10 Months Adjusted!!

Emily will be 10 months adjusted tomorrow! If you would like a medical update, please read the last few posts. Non-medically, she is rolling right along with her skills and is performing at her adjusted age in all areas except those related to her oral issues...in eating and language and things related to them, she is performing as a 6 month old.

K didn't take any interest until she saw the shoes...

More on Emily

So the new news on Emily...for a couple weeks now she has been doing what we call "bobble head"...her head bounces around like a baby who is just getting neck control. In fact, it looks like she is trying to look around her glasses in order to focus. The advice we got was that it was visual (she needs a new prescription).

So, we finally got her in to the ophthalmologist today and he took a look and decided that her prescription is fine. What that means is that it is most likely one of two things: something-something triad (sorry forgot the medical name) which is a condition where a child has a head tilt, head bob, and nystagmus (eyes bounce back and forth) or it is neurological.

If it is the triad thing, she will outgrow it by the time she is seven. Seven? Yes. She shows all three but they are not very pronounced (you can only see nystagmus when one eye is covered) so he is hesitant to declare with confidence this is all it is. If it is neurological, it could be caused by a number of things but they would need to do an MRI to take a look at her brain. So, we are headed in to see the pediatric neurologist sometime in the next couple weeks.

He also noticed that her dominant eye is becoming more dominant and her weak eye is becoming weaker. Thus the patch on the eye. We are going to patch her good eye for two hours a day for the next month until he sees her again. Look at that sight! Her face is just getting worse and worse! :) What else can we put on her? Maybe a nose ring? No, we don't put her oxygen on at night anymore...kind of impossible with the feeding tube, plus she doesn't leave it on. We just pray God will keep her breathing all night.

Her eating is still not going well. As you can see, she is back on her ng tube. Her pattern is to go about five days on it, do really well, so we take it out, then she does great for two days and steadily declines until we put it back in about a week later. She wants to eat so badly, but she gags on everything.

I want to get Plumpy Doz (a nutritional supplement by Nutriset that tastes like peanut butter and is used for toddlers in third world countries and they only have to eat 3 tablespoons a day) but apparently you can't just buy it. I know she would eat it because it is puree. Sad!! Seems to me to be a better solution than a g-tube.

Anyway, hope you all have a wonderful day! We are just trying not to float away in the rain...our county has already been declared a disaster zone and it is supposed to get worse starting tomorrow. Thanks for your prayers and God Bless!!

A few thoughts from M, its a long one!

M here.  I have been up trying to run interference for B so she can get some needed sleep.  K is stuffed up right now and I think she is coming down with something.  I can read the writing on the wall and forsee another round of miserable sicknesses in our house, again.  I am so sick of being sick!  I never got sick before kids, now I seem to get a cold every other week.

This is going to be a really long post (in fact, I may start rambling because it is 2 in the morning), so bare with me or skip ahead as you see fit.  I have been thinking a lot about Emily's birth, recently.  I have actually tried to bury a lot of the those first few months, choosing to just forget them.  I was reading through a journal I wrote out, a couple weeks after she was born.  It very aptly described my feelings at the time.  I shared it with a few people, but for the most part, kept these feelings to myself and B.  I am going to paste it below:

When Emily Grace was born, I was absolutely heart-broken.  I have never felt this kind of heartache in my life and am currently going through peaks and valleys that make me understand how King David must have felt. 

When we went through the birth of Kylie, we were able to experience the benefits of going full term and giving birth naturally.  You go through the full swing of emotions, ending with the knowledge that your baby has been born, your wife will be fine, and they both are healthy.  With Emily Grace, I was robbed of all this.  Emily wasn't supposed to come yet.  I know God's timing is the best timing, but I feel like he ripped a part of our joy out of our lives by bringing Emily into our lives this early.  I never got to experience the third trimester of watching Becky's belly swell and knowing that our baby's health was going to be that much better by every week she stayed inside of that perfect environment in Becky's womb.  I barely got to start feeling her kick against Becky's stomach.  I never got to be with Becky during birth.  Now I will never have any of that.  I never knew how important this was until I had it taken away from me. 

I have already shared on my blog about how I felt when Becky was taken into the ER, but I will go in depth a little more here.  Context: Becky and I have always told each other that we wanted to live a life of no regrets.  Having Kylie (and now Emily) gave us one more thing to check off our "list" of things we can say we won't regret having tried during our lifetime.  Body: When I saw how much blood Becky had bleed out, watching her go into shock, this thought came into my mind.  "No regrets."  As I walked alongside the gurney with the nurses pushing Becky into the ER/OR, the thought came to me that this may be the last time I would see Becky alive and this could be the last time I would be able to kiss her and tell her I love her.  I remember for a second, the thought crossed through my mind that I didn't want to live with the biggest regret of all and find out that I had forgotten to tell Becky I love her.  Before they pushed Becky into the OR, I quickly bent down and kissed her on the lips and told her I loved her.  At this time, the enormity of what was happening, washed over me and I broke down.

I remember calling dad and my mother in law to tell them what was happening, then wandering over to outside the OR and wait to hear what the news was.  After a while a nurse or doctor-don't remember- came out and told me Emily was in "this room" and Becky was in "that room." She then said congratulations. 

Ever been given a gift from someone you love, and they are so proud of that gift (the time, effort that went into the thought), and are so happy to give it to you?  Remember how you felt when you saw the gift and you really didn't like it or didn't have near the enthusiasm for it, that they did?  Take that feeling and multiply it by a million and you will feel how I felt when the nurse told me "Congratulations, dad."  I had to go into work for a day and everyone kept coming up to me and telling me "Congratulations, man."  This is the second to last words on earth I ever wanted to hear.  Emily was not supposed to be born yet!  It is NOT a good thing that she was born, this IS NOT a joyous event.  I don't want to be congratulated!

Emily's birth is like a funeral and yet she is not dead.  I don't have the benefit of waking at night and walking over to her crib and looking at her sleeping.  I can't hear her cry.  I can't hold her.  I can't hold her little mouth next to my face and feel her breath on my cheek.  I have to get up with Becky every 3-4 hours to help her pump and clean up afterwards, yet we can't watch our newborn eat.  I have to comfort Becky when she wakes up in the middle of the night, crying, because the only thing she wants in this world is to put little Emily Grace back inside her womb so she can continue to grow in the way God designed her to grow.  I can't put clothes on Emily and pretend she is the cutest baby ever.  Instead, I wake up in the middle of the night and wonder if she is struggling to take her last breath, and I won't be there to hold her hand.  I go through the day wishing I could be there with her and protect her and help her, yet I am tired and can't spend my day with her.  I feel guilty when I go about my day and someone asks how she is doing and I can't truly answer because I don't know.  I am constantly wondering if she is going to have health problems.  Will she be blind?  Will she have to carry a respirator around for the rest of her life?  Will she be confined to a wheelchair?  Will she need dialysis?  Will she ever be able to play with Kylie?  

As I am writing this, my daughter is struggling for her life.  She can't breathe on her own, her kidneys don't work, her stomach can't digest food and the doctors are talking about performing surgery on her to take out a part of her intestines.  Emily just turned 27 weeks gestational age.  She is just about 1 lb. and 9 oz., her eyes haven't developed yet (in fact they are still sealed shut), and doctors are talking about performing major surgery on her.  


I re-read that journal tonight and the emotions washed over me, once again.  I remember writing that post, sitting on the floor in my closet, tears running down my face.  The last time I truly broke down and cried like this, was when I became really homesick when I was 14, living here in the States, while mom and dad were still in Africa.  I look back and realize how far we have come, how much Em has grown, how much B and I have changed.


Sometimes I wish for a normal life, free of the daily struggles and challenges Em poses.  I look at healthy children and wonder what it would be like to have two healthy children.  Em is a monumental, wait, that is not big enough.  Em is an astronomical challenge.  She tasks us emotionally, physically and spiritually.  She is the refining fire that God has stoked in our lives.  Feeding her is one of the biggest challenges we have.  She could be starving and thirsty (dehydrated) but when she is in one of her moods-she will not eat.  Period.  We have tried every trick in the book and on the internet.  They will NOT work.  In times like this, I want to tell God, "Enough already, I don't like your challenge anymore.  It sucks, and it is not fair.  You need to change the rules, because they set you up to lose."

Through this whole experience, I have noticed something that God has changed in my life.  I used to look at special needs kids-and their parents-with pity.  I don't anymore.  God has created a special place in my heart for kids that have special needs.  I pass by them and I start praying for them and their parents.  I pray for strength and endurance for their parents.  I see a handicapped child, mentally challenged child, etc. and now I just want to give them a hug and tell them I love them for being who they are.  I would never have considered this before.  I am convinced God created special needs kids because he saw the calloused nature of our hearts and saw a way to soften them.

I look back a year ago and remember the uncertainty, pain, and hurt-like it was yesterday.  I see pics, like the one below, and often wonder how we made it through.  So much of that time felt like we were wondering in a dense fog, taking one slow step at a time, trusting God would guide us down the right path.

 

Now take a look at the picture below this one.  What a difference a year has made!  I love that little face.  I love those long eyelashes and beautiful eyes (it is a pity she has to wear glasses that hide her eyes-they truly are gorgeous eyes).  I love her little nose and fuzzy hair.  I love her quick smile, baring one little tooth.  I love how she is such a little cuddler-when she is tired.  I would do anything for her.  I look at her and get just a glimpse of what God must see when he looks at us, His children.

One of Those Days

Yeah, you know those days...well, I am having one so before anything else happens and I smash my head into a wall, I decided to sit down, eat popcorn, drink chocolate milk and at least update the blog.

April left a couple days ago, but I still have some pics of her time here...I FINALLY found a playhouse for super duper cheap. I have been looking for one for almost a year, so when I found this one, I had to get it, despite the fact that April was here. She was a good sport though and even helped me scrub it down (not an easy feat on something this size).

K has been thrilled to have her own "payhouse" and it couldn't have come at a better time.  With two weeks of rain in the forecast, she needed something new to play with. On this day, she insisted on wearing her 'toe shoes' even though she had tights on.

This isn't the best picture but it is the only one that shows a little more of her house, so I thought I would include it.

Grandma sent a swing to help out as well and K likes to ride with monkey.

I had them dressed up for church sat night so I decided to try for a couple of pics. They aren't great, but good enough to share.  The downside to your kids being too close in size?  You certainly can't do the 'sit in the lap' picture.

I asked K to hold Em's hand, so that is what she is trying to do.

I call this 'goofy faces'.

This cutie is definitely teething, with no teeth to show for it.

Ok, seriously, just as a teaser to the greatness of my day: It started awesome.  I got the nursery and playroom rearranged and cleaned, food made five times, cleaned the bathroom and I still had two happy girls.  It was going so well, I decided to push my luck...naturally. I spent the two hours I have M home on a run to return an item, pick up our Christmas cards, buy ink for the printer, and buy more formula...on a Sunday.  That was not fun.  But, it was still going great. 

And then...and then...M went to work.  I went to make milk for Em and realized I had forgotten the formula.  Lots of solids tonight since she hates the pre-made stuff I have.  I sat down to do the Christmas cards and spent the next hour looking for our address book...still don't know where it is. But, no worries, right? I can get other stuff done.  So I decided it was a good time to clean an outdoor toy I wanted to bring in for a while and as I did this, I heard Emily cry, moved too fast, banged the faucet in the bath and knocked it right off...yes, broke it completely off.  The toy is in the now dirty bathroom (why did I clean it?) in the tub without a faucet.

I took a deep breath, called M to make sure I didn't have to turn the water off and moved on. I made food for my kids that they didn't eat. Emily refused her bottle and her bed. She is usually in bed by 6:15pm and was still up crying at 8pm.  K has a HUGE rash on her bum...the allergy kind...and she just keeps saying, "Owee bum.  Owee, bum." in a nice whining voice that makes you sad and irritated all at the same time.  I have no idea what she ate that did that but I think we are missing an allergy.  We get to start that search again...it might also be diapers all together (we are on our fourth brand). Anyway, I am sure I forgot something, cause I feel way more annoyed than it seems I should be for all that.  Anyway, I am about to go clean the master bathroom...if you don't hear from me again, it has been great conversing with you all!