Up Your Nose With a Rubber Hose

This whole oxygen thing is for the birds.

The tabs they sent him home with on his face to keep the tubes in place are probably manufactured by terrorists. They were practically fused into his skin. I tried baby oil and alcohol wipes to no avail. I finally just decided to peel them off as quickly as I could. With the first one, he cried out in absolute horror and pain.. And with the second he let out this cry of disbelief as if to say "mom are you SERIOUSLY trying to hurt me?!"

We haven't used those tabs since. His poor face was so irritated, I couldn't bare the thought of doing that to him again. We have been using this white flexible foam tape they gave us to hold the probes on his feet while checking O2 sats. I cut it into little strips and we let them pretty much fall off before we replace them. 

The tubing still seems to slip out of his nose no matter how well we tape it. I'm constantly shoving it back up his nostrils and I can't imagine how irritated the inside of his nose must be! And at night while he sleeps? Forget it. I swear he purposefully rubs his face to pull it out. I've even caught him chewing on it. Gross. 

Dr. Ronai assured us that after surgery, this will all be a distant memory and he won't need the oxygen any more. 

I can't tell you how much I look forward to having the Glenn and these O2 tubes behind us. 

Thankful

Jack had one of his quickest, easiest and most successful appointments at Children's to date! After he got measured (22 in) and weighed (11 lb 15 ounces) we headed to the exam room where we thought Jack would be hooked up for an EKG. I could hear a familiar voice from the hall say "No no, we don't need it. We're good." Thank  you, Dr. Ronai! ;)

We had been having trouble getting a good reading on Jack's O2 sats at home. The probes that we attach to his foot are next to impossible to get a solid read.. we have to wrap it around his foot, then unwrap it and try his other foot. It's incredibly frustrating. I texted Dr. Ronai about it and she said she'd get us new ones.. and she very discreetly delivered. I guess these probes are a hot commodity.

Dr. Ronai and Dr. T were VERY happy with Jack. His O2 sats were 80, his color looked good and they were very impressed with his weight. So much so that we don't go back for another 2 weeks for his next appointment. At that point they will check his sats and weight and will either 1) schedule surgery for soon after that appointment (which is what I think Dr. Ronai is leaning towards) or 2) "kick the ball down the field a little" as Dr. T put it and give him another 2 weeks. All I can say is that it was so nice to hear all positive things for once.

On the drive home from the hospital, all I could think about was how thankful I am for so much...

I am so thankful for Dr, Ronai and Dr. T for doing what they do and doing it so well. They are committed to making my son better.. they aren't just taking care of him but they care FOR him. Which makes this entire experience so much more personal.

I am thankful for Jack being so strong and amazing through all of this. He's dealt with more in his 3 months on this planet than some people have to deal with their entire lives.. and yet he is rocking this CHD thing.

I am thankful for Jeremy for taking on this journey with me and taking a chance on Jack. When I can't take it any more, he takes it for me.. and vice versa. We are a team, and I love him so much for that. It's not easy, and it's not perfect but I think we are doing OK.

I am incredibly thankful for our amazing, supportive friends and family. They continuously go above and beyond to make our lives a little easier or to show their love and support. I have so many examples of this, I don't know where to start..

My sister Lynne and niece Gabby are frequent visitors and are always so thoughtful, helpful and fun. Last week they brought a delicious dinner and dessert.. and Lynne stayed here late to help me with a very rough bedtime.

Auntie Carole and Uncle Jimi came over with coffee, lunch and dessert and helped me with the kids. I've never had an easier time prepping dinner or washing dishes!

Auntie Becky has come by for numerous visits.. the last one included an entire meal complete with dessert.. and prizes for Evie of course. They love their Auntie Becky.. and so do I :)

Like I even need to explain how and why I am so thankful for this woman. She is 1 in a million. Everything she does, says and feels, I am thankful for! 

Our all time favorite Jersey family ordered dinner from our favorite pizza place and had it delivered after our last stint at Children's. We love you, Detura's! Even from miles away, we feel the love.

Our dearest friends Eric and Kerri sent us an incredibly generous gift card to Peapod, which you can do your food shopping online and have it delivered right to your house. This is going to come in especially handy when Jack goes in for surgery. You guys are amazing. xo

My mom's friend Diane sent her a note about how she prayed for Jack at the relic of St. Philomena.. and how she continues for pray for him and all of us. I was so moved by her thoughtfulness. This coin will be with Jack when he goes in for his surgery, and we will cherish it and keep it close to him forever.

I'm also blown away and touched by all the messages I've received of love and support from so many friends, family, coworkers, acquaintances and perfect strangers. This blog has been such an amazing tool to reach so many people.. and I am so touched that you all care enough to read about Jack and this incredible journey.

Next post will hopefully be in 2 weeks after another successful appointment with Dr. Ronai. Keep thinking of Jack! I will keep you posted.

xo Marissa

Some pictures...

O2, oh two. Oh no.

Jack has both oxygen tanks and a big black machine that converts the oxygen in the air to medical grade O2. This machine has to be plugged in and limits how far I can move around the house while holding him.

Evie is in the midst of potty training. Today she was really happy and excited to use the potty. Jack was having a rough day and didn't want to be put down. In the middle of nursing Jack, Evie declared that she needed to pee on the potty, crossing her legs and squirming as she tried her 2 and 1/2 yearold hardest to hold it it. I asked her to hold it for just 1 minute while I finished up with Jack. She tried, but was unsuccessful. She missed her opportunity to have a successful potty trip because of me and my preoccupation with Jack. A while later she very enthusiastically announces she needs to use to potty again. I placed Jack down in his swing, the only safe place I can put him down that his oxygen reaches, and head to the bathroom to help her. She is so proud of herself when she sits on the potty, and I love to be right there to cheer her on. Then Jack starts to cry. I tell Evie that I have to go take care of Jack.  I leave her to tend to her brother, and I hear her start to cry from the bathroom. I calm Jack down and return to the bathroom.. She was struggling-- I think her stomach was upset. She eases up as soon as our eyes meet. Then Jack starts to cry again. And again I tell her I have to go take care of Jack. She bursts into tears and says "No mama, stay with me. Take care of me." A one, two punch.

Jack's oxygen has become this anchor keeping me just out of reach from my daughter. The rope that tethers us is just 2 hairs too short and I feel like I'm drowning-- no matter how hard I thrash and flail at the waves that just keep crashing into me.

There has to be some slack in that rope at some point. There has to be some sort of balance to be struck. Evie has been unbelievably patient. She amazes me just as much as her brother does. Until that fluffy unicorn named balance presents itself, I will take Evie's lead and practice a little patience.

Homecoming #2

Ugh.. discharge day is always SO long. They tell you by 12 noon the latest. It never is.

We had to wait for a doctor to come give him the all clear.. waiting. Then they had to show us how to use the oxygen tanks.. more waiting. Then we had to learn how to check his O2 sats.. and more waiting.. then we had to go over his discharge papers. In a feeble attempt to move the discharge process along, we asked Jack's nurse 3 or 4 times to take out the IV from his head. She would say sure every time, leave and never come back! Finally Dr. Ronai came by and took care of it for us. It was my least favorite part of all. They pretty much covered a quarter of his head and hair with tape.. which is why his nurse didn't want to do it.. it looked like it was going to hurt. It did. The poor little guy just screamed-- his tears were his pleas for mercy. Little white flags.

Then, finally, we were free. Jeremy pushing the carriage with Jack, Me trying to steer this ridiculous oxygen tank that I was already cursing 3 steps out of the hospital.

So we're home. What are we doing home for the next (hopefully) 4 weeks?  A few things.

1) Gaining weight... well Jack is gaining weight. I'd rather not.
2) Redressing the cath sight on his thigh. Since he is such a chubba bubba, he has role poly thighs and  his cath went right into a delicious fold.. leaving it at risk of infection. For the next couple days we have to clean it, dress it and try to keep it as dry as possible.
3) Jack has to wear his oxygen when we are just hanging around and when he is sleeping. If we go to visit family or something quick, we don't have to take it along.. which is nice because these tanks are a pain! Not to mention the tubes. UGH the tubes. Evie has already tripped over them. They never fit him right, are always too loose and they end up in his mouth 90% of the time.
4) We are "spot checking" his oxygen saturation level. If he ever dips down to the 70's with his oxygen on, Dr. Ronai wants to know.

The hope is to keep his oxygen sats up, continue to beef up and let his brain continue to grow. The motto for surgery? Bigger is better.

Thank you, everyone, for all of the love and support throughout this really long, tough week. Gigantic thank you's go out to everyone who helped us out by going out of their way  by watching Evie or coming to visit us at Children's.. Mom, Lynne Ben & Gabs, Ricky, Auntie Carole, Angie & the boys; you are all amazing.

Please continue to keep Jack in your thoughts and prayers over the next couple weeks. I will continue to keep posting updates as they come.

For now, it's good to be home. <3

(Thank you Auntie & Uncle! xo)

(Evie was very excited)

(Still happy after such a crap week.)

(Big fan of the mobile, thanks to Elizabeth from child life services)

xo Marissa

Quick update of the morning so far...

Jack woke up a very happy wee man today, with big stretches and smiles..

Jack has been weened off of his oxygen and they are keeping an eye on his o2 sats to make sure they don't dip back down. He has been hanging in the high 70's, low 80's all day which is great for him!

The unofficial official plan is for Jack to go home today or tomorrow with an o2 tank for the next month so we can fatten him up as much as possible for surgery.. bigger is better. I'm still waiting to talk to Dr. Ronai to get official word, but they are already working on getting a tank sent to the house. So Jack and I will be getting sprung sooner than we thought!

It's been really tough since we got here. We came in thinking we'd be here over night, which turned into Friday, then indefinite with surgery on the horizon, then after the weekend and now as early as today or tomorrow. I feel like a yoyo.. I'm up, I'm down. We were getting surgery and I was scared and unprepared, now we aren't and half of me wants to get it over with and the other half is happy to get to go home.

I just spoke with one of his nurses and she said it sounds like they may just want him to wear it when he is sleeping and also to just have a tank home incase he ever needed it at any other point. 

That's all I've got for now. Thank you for all the love you've been sending our way!! Keep you all posted!

xo Marissa

Remembering Isabella Dianne Sivert

We acquired a beautiful rocker in our room at Children's. I'm assuming it was donated by friends or family of a girl named Isabella Dianne Sivert. I was curious, so I googled her name.. she was a little beautiful little girl that was a patient here.

If her family somehow comes across this post, I just want them to know the comfort this rocker has brought my son Jack during this stay here on 8 East. When he isn't able to sleep comfortably in his hospital bed, he was able to snuggle comfortably on his mama as we rocked like we do at home. This chair has been pure magic-- as soon as we start to move, he is immediately soothed and at peace.

(Jack sleeping while rocking)

If Isabella's family is reading this, know that your daughter is not forgotten.. and I think of her every time I rock in this chair and look at my sons peaceful face-- and I will continue to think of her long after we go home.

xo Marissa

The Roller Coaster That is Our Son..

I was washing up when I got the call that Jack was in the recovery room after hJeremy and my mom were stuck on Storrow Drive so I headed down by myself. My sweet boy was sleeping peacefully as if nothing had happened.

He started to wake up and was very hoarse and groggy from the breathing tube and anesthesia. His nurse brought down a bottle I had just pumped to try and feed him with. He tried to take a couple sips, but winced and cried this awful, raspy cry that was not his. It broke my heart to hear such a foreign sound from my not even 3 month old baby. The doctor that had performed the cath came in to check on him. She then turned her attention to me and casually announced he'd have his surgery before going home. My heart sank and a desert formed in my throat. She kept talking but I couldn't hear her.. I shook my head and "mmm-hmm"ed her as the tears brimmed my eyes. She asked if I was OK and I could feel a tear stream down each cheek. His nurse felt my heartache and said "Oh mom.. it's OK". I somehow squeaked out, "He's just so little."

I sucked it up, wiped my face, kissed my baby and held him until mom and Jeremy walked in. I told them what the doctor had said. We would still have to wait to talk to his cardiologist and figure out what was going on and what was going to happen.

While we waited in the recovery room, Jacks o2 sats were dismal, dropping to the 40's and 50's. I heard the word transfusion and cringed. The thought of a strangers blood pulsing through my baby's body was not something I wanted to happen. Jeremy suggested moving his o2 sat probe to his hand because that's where they typically got a better reading.. and sure enough his numbers climbed all the way to the 70's!

Dr. T finally popped his head in, affirming what we were told, that he didn't want Jack going home until he had surgery, however which surgery that would be was still uncertain. He had to talk to the surgeon ango over the findings from the cath lab before any decisions were made and any surgeries scheduled. 

Finally, around 2:30 in the afternoon, Jack was moved back to 8 East. We all took a much needed break and headed to the Squealing Pig for lunch. When we got back, the nurses were walking in with syringes of blood and an empty blood bag. While we were gone, it was decided Jack would benefit from a transfusion. It would bump up his o2 sats until surgery. It took 4 hours and it did intact give him a nice boost. I asked his nurse if they do a lot of transfusions for cardiac kids and she said they do them ALL the time. 

After his transfusion, Jeremy accompanied him to a chest X-ray. The rest of the night was pretty rough for Jack. He was very congested, restless and fussy. Poor guy just couldn't get comfortable which everyone assured us was normal after having anesthesia. His nurse Danielle was fantastic-- she pretty much took him for most of the night. They had a little trip to the spa (tubby time) and he hung out at the nurses station and flirted with all the pretty ladies. 

He is doing much better today all around. His o2 sats are up, he is eating more and more, he isn't as fussy.. he is still very congested. He has been eating from bottles and not nursing. I think he's having a tough time getting use to nursing with the oxygen attached to his nose. We'll keep working on it.

Auntie Angie and Will came to visit us this morning with coffee and muffins! It was so great to have visitors and have a couple laughs after a tough couple days. So thank you guys! 

Dr. Ronai is back from being out of the hospital for the past week and came by to see us! He was at the nurses station when she came in and immediately turned back around to have him brought back to the room so she could hold him. Then we sat and chatted. She and Dr. T had been talking and she asked me how I felt about going home with Jack on oxygen for a month. I told her I'd do whatever she told me to do and whatever she thought was best for Jack. She went on to say that Jack is still a little small (despite is chubba bubba status) and that he would need a bilateral Glenn (1 on each side of his heart rather than 1 like they usually do). They are still waiting to talk to all the surgeons and to make a long story short, we are waiting to see if a surgeon looks at Jack's history and says let's not wait and do the surgery now OR if a surgeon says let's fatten him up a little more over the next month and hold off on surgery until then.

For now, Dr. Ronai wants to see what his o2 sats look like for the next 24-48 hours. If we go home for a month, we will probably get sprung from here after the weekend.. MAYBE Friday. 

Quite the roller coaster, no?! I would sit and ride this coaster forever for him... even if my seatbelt was broken. I'd hold on for dear life if that's what it took to get Jack well. 

Believe it or not, I started writing this post around noon... it's now 4:30. Despite feeling much better, he still needs lots of attention and TLC from his mama. This baby likes to snuggle.. and apparently he wanted to help me finish this post.

Dr. Ronai and Dr. T may stop by later tonite to check in. If not, I will def see Dr. Ronai tomorrow. Until then, I will be hanging with Jack here at Children's. 

I will update when I know more about what's coming down the pipeline.

xo Marissa

Bigger Than His Body Gives Him Credit For

We had Jack admitted to BCH yesterday. We got to admitting around 12:30 and he was in his room on 8 East by 1. He has a very cute 3 year old roommate.

They checked his blood pressure and o2 sats and didn't like the numbers they were getting, so he got the smallest, cutest oxygen tubes I've ever seen in his nose.

They whisked him off to put his IV in. I know it sounds terrible, but I hate being there when they put the IV in. He hates it. I usually make sure one of us is with him when he has one put in, but for some reason, I let the nurse take him without us. They brought him back with the IV in his head because they couldn't see any good veins in his arm.

It looks really awful when you aren't expecting to see it. It's an unsettling sight for sure-- I got a little teary eyed. But 10 minutes later, he looked like this..

..and was back to his normal, happy boy self! <3  

It was a long day for our man Jack. After being hooked up to all these tubes and wires, he had labs done, a chest Xray and an EKG. How many people does it take to perform an EKG on an infant?

That would be 3. 

Thanks to FaceTime, we all got to say goodnight to Evie and Grandma..

After all the testing was done and it was time for lights out, Jeremy went home to get some sleep. They gave Jack some fluids through his IV to keep him hydrated and he couldn't nurse after 4AM.. given his chubba bubba status, you can imagine how well that went over. Around 5, he woke up inconsolably hungry. His nurse, Danielle, and I tried to give him pedialyte and sugar water. Neither of which he was going for.. so she offered to take him around the floor in a stroller so I could get some sleep before his cath lab this morning. He loved his walk and he was a big hit with all the nurses.

Around quarter past 7, I went down to the 6th floor with him and met the nurses and doctors that would be doing his cath lab today. They are putting a catheter in 1 or both of his legs which will allow them to put smaller wires and tubes up to his heart to take pictures and get measurements. While they are in there, a couple other things could happen. They could blow up a little balloon to stretch out his pulmonary artery to stretch it out to allow more blood flow. They could also put in a stint to keep it open if need be. This could help hold off on surgery for a couple more months. He will be put under for the procedure. Babies sometimes are so relaxed that they don't breathe, so he will be on a breathing tube.

Once it was time for him to go to anesthesia, I had to give him a kiss and say goodbye. His nurse on 6, Brenda, was very kind and said she would call every half hour or hour to let me know how he's doing. 

I think the hardest part for me through all of this is his size. He is just so small. But he's bigger than his body gives him credit for (thanks, John Mayer... or John Mayo, thanks dad haha!). This is all so tough. But he's tougher. All the nurses comment on how strong he is, and they don't know how right they are. 

UPDATE:

I got a call from his nurse Brenda at 8:45.. she said Jack is doing great! 

I will update again once Jack is back on 8 and resting. 

xo Marissa

PS: a Big, gigantic shoutout to team Evie... we've got an army helping us out today so that my mom can come and be here at Children's with us. Angie, Nathan, Will, Lynne, Gabs, Ricky and Auntie Carole! The comfort of knowing Evie is with people she loves and people I know will take care of her is absolutely priceless to me. So thank you all so so so so so SO much! xoxoxo

For some added cuteness, because well, we could use some of that today... Jack dressed in his Sunday best for Easter :)