Thursday, June 26, 2014

3 Months on the List

Today marks 3 months that Hope has been listed as a 1A for a new heart.  The days keep getting longer as we continue to wait.  The summer is passing and we are spending most days inside...which is hard for the whole family.  The boys are hanging out with their grandmas, aunts, and cousins (and their big sister too) and are having a great time. They have been enjoying their summer and have been spending time outside playing all the time. I am so happy they are able to enjoy the summer...even though I wish I could be enjoying it with them.  We have many years to enjoy time together and giving up the summer is a small price to pay...especially knowing that someone else will not have time to spend with their little one.

Hope had her PICC line changed the other day and another NG tube placed.  Both had been in about 3 months, so it is pretty good they both lasted that long.  When they brought her up to the recovery room, she threw up her brand new NG tube...which sucked.  It was 6:45 and her day nurse had to stay after and put in a new one ( are an amazing nurse!)

My thoughts and prayers continue to be with her donor family.  I worry about them all the time.  We have lived with a heart defect and the knowledge that we might outlive our beautiful daughter.  I am guessing her donor family will not have lived with this and it will be a total shock.

Thank you all for thinking about our family and keeping us in your prayers.  They mean the world to us.

Tuesday, June 24, 2014

PICC Line Change and NG Change Too

Hope's PICC line decided to start leaking last night, so we got a dressing change at 6am this morning.  Definitely not something Hope or I wanted to wake up to this monring.  We had to move her Milrinone to a peripheral IV (which meant placement at 7am).  It has been a long morning and I am guessing the afternoon will be long as well.  She is now NPO (cannot eat or drink) until after her new PICC line is placed...which is scheduled around 1pm.  My little princess is taking this in stride and I am so proud of her.  Her dressing change yesterday and again this morning were not as traumatic as normal, so I am happy about that and hope it continues when she gets her new PICC line.  I am also having them change out her NG tube and put it in the other nostril while she is getting her new PICC line.  It clogged yesterday and I worry that it has been in so long it will just continue to a change will be good...especially when she is sedated and they can take an x-ray to make sure it is placed correctly.

I know this procedure is not complicated, but please keep Hope in your prayers for an easy procedure, hopefully using the same vein so we don't have to potentially blow out a different vein, and for an easy recovery this afternoon.  Please also pray for peace with her as she cannot have anything to eat or drink and I know she will be begging for something to drink soon.

Sunday, June 15, 2014

Happy Father's Day

Happy Father's Day to the best husband and father!  Jerry is an amazing husband who goes out of his way to make sure our family has everything we need.  He works hard and long hours and rarely complains about his job.  He loves us all with his whole heart and we know we come first in his life.

Being a dad is more than a day
More than a thank-you or annual display
Your laughter and caring, adventure and humor
So giving, befitting the honor of father

I couldn’t have picked a better man
To travel through life with our crazy clan
You’re my husband, my hero, and may I suggest
A wonderful father — the best of the best!

Tuesday, June 10, 2014

Mommy's Birthday

I turn 45 years old today.  I am an older mommy and didn't start having kids until after I got my career off the ground and spent my 20s traveling and having a great time with friends.  I am so glad I waited, but I must say that if I had started earlier, I would probably have 12 kids.  I love my kids and even though they drive me crazy at times, I would still like to have had more.

Through my 45 years, there are few that have been as difficult as this year.  It has always been in the back of my mind that Hope could need a new heart...I just hadn't planned for it to be this soon.  I always anticipated her needing one in her 20s or 30s.  I am happy she is on the list and even though the waiting is hard, I wouldn't trade it for anything.

I am hoping my 45th year is a year of change.  I am going to stop smoking and Jerry and I have both come to agreement that we need to quit now and not wait any longer.  I am hoping it will not be as bad as I am expecting...I have a lot of tools that will hopefully help me become and remain successful.

Thursday, June 5, 2014

3 Months in the Hospital

Hope and Dr. Boyle - he does her hair every day now!
Today marks 3 months that Hope has been in the hospital.  She has been on the list for 71 days...that seems a lot longer when I actually type it out.  This past couple of weeks have been really different and I think we are just getting impatient with the waiting.  I hate that we feel that way because we know that in order for Hope to receive a heart someone else will need to say goodbye to their little one.  Spending a lot of time in the hospital can try the patience of anyone and we have found ourselves getting edgy this week with each other and family.  This hospital stay has shown us how wonderful family and friends can be and we thank everyone that has come up and visited and helped us these last few months. Sadly, it has also shown us that even though we feel and live the seriousness of everything that is happening, everyone around us has their own issues and time that they need to spend that do not include us.  Our feelings have been hurt a lot and we need to figure out how to get through this and not hold our current feelings toward anyone once we get past the transplant.  It is hard, but we will get through and we will continue to lean on people that go out of their way to make sure we have everything we need...while sacrificing so much of their lives and the lives with their families and jobs.  The support we have received from family, friends, and complete strangers is overwhelming so I hope I have not taken that away from anyone...we appreciate everything everyone has done for our family.  We could NOT do this alone.

Please keep us in your prayers for peace, patience and as Hope is now telling everyone when they ask what they can get for her "a brand new heart".