Boo at the Zoo

My little Pirate!

We met some great heart friends at Boo at the Zoo today for some fun.  Mended Little Hearts coordinated this event and it was wonderful.  The weather could not have been any better.  For Halloween, it was over 70 degrees...very unusual for Ohio.  Especially since the weather in the past couple of weeks has been COLD. 

The boys as super heroes...hanging at the zoo.

I didn't post pictures of the other families that joined us because I didn't get their permission, but we had a good turnout and I know everyone enjoyed themselves.

2nd Annual Congenital Heart Walk

I cannot believe how many people joined us this year.  We had almost 800 people at the Walk and raised almost $70,000.  It exceeded every single expectation I ever imagined possible.  The support that was showed and the people that came gave me so much hope for our community.  It was great meeting so many heart families, survivors, and angel parents.  I learned about many different heart defects and I shed tears for the little ones that have lost their battle (as well as their families that live with that loss every second of every day).

The outpouring we had this year has me looking forward to next year's Walk and all the excitement that comes with being involved in something so amazing.

First Day of Preschool

Hope started her first day of preschool today.  Another day of endless crying for mommy.  I know that most kids do have to go to school and I know Hope needs the social interaction and the in-depth learning she will get, but it is so hard.  She is my baby and the last one to start school.  I think knowing that today is the last first day of school for my kids was hard for me to grasp. 

Hope loved her first day of school and I am so relieved.  I will be driving her every day because the bus scares me...she is really little.  When she was dropped off this morning, they were waiting for her.  The assistant came and got her out of the Tahoe and then I sat and watched her walk into the school.  I promptly drove to the parking lot and cried my eyes out. 

I pray this school year will help her and that the illness, bugs, germs, etc. stay away from all of us.  The potential for scary illnesses is one of the biggest worries I have about her going to school.  My boys are in school and I know they bring stuff home, but it is different when she is in direct contact with other kids and their bugs.

Happy 3rd Birthday

Hope turned 3 today.  The excitement of this birthday is tangible.  It is a birthday that we know means she is getting ready to do 'big girl' stuff.  She is starting preschool, she will use the bathroom, she is starting to play games on the iPhone, she is gaining weight...so much.  She is amazing and the realization of how much she has gone through in 3 years amazes me more all the time.

Now for some cute pictures from her birthday:

Hope's PawPaw (my father-in-law) rented a pony for Hope's birthday.  This picture shows a scared little girl, but it didn't take long to warm her up.

Once she realized how much fun she was having, she wouldn't get off until the pony had to leave.  Now, she asks for one all the time...I keep telling her to ask her PawPaw (although I do worry that she may get one for Christmas from him).

Hope's Last Day at Windfall

Here in Medina, Ohio we have an excellent program called Help Me Grow.  Hope has been enrolled since she was 6 months old.  She received physical and speech therapy at home for a long time.  We would have continued with her therapy at home, but it was suggested that she would be a good fit for their Early Intervention Program.  She started going to class on June 12th of this year and has done amazing.  All of her skills have improved, but especially her social skills.  She is willing to talk to people now...other than me.  She says 'hi' to strangers and smiles a whole lot more.  It has been the best experience I could have ever imagined.

Sadly, yesterday was her last day.  She can only attend until she is three years old.  She will turn three next Friday.  I will be in California all week and I really wanted to be there on her last day.  I needed to say 'goodbye' to everyone that has done so much for Hope and for my family.  They taught her so much and provided so much help for our family to help Hope develop.  They scheduled her IEP and attended with me and made sure Hope would get the services she needs in preschool.  They have been my champions, friends, teachers, and caregivers for almost three years.  It was bittersweet seeing everyone and knowing that Hope would not be seeing them every week.

Here are some pictures of the wonderful, amazing, talented, and caring people that have done so much:

Kathy Duncan is Hope's physical therapist and has been with us since Hope was 6 months old.  She is the best therapist and pushed Hope to do things I was scared to let her do...like steps.  She also has two puppies from when our Labradoodle and Golden Retriever had babies.  She will always hold a very special place in our hearts.

John Lucic is the Occupational Therapist.  He has seen Hope since she was 6 months old as well.  He always brought good news when he came for evaluations.  Even though we didn't see him every week...Hope has always had good fine motor skills...John always had good news and always had great suggestions to help keep her developing.  He is also one of the genuinely nicest people.

We seemed to go through quite a few speech therapists.  Connie Hartman proved to be the best.  She could get Hope to talk more than anyone and the difference is remarkable.  Hope speaks in sentences and sings songs she learned in school.  I can't begin to explain how much she grew developmentally in such a short period of time.

Jennifer Howard is fantastic and such a caring teacher.  She is the Early Intervention teacher and works wonders.  I know she loves all the kids in her class and cares for their families as well.  She is the teacher that I want Hope to have every year in school.

There are no words for the way Hope and I feel about Cristal.  She is the assistant in class and is the most loving, caring, wonderful person.  She is the person that you know cares about your child when they are in school.  She genuinely loved Hope and I know that Hope feels the same way about her.  She is going to missed by all of us.

Dr. Jan is the Director of Early Intervention and one of the nicest women you could meet.  I am certain she is swamped with work, but she still takes the time to come to the classes and meet with the students.  She definitely loves her job and we are so glad Hope was accepted into the EI program.

Yesterday was bittersweet for so many reasons.  One of the nicest visits we had was with Dr. LaForme.  He is the Superintendent of the Board of Developmental Disabilities.  I wrote personal letters to all of Hope's teachers and I also wrote one to Dr. LaForme.  I wanted him to know exactly how I feel about the program and how much everyone has done for our family.  I wanted to thank him for providing the services and hiring the best staff ever to provide the services.  Dr. Jan took Hope and I to meet Dr. LaForme.  Hope delivered the letter personally and I know it had to convince him how much we have benefited from every person in his organization.  I am proud to say that I got an email letting me know that he personally thanked everyone that I mentioned in the letter...what a great guy to work for!

I know this post has been long and I haven't mentioned Hope's weight.  I will save all that for another post.  This one is totally dedicated to the WONDERFUL people from Help Me Grow, Early Intervention, and Medina County Board of Developmental Disabilities!

25 Pounds 3.89 Ounces

YIPPPEE!!!  This is an awesome weight and what I wanted Hope to be at by her 3rd birthday.  She and I get an early birthday present.  I really was nervous about this weight gain because after her cath, she has decided she doesn't want her drink stuff too much and wants to have a lot of tiny meals throughout the day.  I know her calorie count has decreased, but at least she is gaining.

For the kilo people out there, Hope is 11.45 kilos.  I used to be strictly pounds and ounces, but have learned kilos with Hope.  It's like a new language that I have learned in the past few years.  Combine that with all the heart and kidney stuff I have learned...I am really getting my continuing education credits.

There really isn't too much new to report.  Hope had her cath and did amazing.  She doesn't have to be back for any appointments until September.  It is nice to not worry about anything for a little while.

Cath and Other Stuff

The day before we went to the hospital.

I know...I have been a horrible blogger.  I did really good keeping up with facebook while we were in the hospital, but I want to catch everyone up on what has been going on in our lives.

After they did the IV...just hanging out in her big bed.

First...we are home and all went better than I expected.  We did spend Monday night in the hospital getting IV fluids.  It really wasn't too bad but the lack of sleep was hard for me.  Hope and daddy managed to get some sleep that night, but I am a light sleeper and really need a real bed to sleep.  We took Hope down to the new cath lab, which is really nice, around 9am.  She got some Versed through her IV and was so cute for everyone...laughing and smiling and entertaining all the doctors.  I wish I had remembered my video camera because it was really super cute. 

After the cath...laying still for 6 hours.  She was very puffy from all the fluids, but peed it all out before we left.

We had a pre-cath huddle with Dr. Prieto, anesthesia, the fellows, and everyone else that was going to be helping with the cath.  Dr. Prieto discussed the hope of getting some arterial access through her femoral artery to check pressures and possibly coil off some collaterals.  Her femoral arteries were occluded thanks to another hospital leaving IVs in there too long (ughhh).  Anyway...they were able to get access and that was great news.  She did dilate (balloon) her left pulmonary artery to 4 1/2 mm.  It is still very small, but it is now the same at all parts of the artery.  The whole cath took about 1/2 hour after they got access and I love it!  She was done around 10:30 and in recovery at 11:00.  Of course I pestered Dr. Prieto into trying to get us out and home that night.  Usually when they do an intervention (like the dilation), they like to have the little ones stay the night.  We try to get out of the hospital as soon as possible...that is where all the sick people are and the longer you are there...the better the chance of you or your little one catching something really icky.  I also know that Hope recovers MUCH better at home.  So, when we got back to our penthouse suite (which we really did get a nice room after spending the night in the pod) we put on the board that we were working on getting discharged. 

Packed and ready to go home.  She is still a little puffy in this picture, but she was so ready to go home.

The nurse we had was pretty good, but I really pushed to make sure we had an echo done, any bloodwork that was needed, all paperwork, and meetings with Dr. Prieto and Dr. Kwon.  Hope had to lay flat for 6 hours, so we knew the best we could hope for was 6pm.  Although, that really wasn't anticipated because she had to walk around, get all her bandages changed, her IV taken out, and eat and drink something.  Amazingly, we were outta there at 8pm.  It was wonderful being able to go home and sleep and Hope was so excited to see GiGi (my mom), Destiny, Jerry and Paul.  She was laughing and smiling as soon as pulled in the driveway.

Yay...chicken nuggets when we got home.  Yes...the stickers were left on for the night.  We didn't feel the need to take them off and put her in any more pain that night.  She did get her appetite (what little appetite she has) back when we got home!

The Cath Plan

I took Hope on Monday, June 18th to get her blood drawn.  We went to Medina Hospital rather than all the way downtown...which was great.  I pumped her full of water all morning to make the blood draw easier.  We got a really good phlebotomist at the hospital and it only took her one stick to get the blood flowing.  I was so relieved because we love John (the phlebotomist downtown) and I honestly didn't think anyone else would be as good.  Hope did cry the minute the lady started wiping the alcohol and all through the blood draw, but she didn't throw up at all...this is good news for Hope.

We waited and waited to get a plan.  Finally on Friday I decided to call.  It seems Dr. Prieto was on vacation all week.  Ughh...I worried that we wouldn't have a plan until Monday.  I hate not having a plan.  Karen...one of the great nurses...called back and said she talked to Dr. Kwon (Hope's nephrologist...kidney doctor) and he wanted her admitted on Monday for fluids.  I was kind of disappointed, but I was also so happy because her blood work came back perfect.  He is only admitting her because her kidneys' are doing really well and he wants to make sure nothing they do in the cath lab (the contrast dye is harsh on the kidneys) affect her kidney function.  So...we head in on Monday afternoon, get an IV and start fluids to make sure she is well hydrated.

Hope will be having a diagnostic cath as well as some intervention.  She will be having her left pulmonary artery ballooned because it is narrowing again.  The narrowing is causing her to grow collateral vessels to make sure her body receives enough blood.  They will probably coil off the collateral vessels in the cath lab.  She has never had that done, so I am a little nervous.  Caths worry me a lot...she will be put to sleep and intubated and that always carries risk.  

It was like the 1st day of school

Yesterday Hope started school two days a week.  She goes to the achievement center to a classroom instead of having her physical and speech therapy at home.  Both of her therapists thought it would be a good idea to get her in a classroom and help her develop some social skills while getting the therapies she needs.  It did take some convincing on their part to get me to agree because I really liked the convenience of having her therapy done at home.  I was also worried about how she would do because she is not real great when I take her to the sitter or even have a relative babysit her.

She did great!  No crying when I left, but she was really happy to see me when I picked her up.  She talked like crazy to the speech therapist...that is amazing because she usually only talks to me or close family.  She even ate snacks with the group and I am thrilled about that!  I am hoping this will open her up a little and give her some confidence in talking and around other kids.

11.2 - Almost There

Dora is her favorite!

I really thought when I saw the scale move past the 11 kilo mark that surely Hope hit 25 pounds.  I can't do the math...I have to actually check a handy website to get the conversion.  It is 24 pounds 11 ounces...almost 25 pounds!  Woohoo...I am so excited.  Even though I really wanted it to be 25 pounds, it is so wonderful to see her move up in kilos.  She is actually eating a lot more food and drinking less of her pediasure.  I can't wait until she doesn't have to drink her high-calorie pedisure anymore.  I don't know when that will happen, but it is exciting to think about.

A few other updates.  Hope will be starting preschool in the fall.  She is on an IEP for Other Health Issues and will be getting additional physical therapy and speech therapy support.  I was actually kind of surprised in the IEP meeting because I really thought the speech therapist would want to spend more time with her.  She talks, but mainly to me and close family.  I guess she opened up to the speech therapist when they were doing her evaluation.  The speech therapist actually thinks that she is right at age level with her speech.  Now, I was more surprised with the physical therapist, although I don't know why.  I guess I just don't think about her physical limitations that often.  She walks slow, but she does have really short legs.  She doesn't run much, but I have never worried about that because I am always happy when she isn't burning calories (see how crazy my life can be).  Based on the physical therapist evaluation, she will be spending a lot of time with her.  They will be getting a pulse ox machine and will not push her too hard. 

Finally...the last update.  We will be walking again this year at the Congenital Heart Walk.  It will be October 6th at Wade Oval.  We would love any friends and/or family to come and join us.  You can register and join our team (Hope's Heart Heroes) at the following website:

http://congenitalheartwalk.kintera.org/NorthernOhio

 

The Best 7 Years

My husband and I have been married for 7 years today.  It has been the best 7 years of my life.  Jerry and I met about 10 years ago through a mutual friend.  I was separated at the time and all of us just hung out as friends.  I had feelings for him, but it was just the wrong time.  I was traveling a lot for work and he was also going through some personal stuff in his life.  Fast forward about a year.  I am sitting in my hotel room in St. Louis catching up on work from a project.  I get a phone call from a number I didn't know.  It was Jerry.  He got my number from a friend of mine and called out of the blue to ask me to go out with him when I got home on the weekend.  The timing was perfect.  I was free, he was free, we were both interested.  It was amazing...until...I got an assignment in Denmark.  Needless to say, we were in love and knew it was a great opportunity for me at work.  I spent 14 months working in Denmark and traveling home for a week every 6 weeks.  Jerry flew for the first time...to meet me in Rome for a long weekend.  He came for a week to tour around Denmark, Germany, and Sweden.  It was great and it was really hard.  We fell further in love, but it was hard to be apart so much.  When my project ended, we decided to move in together.  I continued to travel a lot and we would see each other on weekends and when Jerry would fly out to see me.  Ahhh...I do miss traveling sometimes.  Anyway, we found out I was pregnant in March, 2005 and decided to get hitched.  We had a beautiful ceremony in my mom's backyard.  It was perfect.  We have been through a lot in the last 7 years, but we have grown stronger and love each other more today than yesterday.  Jerry is my rock and I can count on him for anything.

Here are some more great pictures from our wedding...we both want to get back those figures we had back then:

Professional pictures...we left the reception for a while to get these done.

Destiny looks so young in this picture.  She wore the same dress as me and it was beautiful!

Our families...isn't my mom's yard perfect for a wedding!

The wedding party...my sister, Marilyn and Jerry's brother, Jerome

My brother giving me away!

Our beautiful cake...made by my beautiful sister, Marilyn

10.90 - 24 POUNDS!!!

We are finally on a really good weight gain track and I am loving every minute of it.  Hope is starting to eat a little more every day and we have gotten her Pedisure down a little, so she is not only getting her calories from liquid. 

I can't believe she is 24 pounds.  She is right on track for my personal goal to get her to 25 pounds by her 3rd birthday.  I am just praying that she doesn't lose too much weight during her cath and recovery.

Not much else to report.  There are a lot of heart families that are going through a lot of stuff right now and I know I would leave out someone, so I am asking for prayers for all of them right now.

Phenomenal Woman of the Year

My mom is very special to me and a lot of other people.  Yesterday she was awarded the Phenomenal Woman of the Year Award from Husani Management for her contributions to community...especially for special education children.  My mom has taught special education for 30 years and is retiring this year.  Her special day was spent with several hundred other people watching the kids from the School of the Arts dancing, playing music, a wonderful fashion show, and ending with an excerpt from the off-broadway play From Breast Cancer to Broadway...Birthing Hope.  The day was excellent and it was great seeing my mom honored for everything she has done.  She deserves the award and so much more!

Catching up

It has been such a long time since my last post.  We have had a lot going on lately and I have just not felt much like updating.  Most of this update will be pictures, but I also wanted to share the excellent weight gain Hope had today.  When we were downtown at the Clinic, Hope weighed 10.40 kilos...this is 22 pounds 14.8 ounces...so close to 23 pounds.  I was hoping she would be at 23 pounds when we went down there, but oh well...at least she is gaining.  Today, the little princess is up to 10.70 kilos (at her scale in Medina).  She finally hit the 23 pound mark and actually gained almost a whole pound.  She is well on her way to my goal of getting her to 25 pounds by her third birthday.  I just pray that she doesn't lose a ton of weight when she is in for her cath.  She hates eating at home and I am sure it will be worse in the hospital.

OK...here come the pictures!

My girls on Easter

Gigi (my mom) reading to all the kids on Easter

Mama (Jerry's mom) and the girls on Easter (yes, Hope had two Easter dresses)

Hunting for Easter eggs at Jerome's house

Our first bowling trip...we all had a blast!

We had a great day at the Cleveland Aquarium

The girls had a great time at the Aquarium!

On the Rapid...our first trip on the train.

This was on the Rapid...before it got packed with people!

We had a great spring break and it was even better because we had Destiny with us for the whole week.  It is really hard having her so far away (she moved to Kentucky with her mom) and only seeing her on breaks. 

We have a plan

I got a call from Dr. Prieto with a plan for the high BUN.  We will be slowly weaning Hope from her Enalpril over the next week.  Enalpril is taken by a lot of heart babies to help their heart function.  Hope's heart is functioning really well and we have not increased her Enalpril dose since she started taking it.  Her doctor feels that it probably isn't helping with her function because of the really low dose that she is on.  We are also going to try and decrease the amount of protein she eats and increase the fat...again.  This is actually really hard to do because Hope loves hot dogs, chicken, and fish.  We are going to have to get creative and start adding more oil and fatty stuff to her diet.  She hardly eats as it is, so this is going to make meal time even harder than it already is...pray for my patience and sanity.

We will be going for blood work and to see the nephrologist in about a month to check her BUN and Creatnine again.  We really want/need both numbers to go down.  Otherwise, it will be a really good indicator that her kidneys are not functioning very well.  This will not be good news.  If they are still high, we will be going in the day before her cath for IV hydration.  The contrast they use in the cath lab can hurt the kidney's so they want to make sure that if the function is decreasing, we try to regulate that by heading in a day early and making sure she is really hydrated.  I am hoping it does not come to this, but we will do it to make sure she has a safe cath.

Easter is coming up quickly and we are all really excited.  Destiny gets to come and spend Easter with us...she moved to Kentucky with her mom and we have missed her so much.  Everyone is really excited to see her and have her spend Easter with the family.  My brother's birthday is Easter Sunday, so we will have lots to celebrate on Sunday.  We wish you all the Happiest Easter!

The Good, The Bad, and The Unknown

The Good

Hope was awesome at all of her appointments today.  I mean...better than she has ever been.  She didn't throw up on anyone, she hardly cried at all, and she laid still for the entire 45 minute echo.  I told the echo tech to keep taking whatever pictures she wanted because Hope was being so good.  This is the same little girl that is usually heard screaming all the way into the waiting room.  She has thrown up on countless people more times than I can count.  Her weight is really good (she is finally on the charts scoring a 1.07%...WOOHOO).  Her sats were all over the place today.  When she started they were in the 70s (too low).  Then we moved the little thingy (you all know what I mean) to her hand and her sats went to 90 (too high).  Finally, when she was sleeping in the waiting room, they were just right at 84.  Today...AMAZING!!!

The Bad

OK...not necessarily bad because it was expected.  Hope will be having a cath this summer.  She has not been in the hospital for almost 2 years.  Actually...on May 12th it will be two years.  That is the last time she spent the night in the hospital and that was her last cath where they ballooned open her left pulmonary artery.  The good news with the echo pictures they took today is that they got good pictures of her artery and it looks like it is not growing like they want it to.  It also appears that she has some collaterals growing from her aorta and circumventing the pulmonary artery.  This causes her sats to stay good, but it also doesn't help the pulmonary artery grow because the blood is not all going through the pulmonary artery, but through these collaterals.  So...we head to the cath lab sometime this summer (no hurry and we will definitely be bumped for any emergent case).  Dr. Prieto will balloon her pulmonary artery and may put in a stent.  She will also coil off some of the collaterals.  I am guessing her sats will be lower after the cath until the pulmonary artery gets back into the groove of pumping blood like it is supposed to (this is my thought and I forgot to ask Dr. Prieto...so I have no idea if it is true). 

The Unknown

I am not joking...I know absolutely nothing about kidney disease, how the kidney's function, or what it really means for Hope.  Her BUN today was 42...really super, duper high.  I don't really know what this means or if it is bad, but typically anything that is twice what the normal is bad.  I haven't heard from the nephrologist, but I am expecting a call tomorrow.  I really hope it was a fluke and doesn't really mean anything too bad.  Her createnine  was normal and I think that is good.  It is the other number they look at to determine how bad her kidney is functioning.  I will update more when I hear something, but prayers are always welcome and appreciated.

No Weight Check This Week

We are not heading to the doctors today to get Hope's weight checked.  She has all day appointments on the 2nd and they will be able to check her weight there.  I know she has gained and I am pretty sure she is almost 23 pounds (at least by the bathroom scale that I avoid).  On the 2nd she will start her day at an appointment with Dr. Kwan...her Nephrologist.  She seems to be peeing just fine, so I am hoping that means her kidneys are doing what they are supposed to be doing.  He likes to see us every 3-6 months and we are almost to the 6 month mark with Nephrology and Cardiology.  After that appointment we will head to Au Bon Pain for a nice lunch.  If anyone will be at the Cleveland Clinic that day...let me know.  We would love to have lunch, bring you lunch or a cup of coffee, or just stop by and say 'hi'.  After lunch we head to Cardiology where Hope will probably throw up everything she ate for lunch...she just likes them that much.  We are hoping for a great echo and a fast and easy appointment.  We do have to meet with her dietitian, so we will see what she has to say.  I think she will be pleased with how far we have come...I know I am.

I am pretty much thinking we will have a talk about a cath.  I don't know why I am thinking it because her last appointments have been great.  It just seems like it has been a while since we have had anything done and a cath seems like something that may happen.  I just hope her pulmonary arteries have been growing with her...maybe we could avoid the cath if they have been growing well.  I am kind of nervous about this appointment and I really can't explain why or where the nerves are coming from.  I just know they are there.