Showing posts with label 9 - 12 Months. Show all posts
Showing posts with label 9 - 12 Months. Show all posts

May 18, 2015

One Year Later

Claire's a year old!!
It's amazing that it has already been a year since her birth.

On Wednesday, May 13th, Claire celebrated her 1 year birthday. The nurses supplied her many presents and balloons; she rode in a wagon with these down to the cafeteria and playground for the first time in her life. Later that day, she was discharged from the hospital with a scheduled appointment at 8 am the next day for hemodialysis. From now until the next step, she will have dialysis every morning (Monday - Saturday) at 8 am at the Nephrology Clinic.

It's been busy since Claire was discharged. Claire has been adjusting to a new schedule on hemodialysis. She also has a multitude of new medicines and routines that both she and parents must learn. In addition to all of this, on Saturday, May 16th, the family invited over friends to celebrate Claire's 1st birthday.

It's been a long trip, but a fun one. It makes this momma proud that this family has reached a year; that we have all grown so much. Needless to say, we're all curious as to what this next year holds for the tiny Hughes family.

Pictures:

May 3, 2015
Still in the hospital . . .






May 7, 2015




May 8, 2015




May 9, 2015




May 12, 2015
On the eve of her birth. . .





May 13, 2015
It's a miracle! She's 1 year old!




May 14, 2015
Celebrating Gran's birthday at Logan's






May 16, 2015
Celebrating her birth at home





Instead of cake (due to diet issues, etc.), Claire had an applesauce "cake." She loved it. It was her first time to really play with food and to discover how to eat it herself. 

















The family would like to thank everyone that has supported them throughout this first year and for those who have prayed for this darling little child. 

The love and concern are much appreciated.

Thank you.

May 1, 2015

Surgery Success

Claire's surgery went really well. She is now out of the ICU and into a room. Her hemodialysis treatments have been going well and now we are just working to control her blood pressure. 



April 26, 2015

Small Update

Just a quick check-in!

Claire will be having surgery tomorrow (Monday). The exact time is unknown.
The surgery is to place a hemodialysis catheter into her neck/chest area since PD failed. This is a somewhat more risky surgery as they do not make these catheters for children.
Until then, Claire is being sedated and will have to be intubated until 24 hours post-surgery, which she most definitely doesn't like. She is ready to play, but can't until she's fully recovered.

Thank you all for your prayers and love.

Another update will be provided post-surgery.


April 20, 2015

Late to the party

Well, things have definitely been happening in the Hughes family.

Claire has been extubated and re-intubated. After the second round of hemodialysis, Claire began to have troubles stabilizing her heart rate. It would drop low (50s) or shoot high (180s). That is when she was re-intubated and given an echo to check her heart. It was found to be dilated, but not permanently damaged. 

Her heart has been monitored this last week and is slowly repairing itself. Also this past week the second attempt at dialysis was a failure so she has been doing CVVH, a slower form of hemodialysis, while intubated to give her heart a rest. She hates the tube and is often awake and trying to grab it. They've had to keep her wrapped tight or else she'll wiggle her way to the tube- even with her feet...

As of today, it is looking like she might be rid of the tube and pd, peritoneal dialysis, will be given a second try tomorrow. If it works, then they'll do a few more rounds before she is discharged. If it doesn't, we'll be looking at another surgery to put in a hemodialysis shunt. 

Oh! And did we mention? A week ago today she turned 11 months old!

April 8, 2015






April 9, 2015







April 10, 2015
On her way to surgery to hopefully fix her PD catheter. 



April 12, 2015
Post-surgery and now 11 months!



April 17, 2015
After her heart problem is discovered and she has been re-intubated. 



April 18, 2015
She got a little too dry thanks to CVVH, but she was sleeping well.

April 19, 2015