5 months

Adjusted age 3 1/2 months
Yesterday our sweet little Eli turned 5 months.  I am so thankful to be at the point we are at right now.   Gone is the shock.  Gone are the long days of bed rest.  Gone are those fearful and overwhelming postpartum days.  Gone are my feelings of can I do this.  At five months, we are in a good routine and we continue to grow more and more in love with our precious little boy. 

 

Eli's baby dedication at church

Hey I thought this was my photo shoot!

I have said each month that Eli is the best little baby and he continues to amaze us with his sweetness.  His gummy smiles and shy little glances melt his mommy's heart.  His physical therapist tells me each time what a hard worker he is.  He is currently working on rolling and sitting up.  He has rolled a few times from his tummy to his back.  She is encouraged that so far he is hitting his milestones as he should.  He really doesn't enjoy tummy time but we continue to work hard on it.  We are also working on weight bearing on his legs using a peanut shaped ball.  We are so proud of each and every little accomplishment.

weight bearing exercises to build leg strength



He continues to be a good sleeper and sleeps from 8:30ish until 6:30-7ish.  He still sleeps wearing his "boots and bars" to keep his feet in the correct position.  Looking at his little feet you would never know they were clubbed at birth.   He has recently noticed that he has feet and is bringing his legs more into his chest.  He still likes his paci but also likes to suck his fingers.  He is just easy and if he doesn't have a paci he will find his hand.  He has been our easiest baby as far as eating and sleeping goes. 

He loves is big sisters and they love him something fierce.  Recently they have started fighting over him.  One will say, "He's my baby!"  Then the other will argue back saying, "No he is my baby!"  This usually goes on until I assure them that he belongs to them both. The other night we were driving home and he was hungry and screaming.  He doesn't cry often unless mommy is a little too slow in feeding him.   I was the driver and to try to make it home without losing our sanity, I started singing Eli's little song.  (I have a little made up song for each child...not sure how these came about...nothing special...they rhyme and are to a familiar tune).  The girls joined in and he immediately calmed down.  The girls were amazed and now anytime he cries they think all we need to do is sing his song.  I just know they will be his biggest encouragers and cheerleaders!!

Sisters!!!!!

I hate to even write it in fear that we may jinx it, but we won't see any more specialists until January.  It is like a sweet relief to have some weeks without appointments and get to enjoy this special season.

Eli Matthew, I am so thankful for you.  I would do it all over just to see your sweet little smile.  I know God has great plans for your life and we are excited to have a front seat for the ride.  Happy 5 months sweet boy!! 


 

New Design

I have spent my kids entire naptime today trying to freshen up my blog!  I am loving our new family picture taken by the very sweet and talented, Carissa, from lowercase letters.  If you don't read her blog...you should.   It is one of my favorites.   She so kindly agreed to snap some pictures for us in hopes of getting one good shot for the ole' Christmas card.  I am loving them all!  Now to decide which one to use and get those cards ordered!!  That'll have to wait until tomorrow...everyone is awake!!!

Happy 60th Dad!

I have been blessed with the sweetest dad's around.  I do not take that blessing for granted.  I love my dad for many reasons.  My dad is a very generous and patient man even though he says often that patience is not his best quality.  My dad is so humble.  He is a very smart man and earned his doctorate in ministry while my two sisters and I were young.  Now that I have a husband in seminary, I realize what an accomplishment that was.  My dad has been such an anchor of faith for me throughout the years.  When life has been hard for us he has prayed for us and encouraged us that God had a plan, even when none of us understood.  My dad would do anything for his girls.  Last Tuesday when Eli had to have a sudden MRI, I called my dad to let him know.  I knew he was already praying for us that day.  Kev and I were sitting in the food court, anxiously trying to pass time until the MRI and in walked my dad.  He is just that kind of dad!  He sat with us the entire day.  While we were in the MRI waiting area he made friends with another man who was also waiting.  He shared with the man about the Lord in such a gentle and easy way as we waited.  He is not perfect, but he is pretty close in my opinion.  We love you so much and we pray that the Lord will give you many, many, many more Happy Birthdays!  And really, 60 is not that old anymore!

Ella says:  I love Papa because today is his birthday.  I love him because he is so sweet to me.  He obeys and I obeys and he is my friend.  I like to have candy with him because he gives me candy worms.  I like to play on his computer. 

Papa and all his grands...one more arrives in March!  Can you tell why holidays are so CRAZY, fun!

Update Continued

Just a quick update.  We met with the neurosurgeon today to go over Eli's MRI in more detail.  The meeting went great.  I am so thankful.  Basically he said his ventricles were a little larger than normal, but nothing to be worried about at this point.  They were also a little enlarged throughout my pregnancy so this isn't surprising.  They seem to be stable.  Eli does have some extra external axial fluid which is fluid outside of the brain, if I am understanding it correctly.  This is not dangerous and the hope is that he will grow out of it (or grow into his head) as he gets older.  His head really isn't that large right now but the doctor said that it may continue to get larger in the months to come.  I am so glad to know what is going on inside that noggin.  They will continue to monitor it and we will see neuro again in 3 months.  I am thankful to have a break from the every two week head checks. 

The other good news that we learned today is that Eli does not have Chiari II Malformation.  He did early on in my pregnancy prior to fetal surgery and we saw it start to resolve in the weeks following the surgery.  Today, his little cerebellum is completely right where it should be.  Thank YOU fetal surgery!!!!!  I must say it made for a really terrible, horrible, no good, very bad pregnancy, but when I get good news for Eli, I am so thankful we did it.  I am also so thankful for answered prayers. 

Eli's long day!

Before I share an Eli update from today's Spina Bifida clinic, I want to share two quotes that have recently made a big impact on my life.

1) "God permits what he hates to achieve what he loves."  by Joni Eareckson Tada

2) "Some fears surface over and over again, especially fear of the future.  You tend to project yourself mentally into the next day, week, month, year, decade; and you visualize yourself coping badly in those times.  What you are seeing is a false image, because it doesn't include Me.  Those gloomy times that you imagine will not come to pass, since My presence will be with you at all times.

When a future-oriented worry assails you, capture it and disarm it by suffusing the Light of my Presence into that mental image.  Say to yourself, "Jesus will be with me then and there.  With His help, I can cope!"  Jesus Calling by Sarah Young


If the truth were told, I have been dreading today's date on the calendar since Eli was in the NICU.  The day he was discharged we met with the Spina Bifida Coordinator and several appointments were already scheduled for us.  Today was one of those.  For those not familiar with a "clinic" it is where you go in an exam room and all the doctors who are involved with your child's care round to you.  Its benefit is to help coordinate appointments so that you spend less time a the doctor's office.  In practicality this is great, but I find it to be somewhat overwhelming. 

Today following clinic Eli was set to have his yearly Urodynamics exam.  This is a test to check Kidney's, bladder, pressures, etc.  He will have it once a year for the next 7 years.  I have been worried about this test because he'd only had a kidney ultrasound at birth...you know and those kidney's are pretty important little organs!!!  It is that whole fear of the unknown thing....the standing there waiting for the big punch, the knock-out, the dreaded news.  Thankfully, the exam went really well.  Kev and I got to go into the procedure room with him.  The test det. that his kidneys looked good and that his bladder can empty completely on it's own.  There is no need at this point to catheterize or begin any meds or antibiotics.  He will have another kidney ultrasound in 6 months but for now we are good.  We were so thankful.

Earlier this morning prior to the Urodynamics test we saw the Neurosurgeon's NP.  Eli's little (somewhat large) head did another jump on the growth chart.  He had a MRI scheduled for next Thursday, but they decided to see it they could work him in today.  I have been dreading this MRI.  The thought of handing my baby over to some random nurse or tech for anesthesia is enough to cause my heart to flop.  It may not sound too bad until you go there in your mind with your own child....then it is just terrible. 

So we found out about the change in MRI this morning at 9:30 just as Eli was ready to eat his second meal of the day.  Then they told us the MRI wasn't until 2:00pm and that of course he couldn't eat until after it was over.  I knew it would be a very long day.  He was honestly such a trooper and cried some, but he handled it far better than I expected.  So, about 30 minutes before the MRI the NP came out and said that he would have to be admitted if they sedated him.  He had just met the 54 weeks from gestation requirement as of TODAY to not have to be admitted following sedation, but the anesthesiologist said he would still have to admit him(sorry if this is utterly confusing).  We found this out after waiting all day.  We opted to try our luck at an unsedated MRI and if not to sedate him as planned and just be admitted.  Eli was very tired at this point and had given up on eating...poor guy.  They let Kev go back with him and get this...they let him get on the table and go in the MRI with Eli.  Can you believe that?  No scary tech taking my baby off, no sedation, no needles, no overnight hospital stay.  They immediately sent the pics to the doc. to make sure they got just what they needed and they did.  We left quickly and I did my best to fill that little belly after about 10 hours without eating.

So, in talking with the Neuro NP this morning she said she would be really surprised if things were okay.  They saw the enough of a jump on the growth curve that they had been looking for and although they hoped things were stable, she said she was doubtful.  They even wanted to tentatively schedule us for surgery tomorrow!!  Kev and I said no, that even if it was needed we had to look at all of the options.  They were very sweet and accommodating. 

So about an hour after we returned home they called with the MRI results.  Kev took the call because I am not good with waiting for the news.  Good thing he was outside or I would have been saying, "what, huh, ask this, wait, are you sure," kinda thin... the whole time he was trying to get the information.  So as of now Eli's ventricles "look good."  Apparently he has extra axial fluid around the outside of the brain, but not in his ventricles.  This has caused the rising head circumference.  The hope is that his body will take care of it on it's own as he grows, if not he may still need a shunt for this, but at the time it is okay.  Talk about thankful!!!!  I feel like I experienced yet another miracle today.  I am thankful and still hopeful that we can avoid a shunt and so thankful that nothing needs to be done right here at Christmas time. 

What does God hate (not sure if God hates, but if he does I am sure it is the hurt, pain and suffering in the lives of His children), but he permits it because he loves (His glory being displayed on blogs, on facebook, through testimonies, and in the daily lives of weak and ordinary people.  Thank you Lord for getting us through this day.

Thanksgiving 2011 Recap

This year I am so thankful for many things.  Last Thanksgiving my life was in a really good place.  I was in my best shape physically due to really getting committed to running.  We had two healthy and beautiful little girls.  We had two "nice" paid off cars.  Kev had a good job and life was good.  Last thanksgiving I was very thankful for all that the Lord had blessed us with, but this year I feel my gratitude is even greater. 

The suffering that 2011 has brought has led my heart to overflowing gratefulness.  I am so thankful that God blessed us with another child.  I am so thankful that Kevin survived his horrible wreck in July.  I am so thankful to be at home and get to tuck my sweeties in their beds every night and not still in the hospital.  I am so thankful that even though Eli has lots of challenges ahead I can see the Lord's hand in his little life.

Just one little example is that in the past four months, Eli has been unable to bare any weight on his little legs.  Over the past few weeks he is beginning to be able to bare a little weight (when held up of course).  His little legs will give way and then he will push up through his knees.  I cannot tell you how proud it makes me.  I am still eagerly praying that one day I will see his little toes begin to move....for nothing is impossible with God. 

If you think about it Eli, has two big hurdles in the next two weeks.  First is a urodynamics test which will check his bladder, bowel, kidneys, etc.   It will look for reflux and will help us know what we need to do to keep his kidneys healthy.  He will have his first MRI the following week and that will let the docs know exactly what is going on in that little head.  I must admit that I will be glad to get this all behind us.  I am praying for healthy kidneys with normal pressure and stable ventricles. 

 Happy Thanksgiving!!

Eli's 4 month update

 Our little guy is four months (and some change...mommy is very late posting this).  

 At four months you weighed 13 lbs 6 oz.  You were 23 1/2 inches.  You have been doing some good growing and it is hard to believe how much you have grown since your arrival at 34 weeks.

 You are the best little guy.  You nurse 5-6 times a day and sleep from about 8pm until 6ish.  You are so easy going and laid back.  You rarely cry unless it is time to eat or you are overly tired.

 You love your big sissy's!!  They provide a lot of entertainment for you.

 Oh, and they are a tad bit CRAZY over you!!  Eliza has recently started calling you ( E-lie Ma-shoo)...that would be Eli Matthew!!  She still pronounces it with a short E! 

You like to sit up in the bumbo seat now.  Your PT said this was good practice.  You are getting close to being able to tripod sit.

 We have worked really hard to gain this head/neck strength.  We are so proud of you!

 You really like watching TV!!  You must be a boy!  Your hair is growing.  It looks like it will be strawberry blonde.

 Eli, I am so glad God gave you to us.  Your mommy is so proud of you!

Eli is doing really well.  We had another head check last week and thankfully his head growth got back on his old growth curve after a jump the month before.  I prayed and prayed and begged the Lord for this and I truly feel that He answered.  We have another check next week at our second spina bifida clinic day. He is scheduled to have an MRI in December.  I am not looking forward to him having to be put to sleep (the thought makes me want to cry, yet I know this is part of our reality). 

He will also have his first urodynamics test next week.  I am a somewhat anxious to find out what his little bladder and bowel are doing.  I am thankful that we have had four months of not cathing, but I am preparing myself for this possibility.

Happy four months sweet boy!