22 Chambers

Gabrielle is home once again and doing great! Her respiratory rate has slowed tremendously thanks to the lasix and the breathing treatments.  The docs all concluded that she had a virus of some kind and is definitely recovering. We have a follow up appt with Dr. Rao in Milwaukke next week and our pediatrician tomorrow.  We also had the home nurse over yesterday afternoon and she said that Gabi sounded good and looked nice and pink.  She unfortunately came home on O2 but it should be only for a week or so.  She hates that nasal cannula and continues to pull it off her face.  The docs said when she is sleeping is the most important time to have the O2 on.

She is once again smiling and trying her hardest to babble.  Ethan took this video of her when she got home.

We had our friends, the Buchmann’s (Carsyn’s parents) over yesterday and it was great to visit with them.  They are continuing to plan for the auction on March 6th. If anyone has anything to donate for the benefit, let me know.  All proceeds go to the cardiac floor at CHW.  The plans for the funds include: a Wii for the older cardiac kids in the playroom for theraputic use, additional bouncy seats and swings that were made in this decade, lots of toys that PT and OT need, and the majority of the funds will go towards building the garden outside the cafe at CHW.  I am so excited for this event.  If you want to attend, please let me know, there are plenty of seats available. Thanks to Anne R and Rachel for their donations!

Thanks for checking in.  Love to you all.

Teri

The nasal swab tests came back…all negative.  RSV, Influenza A and B, paraInfluenza, blah blah blah.  Not that being positive would have changed her course of treatment but now she can come out of isolation. She continues to get pep treatments (breathing treatments, like a nebulizer but much more intense). They are slowly weaning her off the O2.  Hopefully today she will get to room air. She is so bored but at least she has her Spongebob to watch.  She loves Spongebob!

They do chest x-rays in the early morning so we’ll see what the docs say about that.  I didnt’ get to see it today.  I have learned to read those pretty darn well. They are looking for the fluid that is around her heart and in her right lung.  Hopefully the lasix has helped her get rid of some of that.

Overall, she is doing well. There is hope that she may be able to come home today. Yeah!

Thanks for all the support!

Love,

Teri

Gabi’s blood tests all came back normal, so we are waiting for the nasal swab test results which will show if she has a virus.  They are thinking RSV.  SHe is doing really really well though.  She is talking to the nurses and giving plenty of dirty looks to everyone.  That’s my girl. 

The fluid around her heart has been labeled “no big deal”  I don’t know how that is no big deal, but it is.  They put her on extra lasix to pee off some of the fluid.  She is still breathing fast which is the biggest symptom she has .  She is a little congested but not bad.  She is coughing but not hacking up yucky stuff.  I am eager to find out about the virus tests.  Stinks that we are back here for a few days, but not to worry too much, she is doing OK.

Love,

Teri

Teri called me today on the way up to Milwaukee. Gabi’s breathing hasn’t normalized and when Teri took her into the Pediatrician her 02 levels were low (mid 70’s). Rather than go back and forth with the local hospital and go up to Mil. late tonight, she just grabbed some clothes and took Gabi up there this afternoon. So far they can’t quite figure out what the issue is. They did an X-Ray and things look alright, and she isn’t really showing any infection symptoms. It might be some sort of respiratory virus, but the swab on that won’t be back until tomorrow. They didn’t see anything right away on the echo either. When we get some more info I will update things. So far this looks like more of a hassle than a huge worry, and I hope it stays that way.

LATE ADDITION: Text from Teri: “Found some fluid in her heart, not a terrible worry but a concern”

Gabi is certainly keeping me on my toes.  She is so pukey and so gaggy and I was told that was going to get better after the Glenn, and so far she is still suffering from throwing up and choking on the spit up/vomit.  I called her doctors and they all said things will get better with time.

One of her home nurses was over a few nights ago and agreed with me that her G tube area was bothering her. The G tube heals up to be similar to an earing hole.  Usually when i do my daily cleansing, she isn’t affected by it at all, but all of the sudden she was in pain from tenderness.  Called surgery and answered their list of questions and she determined that Gabi probably just yanked on it too hard (which is really hard to avoid because she is so grabby now). She is grabby, gaggy Gabi. Ha! After a few days, it is feeling better.

Starting on Sat evening, she looked really terrible, was breathing fast and very pukey. I checked all my bases, sats, temp, felt her tummy, even listened to her with our stethoscope and everything seemed fine.  Today, she is still breathing fast and her night sleeps are miserable, so after smiling a bunch this morning, she is taking a long nap.  It is so difficult to decipher whether she is tired, has a cold, even gas, or is her heart failing…

2 side notes:

1. A baby girl named Ellie Potter was born a month after Gabi at CHW with the same diagnosis, HLHS.  She is awaiting a heart transplant and she is so very sick.  I know her parents well and I pray for strength for them and for courage to hold their little Ellie tight as long as she is with them here.  Their website is elizbethbrianne.com.

2. THE COLTS WON!!  We are beyond the Colts’ biggest fans as they are family.  Literally family.  I am so thrilled for the entire Colts crew as they head to another Superbowl victory!!  Although Ethan and I are SO SAD that we weren’t able to attend the playoff games in Indy because of Gabi, we were just as excited at our own party feeling blessed that she was sitting on my lap and Ethan was teaching our 2 boys about football in our living room.  GO COLTS!!

have a wonderful week!
Love,
Teri

This morning, we had 6 visitors come to the house to do their evaluation of Gabrielle:  PT/OT/Speech/Develpmental/a nurse consultant and the service coordinator.  They all assessed her on their goal score sheet.  All of them agreed, she is at a 3-4 month old level.  She is 7 months, so she is quite behind, but not so severe that she can’t catch up. Things def. could be worse!! She has qualified for PT and OT both twice a week and speech starting at once a week but moving towards twice a week soon.  She tolerated all the handling and movements well but certainly voiced her opinion when she was unhappy or working too hard. I am so excited to get this started.  Now that we are home, I don’t know quite what the next step is.

I am also quite overwhelmed with emotions lately.  An 18 month old HLHS boy just died for no real reason, and came so unexpectedly.  Another little friend that I have known since Gabi was born died right after Christmas.  His parents are absolutely devasted.  Another little heart friend is waiting for a new heart and is not doing well as she waits at CHW.  Another friend just had her Norwood and had a tough few days, but is now pulling through.  I know that every day with our children, not just heart children ,but healthy ones as well is a gift because you never know what might happen.  I was trying to get involved in different heart groups with families of heart kids to get support but I just don’t want to think about it everyday.  Is that weird?  I don’t want our lives based on her heart condition and how fragile she still is.  My perspective has changed so much.I feel very disconnected from everyday things…maybe it’s just the winter blues…

Enough of my craziness, gabi is doing great.  Everything is really good, except for the feedings. That is still horrid.  She is still pukey and very gaggy but I have been told that it will get better over time.  I just realized it has been more than a month since her most recent surgery. wow. Even these dreary winter days go by pretty quickly.

Hope everyone is hanging in there during these brutal winter days.  Can you tell I don’t like winter??? Every january/february, I try so hard to come up with a scheme to move somewhere warm and then when May FINALLY rolls around, and I forget about it!

Love to you all-

Teri

So apparently my new normal is so insanely busy that I can’t even sit down on the computer and post for a minutes, muchless check my email. Well, check I can do, but respond…that would be too much.  Gabi is doing really really well.  She certainly keeps me on my toes between all of her meds and feeding routine.  And I am JUST starting to let her cry for more than a few minutes.  My other kids, I had no problem letting them cry it out, but this precious girl, oh no…. she’s my angel.  I know in a few days/weeks/months, I will have created a monster , but right now, she is my baby girl!

I am anxious to get PT, OT and speech started next week. I still push her just enough to get her tired.  I can’t believe she is already 7 months. She sits in the bumbo chair or even just in my lap.  Her trunk muscles are so weak that she is no where even close to sitting.  She is just starting to bat at toys and become aware of her feet. This morning she actually shook a rattle intentionally  when I put it in her hand.  She loves her brothers and sister.  She watches them run around and laughs when they approach her and say “boo” or “blaaah.”

She has been to the pediatrician and the home nurse has come over a few times to check in.  They all agree that she looks great.  I have even taken her out to the store a few times and she loves adventures!  It’s interesting the looks I get when people peek into the car seat to see a cute baby and the first thing they see is her G-tube hanging down.  Their reaction is a slight pause and “oh she’s so cute,” when I know they are wondering what is wrong with her.  I just politely say thank you as they back away as quickly as they can without being rude.  I don’t find it offensive in the least bit. I am sure most people just dont’ know what to say.

There have been MANY times where I see a handicapped child and just keep walking and try not to stare.  But I do think about the parents and the child and used to think, ” I could never do that.”  or “I feel so bad for them.”  All those parents are just like me: shocked, saddened, angry but so full of love for their children that they don’t care what anyone else thinks.  My perspective has totally changed.  Everyone has a story, everyone has pain in their life, and if you don’t, then it will come.  I am so grateful that my life has changed because of Gabi.  I won’t lie, it is overwhelming and the fear and selfishness creeps in, but my life is so much for the better now.I cherish every moment, even when my 4 year old Thomas is driving me CRAZY….he is a gift, like all children.

I have so many friends that need prayers and support that I am trying to focus on them and give back to everyone that has helped us.

Thanks for checking in. The Danstrom’s are doing excellent!

Oh- the Wings of Angels Endowment fund in Carsyn’s honor is holding their first fundraiser on March 6th. It is going to be just outside of Milwaukee and going to be a blast!  If you want to attend, let me know, or if you have something to donate for their silent auction, let me know that too. A gift basket, or movie tickets, or a something hand made are great ideas.  All the money goes towards building a garden at CHW where families can go and find some peace when their child is sick.  After that is built, all the money will go towards the CICU, the 3rd floor, at CHW.

Love,

Teri

Happy New year everyone!  With a lack of time at home these days, I am just going to post some pictures for tonight.  Gabi is doing awesome, although a bit gaggy…a bit worried, but nothing to call 911 for yet. One day at a time.

Christmas morning

My attempt at getting a lovely picture with my 4 children

Bikini model for sure

Silly Thomas

We rang in our New Years this year with our dearest friends/cousins, the Coyle girls…Jennifer, Coco, and Tessa.  I cannot thank them enough for their friendship, visit and generosity.

Love
teri

Sorry for the lack of updates.  Gabi is doing so incredibly well.  I just cannot believe it.  She is truly a miracle.

Monday we had a follow up appt at CHW  with Dr. Rao, our cardiologist.  She had a chest x-ray, labs drawn and an exam.  He said he has never seen her look so great.  Her chest was totally dried out, her sats were a little low at 79, but they SHOULD increase over the month or so to the mid 80’s.  He said we can try and lead a “normal” life now. Although I don’t know what that will mean for us, to hear that coming out of my most trusted doctor was like God’s voice telling me…you did it.  You made it through. He chuckled at the tears in my eyes and shared in my joy. Our next appt at CHW isn’t for 2 months!!!!   2 months!!  Unbelievable. How am I going to stay away from all of my new friends?

I just cannot express to you how elated we are.  I know the next few years will still be up and down and probably a few hospital stays with colds and flus, but I know we will make it.  We have reached that light and now we can just enjoy every smile and every coo and every milestone we share with Gabi.  She is so happy and so much more relaxed.

The next big hurdle will be therapy. She has never eaten anything by mouth and she is quite behind developmentally. But we’ll get there.  We have speech and PT and OT coming over starting next week.  And we will continue with our home nurse visits.  WE are so blessed and so thankful.

If I listed everyone that has been there for us, it would be many pages long.   I know there have been many times that I have been aware of a family needing help/support and I MEANT to get around and help them but never found the time.  Never again.  I will pay all the help and generosity forward to others that need God’s grace in their life. I have learned so much from my Gabrielle and all the other babies in the hospital. I still think there could have been an easier lesson, but God knew what His plan was for us and knew that I needed a kick in the butt.

Love,
Teri