Tuesday, April 28, 2009

A Boy and his Dog...

The doctors are telling us 3 WEEKS AND JACOB WILL BE COMING HOME!!!!!!!!!!!!!! We don't have an official "target" date, but they are beginning to get our discharge information ready. YAY!!!!!!!!!!!!!! Praise God that we get to bring him home! We will be ready (as ready as we can be) and Jackson will be waiting...

See...even Jackson says he is ready for Jacob to come home!

Jacob doesn't know it yet, but there's a bigger version of that puppy dog waiting for him at home. Jacob will just stare at his "Jackson" and smile. He sometimes tries to reach out and touch him too. His "Jackson" watches over him just like the real one at home will soon.

On another note, Jacob is doing well without oxygen and nasal cannula. His breathing is still fast, but its normal for him and that will slow down as he grows more lung and gets older. His oxygen saturation (the amount of oxygen getting to the brain and body) is always in the 90's. (Normal ranges are 92-100%) The doctors told me that we need his sats to remain above 92 all the time. If he dips below that they will want him to go home on oxygen. Just the thought that we get to bring him home is wonderful, but it would be miraculous if he could come home without oxygen. We're praying that in the next couple of weeks Jacob will continue to sat above 92, so that we can bring him home without respiratory support. That would be God at work!!!

Have a blessed day today!

Friday, April 24, 2009

What's missing from these pictures???

What's missing???

Is there something missing???

What's missing you ask???

OXYGEN AND NASAL CANNULA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Today was a monumental day for Jacob Elliot Tuley, our miracle child. This is the first day of (hopefully the rest of...) Jacob's life that he is breathing all on his own. Words can not express the feelings that Jeff and I had this morning as the doctors said that they wanted to give Jacob a try of breathing on his own. For over 5 months of our pregnancy we grieved and prepared ourselves as best we could for what the doctors had told us at our 20 week ultrasound, that Jacob would never be able to breathe. We spent nights in the NICU holding our breath, "living on the edge" and not knowing if Jacob would ever make it through. We told ourselves time and time again that we didn't think God was going to give us our miracle, not that He couldn't, but we just didn't want to get our hopes up. And yet here we are, by the grace of God, watching Jacob breathe without ANY support. It is with such joyful tears that we say, God is giving us the "glorious impossible!"

Please pray for Jacob, that God will breathe into him and give Jacob the strength he needs to continue breathing without support. Early on, when Jacob was very critical the doctors said, "IF you go home, you'll go home with oxygen." How we would love to prove them wrong! Go Jacob, Go.

We ask God to shower blessing after blessing on all of you for earnestly praying for Jacob's recovery. It is without a doubt the reason we are still here. It is our prayer that you have become closer to God through this journey, that you have seen God at work , and that your relationship with the Almighty will only become stronger. Glory to God for he is good!

P.S. Thanks to Cousin Stacy for making the AWESOME blue crocheted blanket for Jacob (in the pictures above). Stacy, that's amazing work! We love you!

Tuesday, April 21, 2009

Goodbye Vapotherm...

Jacob has come off Vapotherm! He still gets some respiratory support through a nasal cannula, but it's minimal. In fact, he is on 1 liter of flow and 21% oxygen (room air is 21% oxygen, so he is only getting the extra flow). AWESOME!!! The doctors all grinned today in rounds when the doctor (resident) read Jacob's report about his respiratory support. Jacob's doctor said, "Jacob is doing phenomenal! He really is a miracle kid!" The next steps for his respiratory support is to ween the flow of oxygen until he comes off completely. That's what we're praying for!

Jacob is still tolerating full feeds, but hasn't gained enough weight this week. The doctors want to see a steady amount of weight gain each day and Jacob isn't doing that. One reason is that he works harder to breathe than most of us do. His respiratory rate is higher than a normal infant, so he's burning a lot of calories just to breathe. He's taking full feeds, but he's using all the calories. They are increasing his volume and calories today to see if that will help. We need to pray that Jacob can "wow" the doctors once more and gain, gain, gain.

Please keep praying that Jacob will ween off oxygen completely and gain weight steadily. Thanks again to all our prayer warriors for hanging in there with us. God hears our cries for Jacob and is blessing us with being able to witness his hands at work. What an amazing journey we are on!

Also, please keep Kaden Kuehl's family in your prayers. Kaden is another CDH baby that we have been following through another blog. He passed away yesterday.

May you be blessed today!

Saturday, April 18, 2009

Yay Progress!

Jacob continues to make amazing progress, thanks to prayers and the work that God is doing through the nurses and doctors. We truly believe that this journey has been about the verse that God showed us the day of Jacob's first surgery, ask and you shall recieve... God has given us so many blessings.

Jacob's report:

Jacob is on 2 liters of Vapotherm, this is remarkable! We were told that it would take "a while--like 1 or 2 months" for him to come down on his Vapotherm. A week ago Wednesday we were on 6 liters, and now we are on 2 liters. Go Jacob, Go! The doctors are really pleased with his progress on his respiratory support. He continues to tolerate full feeds and has been steadily putting on weight. He needs to gain weight and grow right lung.

Jacob and Dad...can you see the resemblence?

Here's a picture of Jacob as he is sleeping. I was playing with some of the features on our camera. How cool is this!
A couple of you have asked...YES, Jacob is already a Cardinals fan, not that he has a choice. Thanks to Jackie and John, friends of Jill, for his first Red Bird onesie! We're working on growing into it!

Have a wonderful blessed weekend and thanks for the prayers!

Wednesday, April 15, 2009

Family Time!

Gramma Tuley came up when Jacob came off the vent to help us out. This was one way we thanked her for all that she does for us! :) What a special treat for Jacob (and Gramma).
This is Uncle Buh and Aunt Benny (Jon and Jenny) spending the afternoon with Jacob. They read a book to him and laughed as he was learning how to turn his head.
Papa Bear and Gramma Jo came for Easter to spend time with Jacob. They had a great time watching his "numbers."

Papa Bear holding Jacob and reading a story to him.

What a precious face...

Update on Jacob:

We're doing well. Jacob is down to 3 liters on the Vapotherm. He's still eating and tolerating full feeds. He is almost 11 pounds, real weight. He had extra fluid weight earlier that he got rid of and now we are gaining real weight. We need him to continue in that direction to help grow more lung too. He still has alot of mucus in his chest that he is learning how to cough up and get rid of, but more prayers for that would be great too!

Thank you for continued prayers. Jacob continues to be evidence that God is working miracles.

Sunday, April 12, 2009

Happy Easter!

What a blessing today has been for us. We attended church this morning, and while it was very hard to be away from Jacob, it was a much needed "recharge" for us. God has undoubtedly given us an amazing gift and we can't stop thanking God for honoring us with Jacob's life. He's such a MIRACLE...we could not list the number of miracles that have had to take place in Jacob's life for us to be where we are today. They are countless!

Jacob says, "Happy Easter!" He was all smiles today at the hospital and we were able to catch a good picture. Yay!

On Saturday night we gave Jacob a nice bath and got him dressed in his Easter outfit. He even has blankets to match. He conked out within minutes of getting cleaned up. At least we know how to get him to sleep!

We are up to full feeds...AWESOME! Jacob is getting 82ccs of milk every three hours, and loves every drop! Hopefully this will help his lung to grow the alveoli that he needs to come off the Vapotherm. We are currently on 4 liters of flow (down from 6) and 24% oxygen (room air is 21%). The doctors seem to think that coming off the Vapotherm will be our biggest challenge and may take a couple of months. But, when we come off Vapotherm, we're that much closer to taking Jacob HOME! Please pray that Jacob's lungs will grow beyond the doctors' expectations and that he will be able to come off Vapotherm sooner than expected. It would be one more miracle we can add to the list.

And last, but not least, a video of Jacob. On the first take, Jacob was right on cue. How often does that happen? The first few seconds are not that exciting, but keep watching!

May God bless you, as you have blessed us! Happy Easter!

Monday, April 6, 2009

The Pictures We Promised...

Jacob getting cleaned up. He's not so sure about bath time yet.

ALL CLEAN and in a big boy outfit. It says "Dog Gone Cute" on the front. :)

Out with the OLD...

In with the NEW!!!

Jacob in his new big boy bed looking at his monitor, it's the only "TV" he's ever seen. :)

Jacob admiring his new mobile. He loves looking at this thing. His eyes track as the animals spin around. He's amazed, can't you tell by the look on his face!

Just precious!

Jacob practicing sitting like a big boy. He's got NO muscle tone because he's been laying in bed for so long. So, we have to start working on his range of motion and holding his head up. He is starting to turn his head and look around. But he still looks funny all hunched over, like an old man! He's not so sure about this stuff either. :)

One week and counting...

Jacob has now been breathing without the ventilator for a week! WOW. It is so encouraging to look at our son and see his chest moving up and down all on his own, even if it is fast. Each day we continue to be a part of a living miracle. What a blessing.

Right now, Jacob has alot of mucus in his lungs that he tries to cough up, but can't get all of it out. This doesn't help his breathing... If he can get all those secretions out of his chest, then breathing may become a little easier for him. Please pray that Jacob will be able to cough up all the mucus in his chest so that he can begin to breathe easier and maybe less frequently.

As far as feeds go, Jacob is up to 43cc's, about half way to a full feed. Yay! His body is tolerating the increases and we have the dirty diapers to prove it. We never thought we'd be so happy about changing messy diapers. :) The doctors are going to double bump his feeds for the next few days to get him to full feeds; this means they will increase by 5 or 6 ccs two times a day, if he tolerates it. Please pray that Jacob will continue to move these through and that his body will tolerate these changes.

Thanks so much for the continued prayers. Keep them coming!

Pictures will come later (cause I know that's really what you all want to see...hee hee).

Friday, April 3, 2009

5 days and 24ccs

That's right, 5 days of Jacob breathing on his own (with the help of vapotherm) and up to 24 ccs of milk every three hours! YAY Jacob! YAY God!

We are so thankful for the progress that Jacob has made in the past few days and grateful to God for continuing to bless us with Jacob and his life. However, it has not been all peaches and cream for us in these past five days (we are in the NICU and riding the roller coaster, of course). Jacob's right lung is still small and underdeveloped, so he breathes faster than a normal infant would. Yesterday we noticed that his breathing had increased (80-90 times a minute) and his heart rate was up as well (180-190). They did an X-Ray and found that his right lung had partially collapsed. They turned up some of his support on Vapotherm for two hours and laid him on his left side for the night, so that his right lung would be up. Within 12 hours Jacob had recruited the right lung back to its original size (half the size of his left, still small). We're encouraged by this!

We need continued prayers that Jacob's right lung will get stronger and stronger as he grows and that we can stay away from the vent. Doctors have told us that a child's lungs can develop up to the age of 8, which means that Jacob could be able to breathe easier as he gets older, but we need to continue to recruit more and more lung on his right side. The little amount of right lung he has is amazing, considering that his ENTIRE LIVER was in his chest. Maybe one day we can show you x-rays from his birth to now...What a testimony that God can do miracles. But, we still ask for more.

We are doing better on feeds, but still a long way away from full feeds. We are up to 24ccs every three hours (a little less than an ounce). A full feed is 70-80ccs every three hours. Each day the doctors will increase his feeds by 5 or 6 ccs if Jacob does well. The faster we can get to full feeds, the sooner Jacob can come off the IV fluids. Keep praying, it's working! :)

Wednesday, April 1, 2009

Still Breathing...

So far, Jacob is still vent free! We have made it through two whole days and he still looks pretty comfortable. His lungs sound like they are exchanging gases well. At times he looks like he is breathing more frequently than normal, so we are keeping an eye on that. The last time we came off the vent Jacob was constantly working hard; breathing 80 times a minute on average without ever slowing down. A normal infant will breathe anywhere between 30-60 times in a minute, so that's what we're shooting/praying for!

As far as feeding is concerned, we have been making some improvements there too! Yay! Jacob is still getting 12cc's every three hours (it's less than half an ounce) but he is doing a much better job of moving the milk through. We have not had to skip a feed since Monday evening, this means that Jacob's stomach and intestines are beginning to wake up! We still have a long way to go, but it's a start. A full feeding is around 70cc's every three hours, but we're working on it! Thanks for the prayers...keep them coming!

I caught this picture today of Jacob, it's a semi-smile. But, I thought it was too cute with his hands up by his face. What a precious gift that God has given to us.