December 2011

Sorry for the lack of updates recently.  In this case, no news is good news!
Not a lot to report.  After his cath we had a follow-up and Chest X Ray at Nemours Cardiology here in Pensacola.

He is making great progress- acceptable weight, walking, talking & normal appearing 2 yr. old.  We are so thankful!  He is 24 1/2 lbs. with sats in the 80s.  He does get tired with activity & asks to be held; but such a happy boy in spite of everything.

He has a routine Cardiology appointment next month, and we anticipate his 3rd heart surgery in approximately 2 years.  We will delay it as long as possible, given the complications that children have had post Fontan as a result of increased pressures to the liver.  Hoping for some new solutions/treatments in the mean time.

I am posting from mom's computer, so no access to our pics right now.  Will add some recent ones later.

We had a wonderful Thanksgiving in Iowa!  We were able to visit our family friends, the Humphreys in Northern GA on our way up; and saw lots of family in IA!- Ted's great grandma, Aunts/Uncle, & cousins' families were able to meet Mitchell.  We had a great time with everyone.  We were able to see Jodi's cousin's family when we were headed back.

11.11.11 brought the arrival of a new cousin, Lilly Grace Huff, born to Jodi's brother & sister-in-law.  11th grandchild for Grandma Huff.  We're all enjoying having another baby in the family!

Christmas brought all of Jodi's family, with the exception of Kim (sis-in-law), who needed to be in AZ with her dad.  Praying for the health of her dad, Sid; & wisdom for the doctors treating his Congestive Heart Failure.

We had a wonderful early Christmas with everyone- dinner at our house, gifts & stockings at grandma's & family play at the park.  The cousins always have a great time together!  As do the rest of us.  1/2 the gang headed out on Thursday night to drive to AZ for Christmas.  And Ted flew to CA on Friday to see his family- parents, sister & brothers.  Mom & the girls & I had a nice Christmas Eve & Christmas.

We are so thankful for our many blessings in 2011, and wish you all a Happy 2012!

Remembering Christ & his birth, as He is the Reason to Celebrate.
Luke 2:11

Mitchell is back at the hotel and resting. He had an uneventful cath and successful dilatation of the stent in his left pulmonary artery. We are thankful that everything looked good, given his heart condition.
He is a little sore with 2 cath access sites, but recovering nicely.

Thank you for praying for him.
We appreciated all of your messages today.

After consulting with Cardiology, we have decided to wait on the 3rd surgery, the Fontan. Given his size, his physician believes we can wait a couple years. The plan is to further dilate the stent during his pre-Fontan cath. There is a potential of about 2 more mm.

Will follow-up with our Cardiologist sometime during the next month.

In Cath Holding

We are still in holding waiting. Mitchell is the 2nd case this morning. Anesthesia has come and talked to us, and we are waiting to see the Interventional Cardiologist. Shouldn't be too much longer. Mitchell said, "All done. Time to see the girls." :) but he is staying entertained playing cars and throwing the ball with daddy.
Praying for a smooth procedure without complication.
Thank you for remembering us today.

Heart Cath Friday Morning

Just an update on Mitchell's procedure Friday - it is scheduled for sometime between 9 and 9:30 a.m. EST. Thank you again for your prayers!

Heart Catheterization

As you know, Mitchell has a stent in his Pulmonary Artery. This was placed after his 2nd surgery, October 2009. As he has grown, he is now requiring a larger area for blood flow. He will be having a heart cath on Friday morning to dilate the stent.

He has been stable, but we had noticed increased shortness of breath with activity. His last echocardiogram (earlier this month) was similar to the last, but given the images, symptoms and known size of the current stent; Mitchell's cardiologist consulted with the team in Atlanta. They decided it was time to address it. This cath can also serve for diagnostic purposes for his 3rd heart surgery, the Fontan for up to 6 months. I guess that means sometime before spring... Ready or not!

We appreciate your prayers as we travel to Atlanta tomorrow afternoon, and for Mitchell's cath on Friday morning. I will update once we have a time. Our timeframe for now is 6-10 a.m. EST.

Anticipating an overnight stay, since it is Interventional in nature.

Thank you!

Ted, Jodi, Madison, Mackenzie & Mitchell

2 year old pictures

Not much to report.

Mitchell continues to make progress- more active & very happy.

His vocabulary gets bigger every day.

His new favorite is, "Why, cuz?" about almost everything :).

And he is quite appreciative- everything is followed with a "thank you, welcome"

The most exciting is the "I wuv you, mommy or daddy or mimi or sissy..."

He really is a sweet boy!

He is starting to show more interest in foods. He doesn't consume a lot, but he is licking a lot of things, taking small nibbles of crackers, and taking sips of drinks.

I finally took his 2 year old pictures this week. He looks like such a little man wearing his tie.

Here are some updated pictures:

Also took the kids to Palafox Pier last week:

Isaac Joseph Ausk

My cousin delivered her baby on June 6, 2011.

Thank you to everyone who has been praying for them.

They have had a few bumps in the road so far. Initially, they had hoped to do his surgery today; but will re-evaluate in 2 weeks, and hope to do it then.

Isaac required a procedure via cath the evening of his birth to enlarge an opening in his heart to allow the flow of mixed blood. This improved his blood oxygenation.

He also had a second catheterization procedure to help provide more specifics required for his heart surgery. At some point, likely due to the cath procedure(s), Isaac suffered a stroke. An MRI of his brain confirmed this as well as a small bleed.

If you would like to pray specifically, we are praying for resolution of this bleed; and that he will be strong and ready for surgery in 2 weeks. Also for my cousin, Karlee, as she is recovering from delivery; and as both of them are dealing with stress & sleep deprivation.

We are thankful that my aunt and uncle as well as Brandon's parents have been able to be with them; and that my my aunt has been able to stay to take care of their daughter. Grandparents are such a blessing!

If you would like to follow their journey & pray for Isaac & their family; send me a message, and I'll provide a link to Isaac's Caring Bridge page.

Thank you!

2 Years Old!

We so enjoyed celebrating Mitchell's 2nd Birthday!

It's hard to believe that 2 years has already passed.

We are so thankful for his progress. It is amazing to see the resilience after everything he has been through. We are thankful that God has protected him- seems like so long ago that we were sitting by his side praying for him, unsure of what his future would hold- bleeding on both sides of his brain, a severe hypoxic episode- seeing the fragility of his little body.

We can't help but smile watching as he walks and talks and laughs. God has blessed us so much. There was a time we thought we would never forget those negative situations; they have now become distant memories and just a reminder of God's Blessings.

God has a plan for all of us. It's easy to get caught up in day to day activities, but we desire to be open to God's leading. What does He have for us today? How can we be used?

Mitchell is a daily reminder for us of Jeremiah 29:11- "For I know the plans I have for you..."

We are so thankful that God has allowed Mitchell to be a part of our lives. Thank you for praying for him and for us; and thank you for helping us celebrate the 2nd anniversary of his birth!

He weighed in at 22 lbs 2 oz., and measured at 32 1/4 inches at his 2 year visit. Still below the chart, but back on track with his own curve. At the moment, he doesn't have any appointments scheduled until his Cardiology visit in September! The spitting up is still an issue, but has improved greatly with smaller more frequent feedings during the day and a continuous feeding at night.

He continues with OT, PT and Speech Therapies as well as a weekly visit from his Developmentalist.

Matt Hammitt's song, All of Me, is now available on iTunes. Updates on Bowen can be found at www.bowensheart.com.

Cardiology Update

Good Cardiology appointment. Stented pulmonary artery still has adequate flow, function stable, mild valve leakage. Sat 90% even with his congestion right now. Oh, and he's back on a growth curve- still under the charts but back up on his own curve. Overall, a blessing! Follow up in 4 months.

Currently on an antibiotic for an ear infection. Our wonderful nurse practitioner saw him on Sunday afternoon.

We are so thankful for his progress. After everything he has been through we are just amazed!

We have been following Bowen's blog. He is the son of Matt Hammitt, lead singer for Sanctus Real. Below is a link to their blog and a song he wrote entitled, All of Me. If you'd like, you can listen to the song by taking the link below and clicking the play button below the 2 video news postings.

http://bowensheart.com/2010/11/25/happy-thanksgiving/

Happy Easter

Thankful for Easter- Celebrating the Resurrection of Christ!

You are Invited:

Open House

Sunday, March 13th

It's hard to believe we are already approaching Mitchell's 2nd Birthday!

We want to celebrate with everyone who has supported us.

Open House

Saturday, May 21st 2:00 - 5:00 p.m.

Food & Fellowship

Yard games

Horse & Pony Rides

If you would like details or to RSVP, please contact us at

jodi_holz@yahoo.com or 850-341-4151.

GI Update

Sorry for the delayed post. Not sure where the time goes...
Many have been asking about Mitchell's appointment in Mobile. Thank you for your interest and concern.
We are attempting changes without any invasive procedures right now.
Changed formula, Changed and added medications. He gets less volume per feeding, so more total feedings.
We've had some better days and some days where we try to make up at night. Overall, he is doing a little better.
His last weight was 20 pounds 1 ounce, so we still need to work on that. Although he stays under the growth chart, his weight to length ratio isn't overly concerning. Would be good to gain a couple of pounds.
We have talked to his Pediatrician about doing another barium study via his feeding tube. Although, it's not as conclusive as other studies, we could visualize his stomach filling/emptying, reflux and hernia. We are wondering if the hiatal hernia is larger and affecting the volume that his stomach can handle. We know his digestion is compromised given his decreased oxygen saturation, but we are hoping to see things improve. His last oxygen saturation was 87%.

Mitchell is starting to walk more independently, and his foot seems to be gradually getting better. He is still seeing PT, OT and Speech Therapy weekly as well as a weekly visit from a Developmentalist.

His vocabulary has really grown. He will tell you his name, how old he is, and repeats pretty much everything he hears. We've lost count of all of the words. We are so thankful to see his increased independence! He LOVES his "Sissy" (Madison) and "Ninny" (Mackenzie). They are terrific big sisters. How many 9 year olds know how to work a feeding pump? We are so proud of them. Seems that God may be preparing them for something special.

Hope you all have a wonderful week!

Oh, and today is mom's Midterm. We're proud of her, too! She is taking an Origins class every M,W,F this semester at PCC. She has gotten all A's so far. At the end of this semester, she will receive her degree from Faith Baptist Bible College- finishing the 2nd of 2 classes she missed a few years back.

Happy Valentine's Day!

We previously posted a link to my cousin's blog for those interested in following their journey. They now have a Caring Bridge to keep family & friends updated at https://www.caringbridge.org/visit/babyausk/createorsignin
We are thankful that there are no additional complications identified at this point.

Mitchell is doing well with the exception of his feedings. It has been difficult to keep them down the last couple of weeks. We have tried lesser amounts; lower concentration of calories, etc... A simple guess would be that his hiatal hernia is worse. Most morning feedings come back up entirely and many others. We are thankful that he seems to tolerate them better when he is sleeping, so I have added a midnight and 4 a.m. feeding. At least we can maintain that way for now. We are taking him to a specialist at USA in Mobile on the 22nd. He will likely have a Barium Study that will allow us to see the hernia.

He is a sweet, happy boy! We love all of the new vocabulary & activities. He has started walking- as many as 31 steps at once, but crawling is still the quickest. Takes some coaxing to get him to walk. He has a brace for his left foot. Even before using the brace, we noticed that he was doing better straightening his foot, but he has been turning in at the ankle. Hoping the brace helps strengthen his left leg.

Time to get back to dinner preparation for tonight.
Wishing you all a Happy Valentine's Day!
Will update after his appt. on the 22nd.

Cardiology update

Mitchell's next Cardio appt wasn't scheduled until March, but Jodi scheduled an appointment last week due to some subtle changes in Mitchell's respiratory status. Given his condition as well as the stent in the artery to his left lung, we keep a close eye on him.

To summarize his appointment, his Cardiologist was satisfied with his echocardiogram. His left pulmonary artery is narrow in comparison to the right, but appears to have adequate blood flow. His function has remained stable. His BP was also acceptable. However, his oxygen saturation was lower- 79 to 81%. He does have a mild cold with some nasal congestion- this could have an effect on his oxygen saturation, but wouldn't ordinarily effect it to this degree. She isn't eager to intervene at this point. We will continue to monitor him, with our next appt. scheduled in April. At some point, he may need to return to the cath lab to have the stent dilated. It is currently an hour glass shape, which does allow for dilatation. Otherwise, the pulmonary artery will be patched during the next surgery.

We continue to monitor his weight & are hoping to gain... 19 pounds, 4 oz. on Thursday. His growth curve has leveled off to a flat line the last few months.

His weight and oxygen saturation will be monitored at his Pediatrician's office when he receives his monthly RSV vaccination.

He continues to make progress with his activity and vocabulary. It is exciting to see new things, seems like almost daily.
Most recently is, "I (pointing at himself) attempt at love (crossing his arms), but it is followed by "me"... At least he knows he is loved! He also likes to say "Yes, ma'am which sometimes sounds like "yam", but other times like "yes am".

Thank you for your continued support!
We'll try to do a better job with the updates.

Love,
Ted, Jodi
Madison, Mackenzie & Mitchell

Christmas Pictures

Our Family on Pismo Beach in CA Dec 2010

Huff Family Extended- Dec. 23rd- Florida Christmas

Visiting my sweet Aunt Marilyn (dad's sister) in CA.

We enjoyed a nice holiday!
All of Jodi's family was together in Florida for Christmas. We celebrated Christmas Eve on the 23rd and Christmas morning on the 24th, since we were catching an evening flight to CA on the 24th.
We were able to see Ted's family & celebrate Christmas in CA on the 25th.
On New Years Eve, we visited Jodi's Aunt Marilyn, also in CA.

Prayers for Baby Ausk

I know I promised to post some recent pictures, and we do have a Cardiology update on Mitchell.
Will follow this entry with those.

We have appreciated all of the prayer & support during the last 2 years- Mitchell's diagnosis, birth & his/our journey.
We would like share the story of my cousin's baby and would appreciate prayers for Baby Boy Ausk & their family.

Baby Ausk has been diagnosed with a congenital heart defect- Transposition of the Great Arteries. We are thankful once again for an early diagnosis and the available resources to help correct the problem. If you are interested in following their blog, we have attached a link to Brandon & Karlee's family blog (Click on Title for link). Junior's anticipated arrival is June.

Thank you for your support!
Ted & Jodi

Happy 2011!

Sorry for such a delay since the last report. Thank you for checking on us, Nicole!
Mitchell is doing well. Things looked about the same with his last echocardiogram in December.
His oxygen remains high 80 percentiles, and his weight is creeping up. 19 months and 19 pounds.
I am happy to report that he isn't spitting up as much. It has been a daily occurrence for quite some time, but we have had several days recently without incident.
Mitchell is a happy boy, and we are so thankful for his progress.
Not quite walking, but getting close.
And his vocabulary seems to be getting bigger every day.
We enjoyed Christmas in FL with Jodi's family on the 23rd and morning of the 24th; then headed to CA for Christmas with Ted's family. So nice getting to see everyone, and Mitchell did very well for his first time flying.
Will post some pictures soon. Time to get some rest while the kids are sleeping!
Thank you for your continued support.
Good nIght!