Update on Lyla

My goodness it's been forever since I blogged.  I am so sorry!!!  UGH!!!  I want to update this blog every day but I end up getting distracted by this group.

That cute bunch of LOVE keeps this Momma busy!!!

Okay well here is my update on Lyla:'

Lyla's cardiologist called today.  He informed us that the team in Rochester decided Lyla is not a candidate for surgery anymore.  They don't believe she would survive open heart surgery.  They took 4 weeks to make this decision.  So obviously it was not something they took lightly.  Several different physicians, surgeons and specialists weighed in over those four weeks.  We are so grateful that they took all the time they needed.  Pretty Amazing Really.

Now we are waiting to hear what Boston thinks.  We are also PRAYING like crazy.  They now have the weight of this heavy decision.  With out surgery Lyla's quality of life will be very poor.  But then again the surgery itself could end her sweet life.  UGH  :(

Would you please Pray for the team in Boston too?  Thank you so much!!!!!!

I promise you this - we cherish every moment with this most amazing, beautiful girl!!!

What a PERFECT GIFT SHE IS!!!!!!

Lyla update

We met with her cardiologist after the cath. I just love her cardiologist. He is always so good with Lyla and so honest with us. The cath results show that the Viagara is working. But unfortunately the cath also showed some danger in her lungs. The pressures in the arteries of her lungs have dropped considerably. He really did not understand why unless she was brewing a lung infection. He is not sure the surgeon will be willing to do surgery. So he sent Lyla's records to Boston. He said we are not going to shop around to find someone willing to do surgery. We will just see what Boston has to say since they are the best. He told us that with out surgery Lyla could die in 6 months or she could live 6 years. He said her quality of life will be incredibly poor. He said if this was his daughter knowing what he knows he would wAnt the surgery for his daughter. We really didn't think we wanted a second opinion but after he shared that with us we were on board with seeing what Boston would say.

Also the surgeon here agreed to meet with a panel of physicians here to see what they all think. They will meet next Thursday. So we wait!!!

Lyla's cardiologist thought she should stay the night since her lung pressures were so low.

About midnight her vitals were not so hot. Then at 1am they were not good at all. The rapid response team was called. Lyla was pretty sick. Her fever was 104. They did a chest X-ray and confirmed an infection in her lungs.

Friday she was not herself at all. She slept pretty much all day. Around 3pm she woke up and looked so much better. She was up for about an hour and then went back to sleep until Saturday morning. Now she is absolutely much better. Almost back to her normal little self. Except for her oxygen levels. When we try and take her off the oxygen her sats drop to the 60's. but really otherwise she is great!!!! She did test positive for rhino virus. But they suspect a pneumonia too.

So that's where we are now. Just praying for better breathing!!!!

Thank you so much for all the prayers!!!!

Here are some pictures from the last few days!!!




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Lyla

Lyla's heart surgery was rescheduled for today. We arrived yesterday for her Pre-surgery testing. She did great!!!

We spent the night in a hotel. Courtesy of the hospital and woke up nice an early for the big day.

The surgeon came to talk to us. He said the surgery was too risky today due to her poor O2 levels. We were shocked. We did not see this coming. He actually said " I don't want you to have to plan a funeral next week"! So that statement caught our attention and we were completely on board with his recommendations. He said he wanted her to have another cardiac cath. He needed to see if the Viagara and oxygen has helped her pulmonary hypertension.

So Lyla is in the cath lab right now having her procedure.

It is possible that she could have surgery tomorrow if her cath results are good. Or it just might be that surgery ever is too risky for our little princess!!!

We are good either way!! We will not question the surgeon!!! We strongly believe that two cancellations might just be a sign from God that surgery just isn't the right answer for our precious little love!!!

So that's that for now!!! Thank you so very much for all the prayers!!!! God hears you and he is making his presence known and we couldn't be more grateful!!!!




The nurse thought it would be helpful to introduce the gas mask to Lyla so she wouldn't be scared. Ha!!! She is so crazy!! She took the mask and chewed on it for about twenty minutes.




This was right before we thought she was going back for surgery. I just love this picture!!!!



She was brushing her teeth before we left for the hospital this morning. Good Oral hygiene is very important to Lyla!!!



This was taken after her testing yesterday. She was ready to leave and enjoy the beautiful weather outside.

Again thank you so much for the prayers!!!! If you would please keep them coming so the Surgeons can make the best possible decision for our beautiful amazing daughter!!!!

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Surgery Date Change, Froggy and the Thinner Side

Lyla's cardiac surgeon called.  They had to move her surgery to Friday.  Just two days.  We can handle that!!!

Sarah & Rachel will be here Monday!!!  I am so excited!!!


Lyla's PICC line apparently had a huge influence on Sara.  The day Lyla's came out, sweet froggy had one put in.  Poor Froggy :(   As Molly C. pointed out, Dr. Sara must of given a pretty heavy sedative according to those eyes.  Sara even put a sock on to cover the site just like we did for Lyla.

My sweet beautiful girls waiting for the bus this morning!!!  

Most of you have noticed Lyla has put on some weight.  The ENT said this to me last week:

"I usually tell my parents of children with Down Syndrome to keep them on the thinner side for sleep apnea reasons"

HA HA HA HA HA HA HA

"The thinner side" just cracks me right up!!!!!!!

I Love It!!!!!!!!

Waiting for the bus

I so appreciate every moment

No More PICC line!!!!

Woo Hoo!!!!!

Today was the first day in 8 weeks that the Doctor looked in Lyla's ears and NO INFECTION!!!!  So so so so so GRATEFUL!!!!!!!  THANK GOD!!!!!!!!!!

So the PICC line came out today!!!!  WOO HOO!!!!!!!

Lyla's heart surgery is ON for May 15!!!!  That's in 1 week!!!  WOW!!!!!

WE ARE READY!!!!  

Mabel!!!!!!!!!!!

Oh My Goodness!!!!  Did you see that Mabel's new family has a sponsor page on Reece's Rainbow!!!!

GO HERE

Please donate if you can

Sweet Mabel has waited so so so so so LONG

and

It's Finally HER TURN

GOD IS GOOD

It's Your Turn Sweet Girl!!!!!