Happy 5th Birthday, Ellie!!

Dear Ellie,

When you were born, the doctors told us that most kids with HLHS that experience problems have them in the first five years of life.  Today at 4:31 p.m. you will be 5 years old.  You have no idea right now, but I hope in the future I can find the words to explain to you how monumental this day is for me.  You woke up a lot last night so Daddy ended up putting you in bed with us. Maybe it was the anticipation of your big day? You spent the night digging your knees in my stomach and pulling my hair.  I may be one grumpy Momma in the middle of the night, but I am profoundly grateful that you are here to steal my pillow and elbow me while I try to sleep.

We have a fun filled day today. It was suppose to start with your birthday party at school, but the snow, freezing rain and two hour delay put a stop to that.  At 11:30 we have your birthday party at Bounce U, followed by your five year check up with Dr. Sarah and then we get to sing to you tonight after dinner with cupcakes and presents!  I can't wait!!

At 10:45 a.m. while we were getting on our socks and shoes to leave for your party, you noticed Charlie had already started to open one of your presents.  You finished the job and were excited to be the new owner of Chutes and Ladders... I'm not going to lie, I am pretty excited to play that game with you later because it was my favorite as a kid! I hope you get hours of enjoyment out of it.

At 11:30 we had your birthday party at Bounce U in Cherry Hill.  We went in the first play room.  You had a great time jumping in the bounce houses with your friends.  Your guest list included: Audrey, Sam, Jules, Matt, Nicholas, Dane, Shay, Lilah, Elliot, Katerina, Sammy, Stevie, Jenna, Gigi, and your BFF Molly.  In the second bounce room you continued to have some fun with your friends. There was a big blow up slide that you were nervous to go down.  After going down a few times with one of the staff members you decided to go with just your friends, holding hands with Jenna and Sammy.  After that we were off to eat pizza and have cake.  You lit up when your friends sang you Happy Birthday.

As soon as we got home you opened a few presents before I dragged you off to your five year well visit with Dr. Sarah.  She was very pleased with your development. You weighed in at 32 pounds and you were 40 inches tall.  You had to get two shots, but were brave and didn't cry at all.  Dr. Sarah let us know you wouldn't need anymore scheduled shots until you were 11, except for your yearly flu shot!  On the way out, you grabbed a pink lollipop and we were on our way back home so you could open the rest of the presents from your friends.

After Daddy and I finished opening and sorting all of your presents we had dinner and sang Happy Birthday to you again, just the five of us.  You opened your presents.  I think your favorite was a tie between your Hello Kitty rain boots from Charlie or your T-Rex excavation kit from MiMi.  Daddy is going to help you with that this weekend!

Ellie, I hope we gave you the perfect 5th birthday.  We are so blessed to have you in our lives.  I am so proud to be your Momma.

Love,
Me

xoxo

It. Was. A. DISASTER.

It was a horrible disaster. She woke up at midnight wet and wouldn't go back to sleep in her bed.  We brought her in with us where she kept us awake until 3a.m. until I couldn't take it anymore so I put her back in her room and she screamed until 4 a.m.  She did wake up cheery at 7 a.m. for school though. So, I guess that's a plus.  Mama, on the other hand, is dead tired and there are three bathrooms that need her attention after Bubba goes down for his nap. 

Good times!

I've SO got this!

I’m going to admit…. I am a little nervous tonight. A few nights ago, Ellie forgot to put a pull-up on before bed. She woke up a mess, but it was no big deal. I threw everything in the wash and just told her “No pressure, someday you’ll be big enough, blah blah blah.” WELL, now she wants a big girl bed. We’ve been talking about it for a while, but Hubs and I have yet to go out and buy one. She’s in a toddler bed from IKEA; it’s long enough for her. The problem there is that I think it’s getting tired of holding my fat ass while we do the whole bed time routine.

When I last spoke with the pediatrician regarding her potty training, she reassured me it was no big deal that she was still in a pull-up at night. She said it would be easier for us and eventually she would just stop wetting overnight. I’m totally going to embarrassment myself here (Chris too, sorry babe), but as far as we remember we both wet the bed at night until we were like seven! So, this is a battle I just haven’t felt ready to take on. Ready or not, Magoo has decided she is ready because she wants her big girl bed, with princess sheets no less!

Tonight at bed time she said she didn’t want a pull up. I put a pad under her, ya know, the ones you steal from the hospital when you are there giving birth, and gave her an extra blanket to sleep with hoping to make clean up tomorrow easier if things don’t go as she planned. She was so calm about it though, like she really thought it through. She just said “if I wake up I’ll go to the bathroom because I have my nightlight.” Then she gave me this look like she wanted to say, “Duh, Mom, I’ve SO got this!” OKAY!! Not that I think tonight will be a success, though for her sake I hope it is because she was just so sure of herself tonight… but I know that it can’t be THIS easy. I am the sucker that though potty training was going to be easy in the first place and we all know how wrong I was about that one!

The way to a little girl's heart

Magoo has been doing great at school. As soon as she gets home she morphs into her evil twin... but I'd much rather her act like that here than at school. Yesterday while she was at school, Bubba and I took a trip to Walmart. It's the cheapest place around here to get apple juice. I was very excited to find a light up Cinderella princess dress and coat that Ellie can use on Halloween, on clearance no less! Along with that I got her a Cinderella tiara, princess undies, and a Cinderella pajama set.

So what does a mother do with all things Cinderella? Hold them over their three-and-a-half year-old's head of course. I'm being mean. I'm using them as surprises to get her to stay dry all day. I showed her every item and with each new one I took out of the bag her squeals of delight became louder... then I broke the news to her that she couldn't get them until she stayed dry all day, and that she could only get them one at a time. You should have seen her face. It was like the end of the world!

I'll let you know if it works!

She was ready...

She was ready... Last night she picked out her "first day of school" outfit and left it in the bathroom so she could get up and change all by herself.


She was ready... She slept in her bed all night (first time since our trip to CHB), woke up this morning, and got dressed and ready for school.


She was ready... We got in the car and she clapped the entire way to school saying how excited she was for school today.


She was ready... At 8:45 a.m. she lined up outside of her classroom and barely took the time to yell "bye" to me over her shoulder before rushing into her school.



I was not... As soon as we turned onto our street I burst into tears.

Happy first day of preschool Curly Cue Magoo... Mommy is so proud of you!

Our princess is PINK!

When we were pregnant for Ellie I remember them preparing us for how "blue" our baby would be. Honestly, when she was born she was rosy pink and didn't look like she had a thing wrong with her. That quickly came to an end and I can't remember a time when Ellie did not have purple lips, finger tips, and toes... wellllllll NOT anymore!! Our girl is PINK, bright beautiful PINK, head to toe!! It's amazing really. I'll post a picture I took of them today when we get back to Jersey.

We went in Thursday for our pre-cath tests. She did great and only freaked out about the blood draw, which Chris bravely handled while I sat in the waiting room with Charlie. Friday we were first case for the cath. They had trouble gaining access through her right femoral artery (I think that's what it's called, but I know the abbreviation is RFA, LOL). They entered through her left and had success. Her Fontan pressures remained low with a balloon sealing up her fenestration so they went ahead and put "the device" (which is how they all refer to it) in the stent and closed up the fenestration. They also ballooned her left pulmonary artery, which has a stent in it from a previous cath because of narrowing. She required no coiling of collaterals and the doctors were happy there was no leakage or regurgitation in any of her valves... which is pretty significant. Most HLHS kids of a little of both I guess?

It took a little while for them to get her on the vent and then gain access through her groin, but once they did it only took an hour and a half. I think in total we were away from her for less than four hours. When we got the call to go back she was just waking up and very agitated. The next hour and a half were the hardest because she was still pretty doped up and hard to reason with. She wasn't easy to calm and was completely freaked out by having IV's in both of her hands. She just kept waving them in front of her face and screaming. On top of that we had a know-it-all nurse that came in and told me basically that I was over stimulating my child. I know she was just trying to help, but her tone of voice really pissed me off! We know Ellie. TV calms her... and guess what? We were right! All it took was some Dora The Explorer and she was quiet and calm. LOL At this point her oxygen saturation was 100%, which is quite insane and still hard to believe. She never dips below 95!! Before the fenestration closing she was 73-78. Of course the day we went in for testing she was 85... but that is SO not the norm for her!

We were discharged this morning a little after 8 a.m. She has been doing so well. She already seems to have more energy and breath. It's truly amazing. We have to keep telling her to lie down and relax a bit so she doesn't make the incision site bleed. I think the only challenge we have left is changing the band-aids. Ellie doesn't have many fears considering how much she has been to the doctors and in and out of hospitals, but tape and band-aids are always an issue. She still has her lead stickers on! We told her she could take them off when she's ready. The groin band-aids need to be changed every morning for the next three days though so those she really doesn't have a choice about.

We have had a minor set back in the potty area because she doesn't want anyone to touch her. She thinks everyone is going after her band-aids. When she first got out they had clear medical tape over gauze covering the two incision sites. She threw up after having a pop and a half. When she threw up she caused a rebleed so they immediately had to call in help and put a lot of pressure on it after ripping off the tape. She hated that and the new covering was pulling at her skin and she couldn't even walk. That has caused some major emotional trauma. I'm hoping in a couple of days it will just be a distant memory.

I am thinking of just putting her in a pull up the first few days of preschool and hoping the teachers don't notice. I just don't want to push her. She really just needs to trust that nobody is going to hurt her when she takes off her shorts. Poor kid.

Other than the band-aid issue though, she really is doing so well. We are considering heading back home to New Jersey tomorrow depending on how Ellie is feeling. We were nervous she wouldn't be able to handle the car ride, but now we think she might be able to. We'll see tomorrow I guess!

Such a big girl...

Magoo has been such a big girl. She really is just so smart. I know that all Moms think that about their kids... but I'm different, because I'm right. She is sitting here practicing her letters. So exciting about starting school in September. My biggest fear is that she is going to get kicked out for having one too many accidents. She's peed on the floor twice today and had countless accidents this weekend while my parents were here visiting. It use to be so frustrating, but now I am just at a loss. I keep telling myself she won't have any problems at school. Kids are different when they are around other kids, right? Ughgh. I'm just going to feel bad if she's "that kid." I remember having an accident in Kindergarten and waiting in the bathroom while my godmother brought me a change of clothes... I'm 30. I shouldn't remember that, but I do. Granted, it was Catholic school so who knows what kind of shame they tried to lay on me :)

On another note, I stopped nursing Bubba last week. I think I pumped once on Thursday and that's it. My poor boobs hurt for so long. I forgot what it's like. I am so unbelievably sad. Much more upset about not nursing than I thought I would be. I was sort of looking forward to it. I have cried about four times. After the first two days he was taking the formula fine. He doesn't have any issues. I have many. I know that this really is the best thing for him and #3. By the time #3 gets here he won't feel like he's being dumped and abandoned because I am nursing #3 and not him. I have a few months to have my body (somewhat) back. I'm not as tired as I use to be, which is better for both Bubba and Magoo! I was just surprised by the emotional attachment nursing brings. I never expected it, but it was pretty great.

The Congenital Heart Defect (CHD) Awareness Quilt Project

Ellie has a quilt block on quilt #50 as part of the The Congenital Heart Defect (CHD) Awareness Quilt Project. They had a showing this morning in Fall River and since we're five hours away and I just found out about it this morning, my fabulous sister and mother went to see it in person for me. I've seen a picture of it before, but was so happy someone saw the REAL quilt!!

Her block has her name, birthday and CHD. They put princesses on there because she LOVES her princesses! And ballerinas because she use to dance all around the house when she was a toddler. The caterpillar is from "The Very Hungry Caterpillar," by Eric Carle, which is still one of her very favorite books to this day. "Good Night Moon" is another favorite and we use to read it to her every night at bed time. I recently started reading this to Charlie on most nights. The turtle is from a Disney movie, but we put that on there because Ellie's cousin Kenny brought her the stuffed version when she was in recovery in the hospital after her Glenn.
I am sad I wasn't there to see it myself, but so happy someone got to see it!!!!!

Talked to the folks in Boston...

I had a "conference call" with Dr. T and his nurse this evening. They agree that Ellie needs a cath. He is on vacation for the next two weeks so they are sending in the paperwork to get Ellie scheduled for a cardiac catheterization (cath) the week of August 10th. He said he can't say she won't need surgery, but he hopes she doesn't... so the cath will tell us what the next steps are. It was so nice to hear his voice. How weird is that?

He said that he'd prefer we go to Boston because they know her there and if they do one in Philly they'll basically be starting from scratch with her. We've been through too much to start all over, so Boston it is!

When I told him we were expecting again he laughed and told his nurse we obviously don't have TV! Ha ha!! He's so cute!

I'm glad that we finally have a plan... Now I need to hit up the stores to fill her "surprise box" again for the pre-cath day when they do all the testing (blood work, chest x-rays, EKG, echo). We usually get away with not having all of this done, but since they haven't seen her since January I am sure they'll want it all. The "surprises" she doesn't get in between tests will keep her busy in recovery and if we have to stay the night. I'll plan on an overnight stay, but sometimes if you're first case you get to go home that evening. I'll keep you all posted when I hear from them with a date!

My lovey...

Ellie fell asleep watching TV while I was on the phone with my MIL for an hour. She is so cute! We thought she was awfully quiet while we were talking! Ha ha!! She didn't even pee her pants!! I was so happy!

Where to begin...

Ellie's cardiology visit wasn't bad, but wasn't great. They did an echo and couldn't see all that they wanted to see. They want to get her in for a cath in the next few weeks. Dr. A came to this conclusion because Ellie has remained blue and her stats don't normally get out of the 70's since her Fontan surgery 10 months ago. She is also extremely out of breath and tired after just a few minutes of playing. Basically, he hasn't seen any improvement since her surgery and that shouldn't be the case. He is sure that it has something to with the stent in her fenestration. Dr. T (our HLHS god) said after surgery that the fenestration was "generous" allowing a ton of blood flow to the small non functioning left side of her heart. Now, my worry is that when I asked Dr. A if a fix could be made through cath, avoiding another open heart surgery (don't we all agree, three is enough?), he basically made a funny face and was like "Weeeeeelllll, not necessarily." This does not sit well with me. I thought we were done with surgeries, at least for a LONG while. I can't really wrap my head around it. I have put an email in to Dr. T in Boston to see if he thinks we should travel to Boston for the cath. Bottom line - if we ever need another surgery she is going to Boston, so if this cath could lead to that would it be more beneficial to Ellie to have the cath performed at CHB?

On a positive note, there are no glaring issues with Ellie's heart. That damn fenestration just has never, and will never, make things easy on us. Ughgh!

Honestly, the thought of the mere possibility of another surgery scares the crap out of me.

My appointment last night was boring. They wouldn't tell me anything so I either have to ask the perinatologist I meet with tomorrow or when I see my regular OB next week. The tech wouldn't even check the heart for me. I thought that was just plain mean.

OMG... the great news of the day - No DIABETES!! For anyone who hasn't heard yet, we're just dealing with a little girl with some obvious toilet regression issues :) LOL

Take care and I hope I haven't freaked any of you out too much. If I did sorry, but this is a great way for me to vent so I can function again!