Jul 22, 2009

Jake's surgery

As most of you know our little one Jake was diagnosed with a rare genetic eye disorder which left him almost completely blind. After seeing a retina specialist it was determined that surgery would be needed in order to give Jake the best chance at sight. There was no promise of sight for Jake but there was a good chance that with surgery, glasses and a lot of therapy there may be some sight. This is a progressive genetic disorder so this may be a life long battle for our little man.
Basically Jake's retina's were completely detached in both eyes preventing him from seeing. There was fluid build up between the retina and the lens blocking his vision. The surgery would remove the fluid and reattach the retina.

Last week we brought Jake to Children's hospital in St.Paul for his two surgeries.. One was scheduled for Thursday and one was scheduled for Friday. Jake and were going to be stay at Children's from Thursday through Saturday. We got to Children's Thursday afternoon to get Jake prepped for surgery.

Jake and Daddy getting ready

The surgery took about 2 hours. It felt like it was about 10 hours. Brent and I were nervous wrecks. Neither of us were prepared for what Jake was going to look like. The surgeon came out after the surgery and said that she was able to reattach the retinas but that she was not expecting the damage that was already done. His retinas were badly damaged. She said that it looks like his eyes have been like this since they were formed in the womb. She did give us some hope by saying that the retinas were attaching like they should. Unfortunately it would be 4-6 months before we Will know if the surgery was a success.

Because the retina is so sensitive there is only so much you can do in one surgery without pushing it too much and causing more damage.

Our baby boy after his first surgery

In his room after the first surgery

Grandma and Jake. I love how he is holding her necklace.

The second surgery went well. The retinas in this eye were the same as the other. One eye isn't better than the other.

After his second surgery.. He is starting a stuffed animal collection.

Night night sweet pea

I thought his little feet were so cute and sad all at the same time.

On our right home.. Finally sprung from the big house.

My new nickname for my little sweet pea is buggy

Brent's work sent this.. How thoughtful.

The past few days have been very hard. Buggy is very sore and is also teething. He refuses to eat and cries most of the day. The doctor and surgeon said that is normal for especially after everything his little body has gone through. We are just praying for strength and for a speedy recovery for our little man.
Friday we see the surgeon for a check up. I feel bad saying this but his eyes are not the best thing to look at right now. They look painful. I can't wait for my baby to get his beautiful peepers back. Next month he will be fitted for glasses and we start therapy soon.
Even though this is probably two of many surgeries we are thankful for our family and friends who without them we would be lost.
Brent and I would like to thank our family and friends that came to visit us in the hospital, those that called and those that just let us know they were thinking and praying for us. We are thankful for all the support we have.
Love you all,


Three Little Pigs said...

Oh Kim, I cannot even begin to imagine what you and your family are going through right now. Your little man is one tough cookie! And with as much love and support as he gets, he will turn out to be one amazing kid. I'll keep Jake in my thoughts and prayers and hope the months ahead will bring good news. The feet picture is priceless. They look like two little meatballs!

Robyn said...

I'm hoping you get good results. I can't imagine what you have been going through.

Leslie Collins said...

I just cannot imagine how you guys must feel right now. I hope that the surgeries and therapy can help him out.

Once again, I will say a prayer for a speedy recovery. :)

Julie said...

I cannot begin to imagine what you and Brent are going through Kim. I am sure it is very hard to have to watch Jake go through this. I am glad the surgeries went well and I hope Jake has a speedy recovery. I will keep you all in my prayers.

Kristi said...

Hoping and praying for the best. Glad you guys have a lot of support, I fell terrible that i am not home right now to be there for you, but I am sending strength from afar! Love you honey, let me know if you need anything..... xoxoxoxo

Michelle Leigh said...

Oh Kim, I'm so sorry you and Jake have to go through this. He's a tough little guy though and he'll make it through. Hopefully you will have a good check up today. I hope he is well on his way to a full recovery and that he's back to normal.

Fishsticks and Fireflies said...

(How did I miss this post?!)

I am so glad to hear that surgery went well and that Jacob came through with no complications. The road ahead is sure to be long and hard, but the fact that you and B. are onboard and already advocating for him will make a world of difference!

(And teething . . . Biter Biscuits, frozen bagels, frozen washclothes, direct pressure on his gums - ie., massaging them with your finger, and Hyland's Teething Tablets - most grocery stores carry them - they are homeopathic, and while I was initially skeptical, they work great! At night we always pulled out the big guns - Tylenol or Motrin before bed . . . it took the edge off and let them sleep. Try to stay away from Orajel and the like - they tend to numb the whole mouth and harden the gums. I hope it passes quickly!)

Charlotte Klein said...

Oh, my goodness... This is so heartbreaking to see a little boy in this amount of pain :( I have issues with my retinas as well (I'm very near sighted and have been dealing with eye issues my entire life) so I can empathize with this completely.

Let me just say that you guys are incredible parents. Truly. I know that this could not have been easy to see your baby in this amount of pain, but you are giving him a chance at vision and I'm sure that you look back from where you were on this day, and you can see the progress you've all made <3

Sending so much love to your family. That pic of him clutching nana's necklace got me all choked up, *sniff*

Jess Downey said...

Such a beautiful story. You can just feel the love for your son and family in this post. I loved that you shared it! How scary that must have been. Also, Buggy is the cutest nickname ever!

Kimberly said...

What a sweet, sweet boy you have there and all that love and support. I cannot even fathom all the emotions you all must have went through and the subsequent pain, fight, determination, to get to where you all are today. My goodness. The things some children and families go through is not fair. I was a pediatric ER nurse for 10 years and I saw some heart breaking things and some incredible things too. Kids are the most amazingly resilient warriors ever.
I love that you shared this journey with all of us - I hope that someone who is going through the same stumbles upon this. xoxo

The Flynnigans said...

Wow. Jake is lucky to have such a great momma that cares so deeply for him and that advocates so much for his wellbeing. You've been through a lot and so has he in such a short life. I truly hope that he continues to thrive and this new school fares him well. He seems like such a lovely, caring boy, but I'm not surprised. He has you as his momma. :)


Dominique @ Ohbeehave said...

Your poor little man!! I really hope he did have a speedy recovery and is able to find a solution for his eyes soon.