Cardiology Update

Not a lot to report, but we have learned to appreciate that!
After having flu & Synagis shots & getting his feeding tube changed, Mitchell isn't too fond of going to the doctor. His cardiologist decided to wait until his next visit (mid Dec.)to do an echocardiogram. His weight is creeping up- 19 lbs. 3 oz. Although, not on the charts; his weight/length ration is proportionate. He does have Huff genes, so he may just be small.
His oxygen saturation remained mid to high 80s while monitored (for about 10 minutes). This is quite typical during the post Glenn phase. We will probably see an increase following his next surgery. Many people have been asking about his next surgery. We just don't know when it will be. They will continue to monitor his heart; and at some point, he will require additional blood flow to his lungs. Textbook says 18-24 mos. but we have noticed that other children have had the surgery around age 3. Given that he is small, I would think later might be more likely. He does have a stent in his pulmonary artery that may require a trip to the cath lab for dilation at some point. For now, he is doing well; and for this, we are very thankful!
Mitchell has started to walk (while pushing things). He is getting stronger, and doing more and more. He stays very busy, and is repeating a lot of words. He is identifying body parts; some letter sounds- really becoming quite vocal! It is very exciting to see. He LOVES his daddy and goes racing to the kitchen as soon as he hears the door open. He points in the morning and asks for his "Mi Mi". He has gotten into the routine of visiting grandma around the corner. When you ask him questions, he usually responds with a "yeah"; but shakes his head no- if you want him to eat something, or doesn't want to do what you ask. He has quite a bit of spunk, which is good- he's had to fight through a lot during his 17 months.
Thank you for your continued support & interest in Mitchell.
We feel so blessed to have him with us and try to enjoy every minute.
We hope you all enjoy this time of year & can rejoice in God's blessings.

Counting our Blessings

I spent this afternoon reading a blog- a sweet baby boy named Bowen who was born with a heart like Mitchell's. I was reminded of everything we have been through over the last 16 mos., and am truly grateful for God's blessings.
I don't think we ever shared this picture on our blog, but I think it helps to show just how far Mitchell has come.


Mitchell post-op 1st surgery May, 2009


Big Boy! Standing & clapping for himself Oct. 2010

With the exception of a minor ear infection & upper respiratory infection; Mitchell has been doing well. We are so thankful for the progress he has made!
He is very mobile- loves to get into things! His new trick is dumping out Zoe's food and water... he thinks he's quite funny. He loves to swipe things from his sister and get her to chase after him- it's followed by lots of giggling. He is standing by himself for quite a while now, but hasn't taken any steps yet. His left foot still pronates a bit, so he may require a brace once he is walking. We are just thrilled with what he can do!

He is still scheduled for therapy once a week, and we are working on eating. He's just not a fan. Happy to lick things, just doesn't want to eat them.
Hoping he will be more interested one of these days.

His next Cardiology appointment with an echocardiogram is scheduled for November 1st.

Thank you for your continued prayers & support!

Ted, Jodi, Madison, Mackenzie & Mitchell

15 months old

Sea World

After getting misted with the cooling fan

Guess it's been a while since we've given an update.
Mitchell is 15 months old today!
He weighed 18 lbs. 2 oz. at his visit this week- He is on his own steady growth curve. Can't remember his length at the moment, but it was a steady curve as well.
We have been working on transitioning his feeding. He has been having more spitting up & fussiness, but it didn't start until about a week after we started the change. It may be related to 5 new teeth (in 1 week) & a little virus. It continued even after going back to the previous formula, so we're hoping to see improvement once the teething and drainage improves.
He is not walking yet, but his mobility has increased- he crawls all over; walks on all 4s and gets into whatever he wants. He is pulling up to stand and taking a few steps holding on, but not ready to let go and stand alone.
His vocabulary has expanded- he is giving names to more people and repeating more things that he hears.
He still loves playing with balls, but enjoys everything else, too. He loves to crawl to his sisters' room and explore. He even likes to play with their baby dolls. They get lots of hugs from him, then he gives them to us to hug, too. He enjoys bubbles- he will find them and bring them to us. Then he'll say, "bubble, bubble"; followed by "more" and "pop" when he pops the bubbles.
Anytime we enter a Publix or Party City (for recent birthdays), he requests a "boon". Balloons are so much fun! We are enjoying the excitement and all of the babbling.
We recently took a trip to Sea World, and he was taken with the animals in the shows- very attentive. We are so thankful for his progress.
He is still attending Physical & Occupational Therapy for 30 minutes once a week; and having an hour of Speech Therapy each week. He is making some progress with eating, but still receiving his primary nutrition through the feeding tube.
No appointments til November! The 3rd will be an echo & cardiology appointment; then his 18 mo. check up will be at the end of the month. So nice & such a blessing to have more of a normal schedule.
Thank you again for following Mitchell's progress & for praying for him.
Hope you all have a wonderful weekend!

Happy 4th

Look who's standing

New trick when he wakes up

Excuse the toy mess, but Mitchell is standing!

We are pleased with Mitchell's progress.
He weighed 17 lbs. 2 oz. last week.
He is crawling more and more every day, and we are working on taking steps (with help).

Because Mitchell's new Speech Therapist wanted to rule out issues related to feeding, he had a Barium Swallow study yesterday. The good news is that everything appeared to be normal... with the exception of a hiatal hernia. This really didn't come as a surprise, but it is unfortunate. No plans to surgically correct this one- I think we learned from the last experience. He is growing and tolerating his feeding better, so we will just continue to work on eating. He has had some progress with liquids given with a dropper or a straw, but he's still not very interested in foods. We're gradually trying to thicken things to help him progress.

Mitchell continues with OT twice a week, PT once a week & an hour of ST each week.
He will see cardiology again in about 4 weeks.

Happy Father's Day

It's late, so this is going to be quick. Wanted to wish everyone a Happy Father's Day!
This past week at our house has been a fun week celebrating how much we love Daddy! The girls have enjoyed baking goodies & making crafts.
Attached are a couple of pictures of Ted & the kids.
We are thankful for our godly heritage!
Our kids are a gift from God- Let's help prepare them for whatever God has for them.
We are their examples!

Happy Birthday, Mitchell!

Standing up like a big boy- trying to get the ball

Grandma & Mitchell on his birthday

Day of his party, May 22nd

He didn't like the icing on his hands- "get it off, please."

Thank you, Amanda for the wonderful birthday cakes!

kids in Mitchell's new ball pit

Mitchell had his 1st birthday on May 20th- it's hard to believe it has been a year. We have so much to be thankful for- starting with the fact that he is here with us today!
Many of you have been following the blog from the beginning, but a quick summary of his year would be:
May- July: hospitalization at Children's in Atlanta- his first heart surgery & a general surgery for a fundoplication & feeding tube
August- back for 1 day in the cath lab in preparation for his next surgery
October/November- back to Children's for his 2nd heart surgery- hard to believe I can't remember for sure, but his stay was b/t 2-3 weeks- surgery-back to the cath lab for some additional modification- and a few complications...
December- back to children's for a revision of his fundoplication d/t a hiatal hernia
January- a quick trip to Atlanta just for f/u at the surgeon's office

His time at home, he is followed by amazing doctors- he has a wonderful Pediatrician & Nurse Practitioner & an outstanding cardiologist. We have been blessed with their close attention to his needs.

We are happy to say that he is doing well. At the moment, his primary concern is significant reflux- he spits up quite a bit. We are hoping to see this calm down again. It had improved, but was exacerbated again by a virus last month. At this time, we don't know exactly when he will need to return for more surgery. At some point, he may need to go to the cath lab to dilate the stent in his pulmonary artery. It is possible that it may be adequate until his next surgery. They will continue to monitor for any changes. We will take a trip to Atlanta sometime later this summer to replace his feeding tube, but that should be a simple thing. His next heart surgery could be anywhere from 18 mo. to 36 mo. of age, depending on his status.

We are enjoying all of the smiles & laughing. Despite everything he has been through, he is full of life! He loves his family & gets very excited to see daddy come home or grandma come over; his sisters get lots of smiles & laughs out of him. He enjoys the kitty & puppy, too. Right after my last post, he added "kitty" to his vocabulary; and after his party, he is saying "boon" for balloon.

His favorite thing is balls, so we got him a ball pit for this birthday- he has lots & lots of balls to play with. We attached a few pictures from our celebration.

1 year stats: 16 lbs. 9.6 oz; 27 1/2"

Thank you for all of the birthday wishes- He had mail every day the week of his birthday.

Cardiology Report & General Update

Mitchell had a follow up appointment & echocardiogram today.
He wasn't thrilled to have his echo today, so it was fairly limited; but Dr. Mehta felt that it looked about the same as last time. This is great considering he has been off of his Lasix (diuretic) for about 6 weeks. His sats were good- 89-90%.

Since his virus (shortly after Easter), he has had a lot more spitting up. We have been trying to accomodate for lost feedings, but he didn't really gain (I believe it was only 2 oz. since the last visit). He did grow 2 cm in length, though- now on the 2nd percentile for length!
We are able to stop his Aspirin now, so we're hoping that will help his stomach.

Mitchell continues with Physical Therapy once a week & Occupational Therapy twice a week. He will be getting re-assigned to a new Speech Therapist, since his previous therapist relocated. He is making progress! He is sitting up unassisted- last session he sat the whole time without being helped. He LOVES to play with balls- definitely his activity of choice. So, we have lots of balls- different sizes/weight; and working on strengthening his arms and legs. I don't know how much I have mentioned previously, but he does have weakness on his left side. We noticed leaning, etc.. after his hypoxic episode in the fall. We are very thankful with his progress, considering the concerns we had. He is using his left hand more and more- he used to primarily use his right hand and pass off everything to his right when we'd give him things on his left; but he is starting to pass back to the left & tolerate picking up more weight/larger items with his left hand.

His current vocabulary is "ba" for ball (quite frequently), mama, dada, "hey-yah".
He will wave bye, give '5' & play peek-a-boo.
We really enjoy these milestones!

It's hard to believe that Mitchell will be '1' in 3 short days. No big plans- probably just a nice family gathering on Saturday. One of Juliane's friends from work wants to make Mitchell a birthday cake, so we'll be surprised with some sort of 'ball' cake.

Thanks for all of the birthday wishes & cards!
Mr. & Mrs Brock, Mitchell loves his singing card! He plays it over and over again.

Hope you all have a Wonderful Week!

Still trying to recover

Ted left for a convention in Orlando on Sunday. Unfortunately, he caught the kids' virus before he left.
Monday was a follow-up for my arm; my doctor was concerned about a blood clot, so I had a doppler. Thankfully, it was negative. Never would have guessed inflammation/infection from a blood draw could be so painful. I'm happy to be on my last day of the antibiotic as my stomach is feeling the effects of it. My arm is still hurting, but it has definitely improved.
Tuesday was a visit to the pediatrician. Thought Mitchell should be checked, since it had been 10 days of the virus and he was starting to seem more fussy. Glad we went- caught the beginning of an ear infection. I was pleased with his weight especially since he has been spitting up quite a bit from the congestion. He was 16 lbs. 2 oz. The girls were 17 and 18 lbs at a year. Hoping we can match the 17 by his birthday next month.
We were happy to have Ted home from his trip last night- just wish he was feeling better! Hoping it doesn't last as long for him. He is due back in Orlando on Monday.
I don't know if it's the infection/antibiotic/lack of sleep or if I'm getting the virus, too; but I'm not feeling well. Thanks to mom for coming over with dinner last night & for helping with the kids.
And thank you to everyone who has been praying for us!

Fighting off germs

We don't have a lot to report, but figured we were due for an update:
I didn't take Mitchell for his weigh-in or therapy this week due to a virus. Mackenzie started first, then Mitchell- nothing too bad- runny noses, cough, & a short-lived fever. Madison has fared the best with a hoarse voice & minimal coughing. It doesn't seem to slow Mackenzie down too much; Mitchell, however, doesn't do to well with the congestion. It is contributing to more spitting up, not sleeping well & just general fussiness. Hoping we're getting to the end of it.
Now I (Jodi) am praying that an infection I have quickly resolves. After a routine blood draw, I now have a nice red, tender & bruised line down my right arm. I started on an antibiotic last night & saw the doctor today. He said he'd give me a couple of days to see if it helps, but if it gets worse over the weekend or is not better by Monday, I was instructed that I will need to go to the hospital for further tests and IV antibiotics. This would be less than ideal given my responsibilities, so I'm hopeful that the antibiotic is just the right thing. I was also instruced to take aspirin just in case there is a clot contributing to the problem.
Mitchell's next cardiology appointment is Tuesday, April 26th. Once we're passed the virus, we'll drop in for his weight check.
It's hard to believe that we are approaching 11 months next week!
Thank you all for following Mitchell's progress & for praying for our family.

Happy Easter!

Encouraging visit

10 months old

After Madison's 3rd grade program

Yesterday was a full day with therapy and a cardiology appointment including an echo.
We were very thankful with the report-
Mitchell was 15 lbs. 8.6 oz.- He continues to have a steady gain & growth curve- still below the 5th percentile curve, but great for him.
We have been eagerly anticipating his echo. Things looked good considering his diagnosis. His ejection fraction was 57%. His oxygen saturation was 88%.
He is finally much more comfortable overall- he seems to have loosened up the wrapping of his esophagus and the retching is very minimal. We're getting lots of smiles & babbling.
He is making some progress with feeding attempts. Although, he isn't consuming enough to count nutritionally; he is moving in the right direction. Until recently, he would gag with any feeding attempt. He is now swallowing small amounts of food. We are working to increase the exposure & amount of intake.
Close friends of our family, Budd & Donna stopped in for a visit last week. Mitchell was sweet and let Donna hold him for quite some time. It was so nice to see them & introduce them to our little man. Thanks for taking the time to come!

Hope you all have a wonderful day!

General Update

Thank you to everyone checking in on Mitchell- sorry for the delayed update.

Mitchell's next Cardiology appointment including an echo is March 23rd.
His last echo showed some change; we are eager to get this report.
Although not "on the charts", his weight & length are back on an adequate curve. We are happy to see progress. There is some variance between the Cardiology and Pediatrician scales, but his weight is just shy of 15 lbs.
We go back to the Pediatrician next week for his monthly Synagis & another weight/sat check.
Mitchell continues therapy on a weekly basis- I would say the most progress is with his social skills. He is interacting with them much more; he even let his physical therapist hold him yesterday! He seems to be doing well overall- he is behind with his gross motor skills (not at all surprising after all of his time spent in the hospital). He can sit up briefly by himself; for a fair amount of time with minimal support. He has rolled over by himself once- not very interested; he does roll from side to side as he wishes. We have noticed more communication recently- "ba-ba-ba" for a few weeks; and "mama" just this week. He will also give "5", wave & play peek-a-boo.
Things are finally starting to seem a little more "normal". We are so thankful for Mitchell & continue to pray that we are receptive to what God has for us through it all.
Thank you for your love & support!

Weekly appointment

Due to our "winter conditions" in FL on Friday, Mitchell's visit for his weight and RSV vaccination was postponed until yesterday. So, we had a busy day- started with Cardiology, then Speech & Physical therapies; and finished with a visit to Heidy, his NP.
Cardiology was just a nurse visit this week primarily for a check of his BP. His next echocardiogram will be next Tuesday- the last one was OK. His ejection fraction (heart function) was a little lower last time, so I am anxious to see how things look next week.
He is progressing with therapy in that he will participate some. He did get scared a few times, but seemed to soothe fairly quickly and go back to it. You may have noticed in the picture from last week that he is sitting up- only for a short time, but this is progress. He is behind for his age, but is progressing- We are happy to see him doing more. His sisters help with the interaction & "therapy". His therapy appointments will routinely be on Tuesdays for now.
His weight was 14 lbs. 8 oz.- a gain of about half an ounce/day since his last weight. His sats stayed around mid 80s.
Next Wednesday will be his 9 mo. visit. It's hard to believe that we are approaching his 1st birthday in just 3 months!
Thank you for your continued encouragement.

Mitchell's 1st Valentine's

Sitting up like a big boy

Weekly appointment

Mitchell's weight was less today than last week. Wondering if last week's was accurate... Regardless, his weight is 6 oz. more than 2 weeks ago, so at least that is progress. Echo was OK. Cardiologist decreased one of his meds; next appointment with her is in 4 weeks- just weight/BP/O2 sat checks weekly in between.
Next week we'll see the Physical & Speech Therapists and go to Pediatrician for his monthly Synagis (RSV) vaccination. Mackenzie loves her brother so much, she had to share her germs with him. He started with a little cough on Sunday. It has progressed some and his sats are a little lower than his normal, but we are thankful it hasn't gotten too bad.
Thank you to everyone praying for his health.

Thankful for Gain

Mitchell was 14 lbs. 4.6 oz. on Thursday- an increase of 9.6 oz. in one week.
His new Physical & Speech Therapists will be seeing him on a weekly basis. Still not interested in eating, but hoping to see progress with time. He is not too fond of anyone else touching, but their ideas for intervention are greatly appreciated. I am looking forward to working with them.

Thanks to grandma, Ted & I were able to spend some time together today. We enjoyed a little shopping & dinner- 5 hours just the 2 of us! It was wonderful to have some time alone. Mitchell did great- didn't cry & took a couple of naps for her.

Hoping for nice weather tomorrow, so we can all go to church together.

We are planning Mitchell's dedication for next Sunday, Feb. 7th.
Thank you to Tim Parton for making a sound track for "I Know the Plans I Have for You" for Scott to sing.

Last Thursday I took Mitchell for his weight check- only gained an ounce, but his length improved on the growth curve. It is possible that there could be a variance- this weight was at the Cardiology office; the previous was at the pediatrician. We had hoped for more, but at least it is a gain.
We increased each feeding just slightly, adding an ounce more per day. The retching continues to be a problem, but the added volume doesn't seem to have made it any worse. Getting over the virus has actually helped that some as well. Hoping to see more gain this week.
Mitchell will be re-evaluated by a new Physical Therapist on Thursday; then he will see his Speech Therapist. Still no interest in food- actually quite opposed to it, but we'll keep trying it.
I'll try to get this week's update posted sooner.
Thank you for your continued support!

Weight gain

Just a quick note-
Happy to report that Mitchell had gained 3.5 oz. in the last week.
Glad to be headed in the right direction!

Update

Last Monday started with a visit to the Pediatrician's office for a viral rash- thankfully, it has been fairly uneventful. Quite spotty for a few days, but the daily Antihistamine has helped. Still has a few spots this morning but definitely an improvement.
His weight Monday was the same as the previous Wednesday- at least no loss, but hoping for gain this week.
Wednesday was a trip to Atlanta- Mitchell rode pretty well for 10 hours in the car. His surgeon said we are doing everything we can related to his feedings/reflux. He is going to give him some time- hoping to get back to his growth curve. If he can't tolerate enough volume, then we will need to consider a different type of feeding tube.
Since it has been a month since his surgery, I am working on transitioning from continuous feeding to a bolus feeding again. He has 2 hrs on and 1 hr off at the moment. He seems to be tolerating 1- close to 2 more ounces a day this way.
Still having difficulty with the retching, sometimes it is when his feeding is off. He just seems to be quite sensitive.
We are heading to the Pediatrician at 1 today for his RSV vaccination. Hoping to see a little weight gain!
It has been quite cold for FL recently, so Mitchell has been staying in- needing to get over his little virus; and trying to avoid the RSV which is making its rounds.
He has an occasional cough, but it seems to be connected to when he is trying to reflux. Mackenzie had a cold when he started with the rash; they said it was a different manifestation of the same virus. Hoping he doesn't have any viral respiratory symptoms.
He has made progress socially- All of the sudden on Friday, he was happier to just sit in his chair; and he let grandma get him out of his bed and hold him for about an hour! Ted & I took advantage of this & went out to dinner Saturday night. It was very nice to have some time just the 2 of us. Thanks, mom! Little man decided to sleep the entire time we were gone.
Mitchell will see a Speech Therapist on Wednesday morning. We are hoping to work on his aversion to taking anything by mouth.
For now, his weekly appointments are just for a weight/BP/O2 sat check.
His next echocardiogram will be in February.
Hope you all have a nice week!

Prayer Request

I have not been the best at keeping things up to date recently.
Things have been a bit hard since Mitchell's last surgery. We were optimistic that he would make progress after the hernia repair; but sadly, he is even more uncomfortable.
He had a revision of his fundoplication (part of the stomach wrapped around the esophagus to prevent reflux) because of his hernia. Because his previous fundoplication had become "floppy"; the surgeon moved down & made a new wrap. This actually made the volume of his stomach smaller.
He has several significant episodes of retching every day- trying to spit-up, but since he can't it causes a lot of pressure & pain for him. We both end up crying. I just wish there was something we could do for him. He is not getting the volume of formula that he needs, and is still having problems. I am concerned that he will get a hernia again (if he hasn't already). Prior to the surgery, he was doing much better with the upper GI issues- spitting up only occasionally. Were it not for the hernia, he would not have needed the surgery.
He has not been able to sleep more than about 30 minutes at a time; even at night, he is waking up frequently- probably a dozen times a night.
Are primary concern is for Mitchell- that he will be comfortable & can tolerate the feedings that he requires; but we are also getting quite tired. Mitchell only allows mommy and daddy to hold him; he screams if anyone else attempts to pick him up. He does better with movement, so we walk around the house with him a lot of the time. He's quite the Daddy's boy- I think Ted likes that, but once he is in sight Mitchell expects him to get him; and he knows how to get his attention. I feel very blessed to have a husband who is such a good daddy! We celebrated our 10th anniversary on New Years Eve with Chili's take out and watching G-force with the kids.
We are so thankful that Mitchell is here with us today after everything he has been through; but we are praying to see progress.
Thank you for your support & encouragement!