Birk

So this week has brought up back to Ohio for what we are hoping is our final evaluation. We met the pulminologist in clinic yesterday. He was not as positive as he was when we were here in January, but both Nick and I felt that he was like that to maybe protect us from getting our hopes up.

Birk just went into the OR for his procedure. This is such a surreal experience as a parent. Both Nick and I get to be with Birk until he 'falls asleep'. To watch your child go from watching Dora (thank you to the OR nurse for bring her phone with Dora on it) to just sinking into your lap falling into a deep sleep is very strange. In some regards it is heart breaking. I hate that he has to go through this.

We are hoping and PRAYING that it is time. We know that Birk is just as happy and fun with a Trach as he will be with no Trach, but we want a normal life for him. We want him to be able to go places w/ us and we don't have to suction him, we want people to stop looking at him like he is different. Birk is amazing and he has been through so much and we only want the best for him.

So here we are in the waiting room YET again and we again are as hopeful as ever. We know that God is watching over Birk and He has a plan for when this will take place. If it isn't now...it will be some day. I trust in God that He knows what is best and will lead us and this amazing team of doctors in that decision.

I will update when a decision has been made.

With Love,

Jenny

Bad News

So these past two weeks have been a bit of a challenge. I feel like we've been surrounded with disappointing or very sad news. Old friends, and new friends have been affected, people are moving away and we are saddened by all of this. One thing that has given me a glimmer of hope is the thought of Spring. With Spring comes change and with change comes new life.

With all of this sadness it does have me thinking and praying a lot on Lent. A time of ultimate sacrifice and yet in the end we have HOPE, GRACE, FAITH, and LOVE! We have the unending love of a power so big and strong that sometimes we can't even comprehend it.

My prayer for this season is this ; Dear Heavenly Father, please bring those around me who are suffering a sense of the peace and hope you have given me tonight. Hold them in your arms and remind them of your unending love. Heal their pain in a way that they will come closer to you. In your name I pray! AMEN!

Things I will miss and things I will not miss

So with the pending trip to Cincinnatti on my mind I keep thinking about all the changes that are to come for our family (hopefully). I wonder what life will be like with a child who does not have a serious medical issue? I think of the milestones we've already hit...like bringing them home, having 2 wireless babies (that was a great day), cutting back on all the medicines that they were taking etc. What will our life be like?

It may sound strange to some, but the #1 thing I'm going to miss when Birk doesn't have the Trache is the smell that Birk has. Ok, you may be thinking to yourself...'uh, gross Jenny, why would you like the smell of secretions?'. Truth is I DON'T. I just love the smell of Birk. It is the only real smell that I've known on him since August of 2009. It is so unique. When I nuzzle in to give him a kiss on his neck, trying to kiss around the Trache collars he wears every day I smell it. I will miss that.

Things I know I will not miss. Carrying that stupid suctioner EVERYWHERE we go. It's heavy, it stinks and I hate it. I will also not miss suctioning Birk. I feel bad suctioning him in public. I wonder what people are thinking when I have to stick that catheter down his trache. I wonder if it grosses people out. I will also not miss how often we have to suction him when he is sick. We go nights where we get maybe 2 hours of sleep because of the secretions. That I will not miss.

God has a lot in store for our family this year. I'm so anxious to see how it plays out. One thing I do know is that he gave Birk the gift of courage and resilience. I know I've said it before, but Birk is the strongest little man I have ever met.

Oops...

I just noticed that I started 2 other blogs with a comment about how I'm not so good at this blogging stuff. Now I really have to follow through! :-) This is beginning to be a little embarrassing!

I'm not so good at this blogging thing

So I started this blog several months back thinking I would document my children's lives and maybe even a little of my own, but alas....I have not done so well. We have a lot of changes happening in our lives in the coming months so my promise to myself and to anyone else who cares...I'm going to work to update much more often!

First major change is that the twins are now 2. Holy cow what a ride. I am still in complete amazement at those two. The life that they have lead in 2 short years is just amazing. What a testament to God's true blessings for us. They are both talking so much, love to read books and have a wonderful love for Mickey Mouse.

We head back to Ohio for another evaluation for Birk the first week of April. I'm very anxious for this appointment as I'm guessing we might hear if he will have surgery right away of if they want us to wait again. We are so hopeful for him, but year a bit fearful. This little boy is amazing. While having a Trach, he continues to thrive and to be honest if we didn't have to suction him once in a while.. you would never know anything was different. I'm nervous about what set backs he might experience with this surgery...but know the end result will BE TOTALLY WORTH IT. My daily prayer is for God to just hold Birks' hand (along with my Dad) and guide him to this surgery and through this. I know that if Birk can overcome being born SO early, having a Trach, he can do this.

Ok, so I know I could have probably given a much longer more extensive update, but my promise is to write more often so I need to save some things! :-)

Thanks for stopping by!

It's been a while

So my plan to blog often....has FAILED! I guess I should have listened to my family and friends when then told me how busy I would be with 2 babies! I don't find much time to do MUCH OF ANYTHING. In fact some things I used to love have really taken a back seat. I'm not able to run every day like I used to. I try to find time to run on the treadmill and run in races when I can, but that's about all! I did find time to train and run the Des Moines 1/2 Marathon! I was really proud of myself and thought I had a great time. :-) I'm planning (and I use the term planning 'loosely') on running the full marathon next year!

Ok, on to more important things; Birk and Addy. They are GREAT. Birk is weighing 21 pounds these days and Addy is just under 20 pounds. They are truly the best of friends these days. THey love to run and play with each other. They are talking so much and repeating everything we say. They are very excited that Santa or 'Danta' will be visiting our house in 2 days.

We are heading to Ohio for Birk the 1st week of January. We were there in July and we have to go back because his lungs just aren't ready for the surgery. Since surgery will take him a while to recover they want to make sure he is good and ready. We are hoping and praying for good news and a date for the surgery. We just want our little boy to be 'normal'. :-)

Ok, so I am going to try and update this as often as I can. Stop back for more updates!

Sickness

It is November 1st and I am already 100% positive that I hate cold/flu season with babies. Both Birk and Addy have now had the 'crud' (Birk more than Addy), but none the less. They both are fighting it off, or have fought it off, but I am exhausted. I'm tired to sucking snot out of their noses, giving breathing treatments and administering medications. HOWEVER, with that said...I'm so thankful that they are doing as well as they are. Both of them are up against the odds. Being born so early and having under developed lungs makes it very hard for them to fight infections of this kind. My babies are the best!!!

While they are strong fighters and doing so good..I do have to say that I will be SO THANKFUL when this season is over. They will be bigger and stronger and at that point we can hopefully stay healthy for a substantial amount of time. I have always said I do not want to wish time away with these two. While I know I will look back some day and wish for them to be babies again, I do want then to be healthier and stronger.

Here's hoping for a very mild winter, fast moving cold/flu season and some much needed rest for our little family!