Happy Birthday Daddy-O

Take 2

So after our record time at the ER…total 2 hours door to door!  We were home and ready to enjoy our dinner and visit with our company.  The kids stayed up way to late… I drank one to many glasses of Sangria!  We all had an enjoyable time!

We celebrated the best guy I know, and lived our life!!!

Happy Birthday Mike, I hope all your birthday wishes come true!! Thanks for choosing to spend your years with me and my sometimes crazy self!!!  I love you more than you’ll ever know! XOXO

 

Happy Birthday Mike, I hope all your birthday wishes come true!! Thanks for choosing to spend your years with me and my sometimes crazy self!!!  I love you more than you’ll ever know! XOXO

Happy Birthday Daddy-O

Part 1

Today we celebrated Mike’s Birthday!!! Our birthday celebrations have changed since having babies…but I’m not complaining! I’m just saying they no longer consist of bar hoping in Boston, or impromtu trips to Vegas!  They are now spent at home, with our close family and friends, and most importantly our babes!!  One on each side helping us blow out our candles!!

Mike’s birthday is very close to Father’s day and sometimes he has to share the day…no worries, I do everything I can do make him feel extra special!

This year for his birthday, Mike decided that he wanted Lobsters for dinner… so Clam bake it was… Steamers,Lobsters, Baked Potatoes, Corn on the Cob and the most delicious Sangria!! My 1st time making it and oh, was it yummy!

Sounds lovely, right?!

Well, we are Murphy’s and I am sure you have heard of Murphy’s Law. So here is how our night starts…

Katy is playing outside and trips down the three bottom cement stairs in front of the house… now most kids make that same fall and get a scrape, but are back up in running after a few smootches from mama… Not my Katy Girl…nope when she does it…she does it! Those three little tripped steps cost us a trip to Children’s ER, ( left our house full of people and Lobsters) and 3 stitches on her sweet little forehead. 

UNBELIVEABLE!! However, I found a positive of being a transplant baby now… called Dr. B on the way in and she called ahead so no lines, no waiting in a very crowed ER on a Friday night!  Oh, that and they gave Kate a little meds to relax her before stitching her and it was like she drank two cups of Sangria…she was a HOOT! Singing and smiling for all the nurses! HILARIOUS!

To be Continued...

Another Long Day at Children’s

I am shocked at how emotionally draining these days are for not only myself, but for Mike as well. We are both just totally overwhelmed and wiped out for the first hour or so of being home. We need to decompress, and love on our babies!

Mike and I headed in to Children’s at 9AM this morning. Awesome Auntie Krissie was able to rework her schedule and care for K & P such a huge relief.

Mike and I met with the transplant nurse coordinator to do some transplant teaching…basically goes over transplant before, during and after.

After that we met with the transplant social worker, basically she does an evaluation on us to see where we are emotionally, financially etc. etc.

All of these things are things that need to be done before Katy can be listed. There is a big ole list of people we need to meet with; 3 sessions of education, nutrition, pharmacy, social work, infectious diseases, genetic people, home health people etc.

Then there is a whole list of testing that needs to be done on Kathryn; blood work ( oh my word…the blood work) abdominal ultrasound, upper GI, Kidney function tests, did I mention the blood work…my poor baby girl thankfully she doesn’t have my veins and is usually a pretty good stick.

Basically, we are just about done with the pre transplant work up… we still need to meet with the pharmacist, infectious diseases, and nutrition (again) and Kate needs to have some more blood work done and the kidney function test.

So after all our meetings this morning, we ran home to pick Kate up to head back to Children’s for our appointment with GI. I was really hoping that GI would give us some clear cut facts and help us make the decision on the G tube. He did not. He was wishy washy as well and not sure that the results would definitely outweigh the risk pre transplant, although it was his opinion that it would be helpful post transplant.

So, at this point I am 95% sure we will not be going the G tube route. I know that it is a great solutions for most heart babies… I just don’t feel it is the right choice for Kate. So unless, the transplant surgeon can convince us otherwise it looks like we will stay G tube free for now. (Not ruling it out completely)

Again, as always thank you so much for your love and support!!

Katy’s Story

June 16, 2010

After 6 years of infertility, and several failed IVF cycles.  Mike and I were finally pregnant.  At our routine 18 week ultrasound instead of finding out if Baby Murphy was a boy or girl, we were informed that our baby had a serious heart defect. 

The left side of her heart was only 1/4 of the size it should have been.  She was diagnosed with Hypoplastic Left Heart Syndrome.  At that point we were given the option to terminate…for us that was not an option.  The alternative we were told was a series of heart surgeries to reconstruct her heart.  The first surgery being immediately after birth.

Katy was born five weeks early due to my preeclampsia. On December 20th 2007 after a  normal, and uneventful delivery, much to everyone’s surprise Miss Kathryn Marie Murphy was born screaming and PINK! After birth ( and a few cuddles with mommy) Kate was taken to Children’s Hospital Boston.

The team at Children’s didn’t quite understand why Kate appeared to be doing so well, her echo still showed a significantly small left ventricle. Yet, somehow her little heart was keeping up with her body’s blood flow needs.  She was a Christmas Miracle in the Cardiac ICU.  No one on the floor has ever seen a HLHS baby this healthy.  After 10 days of observation, it was decided that no surgery was needed at this point and they let us take our baby home!

At our two week cardiac checkup it was decided that more study was needed.  Katy was admitted for a cardiac catheterization, and an MRI.  After another 10 days of testing and observation, we were sent home on 3 heart meds, again no restrictions.

Over the last two years Katy has continued to baffle the doctors, because she is doing so well.  Her heart meds have kept her healthy.  Her diagnosis was changed from Hypoplastic Left Heart, to Restrictive Cardiomyopathy.

The only noticeable symptom Katy shows is that she is tiny and has a difficult time gaining weight, even though she is a great eater and is on a high calorie diet. ( we estimate she eats 1600 calories a day, and she only weighs 20 pounds) It became a concern when she stopped gaining weight 6 months ago.

As a result of her not gaining weight our cardiologist Dr. Marx, who is GREAT! decided that another Cardiac Catheterization and MRI was needed.  The cath showed her pressures to be seven times the normal pressures.  At this time Katy’s care was turned over to the transplant team.

We are currently doing all the testing, prep work and paper work required to get Katy on the transplant list.

To meet Katy you would not believe that she’s a little girl waiting for a new heart.  At this time she is doing clinically well and acting like a happy and normal two year old. 

She is our ROCK STAR!!!

 

Katy’s Lemonade

Well today Katy had her very first lemonade stand! I was so excited at the thought of her selling lemonade. I can remember many of my impromptu lemonade sales!! LOVED IT!

Of course Katy couldn’t have just a lemonade sale she had a lemonade sale with yummy baked goods! With tags made specifically for her! Her sign was not a messy hand drawn one ( not that there is nothing wrong with those) (WE all know that there is something wrong with ME)

I wonder why, I am like this. My mom wasn’t….she was lucky to get the lemonade made in a clean pitcher. I am by no mean disrespecting my mom. She had three of us to have to wrangle in. Also, back then I highly doubt anyone would notice., the mom standards have clearly be raised. Plus, it wasn’t a chore I enjoy making ordinary things pretty.

It was joked that Mike didn’t build Katy a stand…it was planned. We lost a little time with our unexpected hospital admission. Be on the lookout next time!!

Warning:  This post is not a happy puppy dog rainbow post.  This post is REAL and is where I am at this moment in this journey.

I am overwhelmed, overwhelmed doesn’t even do what I am feeling justice.  Overwhelmed with all the choices we have to make regarding Katy’ care…taking care of Patrick.  You know still trying to live life with a head above water

I am afraid… a fear like I have never known.  My 2.5 year old daughter could die of sudden cardiac arrest.

I’m angry… WHY ME! WHY KATE! WHY US!!! I

I’m frustrated at our family members that are just so selfish they are useless and to our other family members that are still in denial…both annoying things to have to deal with  I mean we are facing life altering things here.

I’m sad… I’m yearning for all the hopes and dreams I had for where we would be at this point in my life and let me tell sitting and waiting with my two year old on heart transplant list wasn’t part of it.

I’m disappointed that Life doesn’t just stop and wait for us to get over this HUGE event and then pick up where we left off…that would make this process almost bearable.  But, nope our lease is up in September, so we must start searching for apartments in this area.  Must be close to Children's, laundry still piles up, dinners need to be made and birthdays need to be celebrated. 

I miss my friends… I feel like I haven’t been invited to a mommy or baby play date in forever, and I am guessing its because I had to cancel so many ;(

I miss my husband… I miss the connection, love and fun we had on a daily basis, now its all we can do to get through the day without killing one another.  I know we will get through this, and will probably be stronger for it afterwards.

I’ll try not to let these negative posts sneak through too often, but sometimes I need to get it out?

 

Working on some of the events that never got blogged!!

Riley Memorial Day BBQ

Help Me Pick a Family Photo!

I know that I am not giving you a lot to choose from, but it’s what I have.  So will you help me pick the best out of these 6 to have printed and framed!

We are long over do for a professional shot…long over reads We have NEVER had a family portrait taken!  I really want to have one done before transplant?!

Any suggestions on a reasonable reads cheap, good photographer?!  I know highly unlikely!! Maybe I can search for some coupon codes for Kiddie Kandids! Must get this done ASAP! For now help me choose from these candid shots.

Photo 1

 

Photo 2

Photo 3

 

Photo 4

Photo 5

 

As you can see Patrick was not feeling this photo shoot!

We are feeling the love!

Mike and I are humbled by the generosity, love and support we have been given this past week. Our world has forever changed since we were admitted in to Children’s last Tuesday. Some of our fears have become a reality, some of our hopes and dreams have been broken. We now have new hopes and new dreams.

Kathryn is still our sweet Katy Girl! Patrick is still our funny little man! Mike and I we are still in love and positive and making this life of ours wonderful! Even as we face some unimaginable hurdles.

The outpouring of love, kindness and support from our friends, family and even strangers is overwhelming. ( I mean that in the most positive way possible)

We have had people send balloons, cards, add Katy to their church’s prayer, make meals, offer to help set up fundraisers and benefits, do our laundry, watch Patrick. Oh, and the emails and messages via facebook! A friend from school set up a Katy fan page on Facebook!! We are almost at 400 fans!!! That is 400 people keeping Katy in their thoughts and prayers!! WOW!!! Katy's Facebook Fan Page It’s so nice to know we have so many praying for our little rock star! AMAZING generosity!

With all of that, its humbling. I like to be the one making meals, donating raffle items, and sending meals. A part of me feels that if I accept any of this. The reality becomes real. It;s not that we don’t appreciate it, oh my do we appreciate it. Sometimes, even when not faced with a life changing event, its difficult to accept help.

A meal plan has been put in to place by my Bitchin Mama’s! What an amazing group of women. So happy to be part of them! That will cut down on some of the take out that has been happening and will be especially helpful on days we have clinic.

Another friend is working on the logistics of getting the Katy Bands ordered and sold!! So we can all be showing our love and support for our Rock Star!!! I can’t wait for that!!!

Please continue to keep our Rock Star in your thoughts and prayers…she has been a miracle since the moment she was conceived and I know she will continue to beat all the odds!!!

A Day At Children’s

June 8th 8:30AM to 4:00PM

Oh, my what a day! A long, long day… with no new information! I could just SCREAM!!! I am slowly starting to get more and more frustrated. We all want answers, we all want what it best for Kathryn, No one seems to know the best way to accomplish any of it. To me it seems like a big guessing game and my baby girl is the guinea pig.

That said, I am trying to stay positive and I don’t want to sound ungrateful, or that I am in denial, or that I am negative. What we are facing is surreal. No parent should have to make these kind of decisions and no baby should be faced with what Kathryn is being faced with. Her future regardless of what decision, makes my heart hurt.

Today we had planned to meet with Nutrition, EKG, Transplant, and GI. Well that schedule seemed backwards to me since I felt we needed a plan to be devised with the team, before Nutrition or GI could be of any help to us. So we went to nutrition and she agreed, so we planned to remeet with her after transplant, during GI. That sounded great, but the logistics of that are a nightmare. Because, of course Transplant took longer than the 30 minutes we had before we needed to be at the GI appointment. We went in circles with transplant trying to figure out the plan. ( i.e., g tube, transplant status, meds etc, etc.) So the "plan” if you can call it one was that we didn’t have enough information and that Mike and I needed to meet with GI and then coming back to see Dr. Blume.

As it turned out GI could not fit us in to her afternoon…so the bottom line is TODAY WAS A WASTE OF TIME!! We could have spent it at the playground…instead of the hospital. I wonder how many of these days we have in our future. I hope not too many because these kind of days are emotionally and physically draining.

We should have a new appointment set up tomorrow! I will keep you posted.

We are HOME!

Oh, my! Sorry for the delay in updates. I am surprised at just how draining and tiring talking and writing about our new “normal” is. We are dealing with a whirl wind of emotions, and feelings. This roller coaster keeps going up steeper inclines, and crashing down faster than the last. I have so much to share, (and document for myself) that I think the quickest way might just be bullet points up until present day.

I still have some AWESOME pictures from Memorial Day weekend! I was editing some last night and I remembering how stressed and anxious I was for the impending cath. Oh, how I wish I could go back to that time.

The Transplant doctor has tried to reassure us that Kate is no different then she was before her cath… and I know she is still the awesome, adorable, feisty, did I mention adorable 2 year old that she was then. It’s just that now we know how very sick her heart is. We always knew her heart wasn’t “normal”. I just always hoped and prayed it would get her through. That dream is gone.

So here goes… if I miss something or you don’t understand something. Please leave a comment and either myself or Mike will do or best to answer it, or find out the answer.

Thursday June 3rd Day 3 at Children’s Continued

5:30pm FINALLY leave Children’s…they are awesome there, but let me tell you when its time for discharge…no one is QUICK!

7:00pm Arrive home, yes I know I live 15 minutes from Children’s. Red Sox day game, combined with afternoon traffic and severe downpours and thunderstorms makes our 15 minute drive an hour and a half. Still better then sitting in Children’s Arrive to her pump and IV pole on our porch… the sight of it brings the pit in my stomach to the back of my throat. New Normal… SUCKS.

7:30pm Getting Kate settled…Auntie Krissie brought Patrick home!! Boy, did we all miss that little man. Kate & Patrick played…dinner and then it was time for bed!

8:00pm Give Kate all her meds! ( up to 5 meds and a Flintstone Vitamin) Mike sets up her pump. We read bedtime stories and attempt to hook Kate up to her first feed at home. As it turns out, the fittings don’t match and we can’t hook her up. Mike and I decide to skip the night feeds and deal with it with the visiting nurse tomorrow.

8:30pm Mike and I order take out! (Can I just tell you how sick I am of TAKE OUT & Hospital Food! UGGGH!!!!)

All the Murphy’s sleep like rocks!!!

Friday June 4th

9:30am We all slept and that felt great!!! Kate & I went about our business of running errands, which of course included a trip to Target, Katy Girls favorite store! We came home and had a visit from the visiting nurse. She had new fittings for the NG tube, so we were all set that nights feed.

4:00 pm Nana came to visit and brought Katy a BIG bunch of balloons, which Katy absolutely LOVED!

6:00pm We ordered dinner in, because really who has the energy to do much more.

7:30 We got K & P ready for bed. Mike hooked up the feed again… we explained to Katy that she was attached, put her in, said our prayers and said goodnight!

7:40pm…SCREAM… Kate was SCREAMING help me, help me, Mike, my mom , and I all knew what that meant. Kate had pulled her feeding tube more than half way out… Mike had no choice, but to pull it the rest of the way out.

7:45pm Call the floor, they say call transplant, have transplant paged within three minutes the transplant doctor calls us back, he wants it put back in, call Pedi to set that up. Mike and I decide that the NG tube is not going back in since she will just pull it back out.

8:00pm talk with the Pedi on call, we leave a message to have our pediatrician call us in the morning. We get the kids resettled. I have school in the morning!

Saturday June 5th

6:45am I leave for my 10 hour school day…leaving Mike to deal with all the doctors. Mike speaks with our awesome pediatrician who called us while away at a wedding!! She agreed that putting the NG tube back in. Was not the best answer, and really not even an option.

It’s decided to enjoy the weekend… we have appointments with GI, Nutrition and Transplant on Tuesday!

Ok, so that gets you up to date… I will update about today’s appointments, once the kids are settled.

Children’s Day 3

I feel like I have so much to update, since yesterday afternoon and today. WOW what a long day it has been. Many decisions have been made,and I feel like if ONE MORE PERSON COMES IN TO TALK TO US…I MAY LOOSE IT! I’m DONE, I’m tired, I am sick of hearing all the speculation. I WANT ANSWERS and no one seems to have any. I want to go back to this past weekend of cookouts, and visiting with family, running through the sprinkler and blowing bubbles with BOTH my babies! I feel like everything has changed, in a matter of days. New doctors, new nurses, new meds, new plans. For the 1st time I feel like a heart mom and not just a mom. We have been so blessed that Kate has been so well, that although I always knew this was a possibility, I never really was a typical heart mom.

So yesterday we met with and decided with GI and the team (transplant team, from this point forward when I refer to the team its the transplant team) that we would put an NG tube (feeding tube from her nose to her tummy) as a test to see if her stomach could handle the feeds before, surgically placing a G tube. The reason for the feeding tube, is to see if we can get Kate to pack on some pounds, with additional calories. Basically, it would be impossible for us to actual feed Kate the amount of calories we think she would need to actual see a weight gain. (Kate’s heart is working so hard it is burning calories so fast that she needs rocket fuel) Ideally, the plan would be to give Kate 3 months to try and gain weight, before listing her.

Kate was not a fan of having the NG tube inserted, however I am happy to report that once it was in she didn’t seem to mind one bit. I was very surprised at her non reaction. I had guessed she would have in pulled out within the hour. (very thankful she did not) Kathryn tolerated her feeds just fine.

We met with the team this morning to discuss the next step, which in their mind was placement of the G tube. Mike and I weren’t completely sold on that idea. We really wanted a better feel of when they wanted to place Kate on the list, and what needed to happen before doing that. I also am a bit doubtful that increasing her calories will help her gain weight. We have been on a high cal diet including pedisure supplements and haven’t seen a change. Mike and I went back and fourth with the team and it was decided that since Kate was tolerating the NG tube, we would leave it in and run the feeds at night while she sleeps to see if she gains any weight, we will do that for the next 3-4 weeks and then make a decision. If it works we will then consider having a more permanent G tube placed. We all agreed that this was a good compromise for right now.

We spent the rest of day working on the logistics of getting discharged. OH MY WORD! What a process. Mike and I spent a lot of the day being educated on the transplant process, learning how to do Katy’s feeds, new meds etc. etc.

Finally at 5:30 pm we were ready to be DISCHARGED!

Looking forward to getting back to “normal”l…well finding our new “normal”

Mike and I can not thank you enough for all your prayers, and kind words. They have really gotten us through the past couple days. We have a long journey ahead of us and are so thankful for your love and support.

Amiee’s Favorite Things Give Away Update

I haven’t forgotten about this… This is on hold until we are home and back to “normal” 

I haven’t forgotten the winners!

I will get them postal ASAP!

Thanks for your understanding!

Day 2 on 8 East!

I was able to get some sleep last night…thank god for Ambien. Katy and Mike slept from about 11-6ish, so that was good. I came up first thing this morning. Kate and Mike are in the playroom. Kate is in a GREAT mood and happy to be wire free…she just has the IV in her arm. It’s hard to believe that her heart is so sick…since she looks so good.

Looks like today will be a day of data collecting, we will be meeting with nutrition, genetics, GI, transplant etc. etc. Luckily, that means not to much needs to be done to Kate. She will need a blood drawer, once we meet with everyone and they all get what they want ordered.

You know me, I just want her home! If any of this can be done out patient that is how I want it done!

I happy to know that Patrick is in good hands today with The DeMarcos. I know he had a fun day with Nana yesterday.

Off to play with my princess!! Keep the prayers coming!!!

Looks like you might say our luck has run out!

Today was Katy’s cath/MRI/ & Biopsy. First I want to preface this post with its 12:30 at night, I have taken my ambien and can not be held responsible for misspellings , ramblings etc, etc, I wasn’t going to even blog. I thought that I owed it to some of you to at least give you a quick run down.

Kate went in for her MRI @930 by 11 she was headed to the cath lab. She was out of the cath lab by 130. During the Cath lab they found that the pressures in her left heart were very high…not good. Her blood count was low as well, so they gave her a blood transfusion.

At this point we met with our cardiologist Dr. Marx and it was decided to that it was time to expand Katy’s team and refer her to the Heart Failure/Transplant Team. We met with Dr. Blume and both Mike and I immediately liked her.

At this point Kate was admitted and its looking like she will be here until Friday, a decision should be made by then on when and how she will be listed.

Today was a long difficult day! I just want my baby back to her happy, funny, smiley self!

I am looking to have some of the Lance Armstrong type wrist bands made up…pink and green with Katy is a Rock star. Any recommendations on where I can get them at a reasonable price?

Please pray for our princess!!!!

Memorial Day at The Riley’s

I don’t know about you, but I need a happier post, with PICTURES!  I asked regarding putting the photos on here, It seemed it would be fine.  If there is a picture here you would prefer not to be.  Please let me know ASAP!

We headed down to Marshfield on Sunday May 29th for a great Memorial Day Cook out, and to celebrate Papa Riley’s Birthday celebration. with all our Riley cousins.  I am so happy that we have reconnected with our Riley family relatives.  They are a beautiful, kind family and always make us feel so welcomed!  I love watching all the kids interact!! Very much looking forward to having all the cousins together again this summer!!!