3 Months

My Sweet little Eli turned 3 months a few weeks ago. Due to the fact that he was 6 weeks early his adjusted age is now almost 2 months (since this post is a few weeks late).  I have to say that Mr. Eli is the absolute best baby!!  He is just the sweetest, most laid back little guy.  He is very content unless it is time to eat!  I have to brag on him because this month he went from being solely a bottle fed baby (breastmilk) to a nursing baby.  I was doubtful that we would be able to make the shift so late, but a week before we left for vacation I decided to give it another try (the idea of washing bottles and pump parts in a hotel sink for a week was good motivation).  I was shocked at how great of a little nurser he was!  He has proved to be such an adaptable little guy and we are so proud of him. 

1 month

2 months

 Eli started sleeping through the night at about 8 weeks (I told you he was the best baby ever)!  Generally he is sleeping from 9:30ish until about 6:30ish.  It is great to sleep again!!  He has started having longer awake times during the day, but still usually takes a nap between each feeding.  He has recently started giving us big smiles and is cooing a lot.  I must say that this seems to make all of my worries go away for the moment. 

At his last check-up he was 11lbs 6oz.  That is only the 3rd percentile for a 3 month old, but is much higher on the preemie growth curve.  His head circumference jumped a little on the growth chart.  He gave us quite a scare when the Neuro got an inaccurate measurement.  They pretty much had us scheduled for a shunt on Wednesday.  I called back and finally figured out that they were looking at the percentile number as the actual cm measurement.  Anyway it made a big difference and after I had cried for about 3 hours over this, I was very relieved to learn that it was a mistake!  If you pray for Eli, please pray that his head would continue to grow as it should.  We are praying we can avoid a shunt.  We are currently checking into all of our options in case we have to go down that path.  He will have a sedated MRI in a few weeks.   

This was a big month for his little feet.  He went through two sets of casts, had a procedure on his heels and graduated to some new boots and bars.  I am sure you can tell how much straighter his little feet look in comparison to his 1 and 2 month pics.  We have spent a lot of time at our ortho in the past few weeks. 

Eli is so loved by his big sisters.  They both love on him ALL THE TIME!  If you try to talk to Eli in front of Eliza she will boldly tell you, "No my E-li"  (pronounced with a short e).  It is so funny because she is normally so shy.   

Eli went on his first vacation to the mountains. 

Tummy time, tummy time and more tummy time. 

A sweet little smile

These are his shoes (we call them his snowboard)!  He originally had to wear them for 23 hours a day.  At his last visit they said he can go to about 18 hours a day now.  It is nice to get to take them off some now.  He hasn't seemed to mind them too much.  He will most likely wear then for a long time during the night to help keep his feet in the correct position.  So far so good.

Eli has some big appointments in November.  I must admit that I feel fearful over these, esp. with the holidays ahead.  We covet your prayers over his kidney's, bladder, head growth and always his sweet little legs. 

Remember

Last week we took a much needed vacation.  I don't think Kev or I had ever been more excited to get away!  Before we left I checked the forecast and it looked like lots of rain.  We didn't even care...we just needed a change, some time away from appointments and some relaxation (or as much is possible with 3 small kids).  We had a great week and enjoyed our time together as a family.  Unfortunately, Eliza took a fall on Thursday and broke both bones in her left arm.  Our week without appointments ended with a 6 hour ER visit.  She is doing well and will get a pretty pink cast on Wed. once the swelling is gone (she just has a soft cast and splint until then).   She has been a trooper. Mommy on the other hand still feels quite shaken and fearful.

There is lots that I want to update my blog on.  Ella turned 4, Eli is now 3 months, our vacation, but today I want to remember.

October 15 is the National Pregnancy and Infant Loss remembrance day.  In the midst of this crazy roller coaster of a year, there are days when my mind drifts to the past....days of sorrow and grief, days waiting, days of loss.  There are days when I wonder what it would be like to have a 5 year old, 4 year old, 2 year old and newborn.  Days when I wonder what he would look like as a big boy.  I wonder what his personality would be like.  I wonder how he would have changed our family.

Remembering how God used our loss to draw us closer to himself, knowing how he orchestrated events as only He could, and how he brought healing and joy back into our hearts, causes me to trust Him easier today.  On days like today when the cares of the world seem to overwhelm, I need to remember God's faithfulness to me in the past.  I need to remember that he restores, He has a plan, He knows the desires of my heart.
Today I remember my Samuel. 

Our Backyard Carnival

Ella and Eliza's birthdays are two weeks apart.  Ella really wanted an Angelina Ballerina party and if you asked Eliza she would say a "Melmo" (Elmo).  I decided for many reasons that this year we could only have one party.   We (I) decided it would be a little backyard carnival.  I found tons of cute ideas on-line and found all of my decorations at the dollar tree.  Kev was in charge of the carnival games and of course he took his task very seriously. 

We had yummy carnival food (hot dogs, corn dogs, cotton candy, candy apples, popcorn and nachos and cheese.) The night before I felt terrible because all the food was terribly unhealthy and pretty much a choking hazard, so I sent Kev to the store for some fruit. :)

Last year we had Ella's party from 10:30-12:30.  I thought it was a great time for a kiddie party.  This year (with a new baby) it made for a super busy morning trying to get it all together.  Thankfully we made it by the skin of our teeth. 

Ella had a great time and said her favorite part of the party was blowing out her candles.  Eliza was overwhelmed throughout most of the party, but began to warm up as the party ended.   Once it was over she got in the jump castle and loved it!

The other highlight was a special visit from "Lou Lou" the clown.  Lou Lou who is otherwise known as Louise.... is our Associate Pastor's wife.  She has always been like family to us and the girls love her dearly.  We think we have a new ministry for her...clowning!

  It was a fun morning and I am so thankful for our friends and family who celebrated with us!

Why him??

Tonight I am writing from a place of frustration and discouragement.  I often avoid my blog when I feel this way...but hey, it is part of the journey and tonight I need to sort through the hurt that I am feeling.   I am so in love with our little boy and that there is the hard part.  His sweet little face, his precious little smiles, the way he calms to my voice and knows I am his mommy.

Today we had yet another appointment downtown at the ortho.  Honestly all these appointments are really beginning to wear on us.  They require a lot of planning, rushing like chickens with our heads cut off,  and they take forever. We have had so many lately and I don't see them slowing down for a while.  Today we went for Eli's second set of cast.  The first set really helped at first, but after about 3 days we really began to see a lot of regression.  Our physical therapist really wanted to get another set on soon so that we didn't lose what had been corrected.

 At his appointment this morning the doctor mentioned wanting to do a procedure to cut/lengthen his tight heel cord. I knew this was very likely as it was very tight.  Then he said he'd like to do it today prior to the casting.  I really didn't know what to say.  I am no expert.  I have been warned about doctors wanting to operate too much and to beware...but it seemed rather non-invasive.  In fact, he said he could do it in the office without anesthesia.  We decided to go ahead and prayed for wisdom as we were making a quick decision. 

We rushed home, fed the girls and rushed back downtown to the hospital.  I couldn't watch and had to walk out and thankfully daddy held Eli's hand.  The good thing is that he didn't cry...the bad news is that he didn't cry. Clearly, he had no feeling in that part of his heel/ankle.  I stood outside the door praying for a scream...and yet praying he wouldn't.  Sometimes this journey still knocks the wind out of me. 

Some days I think if I could just wake up and Eli not have spina bifida...life would be perfect...almost as if I could live again.   I find myself angry and jealous of people who are living life "seemingly" easily.  People who have happy pregnancies and healthy children.  People who have babies who kick and move their toes.  I have lately felt the urge to walk up to random strangers and tell them how lucky they are that their baby can fan and spread their sweet little toes. 

If I hear one more time that taking folic acid will prevent spina bifida I may just scream!!!  If the genetic center sends me one more letter asking for an interview, our blood samples and offers to pay me for taking my vitamins...I may go overboard.  I...DID...EVERYTHING...RIGHT!  Yes, that is me screaming at the computer.

I often wonder what my life would have been like had I gotten pregnant and had four healthy kids...I cannot imagine.  I know God has and will continue to use our struggles to bring him glory.  I have no doubt that through his disability Eli will bring God glory.  Tonight...I just wish for easy.  I just wish normal.  I just wish it I could take it all away.

Happy 2nd Birthday to my sweet Eliza Anne

It is hard to believe that our sweet little Eliza Anne is already TWO!  Two years ago tonight Kev, Ella and I ate Mexican and came home to an anxious night before my 8am induction.  Eliza started out a peanut at 5lbs 15oz. and today she weighed a whopping 23 pounds.  I have come to accept that Eliza is just going to be tiny, despite the fact that she is generally a great eater. 

Eliza is the sweetest little thing.  I guess I have already used that word to describe her 3 times, but she is just so sweet.  In fact, had she been our firstborn we'd probably thought we were gifted with excellence in parenting.  She is generally very compliant and obedient.  She is a great sleeper and loves to be in her bed.  She loves to be held and is so snuggly.  She is quiet and super observant.  When she is nervous she plays with her hands and she finds security in sniffing her little pink blankie square.

I love everything about her!  From her thin blond hair to her striking blue eyes.  She tans way better than her mommy ever will despite the fact that she wears 55spf.  Eliza has the cutest giggle and when she gets started she can't stop!  We can't help but laugh when she does.

Eliza loves shoes.  In fact, as soon as her clothes go on she heads to her closet to pick out her shoes.  She has some serious fashion opinions on which shoes she wants to wear each day.  She loves playing with her babies and is constantly filling a purse.  Her favorite thing to do is pushing her babies in her stroller.  Her favorite person is definitely Ella and she has always been a mommy's girl.  She has adjusted pretty good to being a new big sister, and she thinks her daddy gives the best piggyback rides.

Eliza has always been our climber.  She is a quick one!  Thankfully, I think we are ending that stage.  She is a little mischievous, yet is more sneaky about it than her big sis.  She was recently found in the bathroom eating a tube of chapstick.  She had closed the door and was hiding beside the toilet.  She also woke me up the other morning telling me she needed to "pross" (Floss).  I got up to find about 10 feet of dental floss unraveled in the bathroom. 

Eliza is relatively easy to discipline.  She likes to please and has tender feelings. She has reminded us that each child is so different and has to be parented in a different way.  Oh, and she gives looks that can kill...see below!

Eliza, we love you so much!  You bring a sense of calmness and sweetness into our home.  You are such a blessing and we cannot wait to watch you grow throughout this next year.  Happy 2nd Birthday lizze lou!!

2 Months (a week late)

Last week Mr. Eli turned two months old.  My due date with him was Aug. 23rd so technically he should really be about a month or so, but since he was 6 weeks early we have already gotten a full two months to love on him. 

Eli is a wonderful baby.  Last week he started sleeping though the night.  Praise the LORD!!  He is generally sleeping from 9-10 pm until 4:30 or 5ish.  Now if I can just get myself in bed at a decent time, I might finally catch up on some sleep.  I have always stayed up too late, but I am finding that nighttime is the only time I can catch up on things I need to do and the only time I can relax.  Okay...back to Eli.

Eli is growing like a little weed.  My goodness he has some serious cheeks!  It is so strange to me that I am feeding on the same schedule I did with the girls and the same substance (breast milk) and he is growing so much faster!  His weight is in the 75%.  My girls always lingered in the 25% and below (Eliza much below).  I am not sure why he is growing faster...maybe it is a boy thing!  One thing is for sure...he loves him some milk!
At his appointment last week he weighed 9lbs 12 oz. 

Last week we were super busy with appointments.  We went back to see Neuro. and so far Eli's head appears to be growing normally.  It is in the 75%, but so is his weight and so far it is not jumping in percentiles.  His fontanel is still soft and so far he doesn't appear to need a brain shunt.  This of course was one of the main reasons we opted to go through with the fetal surgery, due to the fact that the research showed the surgery decreased the need for one.  We are praying his little head will continue to grow as it should.  He will most likely have an MRI in November, but right now they will continue to just monitor head circumferences. 

We saw ortho last week as well.  This appointment always makes me nervous (well, they really all do).  A month ago when we saw the orthopedist he was very honest and was the first to really inform us that Eli was not functioning as well as he should for the level that his lesion was on his spine.  It was really hard news for me to hear seeing that went through so much in our pregnancy with the hope that he would do even better than expected.   Over the month, I found myself accepting this news, yet as the month went along Kev and I both felt as though Eli had more feeling in his legs than the doctor thought.  Basically, the doctor felt as though he had no feeling below his knees.  We really felt that he had feeling down into his calves at least.   Well, at our appointment this past week the doctor confirmed that he clearly has some feeling in his lower legs.  We were so thankful that it wasn't just us being hopeful. but that the doctor also noticed it too. 

Our ortho is an older man and has been working with kids with spina bifida for a long time.  He said a few times that he didn't understand it, but that Eli clearly had more feeling than he had a month ago.  I made sure to let him know that Eli has had a lot of people praying for his little legs.

Eli also got his first set of casts for his clubbed feet.  All of our doctors have told us that they feel that his feet were clubbed due to his position in the womb (it can also with spina bifida too).  We have been doing lots of stretches, but the doctor decided to go ahead with cast.  I was prepared and ready for this....and I was actually excited to get the process started!  In the past if you would have told me that my 2 month old would be wearing heavy, bulky cast, I would have been devastated, but with the Lord's help I was ready.  The cast immediately made his legs look longer, bigger and in the correct position.  It made my heart happy!

Eli has been a trooper all week.  His has shown us how strong his little legs are when he lifts, lowers and moves his little casted legs.  I know they are heavy for him and yet his is quite determined to move them.  We are so proud of him.   He will get his cast off tomorrow and I am anxious to see what kind of improvements were made in a week.  We won't see the ortho for 3 more weeks and he will most likely go through a series of casting then.  He will also have x-rays on his hips then too.

We also have been seeing an early interventionist once a month and a physical therapist every week.  I am so thankful because we love them both.  The E.I. comes to our home and pretty much plays with Eli.  She is so sweet and loving with him.  She gives us homework and ideas of things we can do to encourage growth and development.  It is so different because with our girls we just let them develop naturally.  I am trying to not become paranoid with all the milestones and etc. and just enjoy him as he is.  So far, he seems to be doing great!

Our physical therapist is awesome.  I have been told by several people that she is the BEST and many have asked how we got picked up by her.  (If you read this...thank you Amy!)  I am so thankful that we did and I can already tell that she will be a special person in Eli's life.  She praised him over and over and told him how great he was! 

And one final thing...little Eli has started giving us the absolute cutest smiles ever.  They seriously melt my heart and almost make me cry! So thankful for my little guy!

Sisters and brother

Two big sisters who are loved so very much.  Bringing us daily laughter and joy....they fill our home with bows and bloomers, purses and babies.   They love each other fiercely and fight as sisters do.  They cry and comfort when the other is punished, and melt mommy's heart as they hold hands sweetly in the back seat of the van.  They have their own "play" that often leaves us wondering.  They love to match, most days.... and Ella often confesses that Eliza is her favorite friend.  Eliza is content letting Ella take the lead and often does whatever Ella tells her to do (not always the best idea).  These two sweet girls redeemed our loss and have filled our hearts with thankfulness.   They remind me of health, happiness and normalcy.

Little brother...so new and so young.  Each day we are learning you more and loving you more.  You are teaching us to look at life from an eternal perspective.  You are teaching us that it is okay to be different...okay to have challenges.   You have rocked our little world and all I know is that God must have some awesome plan for you.  Every little milestone...even as small as tracking a toy or responding to a sound is a new celebration.  We will walk through the challenges ahead beside you, cheering you on and upholding you with our love.  Little brother....so loved, so cherished, so very sweet.