Sunday, March 9, 2008

waiting game


"Those who trust in the Lord are like Mount Zion, which cannot be shaken but endures forever." Psalm 125:1

We were blessed to have another wonderful weekend with Coy. He continues to grow and thrive in level 2--he's now 4lb7oz! I'm still standing firm in the vision that God has given me--Coy will be home by next weekend. But, per his Neonatologist "He's actually doing 'to good' to come home within the next few days"---I'll explain because I was confused too when the doctor told me this today--He was weaned to 1/10L of oxygen last Thursday (the lowest it can go) and his blood oxygen level has been above 95% majority of the time. For his eye health, his saturations need to be kept between 85-95%, if it goes above 95% there is greater risk for eye damage--there is a correlation between high saturations with oxygen and ROP disease. And since Coy already had ROP disease that required surgery, we can't leave his oxygen like this. So, they have tried to take the oxygen off all together twice and he didn't do as well as they would like--so we're kinda stuck in a holding pattern. Per his doctor--if he required slightly more oxygen, we'd be home within the next few days--but because he's requiring just a minute amount, (which is unavailable with home oxygen tanks) we have to wait to wean him off the oxygen completely before discharge. Yes, very frustrating to think "if he was only requiring more oxygen, we'd be home..." Today, they changed his flow back to 1/4 L and put him on 21% oxygen (room air). He would be able to go home if he required 1/8-1/4L at 100%, but since 1/10L at 100% (again, which is the lowest it can go) is too high, we have to wait. Does that make sense? So, over the next few days, we will try to wean if completely off the oxygen....Grandma Kolkhorst has a vision that he will not be on oxygen when sent home---so let's pray for our combined visions--that Coy will be home this weekend w/o oxygen!

I stressed my concerns to his doctor today--yes, Coy is doing exceptional for a 23weeker (we are still 2 weeks 5 days from his due date) and are talking about discharge (one of his nurses said this is "unheard of" for a 23weeker) but I am not willing for him to "hang out" in a hospital for weeks to wean off oxygen--not with the Flu and other infections/ illnesses that run rampant there. I am not wanting Coy to come home before he's ready, but I also don't want him in the hospital a day longer than he needs to be. The doctor is currently looking into home oxygen tanks that can give a fractionized amount of O2--he's says it's not likely we will find one, but he will try.

Anyway--that was the kinda frustrating, doesn't make logical sense news we got today...but I am trusting in God and know that he will take care of everything...

But on the plus side...Coy continues to nipple all his bottles and his now taking as much milk as he wants! He has to take a minimum of 34cc, but takes up to 50cc with each feeding! He is just the cutest thing ever when he's eating...for preemies to take bottles it takes alot of energy, so after each bottle, he is practically asleep before the bottle is out of his mouth! He did have two bradys this weekend with feeding---please pray that he gets stronger and has more endurance each day with feeding!

My amazing and awesome Sister & Sister-in-laws threw us/me a Surprise Baby Shower this morning! My sister lives close to Chris and I and asked if she could come to church with us this morning--I said sure and when we got to her house at 920am, all of our families and two best friends were there waiting! I was in shock! It was early! But lots of fun! They are awesome and so caring for doing that...we got lots of goodies for Coy!

Please continue to pray for complete and total healing of Coy! He is making progress daily! Please pray for him to come off oxygen this week so we can be home by the weekend! Pray for his eyes to be completely healed! Pray for his MRI (to be done on Wednesday) to be normal!

11 comments:

RyanAndrew2007 said...

I'll be praying that he is off oxygen altogether, but I wanted to let you know that they do make oxygen tanks that will go lower than 1/10. Ryan's tank went down to 1/16 and 1/32.

Coy is just amazing. I'm so happy for you.

Julie

Esperanza said...

Anbelievable... I can tell that you are very very happy... we all are... I can understand how desperate you must be about taking baby Coy home soon... Girl I guess you just have to wait and we all going to keep praying for Coy to remain infection free all the time... God will always protect him... We are glad that you have your baby shower... my family sent you a gift to your house... I hope you can get it before the end of this week... I mean before Coy comes back home...yeah... We all are praying for that... We all love you guys...and really really, thanks for sharing all this moments with all of us... we really prayed a lot for little peanut... and we all are waiting to see him in his home soon... with his little sisters...
We sent you lots and lots of love..
Esperanza Orlando & Liam Penaloza

Chris&AnnMarie said...

Julie--
I have heard that tanks go as low as 1/32 and told the Neo that, but he thinks that when the liter flow is that low it's not "trustworthy." The nurses are even telling us 1/8 is the lowest. Hopefully, someone will figure it out and we'll be outta there soon!

Ann Marie

~j~ said...

God is in control,HE knows the exact moment when Coy will get to finally go home with you and each detail of this journey is for HIS glory and praise not one minute sooner or later. I am praying that you will continue to walk in that peace and hope and that your strength will be pressed down shaken together and overflowing as you prepare for that wonderful and glorious day. Still agreeing in prayer here in California..
julia

Anonymous said...

"Many, O Lord, are Your wonderful works which You have done!"
Psalm 40:5

Nana in Nashville said...

We are praying and trusting God for a perfect M.R.I. and for Coy to go home this weekend without oxygen.Psalm 121. 1-2 says "I raise my eyes to the mountains -where does my help come from?My help comes from the Lord the Maker of Heaven and earth"

John said...

praying for you guys for wednesday!
I am praying for a great report for coy!

much love-- let's do dinner soon!

John and Kelly

Ann Glowacki said...

Wonderful news, Ann Marie!

I am so happy and amazed that Coy will be going home soon... and before his due date! WOW! I was going to tell you the same thing that Ryan's mom said... Jaxson's tank had settings for both 1/16 and 1/32/Liter... Jaxson was on 1/8Liter for 5 weeks after he came home. Maybe 1/8 is the lowest they prescribe for the reasons you said... Anyway, I am so thrilled for you and want you to know that Coy is the most amazing and beautiful little boy! You two are very blessed!

Love,
Ann, Shawn, and Jaxson

Anonymous said...

Ugh - we know how frustrating it can be to be soooo close and then told you have to wait a little longer. Our daughter had odd, annoying little things come up right before her transfer from PICU to regular floor and again the morning she was to be released. Both turned out to be non-issues, but it was frustrating to be able to see the end and think we might have to wait even another day.

I'm praying that God gives you His peace and makes this a non-issue for Coy, too!! He is faithful and WILL see you through this. :o)

Cortney Kovar said...

Ann Marie~ I hope yiou read these posts because I have no email address to send you a message. I was reading about the oxygen tank problem your doctor stated. I was fiddling on the internet (had a lull a work) and I found this site:www.specialtymedicalsupply.com. On their site, they have a pediatric oxygen flow regulator that it states can regulate the flow of oxygen like this: "This Pediatric Oxygen Regulator has very small flow rates of .03, .06, .12, .25, .5, .75, 1, 1.5, 2, 2.5, 3 Liters Per Minute. Overall length less of than 4" and weighs just 6.9 ounces. " I am not sure if this helps, but I just had to send it to you. Here's the exact link to the pediatric regulator: http://www.specialtymedicalsupply.com/medical-supply-products/Pediatric-Oxygen-Regulator.html.

Hope this helps! Let me know, my email is ckeagle8@aol.com

Anonymous said...

I'll keep Coy in my prayers and our God is a mighty god. I know Coy will be breathing on his on, infection FREE and he will be coming home to his own room. God is so FAITHFUL and very powerful he always has the last say so. I love you guys so much:)

LaQueta