Thursday, December 31, 2009

9 Pounds

WOW...I can't believe how far Hope has come in such a short amount of time.  When we brought her home from the hospital on October 28th, she weighed a little over 6 pounds...not much more than when she was born.  In 2 months she has gained almost 3 pounds and she has grown in so many other ways.  She is smiling like crazy now, she is grabbing for things, she is following us with her eyes, she is trying to roll over...she can go from her back to her side real well.  So many little things everyday that give us so much joy and happiness that it is hard to describe.  The boys love her so much and they can keep her entertained just by smiling at her.  Jerry even brings her his toys and tries to get her to play with them.  We are all so blessed!

The boys decided to build a snowman.  We really didn't have all that much snow, so they improvised and used a garbage can to create the snowman.  They loved it and he is quite the snowman.

Monday, December 28, 2009

Very Merry Christmas

I hope everyone had a wonderful Christmas this year.  We sure did!  Our scare earlier this week was nothing and we just spent a couple hours at the cardiologists having her confirm that Hope looked fine.  It was a wonderful appointment and put our minds at ease for the holidays.

Our whole family had a wonderful weekend with family for Christmas.  Santa stopped by on Christmas eve because he knew we would not be able to visit him and get pictures taken.  We even took Hope to Jerry's mom and dad's house for Christmas eve.  It was great being with family...Hope was her normal cranky self because it was her cranky time of the day.  The boys were thrilled to spend time with their cousins opening presents and playing with all their new toys.  Christmas morning was wonderful.  My mom came over to watch the boys open their presents and help cook.  It was perfect because Jerry is finally old enough to understand Santa and was really excited to see what Santa left for him.  The rest of the family came over all day and it was great having everyone with us for Christmas.

We are so thankful this year and God has provided so much for us this year.  It has been hard, but it has also been truly rewarding.  We want to thank everyone for all the help, prayers, and support this past year.  I know we are going to rely on everyone again next year.

Love, health, and happiness to everyone!

Monday, December 21, 2009

Christmas Pictures and Nerves

First things first...Christmas pictures.  I am not sending cards this year because I just don't have time.  I am posting them here for everyone to see and hopefully I will have more time next year. for my nerves.  The physical therapist came today and noticed that Hope is looking 'dusky'.  I wasn't too concerned because she didn't seem concerned and the home health nurse didn't seem concerned.  Now, though I am concerned and I contacted the nurses and am taking Hope to see the on-call cardiologist tomorrow.  I am so scared that they are going to find something wrong  and that we will need to spend Christmas at the hospital.  I am crying my heart  out as I write this because I am looking forward to Christmas this year with Hope at home and the boys being old enough to really enjoy it.  I don't want to think about tomorrow, but I can't seem to think about anything else. I am so worried that something may be wrong with Hope and I am also worried about not having a wonderful Christmas with my boys.  They have been through so much this year and I wanted them to be able to really enjoy Christmas.

Please say an extra prayer for Hope today and tomorrow morning.  Please pray that I am worrying for nothing and that she is fine.  All thoughts and prayers are greatly appreciated.

Monday, December 14, 2009

3 Months

Hope is 3 months today!  What a wonderful feeling and we are so thrilled with how well she is doing at home.  Christmas is almost here and Hope is the best Christmas present we could ever receive.  I hate thinking back to all the bad news we received, both before and after she was born, but it is hard not to look back and know how blessed we are.  God has been great to our family.

Hope has been reaching her milestones which is great.  Although I really like her physical therapist and she has taught me so much, I am glad that she is where she is supposed to be for her age.  They are going to stop her visits and that is kind of hard for me because the physical therapist is really hands-on and had taught me a lot about helping Hope develop.  Our feeding problems seem to be a thing of the past (knocking on wood as I type this).  Hope is taking 80-100 mls every 3-4 hours.  She hasn't been throwing up...except when she gets mad or isn't burped enough.  She is gaining pretty good and will probably be 9 pounds by January.  I am really trying to get some pictures of her smiling.  She and I will spend a lot of time smiling at each other and it is so much fun.  She loves to practice smiling and has been showing off to everyone that is willing to sit and smile at her.

We had a nice surprise today...the Palliative Care Team from Akron Children's Hospital came by with some presents for our family.  For anyone that hasn't read back in my blog, Hope was at Akron Children's Hospital after she was born.  The surgeon's did not think that she would be a good candidate for the Norwood because of her kidney problems, so they decided not to do the surgery.  We decided to take Hope to the Cleveland Clinic Children's Hospital and they performed the Norwood for her and the rest is history.  We were treated really well in Akron and I LOVE the Children's Hospital.  Everyone was/is great and we would have loved to have stayed there, but God had other plans for Hope and our family.  We are so happy with our decision to get a second opinion and especially happy with how well Hope is doing.  I am also thankful to everyone in Akron who walked our journey with us from the time I found out until today.

The hardest thing for me to think about now is Hope's next surgery.  It can be scheduled any time now and that makes me so nervous.  I really want to wait as long as possible before she goes back for her next surgery, but I also want to make sure we don't wait too long.  Hope is doing great and I worry every single day that something might happen.  I know the next surgery will hopefully be the last for a couple of years and in that way I am kind of excited to get it done.  I believe that God will show us the best time for her surgery and I have total faith in Him and in the doctors that are caring for Hope.

I hope everyone is enjoying the holiday season.  I know I will update again before Christmas, but until then...hug your kids a little extra, call your friends and family, enjoy the holiday season, and remember the meaning of Christmas...LOVE!

Saturday, December 12, 2009

My Kids

This is a collage of my little ones...all at 2 months old.  If Hope didn't wear pink I am afraid she would look exactly like her brothers.  I am amazed at how much they all look alike when they are young.  Jerry and Paul look so different from each other now.  In the picture...Jerry is on the bottom left and Paul is the bottom right.  They look so much alike and today they look so totally different.  Here they are getting their haircut...thanks to my sister for taking them (otherwise I am afraid they may never have gotten their haircut).

Here is Jerry...gotta love the tail.  I will have it cut when he decides he doesn't want it anymore.

 Here is Paul...of course he has a bump on his head.  I think it has been a constant since he learned to walk.  I didn't want to post the pictures where he was actually getting his haircut because he spent the whole time crying.

They look so different and I thought they would look so much alike when they were babies.  At least this probably means that as Hope gets older, she will look less and less like them and more like the beautiful girl she is.

Thursday, December 10, 2009

Cardiology and Nephrology

Yesterday was appointment day for Hope.  She started with the regular weight, height, pulse ox check.  All looked pretty good there.  Her pulse ox was lower than it has been 82 as opposed to 86, but Dr. Prieto said that is because we increased her Captopril...I guess when you increase that it puts more blood in the body and less to the lungs which means that the pulse ox goes down.  We will continue watching that number to make sure it doesn't go to the 70s and stay there or we will need to decrease the Captopril.  Everything is such a try and see what happens with Hope.  After the regular stuff, Hope got her echo.  She did really good for about 5 minutes.  She was happy and cooing and smiling.  That didn't last too long though and she went to her normal crying fit.  It didn't help that the tech was doing some training and taking longer than normal.  At least she didn't throw up on her this time!  After the echo we met with Dr. Prieto which went really well.  She said everything was looking just like she expected and she was happy to say that we could have an appointment free holiday.  We don't have to go back until the 30th!  She also took her off Pepcid, so we will wait and see how well Hope does without the Pepcid.  I am hoping she will be fine and not have any reflux.  After that was done, the cardiac surgery nurse came in to see Hope.  She had a couple stitches that needed to be trimmed and the nurse decided to go ahead and trim them up.  Of course, Hope decided she didn't like that at all and threw up all over.  I kind of knew we wouldn't get through the whole day without a throwing up session.  She always finds something to irritate her enough to throw up. 

This is a really bad picture of Dr. Prieto.  It is from the Cleveland Clinic website.  I will have to take a picture of her with Hope at our next appointment.  She is a beautiful woman and a great cardiologist.

This is Dr. Kwon and it looks just like him.  I have issues with Nephrology because they are the ones in Akron that basically made the decision that she would not be a good candidate for surgery.  Dr. Kwon understands how I feel and has already told me that it would never come to him for that type of decision.

Once we were done there we had to drive to Shaker and see Dr. Kwon (her Nephrologist).  The high winds knocked out all the power, so we got to sit in a dark waiting room for a while because we were early for the appointment.  The bad part was that without power it was almost impossible to warm up her bottle.  I finally talked to the cafeteria and they were able to find me some hot water.  Anyway...Hope seemed to really like Dr. Kwon.  She smiled and started cooing for him.  His nurse was jealous!  Her kidneys are the same...small and low functioning, but they are working and that is good.  Her blood work was a little better than the last time she had it done which is great.  She will have some more blood work done the next time she is in to see Dr. Prieto.  She will have an ultrasound done when they bring her in for her next surgery.

We are really excited about the holidays, but have not done too much to get ready for them.  We are blessed to have a great family and friends to enjoy the holiday season with.  Without our family and friends, this past year would have been impossible to get through.  Thank you to everyone that has kept our family in your thoughts and prayers and for everyone that has gone out of their way to make our lives easier...and you know who you are!

Tuesday, December 8, 2009

8 Pounds

Can you believe it?  She is 8 pounds today!  I am so very excited with how well Hope has done at home.  She is consistently drinking 3 ounces every 3-4 hours and sometimes she will take almost 4 ounces.  I know...when she gets older she will wish that it took weeks to gain a pound...rather than the 5 minutes it takes me after I eat a big meal.

"Time passes quickly. Many parents say that it seems like yesterday that their children were born. Now those children are grown, perhaps with children of their own. “Where did the years go?” they ask. We cannot call back time that is past, we cannot stop time that now is, and we cannot experience the future in our present state. Time is a gift, a treasure not to be put aside for the future but to be used wisely in the present."

-Thomas S. Monson

Sunday, December 6, 2009

First Bath

I know some people may find this hard to believe, but Hope had her first 'real' bath today.  We have been using these disposable washcloths on her since she came home from the hospital...for a couple reasons.  First is because they told us not to submerse her in water until six weeks after surgery.  That would have been in November, but we didn't have a baby bathtub.  We must have gotten rid of the boys because I couldn't find one anywhere.  The second reason is because the boys hate baths and have since they were we weren't really looking forward to giving Hope a bath.  We thought she would spend the whole time crying and being upset.  Alas...we tried it and she loved it!  She is the only one of my kids that loves a bath.  She could have stayed in there all day.  That has to be something she inherited from me...I could spend hours laying around in the bath.

Thursday, December 3, 2009

So Hard

It is so hard for me when a little baby with HLHS passes away.  Today I learned that Hailey did not make it out of the cath lab yesterday and I have spent most of the day crying for her and her family.  It breaks my heart to think about the pain and heartache her family is going through right now and also in the future.  Christmas is coming so soon and to think that they won't be spending it together breaks my heart.  Hailey was a real fighter in her journey and has earned her angel wings.  Please keep her and her family in your thoughts and prayers.

I found this poem for Hailey's mom and wanted to share it here:

We wanted so much to keep you
We watched you day by day
Until with breaking hearts
We saw you slip away.

God watched you as you suffered,
And knew you had your share.
He gently closed your weary eyes,
And took you in his care.

Your memory is our keepsake,
With that we'll never part.
God has you in His keeping,
We have you in our hearts.

 Nothing can be more beautiful,
than the memories we have of you.
To us you were someone special,
God must have thought so too.