Wednesday, February 29, 2012

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.  :)


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)


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)


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.

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.


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.


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!


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!!!


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!


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.


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!!!


  1. Darling Riley....You continue to teach us grown-ups that grace can carry one through anything! You are beautiful and loved little one.

  2. What an amazing recap of such a long road. Your strength and Rylee's grace during these times are a miracle. God watched over my angel (sister;) and yours (Jim,Averi,& Rylee Jo) with so much love! I miss you and cannot wait to see ya'll.