Dr. F saw one artery in her right shoulder that needed to be coiled off so she proceeded with that. Dr. Cava didn’t want to mess with anything else… He explained they can finish all those necessary tune ups during the fontan in July.

She is resting now and I am trying to keep her still.  They insert the catheter into the main artery at the top of the leg and if it doesn’t stay still for a few hours there cold be a lot of bleeding.  But she is handling it well.

They all say will be getting out of here tonight… Hopefully around 8:30 or 9:00. Its been a long day but I am SO thankful this is over and that we got great results!

Thanks be to God!

Please God, be with my baby girl.

Gabi continues to blow our minds as far as her development and her sense of humor. She is walking faster and does her darndest to keep up with all the kids. It is difficult to even think about handing her over to Dr. Tweddle. The thought of him opening her up again makes me sick.

Dr. Cava initially wanted to hold off her fontan until late summer but her endurance is just terrible. I would say that she can walk maybe 20 steps without getting winded and turning blue. Literally, her hose turns blue and her face gets dusky. She sometimes tries to fight through it as she desperately wants to keep up with her siblings and neighborhood friends. But she just can’t. We need to pick her up and give her a rest.

With that said, Dr. Cava and team agreed that she needs the fontan surgery sooner rather than later. Of course, Dr. Tweddle is booked until July. But if he gets a cancelation, it may be sooner. So, the cath will be May 8th and right now her surgery is scheduled for July 9th.

My brother, Tim, is getting married August 11th in Telluride, CO. I mentioned to Dr. Cava that we were considering taking the family, including Gabi and I wanted to get his thoughts as far as how altitude and oxygen levels would affect her.

He smiled and said she could not go. The lack of oxygen and less gravity to help her blood flow would just not be conducive for her at this stage. Now that her surgery is scheduled for July 9th, there is no way she would be able to go. Sorry Tim.

Her cath, scheduled for May 8th, is when they will go in through her neck and groin to take measures of pressures and take pictures of everything they need to know for the surgery.  They are fairly certain her body has developed collaterols. These are those pesky new routes her body has formed for the blood to flow.  These are taking the blood in the wrong directions, so they will coil any of these off during the cath.

She also has a dentist appt scheduled for May 31st.  The docs have to be certain she does not have any cavities before her surgery.  Any decay in a tooth leads directly to the heart which could cause a serious infection.

Gabi is in the process of getting evaluated by our school district.  She has an IEP meeting scheduled for May 18th.  The school nurse has called several times to make sure they haven’t missed any medical issues. lol.  The district is purchasing a pulseox and new AEDs (automated external defibrillator) for each school. I assume they probably needed a good reason to purchase this equipment… enter Gabi.  She will qualify for PT, OT and speech through the district.  Right now, she receives therapies through a private facility and through EI (Early Intervention).

That’s about it for now.  Max has a minor procedure for hypospadia and chordee on his wiener this Monday. April 30th, so we are quite busy.  A few prayers for all of us as we endure all of these procedures would be really appreciated.

I hope everyone is enjoying their Spring!

Love,
Teri

A few pictures.  Max was born 9/26 and is perfectly healthy.  He does have some minor issues with his male private parts but one quick surgery in April and all will be fine.  Happy Valentines Day!

Cruising along through summer.  Hope everyone is enjoying the warmer weather

Gabi had her check up appt in Milwuakee on Monday the 27th.  We now see Dr. Cava, since our beloved Dr. Rao moved to Phoenix.  We know Dr. Cava well from Gabi’s hospital stays.  He hadn’t seen Gabi in clinic in over a year and he admittted he was quite alarmed with the lingering fluid around her heart, the size of her heart and the “leaky valve” issue.  At first glance he thought, these issues seemed to be much more severe than he remembered.  However, when he compared the results to her previous history, he was put at ease a bit because the results are pretty much the same.

The leaky valve (tricuspid regurgation) can be repaired during the next surgical procedure, the fontan.  The fluid around her heart is not normal. His only thought was that she lacked enough proteins in her diet.  In her lab work, he ran an albumin test to see if she was low on protein.  If a body is low on protein, fluid can accumulate anywhere in the body.  I remember when she was fresh out of surgery and looking bloated, they would give her albumin and she perked right up.  The lab results show that her levels are normal.

He recommended that we wait for the fontan until next spring/early summer.  But he does want Gabi to go into the cath lab (catheterization laboratory) in the winter. This is where they will insert a catheter inside the artery via her groin and be able to go up into her heart to repair necessary things.  This can also measure arterial pressures and obtain great information.  Her O2 sats were really high, at 89-90.  Sounds great, right?  Not so much.  This means  her body is forming collaterols, new pathways to and from the heart.  The blood is developing these tiny little pathways to where it’s not supposed to go.  During the cath procedure, they will coil these off.

They need her to get bigger and stronger before the next surgery and she does have plenty of time but basically the eating thing needs to improve.  She is 100% on a liquid diet of pediasure that she gets via g tube.  She tries and loves to eat, but can’t swallow.  If the food goes back into the back of her throat, she gags and throws up.  There is a 2 week inpatient feeding clinic that we are considering.

It’s always a realty check when we have an appt.  We treat her like a normal kid and she tries to just keep up with everyone.  I never forget about her troubles, but we try to lead as normal a life as we can.  And then to hear the severity of her conditions always makes me shed a tear. However, she is with us and smiling everyday!  And for everyday, we are grateful to have our wonderful Gabrielle!

Love,

Teri

It has been a long winter but even the vey few days of sunshine have showed me that we survived and will carry on… what choice do we have?

Gabi is doing OK.  In late January, early February, all the kids and myself tested positive for Influenza B.  Fevers at 104, breathing problems… scary stuff.  The kids were out for weeks at a time. Luckily, we were able to get Gabi on tamiflu really early on and she gets synergis vaccinations for RSV.  Between those 2 preventative treatments, we managed to keep Gabi out of the hospital.  Thank goodness. She has had a cold off and on since then and her sats continue to be low… around 77.  Ideally, they should be mid 80′s.  We are watching her closely.  She had a check up appt at CHW with Dr. Rao and he wants us to call  in her sats on a weekly basis.  Unfortuanetly, whenever she is congested, she doesn’t tolerate her feeds well, so her weight is only maintaining, not gaining.  But they are OK with this so far.  She is not loosing and hangs at about 5% of the weight scale.  The fact that she is ON the scale with “normal” children is fantastic, so they are keeping the perspective.

She is happy, and getting around like all toddlers.  In the toilet, escaping through the open front door, climbing on the open dishwasher door… you know, the usual things She continues to struggle with walking but she is getting so much stronger.  The eating is still our biggest battle.  The past few months have really set us back as far as any calories being counted orally.  All her feeds continue to  be through her G tube.

On top of the flu in late January, I was incredibly sick.  Incredibly sick with morning sickness… all day sickness for me.  Yes, we are expecting #5 !! Our emotions have gone from: devastation, denial, depression, anger, back to disbelief, shame, embaressment, and we are finally moving into acceptance and excitement.  I am due Sept 30. On May 13th, we have the ultrasound to find out the sex and they will also do a full fetal Echo and level II exam.

Gabi’s next appt is in June and they are planning on doing an echo of her heart.  The results of this, along with the series of sat reports will help them determine the timing of the next surgery.  The fontan can be done anywhere from 2 1/2 years old on up.  There is no benefit for waiting until the kids are older.  She will be 2 this June, so her next heart surgery could be as early as next winter.

I hope everyone survived this brutal winter and is looking forward to summer.  I know I am.

Thanks for reading.

Love,

Teri

Gabi is our Christmas miracle!  I am finally able to look at her and not see a sick child. For the past 18 months of her life, I would concentrate on memorizing her face and her movements and her expressions and her babbling.  I wasn’t sure how much time we were going to have with her and that’s all I could think of. And the thought of her ever forgetting how she smelled or the sound of her laughter was just too much to bear.  Yes, I have accepted that she may live a short life but that doesn’t make it any easier.  I make certain her quality of life was the best I could possibly give her.  If this was her short life, I wanted her to experience happiness and love and nothing else!  I know that is impossible, but it was my goal.  I thought for a long time of quitting the therapies because I thought who cares if she isn’t strong enough to crawl… I didn’t care if she was “low tone”. It is so natural to plan for the future whether it be in many years or just a few months, but with a sick loved one, to enjoy the moment and enjoy every day is the goal… Gabi is our Christmas miracle and she brings unbelievable blessings to our home…

I truly hope everyone has a wonderfully blessed Christmas season and a Happy Happy New Year! And I pray everyone can find a Christmas miracle in their home, because there always is one. Sometimes you just have to adjust how you view something or someone.

With  much love and relief,
Teri

This is at Arlington Pediatric Therapy. Gabi and Ethan Jr. receive therapy there and this was their annual Christmas party. It was very cute.

I hope everyone has a wonderful Holiday Season and a very Merry Christmas!

These are pics from her most recent hospital stay!
Love,

Teri