One-Eyed Boy

This is the hardest post I have ever had to write.  I have attempted it several times only to break down in tears before I type even the first word.  I have prayed for strength, wisdom, and courage not only to raise my son as God wants but also to share Noah's story, in hopes of helping others, along the way. 

Last Sunday, I was in the bathroom getting ready for church and Noah was hanging out with me.  It is such a special time to chat about all sorts of things, nothing of great importance, usually Super Heroes, what we're going to do during the day, family and friends, etc.  Well today, as we were talking about going to church and Noah going to Kids Connection {what our church calls the kids Sunday school}and my little man broke down in tears.  Big, splashy tears just streamed down his face as he told me he didn't like having one eye.  He wanted to have two eyes, just like his sister Ava. 

Oh. My. Goodness.  My heart just broke for my Bubs.  I scooped him in my arms and repeated the words we have told him since he was little.  I explained, as tears streamed down his face, that God created him and that he was very special.  That he was perfect just the way he was.  That Mama and Daddy and Ava loved him.

"But I don't like it when kids look at my missing eye," Noah explained to me.

Every single time we go out, Noah deals with strangers staring at him.  Kids stare at him while walking past him at the grocery store.  They occasionally stop right in front of him and stare with a horrified look on their face.

 "Mommy, Mommy," they yell, "that boy doesn't have an eye".

 "Of course he does," some parents explain, "it must be hidden by a patch". {Oh how I wish that were true}.  Other parents quickly grab their child by the arm and mutter under their voice that "it is not nice to say things like that" all the while looking at me with pity in their eyes.  The worst ones stare at Noah along side their child with that same look of horror and revulsion.  Where ever we go, all Noah sees are people looking at him in disgust. 

We have taught him that whenever kids ask about his eye, and they do...all the time...usually with a pointing finger and scrunched up face, that he is to respond, "That's the way I was born".  Some kids accept Noah's explanation, say "Oh", and move on.  Others, however, demand more.  They want to know if he can see, why he was born like that, does it hurt, why is it {his face} bumpy, will he grow an eye later, etc. We have spent lots of time answering kids questions, having them cover up one eye with their hand and showing them what Noah sees {and that he can see}, trying to help them understand that Noah is just a normal kid {who LOVES Super Heroes and Legos and Star Wars}.  I know that kids are curious and I am not faulting them for wanting to know more about Noah.  The ones, however, who after all the explanation reply, "That's weird", are the ones that break my heart.  There are times that I want to grab the child by the shoulders and  scream at the top of my lungs, "MY CHILD IS PERFECT", and other times I want to hide under a rock until the pain goes away. 

Back to this past Sunday, I asked Noah if something happened last Sunday at church...if kids were being mean to him.  Noah couldn't tell me but he kept repeating that he didn't want the kids to stare at him.

My fierce Mama heart kicked into action and we brainstormed what we could do to keep kids from staring at him.  Noah suggested an eye patch and while I didn't think an eye patch plus a BAHA plus glasses would be possible, we came up with the idea of masking the lens in his glasses.

I present to you my Little Man with his new and improved glasses.

Once we put the duct tape on this lens, Noah ran into the bathroom to look in the mirror.  He came back with a huge smile on his face and declared that he loved his new glasses.  While I was so relieved that Noah was happy, my heart broke that we had to cover up his eye, like we were hiding in shame. 

I know that this is only the first of many heartbreaking experiences that Noah will have.  I pray that Noah learns to believe about himself what God knows about him...that he is perfectly made, just the way he is.  I pray that I continue to have words of peace and encouragement for my Little Man.  I pray that as he enters kindergarten this fall, he is surrounded by caring students who are able to look past his physical differences and see him as the funny, kind, smart, silly, sweet friend that he truly is.

Twenty-Six

We had a fantastic Christmas {post to come later}, an amazing family trip to the Monterey Bay Aquarium {post to come later}, a great behind-the-scenes trip to Sea Lion Cove {post to come later}, and an incredibly hectic first week back to reality {no post to come later}.  I simply cannot believe how fast the holidays have come and gone and quickly the wild rush of reality has set in.

Tomorrow, we'll be heading back to Children's Hospital for surgery number 26.  If you remember, back in March, Noah had a tube placed to correct a clogged tear duct.  And, if you remember, back in September, the tube refused to be removed.

So...here we are...ready for another surgery.  First, Noah's ENT {the very same Dr. who placed Noah's trach} will remove the stubborn tube and follow up with a scope of his trachea.  Next, Noah's Opthomologist will perform a surgery to help alleviate his nystagmus.  Noah's eye shakes back and forth, called nystagmus.  In order to releive some of the quivering, the Dr. will loosen the tendons on one side of his eye and tighten the tendons on the other side.  This will "force" his eye to stay in {relatively} one place.

Please pray for skillful surgeons, patient nurses, fast acting Versed, and a speedy recovery.

25...and counting

This past Wednesday, we headed back to the hospital to have the tube removed from Noah's tear duct.  If you remember, back in March, Noah had surgery to open up his clogged tear duct and the tube was placed so it could heal properly.  Well...Bubs has healed properly...and that tube needed to come out.

We had done quite a bit of talking about going to the hospital and the procedure that was going to take place.  Bubs was not thrilled but was quite brave and strong through out the majority of the pre-surgical process.  

Notice that the eye doctor initialed above Noah's eye...indicating the left eye was the correct one to do surgery on...as if they could have done surgery on another eye.

Thanks to some happy juice, Versed, Mr. Man was quite calm when they wheeled him into the surgery room.  About fifteen minutes later, our eye doctor came into the waiting room to tell us that he was unable to remove the tube.

What?

Unable to remove the tube?

You put it there...why can't you remember where you put it and take it out?

Seriously?

It seems that Bubs' skull is abnormally shaped {already knew that} and his sinuses are abnormally large {already knew that}.  The doctor planned on going up through Noah's nose, grabbing a hold of the tube, and pulling it out.  Easy Peasy Lemon Squeezy!  Well...after quite a bit of "poking and prodding" the doctor was unable to find the end of the tube in Noah's cavernous sinus. 

So...we're being referred to an ENT for a full scope and removal...and we get to do this all over again.  Fan.tas.tic!!!

23 and counting

Noah's surgery today went well.  We arrived at Children's Hospital Central California bright and early.  Mr. Man was a happy little guy even though he was probably a bit hungry.  Once we were in the Pre-Op room, however, everything started to go downhill.  Our lovely nurse started to take Noah's vitals and connect the blood pressure cuff as well as the pulse-ox monitor...well...I think that brought back a wave of emotions.  Bubs started screaming and crying.  He wanted to go to leave the hospital and go to the car.  Noah told everyone "NO", including our fantastic doctor when he entered the room.  It wasn't until the anesthesiologist gave my Little Man a bit of "happy juice" that he finally calmed down.

In order to pass the time before surgery, Noah and I sang a few songs.  

The surgery was short and sweet and in no time at all we were all back in the recovery room.  The nurses actually came and got me a bit earlier and rushed me to the initial post-surgery room because Noah was a tad bit agitated and they needed help restraining calming him down.  Bubs was so ready to leave that he was pulling off all the leads that were attached to his chest as well as the IV placed in his wrist {ouch!}.

Our very patient nurse agreed to remove every last monitor and finished taking out the IV and pretty soon Noah was snuggling, quietly in my arms.  We didn't have to stay in the recovery room too much longer and were back at home by noon.  Pheww!

The rest of our day consisted of watching NEMO, snuggling on the sofa, playing with every single shark toy available, a ridiculously long nap {for both Noah and I}, and a splashy bath. 

Bubs talked quite a bit this afternoon about "go to the hospital", "put on blue jammies", and "hello Nurse".  When I asked him why he was crying so much at the hospital, he replied, "Noah scared.  Noah get owie."  It just broke my heart.  My poor Little Guy has such fears about hospitals...and rightfully so.  While he may not remember details about all of his past hospitalizations, he does remember the feelings of fear and pain.  Those feelings are quite powerful and strong. 

I think we will need to do some major counseling or have an intervention or something because Mr. Man will be back in the hospital in six months or so...the tube that was placed in his tear duct will need to come out.  EEK!  

Another Surgery

We're heading back...well, actually Mr. Man is heading back...for another surgery.   If you count all of Mr. Man's previous surgeries and scopes, this is number 22!  It is, however, probably the easiest and least significant of all his surgeries.

 Bubs has a clogged tear duct that needs to be opened.

Seriously?!?

Yep, a clogged tear duct.

Noah's awesome Opthalmologist will be opening up his nasolacrimal duct with a small probe and placing a tiny tube to keep it open while it heals.  How easy is that?!?

Even though this is such a simple procedure, it still is surgery.  We still need to be at the hospital very early.  My little man still can't eat anything after midnight {which makes for a very hungry and grumpy guy}.   Bubs will still be put under anesthesia.  Kc and I will still have to kiss our Little Man good-bye and watch him be wheeled away. It still is scary and nerve wracking.  It is also his first surgery without a trach {which is just making this Mama very nervous}.   

Please think about us tomorrow and join us in prayer for our Little Man as well as for  his amazing doctors and nurses.

Blink of an Eye

Play the ipod on the right to hear the song...

Blink of an Eye
By:  MercyMe

You put me here for a reason
You have a mission for me
You knew my name and You called it
Long before I learned to breathe

Sometimes I feel disappointed
By the way I spend my time
How can I further Your kingdom
When I'm so wrapped up in mine

In a Blink of an Eye that is when
I'll be closer to You than I've ever been
Time will fly, but until then
I'll embrace every moment I'm given
There's a reason I'm alive for a blink of an eye

And though I'm living a good life
Can my life be something great?
I have to answer the question
Before it's too late

Cause in a Blink of an Eye that is when
I'll be closer to You than I've ever been
Time will fly, but until then
I'll embrace every moment I'm given
There's a reason I'm alive for a blink of an eye

If I give the very best of me
That becomes my legacy
So tell me what am I waiting for?
What am I waiting for?

In a Blink of an Eye that is when
I'll be closer to You than I've ever been
Time will fly, but until then
I'll embrace every moment I'm given

In a Blink of an Eye that is when
I'll be closer to You than I've ever been
Time will fly, but until then
I'll embrace every moment I'm given
There's a reason I'm alive for a Blink of an Eye

Mr. Intellectual

Noah and I headed to the ophthalmologist office today to pick up his glasses. It's shocking how much they completely change the way he looks. I no longer have a baby boy...he's now my little man...my little intellectual man.
Noah LOVES his That's Not My...books. He has several. That's Not My Dog. That's Not My Tractor. That's Not My Kitten. That's Not My Monkey. His favorite, however, has to be That's Not My Pirate. He LOVES to turn the pages and feel all the different textures. He's my little budding reader. My little intellectual.
He is our happy little baby boy. Our budding little reader. Our Mr. Intellectual.

Medical Updates

The past two weeks have been VERY busy for the Jacksons. Noah has had five doctor's appointments {two of them out of town}, we have gone on two mini weekend vacations, and have had countless play dates and BBQs with family and friends. Here are some updates on what we learned at the doctors appointments.

Plastic Surgery:

Noah's hands continue to heal quite nicely. They were wrapped continuously for two weeks post surgery. After those initial two weeks, we unwrapped his hands nightly, gave him a bath, let the hands dry out, and then wrapped them back up. As of his appointment last week, Noah's right hand is doing excellent and doesn't have to be wrapped any more. His left hand has a bit more healing to do and needs to continue to be wrapped. Although, as you can see from pictures in previous posts, we've taken liberties in how long we let his hand "dry out".

Ophthalmology:

Last week, we headed down to Children's Hospital Los Angeles to see Noah's eye doctor. It was a LONG trip but Noah did well in the car. The Dr said Noah's left eye continues to look good and so we're going to continue his current eye drops. He also decided that Noah needs glasses. While Noah is a bit near sighted, the primary reason for the glasses is to protect his eye from possible injury. Because he's only got one, we need to do everything we can to keep it safe. We have ordered the glasses {very cute plastic children's ones} and they should be here in the next week or so.

Otolaryngology:

After Noah's last scope of his trachea, our ENT Dr referred us to a specialist at Children's Hospital Stanford. We drove up to Stanford yesterday, and once again, Noah did quite well in the car. We met our AMAZING Dr and were quite impressed with the clinic. The first thing they did was stick a long camera down Noah's nose straight into his trachea so they could get a good look around {while he was awake}. Needless to say, Noah DID NOT like this. The first thing the Dr saw was how large Noah tonsils were. "Those have got to go," he exclaimed. He was also able to see that Noah's vocal chords were "trying" to move while he was screaming and crying. "Very encouraging," he said. We discussed the MAJOR surgery to re-build Noah's trachea and possibly take out his trach. There is about a 70% success rate with severe cases like Noah. We head back up to Stanford on September 8 so the Dr can do his own scope and take out Noah's tonsils and adenoids. At that point, he will be able to make a plan whether or not to proceed with Noah's laryngotracheoplasty.

I am so blessed to be on summer vacation and not have to take days off work for all of these appointments. While I would much rather be a SAHM {stay at home mother}, I have to give thanks for the job I have, the flexibility it allows us, and the health benefits it gives Noah. We've got some major surgeries ahead of us, so I'm hoping to make the most of this summer and have as much fun as possible!

Another Trip to Los Angeles

We got up early, very early this morning and headed down south for Noah's eye procedure. We arrived at Children's Hospital Los Angeles at 5:45 a.m. and Noah was prepped for the procedure. He was NOT happy with his choice of hospital gown...it was way too big and had funny ties on the back.
The nurses took Noah back to the operating room and Dr. Song hooked electrodes to his head while lights flashed over his right eye. Dr. Song was able to determine that Noah's right eye is non-functioning. The doctor will be consulting plastic surgeons over the next few weeks to make a decision about the next course of action. We were relieved to learn, however, that Noah's left eye is doing well. Dr. Song has advised us to slowly discontinue the use of his eye drops - what a joy.
When Noah was in recovery, Kc and I were allowed to see him. He was quite sleepy but VERY happy to see us. After about an hour of waking up we were allowed to leave. We met up with my dear friend Robyn (of Team Noah shirt fame) and had a wonderful lunch full of great conversation. It was the fuel we needed for the long trip home.

Off To LA

Well...we're off to Children's Hospital Los Angeles. Noah will have the procedure done to determine if his right eye is functioning. Because we are Dr. Song's first procedure of the day, we need to be at the hospital at 5:45 a.m. That means that we're leaving home at 2:00 a.m. Wish us luck!!!

Fourteen Hours

Yep...that's right. From start to finish, we were gone fourteen hours yesterday. It was a whirlwind of a trip and even though Kc had his camera with him the entire time, we have NO pictures. Sorry.

We got to LA about an hour before our appointment. We only had to make one stop along the way for a diaper change and feeding. Noah did very well and slept most of the way down. The news from Dr. Song is very encouraging. He told us that it was a good thing we didn't have an appointment until this week. The experimental drug that had been suggested for Noah had some very poor results and is now suspended from use. Dr. Song explained that there are many things he can do to preserve Noah's left eye starting with some VERY SAFE eye drops. We'll be heading back to LA in a few weeks to see if they are working.

As far as Noah's right eye, the Doctor has scheduled a VEP-ERG (Visual Evoked Potential - Electroretinogram) in a few weeks as well. It will determine if there is any potential in that eye and whether or not he will have surgery to "uncover" it. If there isn't any potential, it will be left alone and Noah will receive a prosthetic eye that will cover the empty spot when he gets to be five years old. Either way, we have a definite plan of action and that makes all of us very happy.

Before leaving LA, and in order to miss the rush hour traffic, we stopped in Burbank and had dinner with our "transplanted" friends Jenn and Stacey (as well as Stacey's boyfriend Jared). It was so nice to see them again and Noah, while he was a bit cranky and hungry, truly enjoyed meeting everyone.

The drive home was pretty rough. Noah was sick and tired of sitting in his car seat, which was truly understandable, and just wanted to be home. By the time we got home at 11:00, Noah was so happy and awake, that we stayed up until his midnight feeding and did some tummy time. All in all, it was a great road trip.

To make this week a bit more hectic, Noah's achilles surgery that was scheduled for Friday, has been moved up to tomorrow afternoon. I am happy to get it over with although we are not looking forward to spending the night at Children's Hospital again. Thanks for all your prayers. We'll keep you posted.

Noah's first trip

We found out that we will be heading down to Children's Hospital Los Angeles on Monday to see the cornea surgeon. It will be our first "family trip". While some families go visit relatives or travel to the coast or mountains, the Jacksons go visit doctors. What a life we lead!

Highs and Lows

This weekend was VERY busy and there were a series of highs and lows. Kc and I continued to stay in Room 1631 and the nights have gotten a bit better. We're able get a few hours of sleep in between feedings and diaper changes. Speaking of feedings, Noah was eating so well on Thursday that Dr. Fields took out his NG feeding tube. We were able to get a few pictures of him without anything covering his face (the first time since right after he was born).
As soon as the tube was out, however, Noah went on a bit of a hunger strike. He refused to drink anything from his bottle. We tried everything to get him interested — multiple different nipples attached to the bottle (thanks Nana for getting them), waiting longer between feedings, I even switched from breast milk to formula to see if he would like that better. Nothing worked. Unfortunately after 24 hours of very minimal eating, we put the NG tube back in. He is now eating around 30 ml from the bottle and the rest is pumped through the tube.

On a high note, we had several visitors who brought us yummy treats to eat. Noah got to be held by Chris and Lindsay (the future Mr. and Mrs. Overstreet) and Katie (the future Mrs. Torstensen). Our friends Dave and Mary are coming by tonight and Nana and Papa have been here lots.

Kc and I went to church on Sunday. It was our first time since Noah was born. Our church family has been so supportive over the past few weeks. They prayed for us and gave us the encouragement to keep going!

There is a strong possibility that we will be going home tomorrow morning. Yeah!!!!!! It will be a short stay, however, for we will be heading down to Children's Hospital Los Angeles to see a cornea surgeon and hopefully get some more information about the new drug. We'll know more tonight.

Next Week!!!

Yesterday was a bit of a discouraging day and we didn't get home till very late. I actually had to give myself permission NOT to blog. I am sorry to all of you who logged on this morning and did not have anything to read.

These past two days, Noah has had several visitors. My good friend Debbie came Monday morning and today another friend, Lisa, came in the morning and Joanie came in the afternoon. My little man is being spoiled by so many people. He is loves cuddling and sleeping in the arms of lovely ladies.

Dr. Lin, a cornea specialist, came and saw Noah yesterday. He said that Noah's left eye is a "very difficult case". Unfortunately if the capillaries continue to encroach on his cornea, he will loose his sight. There is a brand new clinical trial that Noah may qualify for. It is for a drug that is currently given to diabetes patients but has not been tested on infants. We'll get more information on it later this week.

Noah had several ups and downs with his eating these past two days. He seems to eat fairly well for me but has difficulty at night when the nurses feed him. Yesterday, the doctor was still worried about how much Noah was spitting up and was talking about putting in a GT tube (a feeding tube that goes from the abdomen directly into the stomach). Today, however, I had a long "chat" with the doctor. I explained to him that Noah is eating VERY well with me and only spits up when he burps. I convinced the doctor to increase the amount of food Noah eats from 50 ml to 60 ml (that's 2 ounces). If Noah can gradually make it up to 70 ml in a feeding and keep the wet burps to a minimum, he can go home some time next week!!!! We are SO excited!!! We can't wait to finally bring our little man home.

Two Weeks Old

Noah is two weeks old today. As I think back over the last fourteen days, I am amazed how much he has changed. As a way to celebrate two weeks of life, Noah drank from a bottle twice today. He drank 27 ml with Sandy at his noon feeding and then 30 ml with me at 6:00 p.m. It was the first time I got to feed my little man. It is a slow process, with many breaks in between, but he continues to work hard and make progress.
We got the results of his MRI back today. We are very thankful that his brain looks normal, and as we expected, his right eye is underdeveloped and will never be functioning. Tomorrow, Noah will have yet another test — an upper GI study. The doctors are concerned with the amount and frequency that Noah is spitting up (more like throwing up). They will be injecting him with a dye through his NG tube to get an idea what is going on in his tummy.

Noah and I had quite a bit of cuddle time today — only the best time of the day.
Noah and I had an opportunity to read some more books today. I pulled out a book by Mo Willems, one of my favorite children's authors. The students in my class love the Pigeon, Duckling, Elephant and Piggie (main characters in Mo's books) and I am thrilled to introduce them all to Noah. As you can tell, he loved them too.

Daddy's Back at Work

Today started out bright and early. Noah had an MRI scheduled at 8:15 so Nana and I headed to Valley Children's to be with the little man. He needed to be sedated to ensure that he would be perfectly still for the MRI, so while Noah was being taken care of by that anesthesiologist, we had a chance to chat with a friend, Kirsten, who is an ER nurse at Valley Children's. After recovering from a "light sleep", Noah had a visit from his OT, Sandy, and practiced feeding from a bottle again. He is getting much better and only gagged himself twice. He drank 23 ml from the bottle and finished the last 17 ml through his NG tube.
After much cuddling and sleeping, Noah had a visit from Dr. Kelly, the ophthalmologist. Her second examination of his left eye was encouraging. Noah's retina looks good but his cornea is swollen and becoming cloudy. She has increased the eye drops that he is given in hopes of preventing any more damage to the cornea.
We said a sad farewell to our friend Mia today. She has left Valley Children's Hospital and transferred to a hospice home for young children. We have all been touched my Mia and her parents, Sarah and Bryce. They are walking down a crooked path full of uncertainty but are trusting in the Lord to comfort them along the way. We thank them for shepherding us through the trials of tracheotomies and will pray for them in this new chapter of their lives.

Kc returned to work on Monday and has been missing his little man. At one minute passed five, he jumps in his car and speeds towards the hospital to join us. He arrives just in time to change a diaper, empty the ostomy bag, and hold his son while he takes his six o'clock feeding. Unfortunately we have to leave the NICU at 6:30 p.m. because they have a shift change, but Kc is able to spend some quality time with Noah every night.

Happy Birthday!!!

What an amazing 36 hours this has been. Let me back up and start at the beginning.

Kc and I got to the hospital early Wednesday morning. I was already contracting on my own and 3 cm dilated. Our Dr. broke my water at 8:00 a.m. and started some pitocin to get my contractions a bit stronger. Boy were they strong! I gave in at around 10:00 a.m. and had an epidural. By 1:30 p.m. I was 10 cm dilated and began to push. Needless to say, after over three hours of pushing (with several breaks in between) the Dr. had to use a vacuum to help pull Noah out. He was born at 5:59 p.m. He was 8 pounds 4 ounces and 20 inches long.

My first reaction was one of utter disbelief. Noah was finally here! I looked down at my beautiful son and thanked God for our miracle. The first sign that something was not right was Noah's lack of crying. Very quickly he was surrounded by two nurses, a pediatrician and a NICU doctor. Everyone kept telling us that his color was good and he was breathing on his own - he just couldn't cry. He was wrapped up like a little burrito and his Daddy brought him to me. I was finally holding my son. What an amazing feeling. I felt a blanket of love wrap around the three of us.


About an hour later, our pediatrician came in to check on Noah (after his first bath which he DID NOT like). He did a very thorough exam and expalined to us that there were several things he was concerned about. Noah's trachea is very narrow (that explains his inability to cry) and he was having difficulty breathing. He also has an imperforate anus. Noah's right eye was fused shut and the pediatrician was unable to determine if there was an eyeball under the skin. He recommended that we transfer Noah to Valley Children's Hospital as soon as possible.

At 2:00 a.m., Noah had his first car ride - and what a ride it was. He was transported to Children's Hospital in an ambulance. Some day we will tell him stories of when he rode in an ambulance and he will be disappointed that he was too young to remember. Kc followed Noah to the hospital while I stayed in recovery. Noah was immediately seen by several physicians at Children's Hopsital. What a blessing to have such an amazing facility only a few miles away!

After an incredibly long night, Kc came back to the recovery room and filled me in on what was going on. My Dr. discharged me at around 10:00 a.m. so that we could both head over to Children's Hospital. We were met there by both sets of grandparents and our pastors and friends. We were able to pray before we went into the NICU to spend time with our son.

Noah is undergoing his first surgery tonight - a colostomy. He will have a colostomy bag attached to his abdomen for several months which will allow him to have bowel movements. After coming home for a nap and some dinner, Kc and I will head back to Children's Hospital this evening to see Noah and get more information from the doctors who saw him today.

Kc, Noah and I are on a journey together. We are learning to walk along this path that God has planned for us, trusting in His infinite love and wisdom. Thank you all, once again, for your kind words and prayers. We couldn't do this without you.

As soon as Kc (who has slept a total of 5 hours in the past three days) wakes up from his nap, we'll post some photos of Noah. Please keep us in your prayers as we spend the next several weeks traveling back and forth to Children's Hospital.