Back Surgery #3

November 10, 2015, the day of my back surgery was finally here.  As I was one of the first ones to have surgery I had to be at the hospital at 5:30 in the morning.  I was taken back to get ready and then I had to wait probably close to an hour before the different doctors and nurses started showing up.  A resident anesthesiologist came and started my IV.  I wasn’t very happy with him because he didn’t bring an ultrasound machine with him like it specifically said to do on my chart.  He was kind of arrogant and said he didn’t need a machine to get my IV in, I wasn’t convinced.  He did get the IV in on the first try but had to dig around my hand a lot to get the vein.  It was pretty painful and I wasn’t impressed with him.  Soon after that my neurosurgeon came in and went over everything with my parents and me again.  My pacemaker was then checked to make sure it was good and then I was taken back into the operating room.

Once I was in the operating room another anesthesiologist came into the picture as well as other O.R. nurses.  I was given an oxygen mask to hold over my nose and mouth while the resident anesthesiologist placed my arterial line.  Since I hate the smell of plastic I did not place the oxygen mask over my nose and mouth, instead I held it a good distance away from my face.  The first attempt at an arterial line did not work so I had to endure the pain once again as the anesthesiologist tried placing it in my other arm.  Having an arterial line placed is more painful than having an IV placed.  For the arterial line an ultrasound machine was used and the line was finally placed successfully.  I always dread having an arterial line because I always have to be awake when they are placed.  If I didn’t have heart problems then I would never have to have one.  Once all my lines were in place the anesthesiologist took over the oxygen mask I was holding and put it up to my nose and mouth.  Thankfully I didn’t have to endure it there that long before I was given medicine that made me fall asleep.   Normally once I am given the medicine to make me fall asleep I am out until I reach the recovery room and slowly start to come to.  That didn’t happen this time around.  After I had fallen asleep I was intubated and then I woke up, which wasn’t supposed to happen.  I understand enough medical terminology to know what was being said by the nurses and doctors.  They were about ready to turn me onto my stomach to start the back surgery.  I was freaking out!  This had never happened to me before.  I couldn’t open my eyes and I felt like I was paralyzed.  I tried to move my head, arms, hands, and legs, anything that would let someone know I wasn’t asleep.  At the same time I was praying as hard as I could that someone would notice.  I don’t know if someone noticed or if they just decided to give me more medicine because I was soon out of it again and this time didn’t wake up until I was in the recovery room.  That had to be one of the scariest experiences I’ve ever been through. 

I stayed in the recovery room for about a half hour where I slowly started waking up and had to keep asking for pain medicine and anti-nausea medicine to help with my nausea.  I was then taken to the neuro acute care unit where I would stay, while in the hospital.  Once I was settled and made sure my parents were in the room I fell asleep again and tried to sleep off all the anesthesia.  When I woke back up I was a little more with it and then more doctors were called to set up my epidural and other pain pumps.  In order for them to get to the epidural I had to roll onto my side.  It was kind of painful, although I remember it being more painful when I was nine.   Everything got set up and I was given a button I could push whenever I was in pain.  It would administer pain medicine when I pushed it.  I had the pain pump and epidural in while I had to stay flat on my back for two days. 

During my first night my oxygen levels started dropping into the low 80’s, upper 70’s.  Every time I would drop a machine would start beeping.  Since my oxygen would drop every time I was asleep I had to wear a nasal canal to make sure I was constantly getting oxygen.  I hated it and tried to fight it but I didn’t win.  When I was awake I was able to take off the nasal canal because my oxygen would stay in the 90’s but I never stayed awake for very long.  Once I was off the pain pump and epidural my oxygen levels stayed in the 90’s and I no longer had to wear the nasal canal when I slept. 

One of the things I was dreading after the surgery was having my legs being hyper sensitive like they were the last time I had back surgery.  I was hoping this wouldn’t be the case this time but wasn’t surprised to find out that both of my thighs were hyper sensitive.  It’s a very strange feeling and extremely painful.  A single touch to my thighs would cause immense pain.  When blankets were put on me it had to be done very carefully.  The slightest touch of a blanket would cause pain.  My doctors were puzzled by this and gave me some nerve medicine to see if that would take away the sensitivity.  It didn’t.  My dad remembered a medicine I had taken when this happened to me when I was nine.  The doctors didn’t believe that the medicine my dad had mentioned was the right one because at the time it was being tested as an asthma medicine.  After doing some research the PA working with my neurosurgeon came back and told us that it did help with nerve pain.  I was given this medicine but it didn’t really help so I eventually stopped taking it.

Before I had surgery I had in my mind a vision of how the surgery would go.  The surgeon would get all the scar tissue out that had built up from two previous tethered spinal cord surgeries, I would be up and walking a couple days after surgery, and I would be home by the weekend.  Unfortunately that’s not what happened.  That first night after my surgery I asked my parents how it went.  My dad asked me if I really wanted to know.  From those words and my dad’s tone of voice I knew that the surgery didn’t go as planned.  I was told that only a part of the scar tissue could safely be removed.  The rest of the scar tissue had already fused itself to my spinal cord and is strangling it.  The surgeon couldn’t tell what was scar tissue and what was spinal cord.  Not wanting to do anything dangerous he decided to end the surgery and closed me up.  He told my parents that I can never have this kind of surgery again and he didn’t know what the future held for me.  I was surprised by this news.  It definitely wasn’t good and not what I was expecting.  But there wasn’t anything I could do about it.  The surprises didn’t end there.  After two days of lying flat on my back I was finally allowed to start moving my bed up and get into a sitting position and eventually get out of bed and start walking.  I made it to a sitting position and moved to sit on the side of my bed alright.  It was painful but I could do it.  When I got out of bed I had my dad and a nurse help me which was a good thing.  I went to stand up and I pretty much collapsed and fell back onto my bed.  I was dead weight.  It took my nurse, my dad, and couple CNA’s to get me back up in bed.  I found out that I couldn’t stand, balance, or walk.  It took me a couple of days to process this.

  The weekend came and two therapists came to evaluate me.  They helped me stand by my bed but had to hold me up because I couldn’t do it myself.  My parents and I were told that I was a candidate for rehab and that my case would be discussed on Monday.  My brother and his family came to see me and my dad had my brother help him move me to a chair so I could get out of bed.  It took a lot of strength for them to get me from my bed to the chair which was only a couple feet away.  After my brother and his family left my parents and I started discussing all the pros and cons of me going to rehab versus me going home.  The idea of going to rehab did not sit well with me.  I did not want to go.  I wanted to go home and was convinced that I would make more progress at home.  I was pretty emotional all day because I couldn’t believe this had happened to me.  This wasn’t supposed to happen.  After thinking about what to do my dad asked me if I had prayed about it.  I told him I hadn’t.  I hadn’t prayed about it because I was afraid that the answer would be that I needed to go to rehab and I didn’t want that answer.  But I decided to pray about it because I really didn’t know what to do.  My first prayer when something like this, “Heavenly Father, I can’t walk.  I don’t want to go to rehab, I just want to go home.  What should I do?”  I waited and didn’t get an answer.  I then thought about when the savior was in gethsemane and was praying to the Father asking him to take away the bitter cup but then said “not my will but thine be done.”  I decided to change my attitude and I prayed again.  This time my prayer went something like this, “Heavenly Father, I can’t walk.  I don’t want to go to rehab, I just want to go home.  But if I need to go to rehab then okay.  What should I do?”  I waited and after a minute or so a scripture came into my mind.  I turned to this scripture and continued to read past the one verse that came into my mind.  It was D&C 121:7-10.  I likened it to myself and this is how I read it.  7. Sarah, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; 8. And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes.  9. Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands.  10. Thou art not yet as Job; thy friends do not contend against thee, neither charge thee with transgression, as they did Job.   This was the answer to my prayer.  I needed to go to rehab.  I wasn’t happy but I accepted the answer.  I told my parents I got my answer and then I just had to wait to hear if my case would be accepted and if the insurance would approve rehab.

 Throughout the weekend I had different physical therapists come and work with me.  They would help me stand up and hold me up as I practiced swaying my body from one leg to the other.  They also had me do some other exercises to help build my muscle strength in my legs which was gone.  Since I figured I would be going to rehab I decided I wanted to be able to kind of walk by the time I got down there.  My dad liked to keep me exercising and working my legs and he asked me on Sunday afternoon what exercise I wanted to do.  I told him that I wanted to walk and that I wanted to take a shower.  He was all for it and he held onto me while I held onto his arms and I started to walk.  I was slow and both of my knees liked to buckle but I made it into the bathroom and was able to shower.  It felt great to have accomplished something.  From that point on I started walking more with my dad. 

My Long Journey Part 2

The week following my initial problems was a rough one.  I couldn’t work because it was really hard for me to walk and I was still in a lot of pain.  Trying to sleep at night was getting ridiculous.  I could only lay down on my bed for about thirty minutes before my leg just started hurting like crazy and would go numb.  I would get up and try to walk around but because my foot was numb I would just trip over it.  It didn’t take me long to discover that I could sleep more if I sat in our recliner and had my legs at a ninety degree angle.  I didn’t sleep great sitting in a chair but better and longer than if I were laying on my bed.  I would start out in my bed then get up when I started to hurt and walk to our living room and sit in the recliner and try to fall asleep.  This went on all week and it made it very long.  Mornings became my best friend.

On May 17, 2015 my family held a special fast in my behalf and then my dad and brother gave me a priesthood blessing.  One I will never forget.  That night I was able to sleep all night in my bed.  I went to work the next morning which was hard on me and I came home very sore and in pain. 

During the week we received a phone call from neurosurgery at the University of Utah hospital telling us that I was being referred to a neurosurgeon who worked at Primary Children’s Hospital but came up to the U once a month to see adult patients in what is known as the Spina Bifida Clinic.  An appointment was set up for me to see this new neurosurgeon on June 30, 2015, seven weeks away.  It was frustrating that my appointment was so far away but at least maybe he would be able to help me figure out what was wrong with me. 

The Friday before I ended up in the emergency room I had received an email notifying me that I had been accepted as a volunteer for Camp Hawkins (a camp for kids with congenital heart disease and their siblings).  I was so excited and felt that this was something I needed to do.  Despite the pain in my leg I worked on getting my endurance up so that I could go to camp.  My parents could see the pain I was in and weren’t sure if I would be able to do camp, but because I am stubborn I said I was going despite the pain. I knew that I was supposed to be at that camp and that Heavenly Father would bless me. My pain had actually gotten a lot better up until the day before I left. 

Camp Hawkins was amazing.  It was fun working with all the other volunteers and interacting with the kids.  I was a day camp counselor the first day, and in-charge of the little kids.  They were so fun and I had a good time with them.  I loved being at this camp because I felt like I belonged.  I met another volunteer there who also has congenital heart defects and it was great to be able to talk with her and find out that we have had the same doctors and some other things in common.  I was still in pain with my leg but I know that Heavenly Father was blessing me while I was there.  I can’t say enough about this camp.  It’s a camp that is near to my heart and I hope to one day go back and volunteer again. 

The week after camp I finally met my new neurosurgeon.  I was really impressed with him.  He listened to me and although he didn’t think my problems had anything to do with my spinal cord he still set up tests for me to do.  I was sent to see a neurologist at the U to have an EMG test done.  This test is where the nerves are tested to see if there are any abnormalities with them.  It was a pretty painful test because a needle was inserted into different areas of my leg.  The test didn’t show anything wrong with me.  No surprise there.   Both my neurosurgeon and neurologist ordered a MRI to see if that showed any abnormalities with my spine.  Since I have a pacemaker the only place that will allow me to have a MRI is primary children’s hospital.  Unfortunately they are always booked so it takes weeks to get an appointment.  One was set up for a month later, August 3, 2015. 

The day of my MRI finally came.  My mom and I went down to Primary Children’s and I found out as I was getting checked in that the MRI involved contrast which meant I would have to have an IV.  Everyone has a really hard time getting an IV in me because my veins are tiny and they hide.  It took the IV team a couple of tries and they finally got the IV in with the help of an ultrasound machine.  Once I was all set my pacemaker tech who has worked on me for years came and turned off my pacemaker and then I was taken back for the MRI.  This was the first MRI where I was able to watch a movie to help the time pass which turned out to be a good thing because it was a long MRI.   My neurosurgeon called the next day to tell us that he didn’t see anything wrong with my spinal cord.  It didn’t look like I was tethered but I did have a lot of scar tissue around my spinal cord.  This wasn’t a surprise because I’ve had two previous spinal cord surgeries so there was bound to be scar tissue.

I didn’t feel like my neurosurgeon was right, I knew something was wrong with me.  I started doing my own research.  I prayed about the things I had found and about what my body was telling me.  I strongly felt like I was tethered.  My mom also felt that I was tethered and had felt that way since my MRI.  The last week of August my mom and I went to the Bountiful LDS temple to do some temple work.  Since I was in so much pain we decided to do initiatory ordinances and then afterward go up to the Celestial Room.  When we got into the Celestial Room we were the only ones in there for about ten or more minutes, which doesn’t happen.  While sitting in the Celestial Room I prayed once again to my Heavenly Father about the things I was feeling.  I got an answer that confirmed what I was feeling.  I was grateful to have gone to the temple that day.

Since I knew the neurologist wouldn’t get the MRI results for a little bit I decided to try a nerve medicine called gabapentin that was recommended.  It’s a medicine that takes around six weeks to build up in your system before you can tell for sure if it is working.  The hope was that it would take away the pain in my leg.  I was prescribed 300 mg three times a day.  Taking 900 mg of this medicine everyday got old after a while.  It made me so tired.  I would end up sleeping most of the day and I hated it.  When I went back to see my neurologist in September he upped my dose to 1800 mg per day.  I never made it there.  After taking between 900-1200 mg a day I decided I couldn’t do it anymore and started getting off this medicine.  It took about two to three weeks to finally get off the medicine completely. 

September was a really difficult month for me.  At the beginning of the month I found out that one of my childhood best friends passed away from cancer.  It was hard on me because she had always accepted me for who I was.  She didn’t judge me and showed so much love towards me.  She didn’t care that I had health problems and I really appreciated that.  My heart ached for her family and for her little daughter she left behind.  I love my best friend and have felt her near as I have struggled with my health.  On top of this I was in a lot of pain.  I had a lot of pain not only in my leg but also in my neck and head.  It got to the point where I couldn’t really move my neck and my headaches turned into a migraine.  I tried everything I could think of to get the pain to go away.  I finally went in to a doctor who prescribed me some muscle relaxants.  Those helped a little bit.  Towards the end of the month I got really depressed and hit a low point in my life.  I didn’t want to live anymore.  I wanted to die and finally be pain free.  This feeling lasted for days.  I didn’t know how to keep going.  I didn’t have the strength to go through another day.  One night as I was feeling this way I prayed for comfort and I felt the presence of my great grandparents who are on the other side of the veil come and comfort me.  With that comfort I was able to pray to my Heavenly Father for strength to make it through another day.  I was blessed with that strength and continued to pray for it each day and received it. 

Around the end of September, the beginning of October I started to get two small pressure sores on the side of my left foot.  This isn’t normal.   It meant that more pressure was being put on the side of my foot.  When these developed I really felt like I had a tethered spinal cord again because of what happened when I was nine years old.  When I was nine I started to walk on the side of my right foot.  As I did a pressure sore developed on the side of my foot.  We discovered a little too late that my spinal cord was tethered.  Since I didn’t think that the neurosurgeon I had seen would listen to me I started to try and find a different neurosurgeon at the U and also started looking at different hospitals around the country but didn’t have a lot of luck.  One day towards the end of October I felt prompted to email my neurosurgeon and let him know what was happening.  I emailed him but figured that he would just ignore me.  But to my surprise his office called me that afternoon and set up an appointment to see him in clinic the following week.  I started to think that maybe he would listen to me.  The day of my appointment came and I again explained everything that was going on with my foot as well as some other symptoms that are common with a tethered spinal cord.  He went over the MRI with my parents and me and again told us that there was a lot of scar tissue that had built up.  He explained that when symptoms for a tethered spinal cord appear the person usually starts to decline fast.  I felt like I was, things just seemed to be getting worse all the time.  He finally thought that it might be worth doing surgery on my spinal cord.  There was no guarantee that the pain would go away but I felt like it would.  My surgery was set up for a couple weeks later.  It was a long two weeks and I could feel my health continue to decline. I was living on pain killers almost around the clock because the pain was so bad in my leg and back.  

My Long Journey Part 1

The night of May 6, 2015 is one I will never forget.  I was home alone, my mom was at a Relief Society meeting and my dad was in California on business.  After I had finished reading my scriptures I walked out to our family room to watch television.   I sat on the couch and noticed that my left leg felt like it had gone to sleep.  I thought that was weird but figured it would come out of it in a minute or two.  It didn’t.  The numbness started to get worse.  I tried to walk it out but noticed that it was getting a little hard to walk.  At this point I had the feeling that something was wrong.  I hobbled over to the kitchen and called my mom.  I explained what was happening and she told me to try and walk it out and that she would be home in twenty minutes.  I knew that I wouldn’t be able to “walk” it out.  My leg kept getting more and more numb by the minute.  I managed to get to my room where I laid on my bed and debated on what I should do.  I emailed my dad and told him to call me ASAP.  I figured he would see the email because he was always looking at his work email.  He didn’t call and I started getting more nervous.  I had the feeling that I would be going to the ER that night.  My phone battery was running low so I moved from my bed as best I could to my floor so I could plug my phone in to charge.  While I had it charging I called my dad’s cell and it went straight to voice mail.  At this point my leg was completely numb from my knee down and from my hip to my knee hurt like crazy.  Since I was alone in the house I felt like I could cry and scream out in pain because it hurt so badly.  I knew I wanted and needed a priesthood blessing so I decided to call my brother.  He picked up on the first ring and immediately knew something was wrong because I was crying.  I told him what was going on and that I wanted a blessing.  He told me he was walking out the door and would be there soon.  I figured he and my mom would arrive around the same time since my brother lives 15 minutes away.  After a few minutes I tried to see if I could move my leg so I could get up and be ready for when my brother came.  As I tried to move my leg I discovered that I couldn’t.  So I used my upper body to move myself into my bathroom where I would have something stable to grab onto to get into a standing position.  It was very difficult and when I tried to stand it was like I didn’t have a left leg and I started to collapse.  I somehow made it out of the bathroom and was holding onto the door handle of our linen closet in the hall when my mom came home.  About a minute later my brother came in and picked me up and took me out to one of our kitchen chairs.  He suggested that I be taken to the ER.   As my mom got things ready he gave me a blessing.  He had to carry me out to the car because my leg wouldn’t support me.  He then followed my mom and I to the ER at Ogden Regional Hospital where he stayed for two hours while I waited to hear what was wrong.  The doctor who was assigned to me took my medical history and then did an examination on me.  He thought that whatever was going on was because of my back problems.  He went and called the on-call Neurosurgeon who agreed and said that I should get in to see a neurosurgeon down at the University of Utah Hospital.  I spent two hours in the ER just to hear that.  We got home and my mom had to get my crutches to help me stay balanced and to help me walk since my leg was still numb and hurting.  After we finally got home (around midnight) my dad called to see what was going on, so I filled him in.

The pain was bad that night but I did manage to get at least five hours of sleep.  The next day I was still using crutches to get around.  We called down to the University of Utah hospital to see if I could get in to see a neurosurgeon but since they are a specialist I had to have a referral.  It was pretty frustrating.  My dad had emailed me different questions and things to look for in my leg, because there was the possibility I could have a blood clot.  Some of the things he told me to look for I felt like I had them.  So I went to see a regular doctor who didn’t think I had a clot but would order an ultrasound to make sure.  The ultrasound couldn’t be set up until the next day. 

On Friday, May 8, 2015 I went in for my six month check up with my Cardiologists.  My leg pain started to get really bad.  I somehow made it through my Echo (ultrasound on my heart) and by the time my Cardiologists came in to see me I was dying.  They could tell that something was wrong so they questioned me and told me that an ultrasound had been set up to rule out blood clots and that they would try and work with neurosurgery at the U.  I went and had the ultrasound which showed no clot and as I was heading back to Cardiology they called and told me to go to the ER at the U because that was the only way I could see a neurosurgeon.  I called my dad crying to tell him where my mom and I were headed.  He didn’t object and said that he was headed to the airport and would get in to Utah that afternoon.  My mom and I went to the ER at the U where I had doctors examine me and then went to consult with Cardiology about me having an MRI.  I asked for some pain medicine which I was given orally.  It didn’t do anything and I was really hurting.  I had gotten up to use the restroom and the nurses and the doctor over me could see that I was having a really hard time because of the pain.  The nurse came in to start an IV and give me pain meds that way.  She couldn’t get it, neither could the next person who tried.   Finally an EMT came in with an ultrasound machine and was able to get the IV in.  I was given some strong pain meds and they didn’t do anything but make me loopy.  One of the resident neurosurgeons came in right after I got more medicine and I had a hard time explaining what was going on because I was loopy.  I was told that they were still debating on whether or not I could have an MRI because of my pacemaker.  My dad finally showed up that afternoon and I was so happy to see him.  After another hour or so I was told that the MRI was out of the picture and I was taken back to have a CT scan of my lower spine.  I was able to move myself from the bed I was on to the table for the CT scan even though it was really painful.  The scan only took a couple of minutes and when I tried to move myself back onto the bed I couldn’t.  I was in so much pain that I just didn’t have the strength to move.  The techs in the room used a slide board to get me back onto the bed and I was taken back to my room in the ER.  Once I was back in my room I decided I couldn’t hold everything in any more, and I just started to cry. My parents let me cry and then after a few minutes my dad helped me calm down.  We waited another hour or two before the resident neurosurgeons came in to tell me that they couldn’t see anything wrong with my lower spine.  It did not show that I was tethered again and they didn’t know what was wrong.  After being in the ER for approximately seven hours, they gave me some prescriptions for a nerve medicine and pain medicine and then they discharged me.  I wasn’t very happy and was in so much pain.  Transferring from the bed to the wheelchair hurt so bad that I started crying again.

 

After getting home from the hospital I asked my dad if he would give me a blessing.  I was in a lot of pain and just wanted to be able to sleep.  I had taken some Loratab and was getting close to falling asleep when my dad came in to give me a blessing.  The blessing he gave me was very powerful and I could instantly feel my nerves calm down and I was able to sleep that night.  I slept most of the day the next day.  When I did get off the couch to go somewhere it would take me a very long time because I couldn’t get my left leg to move.  There were a couple of times where I would literally have to move it with my hands.  I didn’t understand what was wrong with me. 

Back Surgery

December 1- Back on October 20^th when the KTVX Channel 4 television news crew was doing a short documentary on the Newborn Intensive Care Unit (NICU) at Primary Children’s Medical Center, we were told that Sarah had been included in a few of the shots, but no one would say whether or not she would actually be in the documentary.  They couldn’t even tell us when or if it was going to be aired.  The answer came during the week.  There were a number of commercials during the week previewing the show that was to be broadcast tonight.  Sarah was in every commercial.  The program was titled, “Born on the Edge”.  Sarah’s story wasn’t told, but she was being held and fed by one of her nurses who explained more about all the sick babies that were in the NICU and the care being provided by the nurses.  There were some good shots of Sarah.  The program made you appreciate how ill some of these babies are and how blessed we are to have a hospital so close with the skills and knowledge to save many of them.

Sarah has been doing extremely well.  She’s off her oxygen and eating well. She’s been gaining some weight too.  We wish she didn’t have to go in for another surgery, but we’re preparing ourselves for it.  It’s not for another 2 weeks.  She will need the approval of her cardiologist before the surgery can actually take place.  That visit is scheduled for the 11^th.  She really does need the surgery, so hopefully her heart will allow it.

December 11- Had an appointment with Sarah’s cardiologist today.  She had an X-ray and an ultrasound of her heart.  There were no surprises and most importantly, no heart congestion.  He thought that she was doing very well and gave his approval for her upcoming surgery.

December 16 – Sarah’s surgery is scheduled for tomorrow, so they needed to have blood drawn today.  She cried at the poke, but that was all.  They took it from a vein in her arm.  Fortunately, it went well and we weren’t at the hospital for very long.  After we got back home, Sarah’s grandfather (my father-in-law), a close neighborhood friend, and I gave Sarah a priesthood blessing to help both her and her doctors get through the surgery tomorrow without complications.  Her mom and I also started our fast for her tonight.  In addition to all the prayers, it’s one of the only physical ways we have to show our faith and serious desires to have the Lord bless her.  It brings us comfort as well, knowing that we are trying to do our part, as little as that may be.  Our meager efforts only show our faith.  The Lord does all the significant work.  Sarah had to start her fast from formula as well, although hers wasn’t voluntary.  She couldn’t have anything but water after 2:00 a.m.

December 17- They don’t like to have the babies go for too long without food, so they are scheduled for surgery first thing in the morning.  Sarah wasn’t the first on the schedule, however, and we didn’t need to be at the hospital until 8:30 a.m.  We were a bit frustrated to learn that Sarah needed to have another blood draw.  The one done last night showed a low platelet count and they needed to know if that was an anomaly or if that was something they really needed to deal with.  A low platelet count would mean a lot of extra bleeding. 

The lab technician assigned to do the draw tried to find a vein in her right arm, the opposite arm from the one used last night.  He couldn’t find one that he was comfortable with, so he tried the arm they did last night.  He inserted the needle and missing the vein, started moving the needle around in her arm hoping to find it.  This went on for 30+ seconds with no success.  Sarah was screaming in pain, and he started crying too.  He was clearly frustrated and I’m sure, feeling a lot of stress.  He finally withdrew the needle, but after about a minute, he tried it again in the same arm.  Still no success.  I know that he was doing his best, but at this point, I was pretty frustrated and tempted to have him stop.  He called another lab technician for help.  She was obviously more experienced, or talented, and successfully made the draw the first time using the right arm, the one he couldn’t find a good vein in.  She made it look so easy. 

We thought that we were finally done with all the poking only to learn that we were just starting.  A different nurse or lab tech, not sure which, had to do a bleeding time test.  An automatic device stabbed two small knives into her right forearm.  A timer was then started to see how long it would take to stop bleeding.  It took 6 ½ minutes, which is normal.  We were told that this was all precautionary testing. 

Unfortunately for Sarah and our elevated stress levels, we weren’t finished yet.  A third nurse or lab tech came in and said they needed more blood.  They couldn’t use what had just been previously drawn.  By this time, I’d had enough and objected.  Could they really be that incompetent?  They explained that the anesthesiologist wanted an electrolyte study done which couldn’t be done on the sample already taken because there wasn’t enough.  Apparently, the study request was made after the earlier blood draw.  These people really need to learn to communicate better and more effectively so they don’t have to put these poor babies in so much distress, let alone their parents.  So once again, she had a needle put into her right arm.  Fortunately, it went quick and simple.

Sarah was given a shot in her leg in preparation for surgery.  It was supposed to make her sleepy.  The anesthesiologist came for her right before noon.  He explained the surgery to us, including his role and all the standard risks involved.  He then took her off to surgery.  At 2:45 p.m. we got a call in the waiting room saying that they were just finishing up and that we should wait for the surgeon to come and talk to us.  She never came.  At 3:45 p.m. we decided to go to the Pediatric Intensive Care Unit (PICU) where she was supposed to go after her recovery, to see what they knew.  We found out that Sarah had been there for about an hour, but no one bothered to tell us.  What a day!  

She was pretty much out of it still, but she cried out in pain with every touch or movement she made.  She was awake enough to take 2 oz. of apple juice.  They started her on a continuous Nubain (semi-synthetic opioid analgesic) drip for the pain.  The neurosurgeon finally came and informed us that everything went really well.  The fat lipoma was much larger than expected, but she got most of it without any problems.  Some bone had to be removed from some of her vertebrae in order to get to the lipoma.  She used a laser to cut it away from the spinal cord, which is more precise than a scalpel.  She didn’t think there would be any problems in the future, but only time would tell.  

Because of the nursing shift change, we didn’t get to stay very long.  I did get to hold Sarah right before we had to leave.  It was a little awkward, since the surgery was on her back and I really didn’t want to put any pressure on it.  How do you hold a baby in your arms and not put pressure on the back?  Thank goodness she was on some serious pain medication.  We hated to go home, but there was really nothing else we could do for her tonight.

December 18- Sarah did really well today.  She was taken off oxygen and had the catheter to her bladder pulled out.  I guess they needed that so they could measure her urine output to make sure she was staying hydrated and to determine her kidney output.  She’s eating again and took almost 4 oz. for me tonight.  She had a slight fever, but didn’t appear to be in much pain.  She appears to be tolerating this whole thing really well.  She actually looked pretty good tonight.

December 19- Sarah slept most of the day today.  She was moved out of the PICU into the infant ward.  When I got to her room, noticed she had been put back on oxygen and she was saturating above 90%.  That’s a normal oxygen level for most people, but not for Sarah.  With her heart problems, her average is closer to 82%.  She really doesn’t need to be above that according to her cardiologist.  So, I pulled it off and shut it off at the wall.  No need to pay for what isn’t required.  I had to explain to the nurse that she shouldn’t be saturating so high and that it was normal for her to be at a lower level.  Fortunately, it was the nurse that made the initial call rather than the doctor, so she had no problem leaving it off.  I stayed with Sarah in her new room most of the night.  She was pretty wound up the whole time I was there.  I don’t know if it was because of pain, or if she was just extra fidgety.  She didn’t act like she was in pain, she just wasn’t very comfortable I guess.

December 20- They tried to get blood from Sarah this morning, but after four attempts they gave up.  Either Sarah is an extra difficult case, or they just don’t have very good technicians.  My wife showed up soon after the attempts and was not happy when she got the report.  She is very sensitive to all the poking they attempt to do, so she went straight to Sarah’s cardiologist and had him cancel the order so that no more attempts would be made.  It worked.  Sarah’s neurosurgeon gave her a final checkup this afternoon and then released her.  Everything went really well and recovery was right on track.  Sarah is HOME and here to stay for a while.  We were really blessed that everything went so well with no complications.  It’s pretty amazing to me how fast she has bounced back from all these major surgeries, despite the problems that still exist.  She’s a pretty special girl and most certainly, she’s being watched over by her Heavenly Father.

The Beginning Part 4

October 23- We came to the hospital fasting on Sarah’s behalf.  We want this surgery to be successful and fasting is our way of showing the Lord that we have faith that the surgery will be successful.  The surgery started at 2:30 p.m.  It didn’t take too long and we were told that it went very well.  The ductus is now tied off.  There were no complications at all, unless you call a broken rib a complication.  They told us that was normal and that there really was no way to avoid it.  In order to avoid cracking the rib cage (cutting through the sternum like they do in a regular open-heart surgery), they just try to squeeze between a couple of ribs. Babies are so small, it’s almost impossible to do it without cracking or breaking a rib.  They heal quickly, or so they said.  The operating room was set up with all the equipment necessary to do a regular open-heart surgery. I guess they want to be prepared in case something goes wrong.  While she was in there, they put a second catheter into her neck (right side) as well as an arterial catheter cut into her left wrist.  We’re not really sure why they needed a second neck line since the one she already has on the left side seems to be working just fine.  The arterial line is needed to test blood gases and pressures.  She also has a chest tube to drain off any blood and other fluids as a result of the surgery.  Because the anesthesia has a tendency to slow down or stop breathing, they kept her on the ventilator (intubated) until she wakes up fully and is no longer under the effects of the anesthesia. 

  It’s easier on her too because she doesn’t have to work hard to breath.  They don’t expect her to wake up until tomorrow.  I’m grateful the surgery went well, but at the same time, I feel bad because I know she’s going to be in a lot of pain once she wakes up.  No baby should have to go through that.  Fortunately, she’ll never remember any of it in a month or two, or less if she’s lucky.

October 24- Sarah’s chest tube was no longer draining, so they removed it this morning.  Her red blood cell count was pretty low, so they gave her a blood transfusion.  They never said that she lost a lot of blood during the surgery, so I’m not sure why her count is so low.  With all the stories about HIV tainted blood that we’ve heard lately, I was concerned about her receiving blood that wasn’t donated by us.  They assured us that the blood used at that hospital in particular, is given by specific donors that must meet very specific criteria.  It does not come from random donors.  That made me feel a little better. 

They still don’t want her trying to breathe on her own, so the ventilator is still in.  I guess that also helps reduce some of the pain she would experience if she had to breathe on her own.  With a big ventilator tube down her throat, she was not going to be eating anything from a bottle, so she got her 8 cc of formula through the nose tube.  She’s very sensitive to touch and sound even though she’s still pretty groggy and not completely alert yet.  She seemed to be experiencing a lot of pain tonight while we visited.  She was given some morphine and that seemed to help.  It’s really hard for us to see her in so much pain. 

October 25- Although it’s supposed to last longer than a regular I.V. line, Sarah’s arterial line had to be removed from her wrist because it was starting to turn red.  They wanted to put it in her foot, but they couldn’t get it in.  I’m sure the effort was no fun for Sarah.  I’m glad we weren’t here to witness it.  She was wide awake and more alert today.  She only had to have morphine twice, which indicates that she’s either not in as much pain as before or that she’s tolerating it better.  She ate 15 cc by tube.  She’s definitely frustrated with the ventilator, but despite that, she looked a lot better tonight.  She did need another transfusion today.  That’s two transfusions in two days.  I hope that’s not a bad sign.  No one indicated that it was a problem, so we’re hoping that it’s par for the course.

October 26- Sarah was not tolerating her feedings well today.  Her feeding tube is going straight to her stomach and that seems to be where the problems are.  They decided that it would be better if they bypassed the stomach and went straight to the intestines.  Using barium and a fluoroscope, they guided the feeding tube to the small intestine.  Unfortunately, that doesn’t seem to be working any better.  I guess she’s just going to have to live with it for now.  She’s also been very frustrated having to have the ventilator down her throat.  We ask every day when they are going to pull it out.  The surgery was on Tuesday and now it’s Friday, so you would think that since she’s quite awake now, they could pull it out.  They really didn’t want to do it until Monday, but her nurse has been pushing to have it done quicker.  She’s a great nurse.  Maybe her efforts have finally paid off, because it looks like it may happen tomorrow.  Sarah was very fussy tonight.  Sucking on her binky calmed her down quite a bit.  If she could just get that ventilator out of her throat, she’d be just fine.

October 27- It finally happened this morning.  The ventilator tube was removed.  It was easy to see that Sarah was quite happy about it.  We were there when it happened and she handled it very well.  They still aren’t letting her eat very much and to make matters worse, none of the formula is getting to her stomach.  It’s all going straight to her intestine, so she never gets to feel as if she’s getting anything to eat.  I know she’s getting the nutrition, just not the benefit of feeling full or even having food in her stomach.  She acts really hungry all the time, which is also making her quite miserable, in my opinion.  She was pretty restless today and very hoarse.  You can hardly hear her cry.  It’s such a sad sound.  The hardest part is not being able to comfort her at all.  We really haven’t been allowed to hold her because of the ventilator.  Now that it’s out, we’re hoping that will change.  She still needs oxygen, but instead of the nose cannula, they have the oxygen box over her head.  Maybe tomorrow.  She really needs more than just a touch or stroke.

October 28- The oxygen box is gone and the nose cannula is in, so we got to hold Sarah all night.  They also removed the feeding tube, which means she gets to eat on her own now.  She still doesn’t get to eat too much yet, only 18 cc tonight.  She knocks that down in just a couple of minutes and of course, it’s not enough for her.  She wants more.  We’re hoping that they can up the amount quickly and that she’ll tolerate it well.  They detected an arrhythmia, which means her heart is beating irregularly, so they stopped giving her the digoxin she’s been on.  No need to have the heart beat stronger if it’s not beating regularly.  They think it’s just temporary.  She’s also getting her voice back.  She wasn’t as hoarse tonight.

October 29- The catheter they put in Sarah’s neck during surgery came out today.  The other one is still in.  They also took the nose cannula off.  She is now on room air.  She was up to 27 cc of formula and going up 3 cc every third feeding.  That’s still less than an ounce, but definitely an improvement.  Sarah was so good this afternoon, not fussy at all.  She even smiled a lot.  She has no idea how much that meant to us to see her happy and content after everything she’s had to go through so far.  I don’t know how much more she is going to have to go through, but for tonight, we experienced a bit of heaven.  We have all been truly blessed.

The resident doctor dropped by while we were there and said that her x-rays looked really good and that the surgery was an overwhelming success, despite the surgeon’s initial doubts.  He also made a pretty special comment; at least it was special to me.  He was very pleased with the progress Sarah was making and indicated that all the doctors involved were pleased.  He said that he really wished he could say that it was because of something he did, but he knew that it had nothing to do with him.  In the absence of not knowing how or why things were suddenly going so well, he said he was more than willing to take the credit, even though it was not his to take.  He was very humble about it.  I was very touched by his honesty and not taking credit for something that God in his mercy had done.  I don’t know if he is religious at all, but I clearly got the sense that he knew there was a higher power at work; a power that he didn’t seem to be able to explain, but acknowledged none the less.  I wanted to tell him that it was because of the Priesthood blessing she was given and the associated fasting that took place in her behalf.  That fact was confirmed to me by the Spirit when I heard his statement.  He left before I could gather my emotions and say anything.  I’m positive he sees a lot of miracles with many of the critical babies he deals with every day.  

October 30- No big changes today.  The nurses said that Sarah was cooing and talking this morning.  That’s the up side for the nurses and the down side for us.  Unfortunately, we can’t be with her all day.  We really can’t wait to get her home.  There is a blue aerosol can on the stand next to her bed and according to the nurse, she really likes looking at it.  We brought her a couple of stuffed animals to look at, which she did gaze at once in a while.  She was up to 42 cc (1.4 oz.) of formula tonight, but that wasn’t good enough for her.  She wants more.  She is one starved little girl.

October 31- Sarah was a real fuss budget tonight for some reason.  Since there are no more planned surgeries for a while, they took out her remaining neck catheter.  Maybe that’s why she’s so fussy.  She’s up to 60 cc (2 oz.) of formula and is taking every bit of it, quite quickly I might add.  She finally settled down some after we fed her.  Her blood oxygen levels have dropped a bit, so they had to put her back on oxygen.  They really want her to be as close to 90% saturation as possible.  Her need to be on oxygen doesn’t seem to be a concern, at least as far as getting her home.  They have no problem sending us home with oxygen.

November 1- Sarah was off oxygen for part of the day, but was back on again tonight.  She’s out of her bed and back in a crib.  They had her dressed in pajamas and she looked so cute.  They kept her feedings at 60 cc per feeding today for some reason.  They also put her back on digoxin for her heart and are trying to stabilize the dosage.  Her X-rays look really good and show that her heart is stable.  No heart failure at all.  We still haven’t heard any plans about when she might get to go home.  Hopefully soon.

November 2- Sarah was doing really well today and she looked really good too.  She’s still on oxygen, but that really doesn’t seem to be much of an issue anymore.  It would almost be strange if she weren’t on oxygen.  She was awake for an hour of our visit and really seemed to enjoy being talked to.  She’s still on a three hour feeding schedule, but they have moved her up to 90 cc (3 oz.) if she wants it.  She wanted it tonight.  Still no word on when she might get to come home.

November 3- We finally got some long awaited news this morning about Sarah’s release date.  They are really hoping to let her leave in two days, Monday the 5^th.  Sarah was hungry this morning and was allowed to take almost 4 oz.  By afternoon, the good news of this morning was being jeopardized, as always seems to be the case.  Sarah started a bad case of diarrhea.  They had to restrict her feedings to 65 cc.  They are culturing the stool to see if it’s some sort of infection.  This may affect her discharge on Monday.  She was really sleepy tonight.

November 4- Good news!  Sarah’s diarrhea was not quite as bad today and she’s still scheduled to come home tomorrow.  They increased her feeding limit slightly to 75 cc per feeding.  It’s not enough for her, but if it helps with the diarrhea, then that’s a good thing.  Sarah’s probably not okay with it though.  I know she wants more.  She was a very happy little girl today.  The nurse sat us down before we left and explained all about the medications she’d be going home on.  She also explained the oxygen usage and how we would keep the tanks coming.  We just need to call the medical supply place whenever we need a new tank and they’ll bring one out.

November 5- We had our first snow of the season today.  It wasn’t a big storm and it didn’t keep us from getting to the hospital.  Before they released her, they pulled the last two stitches from her left wrist where the arterial line had been.  They set up the oxygen so that she gets 0.25 liters per hour, then sent us home.  We’ve all been through a lot this past 8 weeks, but it’s been a great, though hard at times, learning experience.  We’ve had to have a lot of faith and pray harder than we’ve probably ever prayed.  I hope we learned what we were intended to learn.  I suspect that this is just the beginning of more to come, but hopefully this experience has helped prepare us better for those times.  We are so grateful and elated to finally have our little baby home where she belongs.

The Beginning Part 3

October 11- After a 10 day fast, Sarah finally got to start eating today.  For her first feeding, she got to eat a whopping 5 cc, but by the third feeding, she was up to 11 cc.  She knocked that one out in less than 2 minutes.  She seems to be enjoying the opportunity to eat again.  Hopefully her stomach and digestive tract will handle it well.  It’s been encouraging so far.

October 12- Sarah was up to 20 cc of formula tonight.  She took it very quickly.  Everything still looks good and she’s tolerating her formula really well.  Her great-grandparents visited her today.

October 13- Not much of a change today.  They are really bringing her up slowly.  She’s only up to 24 cc today.  She must be pretty hungry because it really doesn’t take her very long to get it down.  I know she’d take a lot more, but they want to make sure it doesn’t overload her intestines and cause a new NEC episode.

October 14- Sarah continues to make progress.  It’s not fast progress, but it is progress.  She drank 28 cc tonight and will go up to 32 cc at the next feeding.  She’ll have to stay at 32 cc for a while.  Unfortunately, she’s back in heart failure again.  So, the nose cannula is on again and she’s receiving oxygen to help her through it.  They upped her Lasix dose (diuretic) to try and clear it up.  I suppose we should be really concerned every time she goes into heart failure, but she’s been through it enough times already that it seems more like an annoyance rather than a serious situation.  They give her more medicine and it gets better.  It’s hard to take it seriously, even though it really is serious, I guess.

October 15- We didn’t learn anything major today.  Sarah had an ultrasound today, but the cardiology team didn’t report any results to anyone.  Maybe that means there was nothing to report, or that we won’t find out anything until tomorrow.  That’s the worst part about this whole ordeal – not always being kept informed.  Sarah is now eating 34 cc.  The next increase will be to 38 cc.  She lost 30 grams (4 oz.), which we were told is a good thing.  She’s now at 3270 grams (7 lbs. 3.35 oz.).

October 16- The Cardiologists decided that it was time to do a heart catheterization on Sarah.  It involves passing a thin flexible tube (catheter) into the right or left side of the heart.  The catheter is inserted into a vein or artery in the groin or arm.  They use x-rays to guide it to the heart.  It measures pressure and blood flow in and around the heart.  It is also used to inject a dye or contrast that can easily show up on x-ray.  That is used to determine the path the blood is taking as it is pumped through and from the heart.  They decided the catheterization is necessary because she’s just not responding the way she should with just an AV canal.  They scheduled it for tomorrow.  Sarah’s brother and sister visited today and helped me feed Sarah her 43 cc of formula.  I also gave Sarah a Priesthood blessing in preparation for tomorrow’s procedure.

October 17- Sarah went through the procedure without any problems.  She was in a pretty deep sleep when we got there.  She didn’t wake up enough to eat until after the shift change, which was just after 8:00 p.m.  Her formula allotment was up to 53 cc (1.8 oz.) and she ate it very well.  She’s tolerating it really well so far.  We got the initial results of the cath procedure tonight.

·         No high blood pressure in the lungs (good), just a lot of extra blood.

·         The ductus is open significantly and is mixing blood (not so good).

·         The superior and inferior vena cava (blue blood (oxygen depleted)) veins are draining into both the left and right atrium.  It should only be emptying into the right atrium.

·         The pulmonary vein (red blood from lungs) drains into both left and right atriums.  This was a surprise finding.  It should all empty into the left atrium.  This problem along with the vena cava returns will complicate any repair.

·         There is a small hole in the ventricular septum. It wasn’t of much concern.  They aren’t too difficult to fix (although it does often require open heart surgery), but they usually repair themselves when they are that small.

·         Only a single atrium.  It looks like two separate atriums, a left and a right, but there is no septum or wall between them.  That makes it a common atrium, meaning that the blue blood mixes with the red blood, lowering the overall oxygen content of the blood getting pumped out to the body.  The fact that the plumbing is apparently doubled up tends to indicate that she actually has two left atriums and no right atrium.  This is one of the symptoms of polysplenia syndrome (many spleens).  They didn’t actually look for multiple spleens, but the fact that she may have two left atriums means that she most likely does have multiple spleens.  That part doesn’t really matter though.  It would explain why the red blood from the lungs is draining into both the left and right atriums – two left atriums means two returns.  It doesn’t totally explain why the blue blood returns are draining into both atriums, unless that is also part of the polysplenia syndrome.  The cardiologist wasn’t really sure how or if all of this could be repaired.  Not only would a septum or wall need to be constructed between the two atriums to eliminate the blood mixing, but most of the atrial veins would have to somehow be rerouted to their normal positions.  He wasn’t sure if that was possible.

·         The aortic valve is leaky.  This is the valve that goes between the left ventricle and the aorta which carries the red blood to the body.  After the ventricle pumps, the valve should close and not allow blood in the aorta to go back into the ventricle.  The faulty valve, however, allows this to happen.  Normal pressure in the aorta is around 90/60.  In Sarah’s case, it’s more like 90/30.  This is a very serious problem and nothing can be done about it right now.  This defect is life threatening due to her size.  They didn’t say what could be done if she were bigger. 

We were reminded that these were just preliminary results and that further consultation amongst the Cardiology team would occur over the next few days.  They promised to keep us posted.  We knew that she had heart problems, but nothing like this even crossed our minds.  Apparently, it hadn’t crossed the doctor’s minds either, as they truly seemed surprised by some of the findings.  At this point, we really don’t know what to think about Sarah’s long term prognosis.  It really doesn’t sound too promising right now.  Since these are just preliminary results, maybe they’re wrong.  I hope they’re wrong.

October 18- We didn’t get to visit too long tonight.  Another cardiologist talked to us about yesterday’s procedure.  He believes that the only logical choice for now is to surgically tie off the PDA (open ductus) in order to stop the blood mixing.  He also believes that the aortic valve leak is only mild to moderate.  He thinks the initial reading was inaccurate, but only time would tell for sure.  He also thinks there’s a chance that the PDA surgery will help.  He’s also not convinced that the pulmonary (red blood from the lungs) drainage is draining into the right atrium.  He said that another catheterization will be required later on to verify it.  The PDA surgery will occur sometime next week.

Sarah had blood in one of her stool samples tonight, so they took x-rays and made further stool checks.  They couldn’t find anything wrong, but they’ll continue to watch her, just in case.  I hope she’s okay.  We really don’t need any more setbacks right now.

October 19- Sarah has been doing well all day.  No new NEC scares, but she’s still on oxygen.  She’s been eating about 60 cc (2 oz.) per feeding.  We tried to find out when her PDA surgery is scheduled for, but no one seems to know the answer.

October 20- Sarah was doing fine today.  She gained another 20 grams (0.7 oz.).  A KTVX, Channel 4 news team was doing a story on the Newborn Intensive Care Unit (NICU) today and they interviewed Sarah’s nurse while she was feeding Sarah.  They thought Sarah was cute.  We were told that they would let us know when the program would be aired.  There is no guarantee that they’ll use the footage they took of her, but her nurse said it was a pretty substantial interview and since they thought Sarah was so cute, she was convinced that she would make the cut.  We found out that her surgery is scheduled 3 days from now (Tuesday).  One of the Pediatric Intensive Care Unit (PICU) nurses showed us around the PICU and explained where Sarah will be following her surgery.  No more NICU after Tuesday.

October 21- My mother and father-in-law came to visit Sarah today.  Since they were here, I had my father-in-law help me give Sarah a Priesthood blessing for her surgery on Tuesday.  I can’t think of anyone I’d rather have help me give her a blessing.  He has a lot of faith, and that’s exactly what Sarah needs right now.  She was awake for quite a while tonight.  She’s been eating 60 cc at each feeding, which still doesn’t seem like very much to me.  But, she seems to be gaining weight with it and she’s not having any more bowel problems, so I guess it’s enough.  She’s still on oxygen, but she looks really good.

October 22- My mother came by to visit Sarah today.  She got to feed her half of her bottle.  Sarah has a hard time eating all 60 cc at each feeding.  She’s just been too tired.  We met with the anesthesiologist today and he explained the procedure as he understood it and explained the standard risks.  I also talked to the surgeon on the phone.  He’s not convinced the surgery will help her condition all that much.  That’s not exactly what I wanted to hear, but at least he was being honest.  What he fails to understand is that Sarah received a blessing by two worthy priesthood holders who called upon the Lord to have this surgery be successful.  There is an abundance of faith and prayers by family members and others in Sarah’s behalf, so how could it not help.  The surgeon is wrong.  It will help.  It’s on for tomorrow around noon.

The Beginning Part 2

September 23- Sarah was breathing faster today, but she didn’t require as much oxygen as she did yesterday.  They took more X-rays today and found that there were still some problems, although they didn’t elaborate.  They’ve scheduled another heart ultrasound for her tomorrow.  Now they’re thinking the ductus didn’t close.  Too many doctors with too many opinions.  She was too tired to eat more than 10 cc.  Most of the feedings were by tube today.

September 24- Sarah must have gotten plenty of sleep last night, because she was wide awake the whole time we were at the hospital.  She was hungry too.  She ate 35 cc all by herself from the bottle.  They take chest X-rays of her every morning.  Her heart and lungs look worse today. The ultrasound clearly showed that the ductus is still open.  No more guessing.  The doctors don’t know yet what they’re going to do next, if anything.  I don’t know if that’s good news or bad news.  Maybe they’ll know more tomorrow.  They did start her on Lasix, a diuretic that is used to reduce the fluid buildup in her body, specifically around the heart and lungs.

September 25- Sarah was moved to an isolation room today to make room for another baby.  Now she’s all by herself.  That’s kind of nice.  We have a lot more privacy.  There are a lot of really sick kids here.  They took her off the oxygen today.  That’s a good sign.  She’s eating up to 45 cc now so she can gain some weight.  They started her on Digoxin today.  It’s a medication used to help the heart pump better.  It’s in a liquid form, so she gets it from a dropper.  Still no word on what’s next.  I get the impression that they just want to observe her for a while to see what happens.  Maybe they’re hoping that she’ll just stabilize and they won’t have to do anything.  That would be nice.

September 26- One of the babies in the main room passed away during the night.  That was really sad news.  We’d met the parents a week ago, and they had a lot of hope for their child.  It was kind of a shock when we heard the news.  It made me realize just how blessed we really were, despite all of Sarah’s problems.  The death opened up a space in the main room, so Sarah was moved out of her isolation room back to the main room.  They put her back on oxygen again.  Today’s X-rays showed some improvement.  They’ve upped her formula to 50 cc and she’s been tolerating it well.  Her maternal grandmother came by to visit and was able to feed her at 3 pm.  Mom was able to feed her again at 6 pm.  She ate very well.  While changing her diaper tonight, I noticed a large lump on her lower back.  It was soft and squishy and about an inch and a half to two inches in diameter.  It wasn’t very tall, but it definitely wasn’t normal.  I asked the nurse if she knew anything about it.  She couldn’t find anything in the charts about it and had never really noticed it herself.  She said that she would make sure the doctors knew about it.  Still no word on future plans.  More waiting and watching.  It’s frustrating, but we just need to be patient.  We want her well, so if it means we need to wait, we’ll wait.

September 27- It was my oldest daughter’s birthday today, so I decided to stay home after work and spend some time with her and my son.  They haven’t seen much of us lately and they are really missing us. I figured Sarah wouldn’t mind, especially since it would give mom some alone time with her.  Not much has changed from yesterday.  Today’s X-ray looked about the same or maybe slightly better than yesterday’s.  No news on her back yet, or anything else for that matter.

September 28- Sarah was off the oxygen today and doing pretty well without it.  She still couldn’t eat everything on her own, so some of her feedings today were through the tube.  The X-rays of her lower back showed that she has an undeveloped lower spine.  We didn’t get any details about it, so we don’t know if that is significant or not.  It doesn’t really explain the lump either. We didn’t get to talk to the doctor about any of this. It was the nurse that filled us in.  She told us that a neurosurgeon has been requested to look at her.  That should happen sometime tomorrow.

September 29- It’s been two days now since Sarah has been off of oxygen.  Maybe that means her heart is doing better with the medication.  The nurse told us that she had eaten 300 cc out of 400 cc all by herself yesterday.  She was pretty tired today.  The thought was that when we take Sarah home, she may still need to be fed through the tube, so we had to learn how to put the naso-tube down her nose and into her stomach.  I didn’t think it was too hard.  Mom on the other hand still needs some practice.  We also started CPR training today.  It’s mandatory for parents with kids in the NICU.  It’s all in anticipation of taking her home soon.  Sarah’s neonatal doctor filled us in on her spinal problems.  Most of her sacrum is missing (sacral agenesis).  That means, she doesn’t have a tail bone.  A common side effect of this condition is the inability to walk normally, if at all.  They won’t really know if that will be a problem until she’s much older and starts to walk, if she can.  It can also affect the nerve bundles that exit the spine in that area.  The lump on her back turned out to be a lipoma, or fatty tissue tumor.  It’s not cancerous and is of no major concern.  Unfortunately, the lipoma got in the way when her spine was forming.  Apparently, the spine takes time to close up during development.  It kind of starts out like a stalk of celery, and then over time, it grows together to form a tube around the spinal cord.  During that process, part of the lipoma got caught inside as the spine continued to close up.  There is a hole in the lumbar area where the lipoma is.  The concern is that the portion of the lipoma that is caught in the spine is pressing against the spinal cord.  They call that spinal cord tethering, because the cord is stuck, or tethered, and can’t move up the spine as she grows.  That can cause serious nerve damage and major complications.  They will need to do a Magnetic Resonance Image (MRI) before they can verify that it really is tethered, but they are pretty certain that it is.  It sounds like she will require surgery on her spine.  Thankfully, it can wait for a month or two.  The other side effect of no sacrum and a tethered cord are bladder and rectum control, or lack thereof.  Again, it’s still too early to know if she will have problems, but the neurosurgeon is pretty confident that things won’t be normal.  I asked the doctor why this problem wasn’t discovered before and he said that it was most likely because her heart problems were of such a concern that no one was really worried about anything else.  If I hadn’t noticed the lump, it might have gone undiagnosed until it was too late.  I don’t blame the doctors or nurses.  They’ve been doing a great job.  I’m just grateful that my eyes were opened to the problem.  I don’t think it was an accident.  I know the Lord is watching out for our Sarah.

September 30- No real changes to speak of today.  Sarah is still off oxygen and doing pretty well without it.  She only ate 15 cc out of 50 cc while we were here.  Hopefully she eats more when we’re not here.  We finished up our CPR training today.  There wasn’t much to finish.  Now, we’re qualified to do CPR on Sarah if it becomes necessary.  We’ve done our part.  Now the hospital just needs to release her so we can take her home.

October 1- Got a call at 1:30 a.m. from the hospital.  That’s not really the way you want to be woken up.  A call at that time of the morning is never a good one.  The nurse reported that Sarah had blood in her stool and they needed permission to give her a spinal and bladder tap.  I’d never heard of a bladder tap before.  They had taken an X-ray and it looked very suspicious.  I gave permission, then struggled to sleep the rest of the night.  They took another X-ray later in the morning which verified that she had Necrotizing Enterocolitis or NEC for short.  NEC is primarily seen in premature babies, although it is not exclusive to them.  NEC is the inflammation and death of intestinal tissue that may involve just the lining of the intestine or the entire thickness of the intestine.  It shows up on X-rays as gas bubbles in the intestinal tissue.  In severe cases, the affected intestine has to be cut out, because it is literally dead.  We were aware that this would be a possibility, but since she had been eating for so long, we really thought we were past that.  Sarah’s older sister was premature and we learned all about this complication with her.  The doctor didn’t think it looked too severe yet.  He also thinks that her heart problems may have contributed to the problem.  They want to make sure that no excess gas gets into her bowels, because that could cause them to perforate (tear open), and that would be really bad news.  So, unfortunately for Sarah, it means that she can’t eat for the next 10 days.  She’ll also have to be on antibiotics for that period of time as well.  That means it will be at least another 10 days before we can take her home, assuming it doesn’t get worse and nothing else unexpected shows up.  On the bright side, everything else looks good.

October 2- Because Sarah won’t be eating for a while, they started her on a vitamin fortified IV which also included some fats.  It won’t fill her tummy, but her body won’t starve.  They also put in an Anderson tube, which is a stomach tube that is placed through the mouth.  It is attached to suction device that provides periodic suction.  They have to keep everything out of her stomach, including the gastric juices, so that nothing will pass through to the intestines.  This gives them a chance to rest and reduce any risk of gas buildup.  She slept the whole time we were there.  She’s still off oxygen and in general, doing pretty well.  Nothing has really changed since yesterday.

October 3- We were kind of surprised when we saw Sarah today with an IV in her neck.  They explained that the IV in her arm would have to be replaced every couple of days because the veins just don’t last that long before they collapse.  That’s not a problem when they use the neck.  It was the only way they could keep getting her IV solution to her easily.  My father came by to visit, so I took advantage of the situation to give Sarah another Priesthood blessing, specifically to heal up the NEC.  She was pretty fussy until we finally started holding and rocking her.  I always worry that if we aren’t careful, we’ll end up pulling the IV out.  It’s pretty taped up, so it would probably be difficult to do, but it still makes you extra cautious.  She looks pretty good.  The neck line really doesn’t seem to bother her.  It probably did when they put it in though.  She occasionally needs a breath of oxygen, but at least it’s not constant.

October 4- Not much change today.  Sarah has gained some weight, a whole 40 grams (1.4 oz).  It doesn’t seem all that significant until you remember that she’s not eating anything.  If she doesn’t lose it again, that will be good.  We rocked her for a while and she seemed to enjoy it. My mother came by to visit with her today.  Besides parents and siblings, grandparents are the only ones allowed to come and visit.  At least, that’s the policy.  I don’t know how strict they are on enforcing that.

October 5- Nothing new today.  It really is just a waiting game now.  The test for blood in Sarah’s stool was negative today.  Since she’s not eating, I’m not really sure how they are getting a stool sample.  They wouldn’t be coming on any kind of frequent basis, so I guess they aren’t going to be able to test it often.  But, no blood is a good sign.  Sarah’s other Grandma, as well as her Aunt, visited today.  It’s really nice to have family close by.  They have been tending the other kids for us when we come to the hospital.  They’ve been a tremendous support.

October 6- Blood test in the stool was negative again today.  The X-ray of her intestine also showed improvement.  Sarah did gain too much weight though.  I guess that means she needs to go on a diet.  Less than a month old and she already has to worry about dieting.  They really didn’t say what the solution was or how much she actually gained.  Her lung X-rays showed some congestion.  Her Lasix dose was upped to try and get rid of the excess fluids.  She seems to be doing really good.  She may be able to get her stomach tube out by tomorrow.  She was awake for our entire visit.

October 7- They removed the suction from her stomach tube.  The tube is still in, but now it’s just using gravitation to keep the stomach pumped out.  That’s a step in the right direction.  Her NEC is getting better.  No mention of the fluid buildup in her heart and lungs, so the Lasix must be doing its job.  She continues to do well.  She was awake again for our entire visit.  Her maternal grandparents visited again today and brought Sarah’s great grandmother along as well.  She’s had a lot of visitors this week. 

October 8- Sarah is still doing really well.  She had her MRI and Voiding Cysto-Urethrogram (VCUG) tests today.  The MRI was for her spine and the VCUG was for her bladder and kidney.  The VCUG test uses a catheter to fill the bladder with a contrasting agent.  X-rays are then taken to determine the size of the bladder and urethra as well as whether or not there is any reflux – a condition where urine from the bladder goes up to the kidneys.  We’ll know the results on the 10^th.  She was awake for most of our visit.  Only another day and a half of the drainage tube.

October 9- Sarah finally got the Anderson tube out of her stomach, a day earlier than we expected.  She’s been acting very hungry and sucking very hard.  If everything looks good tomorrow, she may be able to start eating again.  We’re very optimistic, but not surprised that she’s doing so well.  That’s the power of good doctors, good medication, and most importantly, the Priesthood.  She pretty much slept most of the time we were there tonight.  That’s okay though.  That probably keeps her mind off of how hungry she is. 

October 10- Sarah finished up all her antibiotics today.  Her blood test showed that her red blood cell count was down to 30.  It should be 45, so that’s a pretty significant drop.  They had to give her a blood transfusion to get her count back up.  This was to hopefully prevent a recurrence of NEC.  They didn’t say what could have caused this.  Normally it’s because of internal bleeding, so maybe it’s because of the bleeding in her intestine caused by the NEC.  That’s just my guess though.  She did look more white than pink.  We got to meet with all the doctors today.  The MRI showed that her spinal cord is definitely tethered and will require surgery whenever her heart is stable enough.  The VCUG test showed that there are possible bladder problems, but nothing serious.  They really didn’t go into any more details.  We will probably have to wait until she’s a little older before we learn too much more about that.  The great news is that they hope to discharge her in one week.  Finally, the end is in sight.  It was a very encouraging night.