Friday, January 29, 2010

Appointments...and more Appointments...

Jacob had alot of check-ups this week and all the doctors were pleased with the progress he has made in the past 6 months.

Our week started with a Cardiology follow-up appointment. Jacob had an Echocardiogram done (an ultrasound on his heart) to look at his pulmonary hypertension and heart function, and then we met with the Cardiologist. His Echo looked great and the doctor didn't see any changes in heart function, so he discontinued the medication for pulmonary hypertension--sildinafil--that Jacob has been on since our stay in the NICU. more medication DONE!!! Yay!

On Wednesday we had a follow up appointment with the NICU clinic to monitor development and overall health. We were so pleased to find out that Dr. Patrick Jones, a Neonatology fellow at VCH, was going to be the one to do the assessment and follow-up on Jacob. He was in the delivery room the night of Jacob's birth, walked with Jacob and Jeff down the long hallway to the Children's hospital, and was one of Jacob's doctors while in the NICU. He was with us from the beginning, and we were all smiles as we showed him the progress Jacob has made. During that visit we had a developmental assessment done. The assessment projected that Jacob's physical development is equivalent to an 8 month old, his cognitve development is equivalent to a 10 month old, and his communication development is equivalent to a 12 month old. We are so proud of Jacob's progress and despite the tough start, he is moving along at a steady pace. We go back at the ages of 2 and 3 to do a more intense evaluation, and we're hopeful that Jacob will be fully caught up by then.

Our final doctor's visit was today with the Pulmonologist (lung doctor). He was pleased with what we had to tell him about Jacob's oxygen requirements, or lack thereof, and said Jacob looked and sounded very clear. It is rare for a child to come off oxygen during winter months, because of colds and RSV, etc. So, we will remain on the oxygen until Spring. As much as we want Jacob off oxygen, this was what we expected. However, he did say that he would like to schedule a sleep study for Jacob some time in early April. During that sleep study they will take Jacob off oxygen and have a variety of monitors recording information about saturation levels, etc. SO....if that goes well, we will be able to come off oxygen completely some time in April!!! YAY!!!!!

As always, Jacob did extremely well during these visits. He's such a happy kid, and didn't seem to mind the doctors messing with him, the nurses checking his blood pressure, or the fact that he was weighed, measured, and had his sats checked during every visit. We're so blessed that Jacob has such an easy going personality.

Here are a couple of pictures of Jacob from this week. He's such a cutie!
Jacob in his Birthday outfit on Tuesday.
Jacob sitting with Papa Bear playing the keyboard. How cute!

Thanks for checking in with us! Have a blessed day!

Monday, January 25, 2010

The Amazing Jacob turns ONE!!!!! (although it's officially on Tuesday)

The official day is Tuesday, January 26th, but we celebrated this past Saturday with a party with close family and a few friends. The theme was Super Heroes. For a long time Jacob had been called "The Amazing Jacob" because of all the amazing things he and God were able to accomplish together after birth. So, the Amazing Jacob got a Super Hero party, complete with his own logo and cape.
There were many family members that traveled from far lengths to spend time with us (Jacob) for the weekend...all the way from Atlanta, New York, California, and Texas. The Amazing Jacob is quite loved by all! Here's a picture of GG and Aunt Jamie.

As the guests began to arrive, Jacob quickly became the center of attention. Just as it should be!
There were presents opened and directly put into the mouth...

There were smiles during cake time...
There were moments of distress...
...and then there were moments of cake went flying all over MOMMY!
Of course there was food...
...and lots of decorations...

...a high chair that was ready for action...

...and a front door showing who would be the center of attention!
It was a wonderful celebration and full of great memories.
Thank you to all the people that made it possible.

Tuesday, January 19, 2010

Rollin, Rollin, Rollin, Rollin, What?

The title says it all. Jacob has finally showed us that he CAN in fact roll over. He has had all the steps for a while now, but never put them all together...until recently. This has been alot of work...and alot of stretching...and alot of practice...but it finally paid off!

Way to Go, Jacob!

Sunday, January 17, 2010

Who needs oxygen???

So, this morning, I went into Jacob's room to change his diaper and get his day started....and this is what I walked into...

I promise you...I did not take them off and I don't know how the nasal cannula ended up behind his head on the bed, but nevertheless, that's exactly where they were. So, I snapped a picture and then snapped a picture of the Sat monitor as well. We were TOTALLY excited to see this!!!

The number on the left is his sat...that's right 100! Yay! The Amazing Jacob is showing off for you all...and we're pretty excited about it!

I love this picture of Jacob and Jackson. It's just precious and I had to share it with you all. Jacob is really beginning to look like a little boy and not a baby. (sniff sniff) And Jackson is so great with Jacob, he lets him do just about anything to him. It's wonderful.

Didn't you know that shoes are the latest and greatest in appetizing treats? Don't worry, he can't walk yet, so these shoes have never really been on the ground. :) But sooner or later we're going to have to let Jacob in on the are really pretty nasty!

For those wondering about Jacob's upcoming appointments...we've got Cardiology on January 25th and Pulmonology on January 29th. These are the two doctors that decide what treatment will be for lung growth, pulmonary hypertension, and oxygen requirements. We are anxious to see what they have to say about Jacob's need, or lack thereof, for the oxygen. Thanks for lifting him up in prayer about these things.

Thanks for checking in with us. Have a wonderful day!

Tuesday, January 12, 2010

It's Play Time!

Jacob's personality is really starting to show more and more these days. Here's a few pictures of him from the past few weeks.

This one is so cute...Jacob with his "laptop" and dad with his!

Jacob still hasn't figured out how to get the ball in the basket, but maybe soon! Looks like I caught Jackson in a yawn or something!
The days are going by so quickly. It's hard to believe that our little boy will be one year old very soon. Yikes!

My latest project includes taking all Jacob's medical records, insurance claims, TEIS information, and medical supply orders and putting them into a nice, neat, chronological, and organized binder for future reference. I have been putting it off for a while. As daunting as this sounds, it's actually been pretty amazing to go through all the paperwork. As I was reading his birth report last night, I was amazed at how technical everything was, and that I actually understood it. I guess that's what 101 days in the NICU will give you! Some of the doctors actually found ways to put a little bit of themselves and the personal things into their reports. For example, the NICU doctor on the night of Jacob's birth wrote that Jacob had pictures taken and was seen by mom for a couple of minutes before taken to the VCH NICU. It didn't feel like a couple of minutes, but I can still see that moment in my head. Nice that he reported about it. He thought it was important enough to note it.

Interestingly, I actually did find a mistake in one of the reports doctor (that we saw all of 1 time) put in her report that Jacob received his surgeries while on ECMO.....when actually....he was NEVER put on ECMO. Pretty big difference! I guess she must have assumed that, or just glanced through a previous report and thought he had needed it with his previous history. Who knows, but I thought it was interesting.

Enough of my ramblings...thanks for checking in with us today. Please keep praying that Jacob will continue to make progress in his gross motor seems like that's one area where we need alot of help. Have a blessed day!

Friday, January 8, 2010

Rock Out!

Didn't know we had a musically inclined child, did you?

I had to use large rubber bands to hold the keyboard to the high chair...otherwise he'd find a way to throw it on the ground.

Monday, January 4, 2010

Portraits and Update

Back in November, we had some family portraits done by Mary Twitchel Photography and here's some of the photos she captured for us. Our sweet boy did so good and smiled quite nicely for the photoshoot. For Christmas we purchased photos of Jacob for our family members, and they loved their gifts!

Many people are asking for an update on Jacob's health, development, etc. Here's the skinny on the Big Guy...

He's weighing about 24 pounds and measuring about 32 1/8 inches (we had a doctor's visit today). He is wearing size 18 months clothes (mostly for the length) and size 4 shoes.

He can sit for hours and hours on end, and moves his torso as though he wants to be mobile, but has not started crawling just yet. When put in the crawling position, he will tolerate it for a longer length of time. He can stand (finally) for longer lengths of time and is working on balancing his weight.

He can use his thumb quite well and is working on incorporating his index finger with it. He can take things out of containers, but tends to throw them on the floor rather than put them back in. :) He LOVES throwing things on the floor. He can say words like "La La, Ma Ma, Ba Ba," and sometimes puts them together to make it sound like talking. He also makes loud grunts to call attention to himself. He can shake his head NO, and moves his body to the beat of music. He has started to wave his hand to say hi and bye. He loves turning pages in a book and making lots of noise in church. :) He has started curling his tongue in hismouth and is blowing raspberries some. He puts EVERYTHING in his mouth and likes exploring different textures on his tongue. He has 8 teeth, four on the top and 4 on the bottom, and is currently drooling everywhere...the molars are starting to come through on the bottom.

Medically, he is doing well. We have gotten through one bad cold, and a serious stomach bug with things coming out of both ends (if you know what I mean) with no medical problems. Yay. He's currently on 1/8 liter of O2, and satting great! In fact, we have stopped putting the bandaids on his face to hold the O2 in place and it falls out all the time. At night, we will find the oxygen around his neck, on the left and right sides of his face, and his O2 Sats are still great. We go back to the Cardiologist and Pulmonologist at the end of January for a follow up about his oxygen. Maybe we'll be able to wean earlier than expected?????? Maybe....just maybe????

Oxygen or no Oxygen our little Jacob is just the most amazing gift we could have ever been given. Every day with him is a reminder to us that God has entrusted us with a special person to raise and love. We were willing to give him back to God before he was born, and God, in his great love and mercy, gave him back to us. I will never understand that, but will never cease to Praise Him for it.

May you look at your life today and think about all the ways that God has worked to show you love and mercy. Thanks for checking in with us. Have a wonderful day.