EI, EI.. Oh?

Both Jacks cardiologist and his pediatrician suggested that I call and have Jack assessed by EI. 

What is EI? Early intervention. My initial reaction was absolutely not. My son is perfect and there's nothing wrong with him.. Other than the obvious. I didn't want strangers coming into my house and judging my son.. Picking his every move or facial expression apart. No thanks. 

That's not really what it's like at all.. And I know it's only what's best for Jack. He still isn't rolling over. He gets to his side and gets stuck. I'm afraid it may be my fault. He's spent most of his 6 months not on this earth but in my arms. He would sigh and would jump and scoop him up. His doctors said they always suggest EI to any kid with CHD.. So I finally made the call today and they are coming August 18th. 

Hopefully they come and say he isn't eligible for services.. Only because he's already needed so much.. It would just be nice to hear he doesn't need any extra help. I just want him to thrive.. But if it takes services to help him thrive, we will do whatever it takes. 

Feeding himself 

Sitting up with a little help from the boppy

Close your eyes, mama.

Loves playing with his toes.

I See Her

From the very beginning of all that is Jack, Evie has always been a priority and constant concern for me. Where was she going to stay when I was delivering Jack? Who would watch her? Was she going to be ok? Would she be excited to be a sister? My biggest concern should have been how she would handle having a brother that got so much attention. Believe it or not, I never really gave it much thought. I knew she'd be jealous.. Because what child who has had their mom, dad and grandma to herself for so long wouldn't be jealous? 

It's much more complicated than that. She has been experiencing these big and complex emotions and is unable to express her jealousy/anger/sadness/frustration in a healthy way. She not only lacks the maturity but the language to even tell us why she feels the way she does.  

So she acts out. Countless tantrums. Glass shattering screaming fits. I would be lying if I said she didn't try to hit/kick/pinch/squish Jack from time to time. I know she loves him.. And he loves her right back. It's been almost 2 full months since Jack's surgery and she is still having a hard time with this. I know she just wants my undivided attention, but if I can't give that to her, then what can I give? 

I haven't mastered this situation. It's far from perfect and I don't know if I'm even approaching it the right way.. But I'm doing my best. She needs my love, my patience and my understanding. She needs my time.. And these are all things I can give her. When she is being aggressive towards Jack, I know it's because she wants the attention-- positive or negative. I remove her from the immediate vicinity and have her cool off in a time out.. The. I talk to her. She sits on my lap and snuggles on my lap and I ask her what she is feeling. I try to help her label the emotion she is feeling. I try to help her better understand it and suggest other ways to deal with it. She needs that closeness-- to know that I don't think she is bad. To know that I see her, and I care for her like no one else ever will. 

It's a struggle everyday. Some days I feel good when it's time to put her down to sleep.. Other days I replay the day in my head and shudder at the lack of patience I'd had for her. Me snapping at her, and her bringing her tiny hands up to cover her face as she cried. Some days, I just wish I could hit the do over button. 

This motherhood business is tough. But anything worth doing wouldn't be easy. 

It's been a while..

It's been a while since I've posted... A little too long! I can't believe it's been 6 weeks since Jack's big surgery!!! 

I have been meaning to post an update, but it's been so difficult to find the time. It's been busy, but it's been the most wonderful kind of busy. I feel like I've been repeating myself over and over.. When people ask me how it feels to have this part of Jack's journey behind us, my response is always the same. It literally feels like we got to start over again as a family. It feels like we got the biggest do over you could ask for. As of now, there are no restrictions for Jack. We can finally pick him up from underneath his arms!!! Can you imagine? For the past 6 weeks, we've had to scoop him in some very creative ways, as to not pull at he incision site. He can do tummy time and work on rolling over. He can eat solids! We aren't stuck being held up inside.. We can go to the park and enjoy the sunshine. I can take him into a mall without being terrified of him catching a cold. For the first time, we feel like a normal family. And normal has never felt so good.

Jack is currently on 2 doses a day of blood pressure medicine or as Evie calls it, his yucky medicine. He hates it and has learned to stiff lip me as soon as he sees the syringe. He is also on a low dose aspirin regimen once a day. 

We had our final appointment with Dr. Ronai a couple weeks ago (I think I hugged her for 10 minutes and cried).. She told us he looks absolutely amazing.. And to enjoy our summer! We don't have to go back to childrens until October! We also met with a geneticist, Dr. Roberts at this visit.. She fell in love with Jack and also said he looked great and was developing right on track. We see her again in January.. Just to check in and make sure he is still on track. 

Jack is just the sweetest, happiest most lovable baby boy-- the scar is the only giveaway that he is sick. Other than that, Jack looks and acts like any almost 6 month old baby. 

Is there a bigger word for "grateful"? If so, that's what I am. 

LOVES this thing

Almost as much as he loves EATING!

At his last childrens appointment 

Chicks dig scars

Chilling with Sofie in the Bumbo!

Love this face

Yea, you need a few more teeth before you can dive into calzone buddy.

..but I'll "shave" it for later.

First trip to NH!

Dipping his feet at Ossippee lake

Photo cred to auntie Kerri and uncle Eric on this one! 

My son and I <3

It's Been [Sur]real

The past few days have been so surreal. I cannot believe Jack came home from the hospital less than a week after his surgery. It's been like we've had this big, dark scary rain cloud hanging over our heads, threatening to open up and drown us-- and all of a sudden the sky is clear. For the last 4 months (not counting while I was pregnant) we worried about Jack's surgery. Now it's over. It was successful.. and we are home. I can breathe.

How has he been? Great! Teething.. which isn't so great. That's actually pretty terrible. But since surgery, he has been eating more in one sitting. He is also sleeping much better. He is no longer on the oxygen! He has been chatting away more and more... he is smiling and laughing. He is perfect.

Jack has to take a blood pressure medication 3 times a day. He is back on Lasix (but already weening off). He can take motrin and tylonol as needed for pain. He also takes half a baby aspirin once a day.. which he will continue to do until his next suregery when he is 3.

Jack had a follow up appointment in Boston Friday and it went great. Dr. Ronai looked at us at one point and said "This couldn't have gone any better." And no one could have said anything any better to us-- what a wonderful, gratifying feeling after all the tears and fear. We go back in 3 weeks to meet with genetics and with Dr. Ronai one last time.. her fellowship is up and she accepted a job in Portland, Oregon. :( :( :(

Thank God for my mother.. I know I say it all the time, but I don't think I can say it enough. She was there for us the day of surgery and everyday since. She moved into my house to help us with Evie.. she has cooked, cleaned, played, sang, rocked, food shopped, soothed, hugged, loved and every other which way you would think someone could be helpful in this situation. I swear she could move mountains. I love you, mom.

That's it for now..

xo Marissa

Jack and Dr Ronai right before discharge

Field trip to Grandmas 

The sweetest boy.. He loves that blanket

Looking cute

He was playing shy guy.. So sweet!

Change of address

WE ARE GOING HOME!!! 

On some meds which I will explain in a later post but we got discharged and are heading HOME! 

Post again in a bit.. For now, relishing the joy and happiness!!!

Xo Marissa 

Presence

I'm pretty big on signs and believing that just because someone has past away doesn't mean they still make their presence known and felt.

One night before Jack's surgery, my mom was putting Evie to bed. Evie is always going a mile a minute, even seconds before her head hits her pillow, so she was chatting my moms ear off as they rocked. Evie started talking about Papa (my father). This is nothing out of the ordinary, she talks about him all the time despite the fact that he has been gone for over a year now. My mom asked Evie if Papa was there with them and wanted to know if he had anything to say. Evie said "Papa said Evie's a good girl". My mom agreed and asked if Papa wanted to say anything to Grandma. Evie replied, "Papa loves Grandma". Talk about true love.. Even in death, my father finds a way to be there to comfort my mother at such a stressful time. I get goosebumps every time I think of this exchange and I am so happy she got to feel his presence at such a critical and sensitive time.

During our pre op appointments on Wednesday, we found ourselves hanging in a waiting room between meetings with surgeons and doctors and what not. Jeremy was fiddling with his phone and all of a sudden let out this gasp. I looked at his face-- his expression was a mix of shock and disbelief. I asked him what was wrong and he said that he had just been going through his text messages and his phone just started calling my dad's cell phone.

Chills? Yep. All over. He wanted us to know he was there with us at that very moment.. amidst the uncertainty and fear. He was there.

I know my dad would've been by our sides.. doing everything and anything he could've to support us. To guide us. To love us and to be there for his grandson. So many moments I find myself thinking "What would Daddy do?" or "Big Rich would've had something funny to say right about now." and most often "I wish my dad was here." I miss him. But I know he was here with us and that he has been since the beginning. So thanks Dad... for, like always, going above and beyond the call of fatherly duty.

xo Rissa

The Amazing Jack

Another great day for our man, Jack.

He had a chest X-ray this morning and it came back clear.. so out came the chest tube and his pacing wire! The only wires on him now are his monitors! He is eating, peeing and pooping like a champ. He has flirted with every nurse that has stepped into this room and is getting back to being his old self again! My heart could burst-- I'm amazed and so proud of my baby boy!

We had quite a few visitors today. My mom, Evie and I came back in around 12. Jeremy's Aunt Jeanne and her friend Earl drove all the way down from NH to come see Jack! Auntie Lynne, Uncle Ben and cousin Gabby came by before they headed out for vacation this week. Finally, Auntie Carole and cousin Amy came by for a nice visit! Thank you everyone, for taking the time to come and see us. It may not seem like a big deal to you, but to us it's everything.

We are so close to being home, we can almost taste it!! Those prayers, well wishes and good vibes are working overtime-- in a big way! Keep them up!!

xo Marissa

A boy and his Grandrea.. Love!

Selfies with mama

The dream team plus 2 midgets

Aww a baby Evie..

Ugh 4 months AND he is smiling in his sleep? Too much cuteness for 1 picture 

..he wasn't thrilled having my phone in his face at this particular moment

Jack's turn for selfies with mama!

Love at first snuggle

Hahahaha his face