Wordless Wednesday

realness

Tonight I am just plain mad.  I know...it isn't very becoming and doesn't make for an uplifting post.  I often think that I shouldn't blog when I am feeling down or upset, but in reality it usually helps me sort through all that is in my head.  Maybe, it isn't that I am mad...I think I am truly heartbroken.

Our day of appointments was long. We left the house at 8 and returned after 4.  We saw the orthopedist this morning and he was nice.  He reminded me of a grandfather as I sat in the office and boohooed.  He went from an informational surgeon to a compassionate older gentleman who seemed to understand the weight of my concerns.  He did a sensory test to try to determine where Eli has feeling and where he doesn't.  It appears that he has a good bit less feeling than one would expect him to have with a lower lumbar/sacral level lesion.  I watched with my own eyes, wishing he could feel the pinches...but he did not.  He also has hip dysplasia.  I guess that just means that both of his hips are easily coming in and out of socket.  We thought this might be the case.  The doctor put him in a soft brace (it actually looks like a very large cloth diaper). It has padding in it and is somewhat bulky.  It will keep his hips abducted and may help...time will tell.  He will wear it all day and night for about 6 weeks when we go back again. This afternoon we spent a good bit of time with an orthoist who fitted it for him.

After we left the orthopedist appointment we went upstairs for his neurosurgery appointment.  I cannot tell you how nervous I was when they measured his little head.  That is one way they are tracking his head growth to check for hydrocephalus.  Thankfully, his little head is growing normally so far and we will continue to monitor it for any large increases.  We are thankful to still be shunt free, although we have a long way to go.  Honestly, I am not sure you are ever in the clear, but I think if you get past a year or two your chances of needing one goes down dramatically.  They also said his little scar on his back looked great!

I have felt so mad and frustrated today.  So angry that we are dealing with this.  When we have to talk through our medical history with doctors they kind of look at us like....really??   Each time we meet with a new doctor, I feel the need to let them know that I indeed took my folic acid religiously!  I think it is impart due to my pride and probably somewhat do the fact that I always feel guilt since my body grew him. 

He is honestly the sweetest and most precious little boy.  Kev and I already love him so much and yet our hearts ache knowing that there are great challenges ahead.  I wish so much that he were healthy!  I am struggling to balance my faith and reality.  I wish there was a cure, a fix.  My heart is sad.

Newborn thoughts

It is funny how a teeny, tiny newborn can cause one's house to look like a bomb exploded!!  Poor Eli... it is not his fault, but it sure seems like newborns have lots of paraphernalia.  There are diapers, wipes, creams, bottles, pump parts, clothes, socks, blankets and stuff everywhere.  Last night I decided to take action and worked for hours trying to get our house back under some order, at least for a day or two. 

Eli is doing well.  He is a very easy baby so far.  He eats, opens his eyes a little, and then is back asleep again.  In reality, he still should have about 3 more weeks tucked away in my tummy, so I am expecting him to wake up more in a few weeks.  So far, he is definitely the easiest of the bunch.

We are so thankful for each little leg movement that we see.  The other night my mom cooked dinner for us and we all sat around watching Eli kick his legs.  We are all learning to be thankful for more and more through all of this.  I never sat around and watched Ella or Eliza move their legs.  We have seen a lot more movement in the past two weeks.  He does not appear to have feeling in his feet at this point and his ankles are very week.  We are still thankful for what he does have right now.

We have three appointments for Eli this week.  On Tuesday, we will meet with the pediatric neurosurgeon and also with the orthopedist.  Honestly, I am nervous about those two appointments and what we may learn about Eli.  I am praying that his ventricles will remain stable and that his head circumference will remain in normal limits.  We will continue to pray for no shunt.  I am also praying that the ortho will see his leg movement and that his hips will not be dislocated.  We would covet your prayers for Eli on Tuesday.  On Wednesday he will have an evaluation for babynet, which is our state's early intervention program.  This service will provide in home therapy(PT/OT) for Eli, which will be helpful to our family as well as Eli.  It is already so much harder to imagine him having to go through difficult procedures.  My love for him is growing and growing. 

I also have a whole post roaming in my head about little boys, but I am sure thankful that God knew we needed another one.

Coming out of the fog...I think!

Tonight is the first in a while that I am not struggling to keep my eyes open at 6:00.  I am finally starting to feel better and more like myself again.  My terrible swelling is finally subsiding, horrible headaches are better tonight, and my incision is healing nicely now.  I am so glad to have the past two weeks behind us and have little Eli home.

He is doing well and is such a sweet baby!  He is definitely the easiest of the 3 for now.  He has two very doting big sisters and that is the most challenging part of our days. Ella wants to be the mommy and Eliza wants to touch his head, hands and face.  I am sure the new will wear off soon.

A few days after Eli was born we saw very little leg movement.  We are praising the Lord because each day we are seeing a little more.   We are praying that the Lord will continue to heal his little body and we will praise the Lord for each little movement we see. And now...here is out two week old little cutie!

He's Home!!

Whew...I finally have all of my chicka-dees sleeping under the same roof tonight for the first time.  Eli is stretched out on our bed between Kev and I.  It is like we can finally take a deep breath!  I am so thankful to not have to make arrangements for the girls or go down to the hospital tomorrow.  I am so thankful that I get to be his mommy and be his main caregiver.  I sure hope I am ready for the task. 

Ella and Eliza were so cute when we walked in the front door.  I wish we had recorded them but they were super excited.  The excitement went downhill for Eliza when she realized that mommy would be holding Eli.  She has some big time adjusting to do!  Ella wants to be the mommy and thinks she can take care of Eli.  I am sure she will be a good helper, but I also know I will have to watch her at all times.

I do have lots of pictures to post but that will have to wait until tom.  This new mommy is going to have a long night!

Coming home soon.

This will be short and sweet because I am flat out exhausted.  I cannot seem to get my energy back.  Eli is doing well and it looks like he will be home really soon...maybe even tom.  I will be so thankful to have my family all under the same roof.  Kev and I will also be so thankful to not make daily or twice a day trips down to the hospital.  I hope I am ready for newborn days again.  It is easy to forget how challenging they can be.  Every night when my alarm goes off every few hours to pump, I remember that things are about to get more complicated.  I think my motto is going to be...slow!  Hopefully we can have some quiet and easy days at home and try to adjust to being a family of 5.

I am most excited at seeing Eliza's reaction to Eli.  She asks me daily to see (E-Li...pronounced with a short e like Ella) and she raises up my shirt to see my incision.  She is going be surprised.  Okay...time for sleep before my first alarm of the night goes off.

Eli Update

This is my sweet little Eli.  He really is the sweetest little thing.  He is doing really well and was moved up to full feeds today.  The NG tube should come out tomorrow if he does well through the night.  He also has his hearing screening tonight.  Tomorrow he has his car seat test.  Preemies have to sit in their car seat for over and hour and make sure their stable.  I guess it is time to get the car seat out of the garage, wash it and load it back into the car.  Hopefully, if all goes well he will be coming home in the next few days.

We were really excited when we heard that news this afternoon.  Going back and forth to the hospital is exhausting...the parking, the walking, the constant hand washing, making sure we have all the pump parts and milk.  Whew...we will be thankful to have our family all under one roof.

My excitement was somewhat shattered when the lady from the spina bifida clinic met with us later this afternoon.  Eli's lesion has always been labeled at L5.  Today we were told that the orthopedist said that it was L4-L5.  Then she said that the report said that his functional level was more like L3.  I think we were both very taken back.  I was devastated and Kev determined that he wouldn't accept one resident's opinion.  I am sure to many this difference means very little but in the spina bifida world it can be huge.  It can be the difference in being in a wheelchair or being a walker.  The most upsetting thing was that he thought his functional level was worse than the higher lesion level.  I am sure I am going to have to learn to not let things like this crush me....but it is so hard when it is your child.

I look at his sweet little face and I want nothing but,...normal for him.  I want him to be a normal little boy without all the struggles and issues of spina bifida.  I want him to run and play soccer and be able to keep up with his two big sisters.  We also learned that the same doctor thought that his hips might be dislocated.  This could mean a lot in the future in terms of surgery, casting, etc. 

I am scared...honestly, scared to death.  I am craving my old normal and trying to embrace this new journey we are on.  I think back to Ella and Eliza's newborn days and honestly they were the most exciting days of my life.  I hate that Eli's newborn days are overshadowed by my fears of the unknown.  Please continue to pray for Eli as well as the rest of our family.  I could really use prayer as I learn to care for 3 kids.  I am also still not feeling back to normal and I am so ready to feel good again.  Please pray for Ella and Eliza.  They have both been very clingy and I am sure having a new baby will be an adjustment for them (esp. Eliza).  Please pray for Kev as he is still looking for a job, a new car, and trying to regain his energy after his car wreck.  Please pray for Eli and his little legs and feet.  I will continue to pray that God will do more than we or his doctors would have imagined.  Thank you so much for keeping up with our family and for praying for us through this very challenging time in our lives.