Ready or not, here comes surgery!

The surgery went fine.  She is a very strong little girl.  I needed to have as much faith and strength that she has.  (I am getting there)

June

This is the month that our calendar starts filling up.  We had 11 appointments this month.  There was physical therapy, neurosurgery, pediatrician, case management, counseling, urology, and opthamology.  We had to see the neurosurgeon twice this month because of the revision.  Luckily these two visits went well.  She was cleared and it looked like it was going to take this time.  (LUCKILY!!) 

So the next two I had to worry about was urology and opthamology.  I was worried about urology because I wasn't sure if we were going to have to start cathing again or not.  So I did what I always do....stressed!  So we went to the visit, had a renal ultrasound, and then we were told everything looked fine.  We didn't need to begin cathing but were warned that it was something that we would possibly have to do in the future.  All I could focus on was that we didn't have to start.  To me that meant she was beating the statistics.  I just thought that we were one of the lucky ones. 

Onto the next stressful appointment - the eye doctor.  I was stressed about this one because of the eye doctor she saw in the NICU telling me from what he saw in her eye exam she might possibly be mentally retarded.  Even though, in my gut, I knew this was silly it was still something that stuck with me.  I was terrified as to what he would say.  So we went, they dilated her eyes, and he gave her the exam.  I explained to him what was told to us in the NICU and he pretty much called that doctor crazy.  He says that he sees nothing to be concerned with and that she looked great.  REALLY?  I was relieved but really mad because I had spent all this time in a constant state of worry because of one doctors stupidity.  (I have now learned to take some things with a grain of salt)

July

I included a picture of her with her sister this month because she is really growing a love for her that is hard to describe in words.  Rylee really only laughs for her sister.  It doesn't matter what Averi does.  Rylee thinks it is absolutely fantastic.

This month was a little slower than last month.  We only had 7 appointments.  They were the usual; pediatrician, physical therapy, neurosurgeon, case management, counseling, and opthamology.  The only new doctor we saw was the orthopedic doctor.  We were looking forward to seeing him because Rylee really needs to have her feet straightened out so that it will be easier for her when she is ready to walk (if she is ready to walk).

But the appointment with him didn't go that well.  He only spoke to her/us for about 5 minutes.  He said she needed braces and sent us on our way.

So we had the braces on her all night long.  When I woke up the next morning and took them off I noticed that her feet and ankles were very red and swollen.  I remembered the man at the prosthetic place told me it would happen but I didn't realize it would be this bad.  I tried not to overreact.  So I gave her her morning bottle and then she took her morning nap.  When she woke up her feet and ankles had gotten worse.  I then called the ortho office and asked to speak to the doctor.  I was told that it wouldn't be possible and that a nurse would TRY to call me in the next 24 hours. 

I was freaking out.  Her feet and ankles were very swollen and red as an apple.  4 hours had gone by and I hadn't heard anything so I called Lilly; her physical therapist.  She helped to calm me down.  We decided that weren't going to put them back on her until I spoke with the doctor. 

I didn't hear from the doctor for the rest of the day.  Finally, around lunch time the next day, a nurse called me.  I explained to her what was going on.  She told me that as long as Rylee isn't screaming in pain that I should have nothing to worry.  I told her that Rylee didn't have feeling in her feet and ankles so she wouldn't "scream in pain".  Then she just sat there.  It was silent.  I asked her if I could make an appointment to see the doctor and she explained to me that there was no need.  If Rylee wasn't showing any sign of discomfort then there isn't a need to come in.  ARE YOU SERIOUS?!?  Did she not hear me?  I then repeated myself...Rylee has no feeling there!  I got the same response.  NOTHING!  Then she told me to call back if Rylee starts to shows sign of pain and then we would be able to come in.  She also told me to call the place where we got the braces and see what they recommend.  Whatever!!!!  I was done with her.  She was a complete idiot!

But I did call the brace place (as I call it) and they didn't understand why I was calling.  They said that I needed to be seen by the ortho so he could come up with a different plan.  I explained to them my conversation.  He sounded irritated with the doctors office.  He did tell me not to put them on her until the redness went away.

So that's what we did.  The next day, still not wearing the braces, I called and got a referral to see another ortho doctor.  One that would listen when we were in distress!!!

FYI - Rylee's swelling went down in 8 days and the redness we had for an entire month.  Finally one day we woke up and her feet were peeling.  We peeled the skin off and the redness went away.  It was very strange.

August

This month we had 13 appointments.  This didn't include all the appointments we had for Averi (our oldest).  It was going to be a busy month. 

We visited an ENT this month.  Rylee has had congestion since she was born.  It has concerned me a bit so I casually asked her pediatrician about it.  She felt that it would be beneficial for Rylee to see the ENT so we could rule anything out.  The reason being is that Rylee has little red "birth marks" all over her body.  There is about 7.  Her pedi said that often times that when children have these they also have them in their nasal cavity so she wanted to make sure.  The ENT confirmed that that was not the case.  Once again...GREAT NEWS!!!

We saw the nutritionist for the first time this month.  She didn't tell us much because Rylee was still only eating formula.  She wasn't ready to have baby food yet.  So we talked about her feeding schedule and she reassured me that I was feeding her the right amount.  :)

We had an appeal interview for SSI this month.  We are keeping our fingers crossed that we would be approved.

We saw an endocrinologist this month.  We were sent to him so he could monitor Rylee's growth hormone.  After being in his office for 4 hours he told us that she was fine.  He also cleared up some information for us that we didn't really understand.  Rylee has some things missing in her mid brain.  We weren't sure how this would effect her long term.  He told us that, if it did, we probably wouldn't notice.  The piece that she has missing doesn't interfere with the communication from her left side and the right side of her brain.  Really the only thing he said that it might effect is that she will be able to use both hands easier than we would.  He said that it shouldn't be something that we have to worry about.  That was great news!

The only other doctor that we saw new this month was her a nephrologist (kidney specialist).  We decided that we didn't want to see our urologist (because of difference of opinions) so we needed to see someone.  Her nephrologist was referred to us by her pediatrician.  As we will find out in the months to come it was truly God who guided us to see this doctor.  There isn't much else to say about this appointment, at the time being, but I will definitely be talking about her again.

On a side note - our oldest daughter started her first year of middle school this month.  I can't believe how old she is getting.  She truly is the sweetest young lady.  We are very blessed to be parents of a beautiful girl.

September

This month we had 11 appointment and one 5 day hospital stay.

The only new doctor we saw this month was the new orthopedic.  He is wonderful.  He told him about the previous braces.  He said that he didn't think we wanted to put her in any braces as of yet but that we wanted some xrays done just to see how things were looking.  (Which is something the other doctor didn't do)  So we went down the hall and had them done.  He came back into the office and told us that everything looked great.  He didn't see anything that would keep her from walking.  He was going to cast her, for her feet, but felt that it would be better done after she is a year-old due to her reaction to the previous bracing.  We all agreed that it was a great idea.  We left his office feeling very optimistic about Rylee's future!

At the end of this month Rylee's nephrologist ordered a VCUG  to be done on her.  It is a live picture of her kidneys and bladder.  This did not go well.  We found out that she has grade 5 reflux on her right kidney and grade 4 on her left.  Grade 5 is the most severe.  This was devastating news for us.  Things had been going so well.  I didn't really know how to process this information.  I knew it was not good but I didn't realize at that moment how bad it was about to get.

The very next day Rylee starting running a fever.  When I first checked it is was 99.  Her temperature usually is at 97 so I wasn't too alarmed until 20 minutes later when I checked it and it was 101.  I called her nephrologist then.  I explained to her what was going on with Rylee and she told me that if her temp hit 101.6 then I would need to call her back.  She didn't explain what would happen then but I felt that it wouldn't be good.  10 minutes later it had hit 101.7 and it was showing no signs of going down.  So I called the doc and she explained that Rylee would need to be admitted into the hospital.  Since she has reflux she needs to be monitored to make sure we don't damage her kidneys.

Since my good friend Leslie was visiting she watched Rylee while I had for yet another hospital visit.  I officially hate the inside of a hospital.   By the time we got to the hospital her temperature had risen to 105.  In the time span of two hours she went from a baby that was playing and laughing to a baby that couldn't do much but flash a little grin here and there. 

I wasn't exactly sure what would be happening in the hospital.  I just knew that she needed to be monitored, given fluids, and given medicine.  We were there for only 5 days (it felt like 5 weeks).  During that time Rylee was given a PICC line that she would go home with.  I was going to have to flush the IV 3 times a day and also administer antibiotics through it once a day.  I was going to have to quickly get over my fear of blood.

She had the PICC line for 13 days.  Ten of which she received her antibiotics.  The doc didn't want to take it out because she wanted to make sure the infection was clear before it was taken out.  So we went to get some labs done and after a 48 hour study we were instructed to have the PICC line taken out.  The infection was gone.  We were so relieved...but only for a brief time.

October



Rylee with her big sister!!!



Just a little over 24 hours after the PICC line was taken out Rylee started running high fever again.  My mom and I took her to the ER and sure enough it was another UTI.  The plan was for us to go home, after she received a shot of antibiotics, and then return the following morning for her to have the PICC line put back in.  The doctor at the ER called Rylee's nephrologist and she said this would be a better plan than admitting her.  So we head home.  At this point its about 2 in the morning. 

After a long night I woke up the next morning and called her doctor to see when the PICC line was scheduled to be put in.  I was told that it would be put in at 4:00 pm so I needed to arrive at 3:00.  I needed to stop feeding her 6 hours before so at 10:00 I cut off all liquids or solids.  Rylee just kind of laid around all day/morning.  She was feeling awful.  I was so ready to get the PICC line in so that she could eat.  There was no way she was going to feel better if she couldn't have anything to eat. 

Now it was time for us to leave.So we arrive and got checked in.  About 30 minutes later they call us down to the sedation room and they start prepping Rylee to get the PICC line.  After about 15 minutes of this one of the doctors comes out of the room and goes into another area to talk on his phone.  We thought it was weird but we didn't pay much attention to it.  We just thought he was using up him time until the rest of the team showed up.  (Since we had done this before we knew that not everyone was there yet.)  But when he come back to where we were he informed us that Rylee's doctor was going to make her way to see her and us (Rylee's doctor houses out of the hospital). 

Why?  This was supposed to be something simple; in and out!  Actually it was already taking longer than we thought it would.  But, whatever, the more eyes watching Rylee the better right?

So Dr. Rowe shows up (Rylee's doctor).  At this point I am back in the room with Rylee holding her hand.  She seems very out of it at this point.  She is moving around a little but not near as much as usual.  Rylee's doctor greets me with a hug and then begins to talk/look at Rylee.  After about 2 minutes of inspection she reports that Rylee was going to be admitted.  They were still going to do the PICC line but they didn't want her to go home. 

I freaked out!  I didn't understand what was going on.  How can we go from an in and out procedure to we aren't going home for who knows how long.  So I had the worst reaction that I possible could have.  I got pissed.  Instead of asking questions and trying to understand; I got mad.  What was wrong with me?

What I did know was there was nothing I could do about it.  So I just stood there and hoped they would finish soon.  I wanted to be out of this room.  I was starting to feel very closed in and that is not a feeling I respond well to.

Finally the entire team showed and began working on Rylee.  We were eventually told that the PICC line would not go in and that she would need a femoral line instead.  I felt like I was in a bubble.  I didn't really hear things that were being said to us so I let my husband do the talking.  I know I said some things to the docs and nurses but I am fairly certain they weren't the most intelligent things.

At this point I was beyond exhausted.  My mom brain couldn't handle anymore.  There is nothing worse than having a sick child and not being able to do anything about it.

To try and make a long story short - Rylee was admitted into PICU and we were told we were probably going to be there for a few weeks.  The doctors were fairly certain that she would need surgery and they did not want to let her go home until she had.  She had to get the infection completely gone before she was able to have surgery. 

At this point we were under the understanding that she just had another UTI; a really bad UTI.  After a couple days I finally found out what was really wrong with my baby.  I had been told the first day but for some reason my brain was blocking out everything. 

The reason the PICC line was stopped and the femoral line was put in was for two reasons.  #1 she was too dehydrated so her veins were shot and #2 her body was under too much stress and she stopped breathing during the procedure. 

Also, she had septic shock.  She almost died!!!!  I almost lost my baby!!!!  This is not something one expects to happen to their child.  This is not something that we expected to happen with a child with Spina Bifida.  We thought the only thing we had to worry about was the loss of function in her legs.  Boy were we wrong.

After a few days of being there Rylee started to feel much better. The docs finally thought, after ALL her UTIs, that cathing her would be beneficial.  She I was taught how to do and we did it every 3 hours.  It was tough having to get used to a totally new schedule.  It was well worth it because Rylee really started to feel better.

We were in the hospital for a week when they decided she could go home.  After much discussion it was decided that we would be allowed to try preventative antibiotics and our cathing routine before they would perform the surgery.  Since we hadn't been doing this before they thought, after our  urging, that it would be a successful plan.

So we packed and headed home to what we thought would be a healthier future.  But much like everything else, we were wrong.

The rest of the month was pretty easy going.  She had follow ups from the hospital stay and also physical therapy.  It was very light physical therapy because we all felt like she needed a break and to be able to just concentrate on staying healthy.

The cathing was going well.  It was a lot easier than I ever thought it would be.  At this point I feel like I missed my calling in life.  Maybe I should have been a nurse instead of a teacher.  hahahahaha!!!

We were also granted SSI benefits for Rylee this month.  What a blessing!

November

This month started out with her neurosurgeon.  We had an ultrasound done on her head to monitor the VP-shunt.  Great news!!!  It looks great.  No revision needed.

The next appointment we had was with the developmental pediatrician.  This was an appointment that we were pretty nervous about.  At this appointment she was looked at by a physical therapist, occupational therapist, nutritionist, speech therapist, and then the developmental pediatrician.  Everything went really well.  We were told by the physical therapist that she has improved quite a bit and that she sees no reason why she wouldn 't be able to walk.  Everyone else said she looked great.  The pediatrician reviewed everyones notes and then came in the room to speak with us.  All he could do during the appointment was smile.  He said that he is very happy with her progress and he described her as highly intelligent.  He said that there wasn't anything she needed to be working on because in a lot of areas she has advanced! 

Oh my goodness!  She has come so far since the NICU where they told us she would be mentally retarded.  She just keeps amazing us.  She is such a strong little girl.

Rylee saw the urologist a couple times this month.  The reason we saw him twice instead of once is because she got another UTI.  The cathing had been going well.  I noticed that her urine looked a little different so I called him and asked for her to be tested.  Sure enough!  UTI!  He said that we caught it early enough that medicine should be able to kick it.  He said we shouldn't worry because she is always going to have bacteria in her system and that we just need to monitor.  OK, sounds good.  I just need to trust him and move on!

The rest of the month she has physical therapist and her endocrinologist.  All of these went as normal and she is doing really well!!!

December 

She of course had physical therapy this month.  As every other month things are going well.  We are just concerned a little that she isn't crawling yet.  Our physical therapist said it isn't something we should worry about.  Since she was premature and has spent so much time in the hospital since birth she isn't surprised that she isn't crawling.  So, for now, we aren't going to spend too much time worrying about it.

She also had an appointment with her neurologists.  More good news!  He said that he didn't feel like he needed to see Rylee anymore because she is doing so well.  He said he wasn't going to discharge her just in case problems arose.  My husband and I were not surprised by this because he was only monitoring her due to her prematurity and really, as far as prematurity was concerned, it really isn't a problem.

We also had the nutritionist at our house this month.  I have a nutritionist come to the house so that I can make sure she is eating properly.  I know that children with SB often have problems with being over weight and I want to make sure we are taking the proper steps in the beginning to make sure this doesn't happen.  I do not buy store bought baby food.  We prepare our own at home so it is helpful to have the nutritionist out so she can give me tips.  I enjoy having the help and advice.

We also had our nine-month check up this month.  All is well except for the fact that we had to say good-bye to our pediatrician.  This was hard for me because in the short amount of time that Rylee has been on this earth I have struggled finding people in the medical profession that really cared about us.  Rylee's pediatrician was one that we totally trusted.  We will definitely miss her but wish her luck on her path.

Rylee was given her second set of braces this month.  (The first ones did not work well for her).  I called her orthopedic doctor and requested he review her file and see if she was a good candidate for AFOs.  He let me know that she was and that we could make the appointment to get fitted for them.  This month we were able to pick them up.

That was it for this month. 

Rylee enjoyed her first Christmas.  I think we enjoyed it more than she did but we were overjoyed to finally spend it as a family of four!  MERRY CHRISTMAS EVERYONE!

January

We of course had physical therapy this month.  Same as the previous month.  She still isn't crawling and I am still being told that I shouldn't worry about it.  So we push on....

This month we learned, from a hematologist that Rylee is possibly cyclic nuetropenic.  It is something that we need to monitor and then it can be treated by injections that I give her.  Her white blood cell count needs to be around 1200-1500 and four different times that she was tested her count was at a 300.  At this point we need to figure out if the sicknesses are causes the low counts or if the low counts are causing the sicknesses.  Either way we have added another specialist. 

I keep being told that in the life of a SB child the first year is the hardest.  SO I just keep counting down.  I would do just about anything for my kids but we are in need of a break.  I just want things to level out and be able to breathe. Little did I know it was coming very soon.  I just didn't know it would come in the form it did.

After another two UTIs our urologist decided that the best course of action would be for her to have surgery.  So she was scheduled for surgery in February 2012.  But after another (a third) UTI since we started cathing he insisted that we move it to January 24.  So we scheduled it and she would be going in for a vesicostomy very early that morning. 

Now I am nervous.  She has had three surgeries prior to this one but it still does not get any easier.  I would just have to pray that everything goes well and try and keep it together emotionally.  And that is what we did.

She came out of the surgery fine.  It took only 30 hours to be back to herself.  It seemed that my husband and I were going to be the ones that were going to have a harder time with it.  It would just take us a little time to get used to the idea that she pees from a hole in her stomach.  (Now, a month later, it is no big deal.  I hardly notice it anymore)  So the next step is to just monitor her and then when she is 5 or 6 she will have it closed and then go back to cathing.  The thought is that when she is old enough she will be able to handle the medication (she had a bad reaction to it when she first began to taking it and therefore was taken off it).  So she will begin Ditropan and cathing when she is 6.  I am told that at that age she will be doing it herself.  This, too, makes me kinda of nervous but her future is looking a little brighter.

February

This month has been the most laid back month we have had since Rylee has been born.  We didn't have any new doctors appointments or any new news.  We were told by her nephrologist that after 6 moths free of infection that she is going to do a scan of Rylee's kidneys and see how much damage, if any, was done.  Depending on the results of that will determine our next course of action.  On the low side we will just keep doing what we are doing and then on the high side she would have to have a transplant.  We are just gonna keep praying that she is healthy and that no damage, no sever damage, has been done.  So please keep her in your prayers that she remains healthy.

The one thing that has changed is that we are changing the organization that Rylee receives her physical therapy from.  Currently ECI comes to our house twice a month.  My husband and I have always felt that this wasn't frequent enough and have requested to increase it but we were told that she didn't need it more and that maybe as the time goes on that we MIGHT increase.  We have still continued to worry that she isn't crawling.  Our new pediatrician called me yesterday and told me that they found us another home health care agency will come to our house and do therapy and that it might be possible to have it up to 5 times a week.  They were also concerned that she isn't crawling.  It was nice to feel validated.  I am not awaiting a phone call from the new agency to set up an evaluation appointment.  I am looking forward to helping Rylee improve even more.

We also had an orthopedic appointment this month.  He told us that he is happy with the progress that she has made by wearing the AFOs.  Her feet have stretched out quite a bit.  The only thing he was worried about is her tendons.  He said that they are still pretty tight.  He wanted to give her 6 more months to improve before he made a decision.  If at that time the tendons are still tight then he would need to go in and cut them.  If they are too tight then she would not be able to stand well enough to walk.  Yet another thing to pray for!

She had a couple other check ups this month, including post-op, and she looks great to everyone.  We have now been 1 month infection free and it is wonderful.  We can just enjoy our baby now.  We know that the road ahead is going to be bumpy but it is so worth it.  Every time we see her smiling face we are reminded how precious life truly is and we are grateful everyday for both of our beautiful girls!!!

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.