One year post diagnosis

I have literally tried to write this post 5 times.  I have 5 different drafts saved and can't for the life of me seem to get my thoughts expressed.  I want to remember how far the Lord has brought us since March of 2011. 

When we received Eli's diagnosis of Spina Bifida at 16 weeks into my fourth pregnancy, it was my worst fear in life...happening.  After losing our first baby in 2006, due to a rare unrelated birth defect, the thought of something happening to another one of my babies was honestly my very worst fear.  Although I feared this, I never in a bazillion years thought something else would go wrong.  Especially since I am by nature a rule-follower and always tried to do all I could to ensure a healthy baby.  Even to the point of being a little extra crazy about it. 

And although the pregnancy was horrific: fetal surgery at 22 weeks, bedrest, hospitalization for the final 4 weeks, and etc., etc.  I can honestly say that it was all worth it.

God has and is doing so much in my life and a lot of it has to do with Eli.  I have never prayed more than I have this past year.  Not just begging God to bring healing to his little body, but also praising God for each little change, growth and normalcy that we experience.  My heart is so filled with praise for all the little and huge prayers he has answered.  My faith has grown through the difficult days, seeing God answer and bless us.  I am learning to live each day with expectation that God is going to do great things.  I watch expectantly for little toes to move, for legs to feel stronger, for Eli to do something he couldn't days before.  My heart is so filled with love for Eli.  Who would have thought I would love having a little boy so much!   I do!  I even love shopping for him.

Our family has CHANGED...for the better and it is because of Eli.  I remember the day Eli was diagnosed and through a bunch of sobs and tears I asked what would be the best and worse case scenario for Spina Bifida.  I had no clue what it really meant, what to even expect and I really wanted to know it I was going to lose this baby too.  I will never forget the answer.  The reply was that the best case scenario for our family and our girls would probably be if this baby didn't make it. 

I know the person who said this was saying it because she herself hurt that we once again were facing such a diagnosis.  In her mind, she knew some of the struggles ahead and felt it might be too hard...although she clearly knew from our past history that we would never terminate a pregnancy... No Matter What!!  We have walked that road and very passionately believe that God is the giver of life and only God can take life. 

She said the statement knowing the struggle, but what she didn't know was the help, strength, support of the Lord.  She didn't know the power of a family lovingly committed to do WHATEVER it takes.  She didn't realize the power of a church, friends and family who pray.  She didn't know that God can take the most terrible situations in this yucky life and bring such good from them. 

She also didn't know that two little sisters would be CRAZY over their baby brother.  She didn't know that they would grow up going to hospitals and clinics and would grow to have a heart for those who are different.  She didn't know that at four and two they would pray fervently for their brother and for other kids that they see.  (They have prayed each night for a little boy they saw two months ago at the ortho doctor.  Every night at bedtime Eliza says, "I pray the little boy hurt his leg."  Then she says, "Mommy what happened that boy?"  We are working hard to learn to not give stares and to wait and ask such questions about people who are different when we get back in the van.)  She didn't know that having a brother with special needs wouldn't hinder their little lives but rather enhance it drastically.


Ahhh, one year later.  So thankful to be here.  Despite all the hurdles behind us and the ones that are looming ahead, we are very blessed.

Baby Clothes

Yesterday I took a ton of Eli's little, baby boy clothes to Once Upon a Child.  It just about killed me.  I almost felt the need to explain how special each little outfit was to me and just how tiny he once was, but I refrained.  I almost ran back out the door with my containers, and then I thought about going back and repurchasing the clothes.  Kev keeps reminding me that they are just clothes, but they are sentimental to me.  I know it is time to let go of the old and make room for the new.  The baby days sure do go by fast! 

8 months

On Monday our little man turned 8 months.  His adjusted age is 6 1/2 months.  It is hard to believe that it has already been 8 months since that big day in the midst of a long hospital stay.  Last week we also hit the one year mark from when we recieved Eli's diagnosis with Spina Bifida.  It is surely a day that will be forever etched in my mind. 

First, a little Eli update.  At 8 months Eli is now sitting up pretty well on his own.  In PT this week we are working on side sitting and sitting with his legs bent.  When he sits he keeps his legs straight out and so we are narrowing his base to make it a little harder and help him to sit better.  His PT has been upped to every week now since he is getting older and to the point where he will need it even more.  We have also added in OT too and should have that evaluation soon. 

In the last week or so his little legs have gotten stronger and a little better at bearing weight.  I noticed it first on my own when working with him one morning.  I stood him up as I always do (with lots of support and he planted his little legs and locked his knees.  Our PT felt that he was stronger too and so I knew it just wasn't my wishful thinking.  We have a long, long way to go but I am thankful for any progress.  This is truly and answer to prayer because I must ask the Lord 100 times a day to strengthen his legs. 

He also got his first pair of teeny, tiny afo's this month.  They keep his right ankle from rolling and definitely give him extra support in his lower legs. This is the beginning of a lifetime of him wearing them.  They also make his feet and legs pretty sweaty.  I hate that he will be so hot in them in the summer and I sure wish his little feet could wear crocs and sandals.  It is just part of life that we will all adjust to.

I have continued to monitor his head circumference in between neuro appointments and the rate of growth has drastically slowed down since January.  We praise the Lord for this.  Although hydrocephalus can develop at any time, the longer we can go without it the better the chance is that he won't develop it.

Little man is not a big fan of baby food.  He was doing good until he got RSV back in February and that was a big set-back.  We are finally making progress, but he shakes his head NO everytime I initially try to get him a bite.  The good news is that he is no longer crying and is now moving it around in his mouth and swallowing...so that is good.  He does love his milk and when I pump he does good at holding his own bottle.

Uh, mama are you just gonna take pictures or help me!

My two best boys!!

He continues to be such a sweet and loving little boy.  He loves to be held and snuggled and is a very happy baby.  He loves to watch is sisters and can now wave.  We love him so and pray that he will be all that God wants him to be.

I have tried to write a post about being 1 year post his diagnosis about 4 times, but still can't find the words to sum up my feelings.  Going to try again another day. 

Family Updates

1.  Eliza has been a full-time potty girl for almost 3 months.  She was a breeze to potty train.   I am giving myself absolutely no credit on it at all.  She was begging to wear panties, telling her Sunday School teacher that she needed to use the potty, and I kept putting her off.  I guess I was just dreading the running to the potty deal a million times a day.  On day 1 she told me she needed to poop and she wanted me to go out of the room, sure enough she did.  I even told her that surely she was done and she kept insisting that she had more poops.  I got her off and clean and she ran back jumped on and finished her business.  That is when I knew the second time around was going to be much easier than the first.  No little potty or seat for her.  I learned the first time that it is too much mess to clean. She has done super using the big potty and I am so proud of her!

2.  Eliza also said good-bye to her sassy(paci) in January!  If there was anything I was dreading it was this!  I put it off for way longer than I should have, but life just kept happening (broken arm, cold, Christmas, traveling, etc).   I prepared her a few days before and we said we were going to send them to her new baby girl cousins because they were little and had no teeth.  She cried for about 10 minutes the first night saying that she could have a sassy at bedtime.  I stood strong and once we got past that first night there was no turning back.  Needless to say, these were two of my big hurdles to jump with her this year and I am thankful to have them done.  Honestly, I am still a bit sad that she is getting so big.

I think Eliza looks a lot like my sister Joy in this picture.

3.  Ella is staying busy being being Ella.  She is loving bike rides and going to the neighborhood park.  She is a great big sister to Eli and he loves her!  In fact, he will laugh at her more than anyone else.  She loves to act silly to get him laughing.  She also loved the Upwards season at church this year.  She was not yet old enough to play or cheer, but was given an extra uniform.  She was determined that she was on a team and would ask us weekly what time her coach needed to be there.  It was all we can do to keep her in the stands. She has been working hard on coloring, writing letters and a few words.   She continues to be full of life, drama, and love.

She dresses up daily in some fancy fashion!

Their favorite after nap activity!

Eliza prefers for daddy to push her bike! 

3.  Our church voted in January to bring Kevin on part-time as a bi-vocational staff member.  He is now the associate pastor of Sunday School and Small Groups...with an emphasis on marriage and family.  This was a blessing to our family as he is getting lots of good experience while finishing seminary.  He is staying BUSY working at church and doing side work whenever he is not at work.  We are thankful that the Lord continues to provide and bless even though on paper it seems a little crazy!

4.  Speaking of Kevin...he is down to his final year (8 more months to be exact) of school.  He is set to graduate (unless something unforeseen happens) with his Masters of Divinity with an emphasis on pastoral ministry this December.  You just do not know how thankful I will be for that day.  It has been a long process with a lot of studying and a lot of letting him study, and I am so thankful to see the end in sight.  Now, if he speaks of a doctorate...I may kill him!

5. I am teaching a small group on Wednesday night.  It is The Resolution for Women by Priscilla Shirer. It is stretching me each week and I tell the Lord if he doesn't help me it will be a total flop.  Depending on the Lord is good....and hard.

6.  Eli is the sweetest little chub.  I posted these on facebook the other day but they are too cute to not make the blog too.

                                       

My Funny Little Valentines!

I love Valentine's Day. Most likely because I love red and pink heart tights and dresses, little pink sprinkles scattered ALL over our kitchen floor (well..maybe not), and because it is a normal day that we get to make a little extra special. This year I started a new Valentine tradition adapted from one of my sisters. I made each member of our family their own home-made valentine. On each I wrote a personal letter to them telling them all the things I love about them and they ways they are uniquely special to me. Kev read each valentine out-loud while they ate a very special valentine breakfast (a doughnut)! I loved watching each of their faces light up as they heard them. Definitely a new valentine tradition we will keep!

7 Months

I have been a lazy at updating my blog, but I have a good little reason.  Little man has been SICK!!!  About three weeks ago he was sick with a cold.  It wasn't a bad cold but just one that caused him to be congested.  Just as he was getting over it I noticed that it seemed that he was taking another one.  It didn't take long for me to realize that it just wasn't another little cold.  He began coughing and wheezing a lot.  He was SO congested and just plain miserable.  We saw our pediatrician several times as the wheezing was a bit scary to me.  He was on both steroids and the nebulizer every four hours.  We thought he was turning the corner last Wed. and Thursday as RSV usually gets worse around day 3-4.  On Thursday night I was nursing him and he began vomiting like crazy.  He couldn't stop.  He wasn't just milk, but tons of mucous.  It was pitiful.  He was laying on our bed while we were cleaning things up and we noticed that his color was off.  He was pale and very limp.  We pick him up and of course we were making sure he was okay.  We noticed his lips looked bluish and he just was so so pale and weak.  We decided to take a little visit to the children's ER.  I am not an alarmist and that was the last thing I wanted to do at 8pm on a Thursday night, but I was getting pretty worried about my little guy.  Of course the ER was packed full of sick kids and I we tried our best to keep Eli isolated as much as possible.  They got him back pretty quick and he was still throwing up and choking on mucous (sorry if you feel a bit sick by this post).  Once they got his vitals they used their vacuum thing to clean out his nose really good.  Let me tell you...it works way better than my bulb syringe.  Once they did that his oxygen levels began coming back up to normal.  They said that most likely some mucous was obstructing his airway.  Of course they also wanted to keep him and observe him...so we spent the night at the hospital.  He was fine after that and we got home around 10pm the following night.  Kev and I both were climbing the walls and so ready to get home.  We both said we had no idea how we had stayed 34 nights there this summer.  It was only by God's grace that we made it.

Okay, so back to my little man.  It has been a rather slow recovery.  It is taking forever for him to get rid of all the congestion, which we have been told is normal.  I am trying to be patient, but I am really really ready for him to feel good again.  I am also ready to pack up the nasal aspirator, nebulizer machine, and for Eli to sleep through the night again.  When a little one is sick, it really throws everything off.

Poor buddy!

Eli is now 7 months as of this past week.  His adjusted age due to his prematurity is a little over 5 1/2 months.  Writing that each time makes me feel a little better.  It has been hard for me as he has turned the corner from 6 months.  I know the next six months will be more defining for Eli and his disability.  He will no longer be a little snugly baby in a carrier and the milestones ahead are going to be HARD!

This has been the first month that he has noticed his sign!

Everything goes in the mouth!!

I feel like my life is very much consumed with working with Eli.  My days are busy and every free second I have I feel like we are on the floor working on sitting, rolling, and his goals.  I really took for granted how easily my girls learned to move and reach milestones.  They just did it!!  I want Eli to be all that he can be and so I am committed and focused to help him as much as I can.  It is a balancing act between letting him just be a sweet little baby and enjoying him, and then working to help him get stronger. 

We started some solids just before getting sick...we've stopped until he is completely better.

This is his play mat!!  It has scripture embroidered on it and it provides lots of encouragement for this momma.

We are doing e-stim therapy at home 3x a day for 15 min. each time. 

Our Pt loaned us a unit to use at home and programs it each week.  All I do is add the electrodes and turn it on.

Speaking of getting stronger...little buddy learned how to roll from his back to belly this month and is also sitting much better independently.  I will tell you that both of these things have been hard for him.  We have worked a ton on sitting on a big exercise ball to help strengthen his core and we have practiced rolling again and again.  I honestly do not know if Kevin and I were ever more excited about anything than when Eli rolled form his back to his belly!!  I am talking the whole family was jumping and cheering!  While each milestone is so much harder...each one is so much more celebrated!

True love!!!

Eli continues to be such a sweetie and we are so proud of him.

Six

It is hard to believe that it has been six years since that life-changing day at the very end of January.  Six years since I last held my firstborn.  Six years of grace, blessings, tears, triumphs and trials.  Six years without our big boy.

Ella wanted to bring her pom poms and do a cheer for  Samuel. 

I did something yesterday that I hadn't felt like doing in a few years.  The house was quiet as the girls were at mother's morning out and Kev at church.  It is kinda strange how you can long to look through something and yet hate too at the same time.  I got out his little box filled with all the memories of him.  His little blood tinged hospital blankets, his tiny newborn hat.  The hankie my sweet friend made me that I used at his funeral.  I looked through his pictures and stared at his tiny strands of hair that were taped securely to a paper for safe keeping.  I held my sweet Eli and thought about my sweet Samuel.

Every year we release balloons on his birthday.

It is hard to picture him now!  I often wonder what he would look like as a six year old.  I wonder so often how it would have changed our family dynamics for the girls to have had an older brother.  I try to imagine having 4 children and I am sure life would be different and busy.

Eliza didn't want to hold hers...I think she was scared of flying away with it!

I am not totally sure why God has allowed us to struggle so much with pregnancy loss, birth defects, and difficult pregnancies, but I know for some reason this has been a huge, huge part of our last 6 years.  I pray God will continue to use our journey to encourage others.

At four Ella is understanding more about heaven and that she has a big brother there.

Beautiful flowers given by Kevin's parents.

So for today, I will remember those sweet little footprints that left such a huge impression on my heart.