Mr. Kazoo

Happy Thanksgiving!

Happy Thanksgiving from Jim Beau!  He slept through most of his first Thanksgiving.  He is on antibiotics for another ear infection and I think he was feeling so much better that he just wanted to nap.   It is strange to think that last Thanksgiving we celebrated in our furnished apartment in Gainesville and we were waiting for Jim Beau to be born on the 30th.  Please keep baby Hollis and his parents Ryan and Kelly (from Montgomery, AL) in your prayers.  Hollis is a CDH baby set to be born at UAB on Monday Nov. 29th.    You can follow them on their Facebook page Hope for Hollis.

I still feel like a hero when I get Jim Beau to eat something new.  Last night he ate an egg!   I think the ear infections have made him feel yucky and hopefully we can get those under control and he will start eating more.  He still loves his formula, so that is good!   He weighed 16 lbs. 7 oz at the doctor the other day.  Still very tiny but following his own growth curve I guess!

Oh, and Jim Beau would also like to say War Eagle!

Eating

Jim Beau likes to feed himself now.  Doesn't like us feeding him with a spoon at all!

Never before seen video!

We got our Flip video camera back out a couple of weeks ago and found some videos from the day and the day after Jim Beau was born.  Although they are not very exciting, I wish we had more videos and pictures of his early days.

Click on this link to see them.
YouTube Videos

Jim Beau's Poster

Here is Jim Beau's poster for the CDH Awareness campaign Save the Cherubs.  Thank you to CHERUBS for giving us the opportunity to try to raise awareness.   It is hard to believe that a year ago we had never heard of Congenital Diaphragmatic Hernia.

Samantha Alday did a great job getting pictures of Jim Beau in his angel wings!   She also photographed our wedding so it was great to see her again.

If you are a shop owner and/or have a place to display the poster let me know!

New Tricks

Took Jim Beau to the doctor the other day because I suspected that he had another ear infection.  And, he did!   So he is back on antibiotics.  We did get a referral to see an ENT but the next appointment they had was January!   I am going to try to get us in somewhere else sooner.

In addition to the ear infection, Jim Beau has two bottom teeth that are almost in and FOUR teeth on the top that are trying to come in.  He is trying to find anything and everything to chew on!    Here are some pictures of his latest tricks.

Standing up

pulling up

climbing

bugging Alex

being cute

Check up at Shands

We had a check up at Shands on August 24.  (yes, I have been bad about updating!).    Jim Beau weighed 14 lbs 15 oz and I think he weighs about 16 lbs now.   His head was still in the 90th percentile while his weight was just barely on the charts!   Dr. Kays asked what I had been feeding him and when I told him he said, "that boy needs some steak!"   So, when we got home I steamed some top sirloin and pureed it.  It looks like cat food, but I think Jim Beau likes it ok.    I also made him a pasta puree and am trying to feed him things that are higher calorie.   He still gags if something is not pureed enough and he still does not have any teeth.

Their only concern with Jim Beau is his weight.  Even on the reflux meds he can't seem to take more than 4 oz of milk at a time.    It really hit me when I saw my 5 month old niece down an 8 oz bottle.  Jim Beau is 9 months old and can't drink that much!   He still wakes up in the middle of the night (sometimes twice) to take a bottle and I can't complain about that.  At least he is eating!  

Otherwise, Dr. Kays said Jim Beau is "delightful."   Duh!  :)  

As we were leaving we went down and got a chest xray.  This is the first time they have had to put Jim Beau in the little contraption that keeps them still.  He was so pitiful.  It is kind of hard to explain but they sit them down and put their arms up and then enclose them in these plastic doors so they can't move.    He didn't like it at all!

Here he is being delightful.

helping Dr. Dickey (look at how he handles those instruments!  I just know he will be a surgeon himself someday!)

telling Dr. Dickey all about it

Thanks for the picture, Dr. Dickey!

In other news, Jim Beau starts physical therapy next week.  They approved us to have once a week physical therapy in the home, which is great!   He has to ride around in the car enough as it is.   He needs a little help with trunk support so that he can sit up on his own.   Since the time that they approved the PT, he has started crawling, which is good.   I don't know that it is a real crawl, but more like an inch worm movement.  Either way, he can get to where he wants to go, which is usually some sort of cord or piece of paper!   At the beach last week I think he taught his cousins a thing or two about crawling!

Since the ear infection that he had back in July, he has had two more.  I'm not sure that they ever really went away.   This last time they tried him on a different antibiotic that I think worked better.   I can't believe he is already nine months old!!!  Pretty soon we will be celebrating his first birthday!

Heart of the Matter

Can you imagine ever being thankful that your child had a heart defect?     Well, I sure am!!

Lately,  I have really been thinking about how fortunate we were that Jim Beau's CDH was diagnosed before he was born.   If he did not have the heart defect then we never would have had the level 2 ultrasound, which showed us the CDH.   It is also very interesting that the heart issue was not discovered until I was 34 weeks pregnant.  The heart beat had sounded normal every other time.   You could say that it is a mystery, but I think it was all God's plan.  My OB said he thought Jim Beau was trying to tell us to take a better look at him and I agree.

We had a cardiology appointment last week and the doctor was very impressed with how Jim Beau is doing.  He wasn't worried about his weight and did not think they needed to do an EKG or an echo.  We don't have to go back for four months!   woo hoo!

In other Jim Beau news, he is really eating well.  He gags every once in a while if the food is too thick, but he has liked everything I have given him.   He isn't sitting up or crawling yet, but we will hopefully start physical therapy in the near future to help him with that.   He had his heart surgery at 3 months old and we weren't allowed to do tummy time or lift him under his arms for 6 weeks, so he is just a little behind.   He can get where he wants to go by rolling and doing the GI Joe scoot.

He had his first sickness recently while we were in Alabama -- pink eye and an ear infection -- but he is doing great now.

We go back to see Dr. Kays on August 17 so hopefully he will be pleased with Jim Beau's progress!

Smart?

I think I finally thought of something smart!   Jim Beau is doing pretty well with solid foods.  He really likes the brown rice cereal.  I can't get him to enjoy bananas yet, though.  Maybe I ate too many when I was pregnant!  

Anyway, the only issue we have is that Jim Beau gets preoccupied with the spoon while I am feeding him.  He grabs onto it and sometimes I let him have it and go get another one.  But, then he wants that one too.  So, tonight I put my arm sort of across his stomach and he was playing with my watch while I fed him, which made me think of those toys they make that velcro to babies' ankles.   I went and got one and attached it to my watch and he LOVED it!  He played with that thing the whole time I was shoving food in his mouth!

I can really tell that since he has started solid food that he has gotten bigger.  Go Jim Beau!   We go back to see Dr. Kays on August 22 so I hope he is happy with how Jim Beau is growing.

Powerful Prayer

Billy Graham's daughter, Ruth, has been praying for Jim Beau and visited Capitol Hill last week!   Check out her blog post.

Ruth Graham Visiting Capitol Hill

Eating

I'm thinking that it is really time for Jim Beau to start enjoying his first foods.   He still really loves his milk and I'm not sure I'm ready to cut back on that until I think he has the eating thing down a little better.  We had a cardiology check up today and he is gaining weight, just not enough.   Tonight I gave him cereal and sweet potatoes.  It is so funny.  He doesn't open his mouth, but instead I put the spoon up to his lips and he sips it off of the spoon. Very messy!  

He has reverted back to waking up every three hours at night to take a bottle.   He nearly takes four ounces at a time at night, which  is really good for him.  During the day, however, I think he is distracted by the things around him and he won't take that much and so it seems like he is eating all day long!     I would LOVE to get him on a better schedule, but right now I'm just going to feed him when he's hungry.  Eat Jim Beau!!

Well Baby Check Up

We had Jim Beau's 4 month Well Baby check up today.  He is really 5 1/2 months old, but he could not get any immunizations until 8 weeks after his heart surgery, so we are a little behind.    He is 25 inches long and weighs 12 lbs.   It makes me laugh because Jim Beau's cousin Alexa who is about 6 weeks old, already weighs 12 lbs!

I asked the doctor to figure out what percentile Jim Beau is in because Paul is always wanting to know that.  Turns out he has been in the 0 percentile for weight the past three times he has been weighed!!   Let's hope he really catches on to the cereal thing so that he can gain some weight.   Doc put him on a bigger dose of Zantac to help with reflux, so maybe it will start feeling better to him to eat more.   He is in the 44% for head circumference (shocker!) and 14% for length.

Jim Beau wasn't too excited about the rice cereal so I went ahead and tried the oatmeal and I think he likes it!  I'm also already trying pears and apples.   Yesterday and today he actually opened his mouth for me to put the spoon in, so that is good!    Here is a picture from a few days ago!

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

Where, Why and How to Donate

Several of you have asked and I wanted to you know where we have decided to donate our money with regard to Congenital Diaphragmatic Hernia research and education.    Since Jim Beau was born at Shands and they have such a significant leading survival rate, we feel it is important to donate to them.  Clearly they are doing something right!
They have their own active philanthropic program to support CDH research and education at UF.  Dr. Kays says they feel it is incumbent upon them to refine their techniques, publish their data, and to teach locally, regionally,  and nationally.  Their philanthropic initiatives are all focused on these goals.

Donations to the program go to a special fund within the College of Medicine that Dr. Kays controls completely.  They are used entirely for CDH research, education, and program development initiatives that Dr. Kays directs.  Their vision of what this program can do and be is big, and there are many unborn children who could benefit from what they can do and teach.   Obviously, they can use anything from $10.00  to $1 million and up!  :)

If you are interested in making a donation in honor of Jim Beau or another CDH baby, here is the information you need:

You can donate online here.  Sometimes the website takes a while to load, but I donated online and it worked fine.


All donations are tax deductible (tax id  59-0974739) and checks can be made out to:

Congenital Diaphragmatic Hernia Fund
Send to:
David W. Kays, MD
Congenital Diaphragmatic Hernia Fund
c/o Pediatric Surgery
University of Florida Box 10119
Gainesville, FL  32610-0119  

Save the Cherubs

Check out the new "Save the Cherubs" campaign that was recently started by CHERUBS.   Here is the link to the Save the Cherubs blog where you can see some of the ads that have been created.  They look pretty cool.

www.savethecherubs.org

Jim Beau in the News

Birth Defect Resolution Passes

After his infant grandson's life was threatened by the disorder, Sen. Jeff Sessions, R-Mobile, co-sponsored a newly passed resolution designating March 31, 2010, as National Congenital Diaphragmatic Hernia Awareness Day. 

While the cause is unknown, the birth defect occurs when an infant's diaphragm fails to fully develop, leaving an opening "that allows abdominal organs into the baby's chest cavity and prevents lung growth," according to a news release from Sessions' office. 

It occurs once in every 3,000 births in the United States and is fatal in half of all cases, the release says. 

Born in November, Sessions' grandson, James Beauregard (Jim Beau) Reinhardt needed surgery at a Florida hospital when 4 days old, Sessions said. He spent 43 days in intensive care before being released to go home. 

Originally introduced in June by Sen. David Vitter, R-La., the resolution unanimously passed the Senate on Wednesday and recognizes the need for additional research into a cure for the disorder.

How we got diagnosed

At my 20 week ultrasound I was told that we were having a boy and that I had a two vessel umbilical cord (instead of three).   Everything else was supposedly  ok.   My doctor said that the two vessel cord was no big deal.  It could cause growth issues as well as kidney issues.  So, I would have to come back for another ultrasound at 30 weeks and when the baby was born they would need to check his kidneys.  He said he had never seen anyone have a problem from a two vessel cord.  I went back at 30 weeks and that ultrasound was also supposedly fine -- the kidneys looked fine and the baby's growth was ok.

Since then I have realized that different doctors do different things when there is a two vessel cord.  We moved to a new state when I was 33 weeks pregnant and I had my first appointment with my new OB at 34 weeks.  He said that if I had been his patient from the beginning, and I had a two vessel cord and was over 35 he would have sent me for a fetal echo at around 28 weeks.  

Nevertheless, I do not know why both of Jim Beau's birth defects were not discovered at my 20 and 30 week ultrasounds.  I can only say how grateful I am that they were discovered before he was born.   At my 34 week appointment Dr. Mixson listened to the heartbeat and it sounded a little strange.  He got me an appointment the next day at a UF diagnostic center in Jacksonville. 

This is all such a miracle to me.  The heartbeat had never sounded strange before.  And even a week later the heartbeat would sound normal for a while and then change.  I think little Jim Beau was trying to tell us that day that something was seriously wrong and we needed to look at him a little closer. 

In Jacksonville the ultrasound tech found the diaphragmatic hernia.  I remember her trying to explain to me what it was and how she seemed to feel very sorry for me.  She called the doctor there at the center but he told her I just needed to go to Gainesville.  I came back home and went back to see Dr. Mixson.  His entire office knew what had happened.  They all hugged me and told me they were sorry.  Dr. Mixson had printed out some medical information about CDH for me and told me they were working on getting me an appointment in Gainesville.  

The next day I was starting my grocery shopping when they called.  I had an appointment that afternoon at 2 in Gainesville.  I would see Dr. Douglas Richards who helps diagnose the severity of CDH through ultrasound and then I would meet with Dr. Kays, the surgeon.

Thank goodness my mother in law was here visiting.  My husband was in the middle of the Indian Ocean (he's a submarine officer) and we had just moved to a new town.  I knew a few people, but not well enough to ask them to keep my 2 1/2 year old while I drove down to Florida.     It turned out to be a very long day.

Dr. Richards was very quiet while he did the ultrasound.  He mentioned a few things that he saw and spent alot of time looking at the heart.   After he was finished he drew me a diagram of what he saw.  He said that it appeared to be a small defect with only the intestines up in the chest.  He said the stomach was where it should be, as well as the liver.   Then he told me that the reason he was looking so closely at the heart was because there was a VSD (ventricular septal defect) or hole in the heart.   He said that they sometimes close up on their own, but that this one would probably require surgery.    He handed me the diagram that he drew and sent me over to the hospital to meet Dr. Kays.

I only had a few minutes with Dr. Kays that day.  He had worked me in since I was so far along in my pregnancy.  He looked at the diagram that Dr. Richards drew and said my baby had an 85% chance of survival.  What I remember most about that meeting was that when I walked into his office, he gave me a hug!  I'm not a very huggy person, but that was just what I needed that day.    It is hard to believe that I did not see Dr. Kays again until the day Jim Beau was born, yet I had the utmost confidence in him.  He's just that type of person.

I remember that Dr. Richards asked me if I had already moved to Gainesville.  I had to laugh!  I had just found out about this problem.  They wanted me in Gainesville two weeks before my due date in case I went into labor.  So, at our next appointment we looked around at apartments.  We ended up renting one that was within walking distance to the hospital.  It was expensive, but because we are military, we got reimbursed for our expenses.  We also stayed there when we went back for Jim Beau's heart surgery.  They told us that they are going to start offering a discount to Shands patients for their furnished apartments.  Check them out at:  Wildflower Apartments

Jim Beau's Story

Here is Jim Beau's story from the beginning!   I did a little bit of journaling on a Caring Bridge site, so these are those entries.   I like having them in one post because it is easier to read going from first to last.  I didn't start until 9 days after he was born so he had already had his repair.

WEDNESDAY, DECEMBER 9, 2009 4:27 PM, EST

Jim Beau is 9 days old today, but today is the first day of our journal entries!  Thank you for visiting our website.  We will try to keep it updated as much as possible.

I am in Gainesville by myself now.  Paul has gone back to work for the week and May May took Jane Ritchie home on Sunday so that she could get back into her routine of going to Mothers Day Out, etc.   She has actually been very good during all of this change!   Thank goodness for May May!!!   I'm thinking I should have at least kept the dog here with me.  I might need to get a goldfish or something.  :)

This morning Jim Beau kept his eyes open for a very long time.  Maybe almost an hour.  They are slowly weaning him off of his anti-anxiety meds, which is allowing him time to wake up and open his eyes.    He has had women hovering over him all day because he has two nurses (one in training), a nurse practitioner and a nurse practitioner in training looking after him.

They actually bugged him alot today.  They removed a few stitches from around his belly button that had been there since Monday when they tried to put a line in.  One stitch was tough to get out.  He did not like it at all!   Then they had to change the dressing on his pic line which covers most of his left forearm.   They let me change his diaper today, which was very exciting!

They are continuing to wean him off of the ventilator little by little.  I spoke with the doctor tonight and he said they hope to have him off of it by Friday.

The apartment we found is working out well. It is faster to walk from there to the hospital than it is to drive.

Thank you for checking out Jim Beau's website. We know we have many friends praying for us every day.  It means the world to us!  

THURSDAY, DECEMBER 10, 2009 6:52 PM, EST

Thanks so much for all your messages!!!!  I think that is the best part of setting up this website.  We really appreciate everyone!

Today was a pretty good day for Jim Beau.  He was alot more active because they discontinued one of his anti-anxiety meds.  I have been waiting on him to open his eyes again, but so far today he has not.  He has started gagging on his tube, which the nurses say is a good sign.  Not such a good sign for Momma to have to watch!!  :)  But, I think this means that he is becoming more aware.  He gets agitated at times, which is difficult to watch.  I do a good job of calming him down, if I do say so myself!  :)  He likes "hush little baby don't say a word..."  He probably remembers me singing it over and over to Jane Ritchie the last nine months!

The doctor still says they will remove the ventilator tomorrow.  I think then he will be on CPAP.  Not sure if we'll be able to hold him or not.

Someone from the cardio-thoracic surgery department came by today and said that Jim Beau is doing really well and they won't need to see him or do any procedures during this hospitalization for the Tetralogy.    He will just have to be monitored over the next 4 or 5 months.

Thanks again for all your messages.  Will try to update tomorrow about the ventilator situation!

THURSDAY, DECEMBER 10, 2009 8:54 PM, EST

When I came back to the hospital tonight, Jim Beau was much calmer and opened his eyes for me!  He has a great nurse tonight, which I have learned makes all the difference.  I don't worry about leaving him as much when I feel comfortable with his nurse.  I think he will have a good night and be ready to breathe on his own tomorrow!  

FRIDAY, DECEMBER 11, 2009 6:44 PM, EST

Today was a milestone day for Jim Beau.  This afternoon they took him off the ventilator and put him on CPAP (continuous positive airway pressure).   As you can see from the picture, he still has some tubes on his face, but now we can see his little mouth because all the tape is gone.  He can cry now, but his voice is hoarse from having the tube down his throat.    The doctor expects him to only need the CPAP for one day, which is good because I don't think Jim Beau likes it too much!  

SATURDAY, DECEMBER 12, 2009 8:34 AM, EST

Good news for Jim Beau this morning!  He is doing great on the CPAP and so this morning they are going to take him off of it.  Then he'll just have two small tubes going into his nose with a little oxygen.  The doc said "like you see in the soap operas" when people are in the hospital.   Then around lunch time we will get to try to feed him a little bit!    Let's hope he likes it!

He is very comfortable right now, which is a good change from last night.  I think he finally gave in to the CPAP instead of fighting it . They also got him snuggled up a little closer with blankets and I think he feels better like that.

Jane Ritchie, May May and Aunt Ruth are coming to visit today.  I'm glad they will be able to see Jim Beau without all the big tubes!

SATURDAY, DECEMBER 12, 2009 6:59 PM, EST

(This post is written by Aunt Ruth). Today was a great day for Jim Beau. He was taken off the CPAP this morning and spent the day on just the smaller oxygen tube. Mary Abigail and Paul got to hold and cuddle Jim Beau right after lunch today which was a big thrill. He is still being weaned off the sedatives and we hope tomorrow he will be more awake. May May spent 30 minutes trying to get Jim Beau to open his eyes, but he was too tired....but she gave him lots of love pats. Jane Ritchie is being a great big sister, and is glad to share her frog and blue teddy bear with JB.

May May and I were glad to arrive today, and for me, to get to lay my eyes on sweet Jim Beau for the first time. We found a Mexican resturant for lunch -- just about as good as Los Rancheros in Mobile. 

SUNDAY, DECEMBER 13, 2009 8:30 PM, EST

This evening Jim Beau drank about 5 ml of milk from a bottle!  He wasn't so sure about it, but did a pretty good job.  He is still pretty sleepy so hopefully tomorrow more of the versed will wear off and he will be more aware when we are trying to feed him.  He is still getting nutrition through IV so right now we are just practicing so that he gets the hang of it.

 They took off the big monitor thing from his forehead so now he really looks like a real baby!  He still has alot of wires attached to him, so holding him and trying to feed him feels strange.

Paul has gone back to Georgia for work and Jane Ritchie and Aunt Ruth will go back tomorrow.  Jane Ritchie had a fun afternoon at the park with Ruth and is really being a trooper through all of this.  Thanks to Uncle John for allowing Ruth to be away for so long!  :)

Will post some more pictures tonight!   Thanks again for all your guestbook messages!!

MONDAY, DECEMBER 14, 2009 10:15 PM, EST

Today Jim Beau slept alot and didn't have much interest in eating.  I convinced the nurse that instead of feeding him on a certain schedule, we should try feeding him when he is actually awake!  For instance, he was supposed to eat at 6 p.m. and he was awake for a whole hour before that.  So, when it came time to try to feed him he was ready to go to sleep again!   He was awake when I fed him tonight and he did much better.  They want him to be able to take 8 ml at a time now.  It took him about 20 min to drink his 8 ml.    Depending on how he does tonight, the doctor  might say he needs a feeding tube.

They think that CDH babies do not practice swallowing much in the womb because their insides aren't quite right.  Also, once they are born they have a tube down their throat so they just get out of sync as far as sucking and swallowing.

Amazingly...right now I am watching Mystery Diagnosis.  A grown woman has had stomach and breathing issues her whole life.  She finally finds a doctor that finds her colon in her chest cavity!!!!!   She had congential diaphragmatic hernia and no one ever knew!

Anyway, thank you again for all your prayers and messages!!!

TUESDAY, DECEMBER 15, 2009 9:59 PM, EST

Poor little Jim Beau had to have a feeding tube put in his nose tonight.  He just wasn't doing well enough with his bottle feeds.  So, now we try to feed him his bottle and if he doesn't take the whole thing, they put the rest down the tube.   It is a very tiny tube, but he did not like it at all when the nurse put it in!   Afterwards he was sleeping with one eye open.  I told her he was keeping a look out for her!!!

He is still very sleepy, which is one reason why it is hard to get him to take a bottle.  There is an occupational therapist there that is supposed to be excellent at working with babies who have trouble eating.  Hopefully we will meet her tomorrow.  

They moved us to another area of the NICU 3 this afternoon.  It is right by the window, which is nice.  The nurse said we might be moving to NICU 2 tomorrow.  I'm not really looking forward to that because apparently it is jam packed with babies!  It has been nice to have lots of room.   But, moving to NICU 2 is one more step to coming home! 

THURSDAY, DECEMBER 17, 2009 7:57 PM, EST

So sorry I did not update yesterday!   I was just too tired to think last night.   Yesterday they moved Jim Beau down the hall to NICU 2.  It is not as bad as some of the nurses made it sound!   It is a long room with 3 rows of babies.  There is enough room for a rocker next to his crib so that I can sit there to feed him.  There is one baby across from us that cries alot, but the nurses are very attentive to him, so it is not that bad.

Jim Beau is still doing great with his biggest challenge being the feedings.  Today he was sucking and swallowing alot and when I looked at the bottle, he hadn't taken any!  So, I think he was blocking the flow with his tongue.  Tonight I think I figured out how to get him to really drink and he took 10 ml out of 20 before he got too tired.   I think tomorrow will be much better.

Jim Beau is starting to act more and more like a regular baby now that all the sedative has worn off.  He was awake for a long time twice today.  He is definitely cute!

Dr. Kays (the CDH surgeon) came by today while I was there.  He is an interesting person.  I think I would jump out of a 3 story window if he asked me to!  He is exactly the type of person you want operating on your newborn.  He told me that he has operated every day for the past 20 days.  He was supposed to have no surgeries today and ended up doing two.  Amazing.

I told him how the feedings were going and he said that itsounded like it was going to be a slow process.  There is no way to know when we will be able to go home.  It all depends on Jim Beau's feeding progress.   Dr. Kays said that they way we are doing the feedings is good and that we should just keep doing what we're doing.    Oh, and he said Jim Beau sure is cute!

My biggest challenge is trying to figure out how to get my schedule such that I can pump, be there to feed Jim Beau and get other things done!   Today I tried to go to Target to get him a mobile and had to turn around.  The traffic was so bad and I knew I wouldn't make it in time!   I basically have 1 hour increments to get out and about before I have to be back to either pump or feed Jim Beau.   Thank goodness Aunt Ruthie was generous enough to use her vacation time to come down and keep Jane Ritchie!   I think they are having a good time!  And Ruth is cooking dinner for Paul, which I am sure he appreciates.  She is a good cook!

As always, thanks for the wonderful messages!

SUNDAY, DECEMBER 20, 2009 5:27 PM, EST

We have had a pretty good weekend!  Paul, Jane Ritchie and Aunt Ruth got here Saturday morning.   It is finally cold here in Gainesville and feels like Christmas.   Who knows what the weather will do next, though.  It might be 70 degrees tomorrow!

Jim Beau is doing so much better on his feedings.  They have increased his amount to 35 ml and this afternoon he took 16.  Paul was able to get him to take 14 this afternoon, so I sent him back tonight for the 6 p.m. feeding!   It is nice to have him here to take over and let me have a break.

Usually when we get there in the mornings, Jim Beau is awake and very alert.  Sometimes he stays awake until lunch time.   I was able to get him a mobile and he really likes looking at it.   Alot of the babies there are preemies and/or really sick, so I think the nurses like it that Jim Beau is so alert at times.  The nurse today said being awake and alert is a sure fire way to get the nurses attached to him!

Jane Ritchie has a runny nose so I'm hoping it is just a change in the weather cold kind of thing.  We are taking her to the movies tomorrow a.m. for the first time so we'll see if we make it through the whole movie!    I feel like she needs some Mommy time!

I promise soon to have some better pictures up.  All of these are taken with my cell phone.   I just need to download pics from our other camera.

Hope everyone had a good weekend and that you are all ready for Christmas!!!

MONDAY, DECEMBER 21, 2009 10:12 PM, EST

Jim Beau had a great day today!   They took him off his IV fluids and lipids.  Now, hopefully he will be getting hungry for his bottle.   He is now getting 42 ml every three hours.  He set a record today by taking 25 ml by bottle!!   He is doing much better!  Let's hope he keeps it up!

I am so glad they discontinued the IV because now he has a free arm!  It still has the picc line in it, but there are no more tubes to deal with.   I am thinking they might remove the picc line tomorrow.  

Jane Ritchie actually sat through the whole movie today.  We went to see The Princess and the Frog.  I think she was a little confused because the characters kept changing into different people.  She was such a good girl and enjoyed her popcorn!

I am not a very good journal writer, so let me know if you have any questions or if there is anything you want to know.

We love all of your messages!

TUESDAY, DECEMBER 22, 2009 10:33 AM, EST

Looks like Jim Beau had a great night.  The nurse was able to get him to take alot by mouth during his night feedings.  I got him to take 24 this morning and they increased his amount to 50 ml today.   I was discouraged at first with his eating, but I think he has the hang of it now!  The nurse just took out his picc line and he was very brave when she was removing all the tape.

Ann-- I think we get to come home once Jim Beau can drink enough milk that he doesn't need a feeding tube and once he no longer needs any oxygen.  They reduce his oxygen almost daily so I think he is doing well with that.  He does not require more oxygen when he is feeding and some babies do.    Everyone is saying that he is doing really well for a CDH baby.

Robyn -- the cardiologists have said they do not need to see Jim Beau any more during this hospitilization for his heart.  I don't think it is really affecting him at all right now.  They will send him home and then I guess we'll come back in a month or two for them to check it out.

We did not want to be here for Christmas but we'll make the best of it.   I will go back to Georgia on Christmas Eve to have Christmas with Jane Ritchie, Paul, Ruth, John, Sam, Angela and May May and Gan Gan.  Then they will all come down here the day after Christmas to see Jim Beau.    It will be hard for me to leave Jim Beau on Christmas, but good thing he won't know the difference!   We got one of our favorite nurses to request Jim Beau as one of her babies those two days, so that makes me feel better.  

THURSDAY, DECEMBER 24, 2009 7:57 AM, EST

We had a wonderful day yesterday, mostly because Aunt Ruthie came to spend the day with us.   Jim Beau ate really well, but still has a ways to go before he can drink the entire amount.  He could probably drink the whole bottle in an hour, but they don't want him using that much energy to get it down.   He has had some good awake time and is still charming all the nurses.

Last night a nurse that had never met him looked at his chart and said, "Oh, this is the DH baby who doesn't know he's a DH baby."   I took this as a big compliment for Jim Beau.  He is doing amazingly well.

I hope everyone has a very Merry Christmas!  

SATURDAY, DECEMBER 26, 2009 8:01 PM, EST

I hope everyone had a great Christmas.  We had a good one!  Jim Beau was fine Christmas Eve and Day when I was gone.  The March of Dimes came by on Christmas Eve, taking pictures of the babies for the parents.  Jim Beau's turned out really cute.  They took out all his tubes so it is his first picture without anything in his nose.   When I got back Christmas Day he was in his Christmas pajamas and his crib was decked out with some Christmas decorations.    My Phi Mu friend from Samford came by to meet Jim Beau on Christmas Day, so that was fun.  Thanks Tara!

Today Jim Beau had so many visitors!   He met his Uncle Sam, Aunt Angela and Uncle John for the first time.  Also, Aunt Ruth, May May and Gan Gan were here.   May May was able to get Jim Beau to drink 50 out of his 55 ml this afternoon.  Way to go May May!!

He did better with the bottle today thanks to a different kind of nipple.  They also told us to tilt his head a little bit so that the milk does not go straight down his throat, but more toward his cheek.  I really like having different nurses because each one has different tips to share.

The cardiologist did an echo on Christmas Eve.  They say his heart looks great and has not gotten any worse.

All we're waiting on is for Jim Beau to be able to take his entire bottle!

Marty and Bo and Keith, Catherine and Campbell are coming to visit this week, too.   Jim Beau is lucky to have so much family.  There are some babies there that don't have visitors at all.

Catherine....It's really not that hard having to be at the hospital all day.  You could actually live in the hospital if you absolutely had to.  They have pretty much everything you need.  The hardest part is really lack of sleep.  I have to get up to pump at night and there really isn't time during the day for naps.  I wish I was able to just close my eyes and fall alseep any time, any where, but I can't.   I leave that to Paul!  :)

TUESDAY, DECEMBER 29, 2009 4:50 PM, EST

Jim Beau continues to be a cute little boy every day!   He has had more visitors.  Keith and Catherine are here as well as Marty and Bo.  Uncle Keith got to feed Jim Beau last night, but May May still holds the record of 50 ml.

My stash of frozen breast milk is depleted so Jim Beau is having supplemental formula.  I had recently been just pumping and feeding him breast milk from a bottle.  I wanted to make sure the doctors could determine exactly how much he was getting.  I figured the sooner he could drink his whole bottle, the sooner we could go home.   Our new plan is for me to breast feed him at his feeding times if he is awake and then supplement.  We will weigh him before he eats and then then weigh him afterwards to try to determine how much he is getting.   This morning he did really well, so I hope he keeps it up.    I am not overly concerned about him continuing to get breast milk, but if he could learn to nurse it would make our lives alot easier!

 Not much more to report.  I feel like Jim Beau is getting stronger every day.  He has really good awake time where he is very alert.  I can tell he is a smart little boy!

As always, we really appreciate all your prayers and messages.  

WEDNESDAY, DECEMBER 30, 2009 10:58 PM, EST

WARNING!  This journal entry may contain talk of breastfeeding.  If that bothers you (Aunt B!!) then skip this entry!   :)

Over the last two days, Jim Beau has been showing us who is boss.   Two days ago he was slow with his bottle and was only taking 25-40 ml out of 55 ml.  Yesterday he showed great interest in nursing...so much so that we thought maybe that was our answer to getting out of the NICU.  Then today he nursed fairly well, but also showed us that he had gotten the hang of the whole bottle thing.   Tonight at 6 he wasn't too interested in nursing, yet he downed almost a whole bottle of formula.  

Dr. Kays came by today and was very pleased to hear about all the strides Jim Beau has been making.  The doctor's goal is for Jim Beau to take all his feedings by mouth.   It gets kind of complicated when nurses get involved because the nurses goal is for the babies to keep gaining weight.  So, if they can't get Jim Beau to take a bottle then they are going to put it down his tube so he doesn't lose weight.  I still haven't figure out how this is all going to work!   Just pray that Jim Beau continues to gain strength so that when the nurses wake him up he can stay awake to eat!

The pumping isn't going so great so also pray that we will make the right decision for Jim Beau.  One minute I think nursing him exclusively is the answer and the next minute (like when he downs a whole bottle of formula!!!) I think we should just concentrate on the bottle feeds.

On a happy note, one of the other CDH babies is going home on Friday.  She had her surgery about a week after Jim Beau, but hers was a mild case and she is nursing like a champ.  Her mother has been "rooming in" so that she can nurse the baby at night.    The work Dr. Kays is doing at Shands is wonderful.  I have heard several times since being here that when some people get a CDH diagnosis, their doctors recommend terminating the pregnancy.    We feel very thankful for all the blessings and "God Moments" we have had along this journey.

I am by myself again in Gainesville.  Paul and Jane Ritchie have gone home.   Thanks again to Ruth for keeping Jane Ritchie the last couple of weeks and to May May who is coming back on Sunday to keep her.    Please keep Jane Ritchie in your prayers as well.  She has been such a good girl through all of this, but I think the back and forth is starting to get to her.  And pray for me too because I miss my little girl!

THURSDAY, DECEMBER 31, 2009 11:44 PM, EST

Happy New Year to everyone!   And, I forgot to mention yesterday that Jim Beau was one month old.  Happy Month Birthday to Jim Beau!

He did well today with bottle feeding.  I have decided to focus on that, since he is doing so well with it.   I'm hoping that it will be enough if we can get him to take between 30 and 50 ml at each feeding.

Tonight around the 7 p.m. shift change he had some weird heart things going on.  The monitor would beep and show that his heart rate was low.  This is the first time this has ever happened.   The nurse was able to press print on the monitor while it was happening so they got a strip to show the doctors.  They also did an EKG.  Jim Beau was such a good boy.  They put a bunch of sticky things on his body and then connected big plugs to them.  As long as I was holding his hand he stayed still and closed his eyes.  Then they had to stick him to get some blood to check his electrolytes.

Not quite sure what that was all about but hopefully it was just a random thing and it won't happen again.  The good thing is that his breathing and oxygen levels stayed the same through it all.

Happy 2010!!

FRIDAY, JANUARY 1, 2010 9:58 PM, EST

Jim Beau is defying gravity!  In fact, I think that should be his theme song.  "I think I'll try defying gravity....and you won't bring me down!"

We had a revelation this afternoon.   Here's the deal....when Jim Beau was having so much trouble with the bottle, one of the nurses suggested we use a special NUK nipple.  It seemed that Jim Beau liked it so we kept using it.   It did not require him to suck that hard to get the milk out.  But, it still took him a very long time (sometimes 45 min) to drink.     The other day someone mentioned to me that the NUK is a "slow flow" nipple.  Well, today it hit me that maybe we should go back to the regular flow nipple.   Turns out that is just what Jim Beau wanted.  At his 5:30 p.m. feeding, he took the entire thing in about 15 minutes.  Then, he did the same thing at 9 p.m.

The reason he was not finishing his bottles earlier was because it took so much energy to get enough milk out of the NUK.  It was so great today when I fed him and he was actually still awake when he was finished!   The NUK just tired him out.  Little did I know that I was setting him up to fail with that darn nipple.

The nurses thought I was crazy because I was crying when he finished the bottle.  I guess I did not realize how worried I really was about his eating.  I am so relieved.   Pray that he keeps it up!  Tomorrow I'm going to get the bottles that I will use when we go home so that he can get used to them.

Yea for Jim Beau!  Now, Mommy's having a drink!  :) 

SUNDAY, JANUARY 3, 2010 7:59 AM, EST

Friday night, Jim Beau took all his feedings by mouth!!  yea!  So yesterday after he ate at 9 a.m., they took out his feeding tube.  This is great news!    He did a great job yesterday, as well, but was more of a snacker.  He would take about 35 ml and then sleep for a while and then take the rest when he woke up.  This is not particularly how I want his schedule to be when he comes home, but I can't complain since it was only his second day of really eating well.    It is hard to control his waking, eating and sleeping schedule when I am not there the whole time.

Monday we will try him off the oxygen to see how he does.  I think we are getting close to getting out of there!

Jim Beau had two visitors yesterday.  My friends Amy and Jon Minchin came by to see him and took me to lunch.  Jon went to UF and his parents live in Gainesville now, so he drove me around and showed me some good restaurants.   They brought Jim Beau a cute blanket with an elephant on it!  :)   It was nice to see some familiar faces!

MONDAY, JANUARY 4, 2010 9:55 PM, EST

No more oxygen for Jim Beau!  They took it out this morning and he has been doing great without it.  Most of the time his oxygen saturation is 100 but every once in a while it goes down to 95 or 96.

Today we fed Jim Beau more on demand than every three hours and it seems that in the afternoons he likes to snack every 2 hours.  I'm fine with that right now as long as he is getting enough calories for the day and gaining weight.   He lost a few grams last night so hopefully when they weigh him tonight he will have gained.

Each day we get closer to going home.  The practitioner told me today not to get discouraged and she showed me that she has already made a list of things that need to be done before Jim Beau can be discharged.  That is a good sign!

All in all we had a pretty good day.  It is kind of lonely being here by myself.  I hope I am not annoying the nurses by engaging them in conversation. I have no one else to talk to during the day and you can't use your cell phone in the NICU.    There is another couple with a CDH baby in the NICU.  I tried to talk to them today and they were not interested.  Plus, the mom called me "M'am"!!!!  :)

Here is a picture I took of Jim Beau after they removed the oxygen.  He gave me a smile at just the right time!   Another nurse tonight said he thinks Jim Beau looks like me.   I think he kind of looks like my brother Sam at times and also like May May when she was a baby.

Thanks for all your thoughts and prayers.  Sometimes I cannot believe how well everything has worked out.  God is good!

TUESDAY, JANUARY 5, 2010 7:36 PM, EST

We had a great day today!  Jim Beau was awake alot and drank lots of milk.  He showed us today that he is definitely into the snacking thing.  I think his little system just can't take a whole 2 oz at one time.   When we used to put it down the feeding tube he would gag and so I think it was just too much.  Now we just let him set his own pace during the day and let him eat when he is hungry.

Jim Beau was especially cute today for some reason.  He sat up for a while in his boppy, which was fun.  I'll try to post some new pictures soon.

The best news is that we will probably be discharged Thursday or Friday.  yea!!!   We have seen several babies around us go home recently so we are looking forward to doing the same thing!

We really are blessed that Jim Beau has done so well.  He acts and looks just like a normal baby, not one with two birth defects!   I have recently read several blogs about babies who had CDH and it is amazing how the severity of the defects vary so much with each case.    Reading others' stories has really made me realize how much worse it could have been.   I am so glad I didn't check out any of those blogs before Jim Beau was born.  I would have been totally stressed!!!

On an unrelated note...Weight Watchers here I come!!  I had my OB check up today and the scale was not kind.   I need some accountability if anyone wants to join me!  :)

Will keep you updated on discharge plans!

WEDNESDAY, JANUARY 6, 2010 9:42 PM, EST

We're still on track to be discharged on Friday.  Yea!

Jim Beau had lots of visitors today.   The cardiology team did another echo and I spoke with a cardiologist.  He said that while Jim Beau's tetralogy is very mild, his VSD (hole in the heart) is rather large.  He wants us to come back to see him in a couple of weeks and thinks the heart surgery needs to be done when Jim Beau is about three months old.   The hard thing is that some of the problems associated with the heart defect are the same as the problems that a DH baby might have (fast breathing, eating problems, etc.).  So, we will just have to watch him closely when we get home for any change from his norm.

After the cardiologist left the radiology people came and took a chest x-ray.  Our practitioner looked at it and said it looks fine.

Then Dr. Kays paid us a visit.  He said he was fine with Jim Beau going home on Friday and we'll come back to see him in about 6 weeks.

Jim Beau's neighbor, Zoe, got discharged tonight.  She was born at 24 weeks and still wasn't term when she left!  It is amazing what they can do with preemies!

Thanks for all your messages of support!   In the next couple of months if you are every wondering what I am doing, the answer will probably be "feeding Jim Beau".    Right now it seems that he likes to take small amounts every 2 hours or so during the day and then larger amounts at night every 3 hours.  Today,  I was getting kind of worried that he was regressing with his feeding, but then tonight at 8:30 p.m. he drank his entire bottle.  I had just finished telling the night nurse that he couldn't take his whole bottle.  I guess I underestimated him!   

THURSDAY, JANUARY 7, 2010 1:26 PM, EST

Well, we won't be going home tomorrow.  boo!   Jim Beau did well last night with his new eating goals, but he just didn't gain any weight.  So, now we have new goals!   Hopefully he will gain some good weight over the next couple of days and we'll be good to go.

Will keep you updated!

FRIDAY, JANUARY 8, 2010 7:05 PM, EST

Well, Jim Beau lost a few grams last night but he had better intake of milk.  His small weight loss could be caused by the diuretics he is on for his heart. They started two new meds last night.   I think a decision will be made day by day as to whether we can take him home or not.  They don't want to send him home before he is ready because then we'll have to bring him back for failure to thrive and that's not good!

He drank pretty well today, but ate a smaller amount every 2 hours.  When I am there and he is showing hunger cues, then I feed him.  The nurses try to stick more to his schedule.  So, at night he drinks more because they feed him pretty much only on schedule.    He also got off track today because he had his little boy procedure done this afternoon.  They said it would only take 20 minutes, but didn't bring him back for an hour!    He was starving I am sure, but also upset so it was a little harder to feed him.    The nurse gave him some tylenol and he went right to sleep.

Paul and Jane Ritchie are coming tomorrow morning so hopefully we'll all be able to go home together on Sunday or Monday!

MONDAY, JANUARY 11, 2010 9:21 PM, EST

We are home!!   We arrived in Kingsland at 6:30 p.m. and the house smelled wonderful.  Of course, May May had supper and banana pudding waiting on us!  

They determined this morning that Jim Beau had gained enough weight and had increased his intake enough that we could go home.  I left the hospital with him a little before 2 p.m.  It was very strange to hold him without any wires connecting him to a monitor!  Thankfully it had warmed up nicely and wasn't too cold for his first trip EVER outside the hospital!   He is 43 days old today.

The trip home was ok except that about 1 1/2 hours into the trip, Jim Beau decided he did not want to be in the car seat anymore!   He is just not used to having to sit up a little bit.  He cried and cried!  But, he was fine when we got home and had his supper and checked out his crib and his mobile.

He has about 5 medications to take so we got all those straight and I made my list of what he needs to take at what time of the day.  It can get very confusing so I'm just going to start out giving the meds at the same time that the nurses did.   We also had more packages to open.  We have the most generous friends.  Tomorrow Jane Ritchie is going to think it is Christmas again.  I must get started on the thank you notes!!

We have a pediatrician appointment early in the morning here on base and then go back to Gainesville at the end of the month for a cardiology appointment.

I was surprised at how well Jim Beau ate today.  Either the new meds for his heart are giving him some more energy or he was eating for comfort because of his new surroundings!   We are going to have to get him a radio because I don't know if he can sleep when it is so quiet.

Thank you all for your prayers and support.  We could not have gotten through all of this without them!   We will continue to keep you updated on Jim Beau!!!