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

Thanks for all the prayers and well wishes. And thank you to our wonderful neighbors for all the help with babysitting and driving! We are so blessed.
Love,
Teri

Her BNP is down to 88!!!! Unbelievable. Amazing. This means she is most definitely not in heart failure. However, her heart does work hard so she needs more calories than an average kid, so we just need to feed her more.

We are so thrilled.
Love,
Teri

She has been doing so great for the past few months and hopefully they can find the right feed plan for her, but in the meantime, this sucks.  She is so happy crawling around the floor exploring and playing with her brothers and sister. I can’t imagine how difficult this is going to be having her confined to a hospital room.

Hope everyone had a wonderful Thanksgiving!

love,

Teri

I just talked to Dr. Rao. Gabi’s BNP number is 178… the lowest it has ever been!!!! We are just thrilled.  Her weight loss is def. due to needing more calories rather than complete heart failure.  Thank goodness!

Just for a reference, we have an HLHS friend’s BNP number has been as low as the teens.  Another HLHS friend that is on the transplant list is in the thousands.

Gabi has been as high as 1000 before her Glenn surgery about a year ago today.  A “normal” healthy person with 4 chambers would have a BNP of zero.

“When there is no struggle, there is no strength.”

Love,
Teri

Anywhoo- Gabi is once again doing great.

Here is the shortened version.  After throwing up blood in the car at Marissa’s trip, I had to zoom home while calling the docs. When I got home with the kids, there was A LOT of frank blood (bright red blood) coming out her G tube extension. I stopped her food and got back on the phone. First with our awesomest pediatrician NP that walked me through exactly what to do.  I was talking to the nurses from the GI dept up in Milwaukee and lets just leave it at I wasn’t too thrilled with their response.  I went around them and paged cardiology (Dr. Rao) and we all decided it would be best for her to be seen up in Milwaukee, which is what I had assumed.

Usually I am by myself, but I was lucky to have company this time with Colleen.  She was in the back with Gabi in case of more blood pukes. When we go to the ER all was smooth in the beginning.  Then it got exciting.  Gabi was fine but the decisions or lack thereof were none too great.

We got there at around 2:30ish pm and we were in the ER room until almost 11 pm.  With a “normal” kid, this is pretty expected but with a kid like Gabi there is no excuse.  They knew they were going to admit her but the rules state that a kid is not allowed to go to their room without an IV.  Fine.  I get that but when they try 6 times…. enough!!!  First one nurse tried then another, then they paged the transport team to get one and usually they are REALLY great at IVs (so are the nurses for that matter) but by this time, Gabi had not had fluids since that morning and she is bleeding in her stomach and with her cardiac problems, she becomes dehydrated VERY quickly.  SO- now she is dehydrated which makes veins extremely small.  So, with her already tiny veins, they are that much smaller.  I insisted that we just go to her room where we know all the critical care docs and ICU nurses and they are pros at getting IV’s in… but they wouldn’t let us bypass the ER.  One poor nurse took the brunt of our frustration but then things started to happen. An anesthesia fellow was able to come and successfully get an IV in Gabi’s foot even after a 22 hour service!  We called him magic hands.

So, after the IV was in and after me ALMOST loosing my mind, we got fluids in Gabi and an antacid of sorts to help stop the bleeding was given intravenously.   Thing were starting to look better.   We got our room assignment and after waiting another few hours, we headed up to room 418 where the nurses and docs did their assessment.

Rich and Colleen left by this point and I was still running on adrenaline at this point. I am usually in bed by 9:30 and it was past 11 at this point.  Gabi was exhausted! If I left her side, she freaked out so leaving the room even to go the bathroom was horrible.  Hmmm- I am a little trapped at this point.

She FINALLY fell asleep watching some Jay Leno and I had to run to the car and at least get my change of clothes. Then I realize at midnight… I am starving. I go to Cafe West and get some soup.  The chef recognized me and made me a grilled cheese to go with it.

When I get back up the room, the extra chatty night nurse insisted we get the admission paperwork done with. Usually the nurses are pretty good about filling those out for me and just have me sign the papers, but no not this time.

Question 1: How did you travel here?  Was your child in a carseat? Was the carseat buckled in?

Question 2: What is your child’s daily routine?
Question 3: What are your child’s favorite foods?  What is his/her meal schedule? nap schedule?

I am ready to throw this nurse out the window.

More questions:

If you have a daughter, is she menstruating?
Please describe any previous hospitalizations your child has had?
Please describe any previous pain experiences your child has endured.

What is her reaction to the pain?
What is her reaction to the pain?

IF your child has been hospitalized, how has this affected your family?
How has this affected any siblings?  Do we need to call Child Life for those siblings?
Are you feeling anxious?  Is your child feeling anxious?  Would you like us to call the chaplain for your anxiety?

Do you know what I wrote across the top?  Are you freakin’ kidding me?  Look at her records that you have in your system!! Yes I have a carseat and no I am not afraid for my safety or the safety of my child and No my one year old child is not menstruating!

After I filled out the ungodly paperwork and nurse did not appreciate my bitter sarcasm, the cardiology attending came in and told me the plan of care for Gabi.  They were considering doing an endoscopy to diagnose an ulcer or gastrinal tear but he said the treatment for these would be the same as what they are currently doing so he wanted to avoid any sedation for Gabi and diagnosing her would not help them make decisions.  They were assuming there is some kind of either irritation or ulcer due to the daily aspirin she is on.  They prescribed an antacid for her and she received several doses intravenously.  The bleeding was under control almost immediately.  She is still pooping out quite a bit of blood but she is getting it out her system.

SO- the next morning, after the cardiologist made that decision, I figured we would be out of there in no time.  They needed to feed her and observe her for 2 hours while eating to make sure she could hold down her food. Fine.

She was up all night; we slept off and on for a few hours. By 7 am, I was pushing to get the food started. Then the nurse shift change happened so I had to start pushing with a new nurse.  Don’t get me wrong, the nurses are wonderful!  I have no frustration with them; they are just doing their job.  So our day nurse is finding out if we can start feeds.  She comes back and tells me they are still deciding whether or not to do the endoscope.  I said that that decision had already been made by cardiology and GI together.  Well, this decision didn’t get communicated to the ICU docs. So, the ICU attending said we had to wait for rounds and they were specifically waiting for cardiology to come up from the 3rd floor.  I paged Dr. Rao but he was sleeping.  Nancy was busy in rounds. SO we wait.  We waited until 11:30 in the morning for rounds and I was ready to loose my freaking mind!  Gabi was totally fine and everyone agreed but the docs needed to officially come together and make some decisions! Ugh. AND- I was trapped again so I was hungry!  I texted my dear friend Chris and he brought me a diet coke and pizza!  Thank you so much Chris. Before that, I had brought a care package for another family in on the 3rd floor with pumpkin bread and chocolate covered pretzels.  I tried the pumpkin bread, which I am glad I did because it wasn’t very good….and Gabi loved the chocolate on the pretzels.  Even though the nurse came in and saw chocolate on her face and wasn’t too happy with me.  oops. sorry wolfe family. I ate your care package.

We turned the feeds on immediately and in rounds they did say her hemoglobin numbers from a CBC count were not normal but this could have been due to dehydration.  So they needed to repeat those labs at 3 pm. Dr. Rao also wanted to get a BNP to measure how bad her heart failure is. She had lost about 6 oz and actually her height was .5 inch less. She was loosing weight and shrinking, which obviously were not good to hear.  So, Dr. Rao wanted to make sure she just needed a new nutrition plan and her cardiac function was not worse cuz this can make her loose weight.

Her CBC came back normal y 3:15, she had eaten for 3 hours without one vomit.  I had a new feed plan from our fav nutritionist. The ICU docs wanted to wait until that BNP number came back but I insisted that Dr. Rao could just call me with that number. They said she had to wait,  I paged Dr. Rao he told me we could leave. I love that man.

So we were out the door by 4:30!  Gabi has certainly taught me to be an advocate and that every rule can and should be challenged!  I feel that power the administration has over me and it makes me crazy!  Crazier than usual.

I will call Dr. Rao and get that BNP number today, although he was on service for 220 hours sleeping on and off, and he was going home today to see his family.  If it is urgent, he will call us.  If not I trust him he will call me soon.

thats it for now.  We are home! We are very blessed!  very.

Love,

Teri