Tips for living at Boston Childrens for cardiac surgery

If you're reading this, I hope you don't have to go through heart surgery with your child.  But even if you don't, I hope that this gives you an idea of how life is in the hospital.  Before Evie's heart surgery, I was desperate for any information I could use to feel prepared to live in the hospital for a couple weeks.  Fellow parents on local Facebook groups were so helpful in speaking from their own experiences.  But I couldn't find anything online where someone wrote it all out.  So in the hopes that this helps someone, here goes.

WHAT TO PACK (besides your clothes)
  • Toiletry bag that hangs (no counter space in the bathrooms)--don't forget shampoo and conditioner and soap because none of that is provided.
  • Photos to put on the wall
  • Favorite stuffed animals for a touch of home and for nurses to use to prop up your child's arm or leg
  • Foam egg crate mattress
  • Sleep mask
  • Ear plugs 
  • Pillow for yourself with colored pillowcase so your pillowcase won't be taken away with the laundry
  • Pajamas you wouldn't mind being seen in (note: there are male nurses too!)
  • Hoodie--it gets cold in the ICU. 
  • Slip-on shoes so you can get out of bed quickly if your child needs you (or throws up in the middle of the night and you need to run around getting things).
  • Phone charger--the easiest thing to forget, and the most devastating thing when you don't have one
  • Gift cards to Au Bon Pain
  • Snacks so you don't go broke from Au Bon Pain
  • Sound machine for your little one (or you) because it's noisy during the night, esp around the nurses' station.  I purchased this one and it was great. 

My previous blog post on Pre-Op is here.

1. Room Situation.  There are varying types (doubles and singles) and sizes of rooms (rectangular, square, and trapezoidal).  It's really up to how critical the child is and what empty rooms there are.  I think we were pretty lucky. We were in the first hallway near the entrance, but not next to the door so that it was too noisy.  Evie got a room to herself.  The baby next door to her got a smaller room.  Another family we met had to share a large room with several other patients, with only curtains between them for privacy.

It's really hard to see your child hooked up to all the tubes and wires.  Sometimes they leave the chest open due to excess fluid.  Another mom told me to prepare myself, so I am giving everyone the heads up as well. Luckily, Evie didn't need to have her chest open afterwards. 

2. Sleeping Situation for Parents.  Honestly, the sleeping situation is great. Because if your child is sedated, this is the best time to go home and sleep.  I felt immense guilt at first, but the doctor and the nurses encouraged us to go home.  And when you realize that this is the most qualified and most expensive babysitter you'll ever have, you will gladly go home and enjoy it.  Having been a NICU parent already for 6 weeks, I wasn't as torn about this as other moms might be. There are sleeping rooms on the CICU floor and elsewhere that you can sign up for in the Center for Families once you have an official ICU parent badge (from the information desk).

If you do want to sleep in the ICU, there is a nice bench, cubby, and a privacy curtain with your name on it (for one parent). It's literally a window seat with a cushion about 3" thick.  It's actually not that bad--I prefer the bench to the pull out arm chair in the step down unit,  but because there's no shower or bathroom.  A note to the wise--pull down the window shade before you change your clothes--there's a privacy curtain for the people in the hallway, but don't give a show to the people across the courtyard!

3. Bathroom Situation: Just 2 single bathrooms outside at the front desk.

4. Food Situation: No food in the ICU rooms.  You have to keep your food in the family lounge and put a label with your name and date on it.  You can bring a covered drink into the ICU though.  You will start to hate the words Au Bon Pain, because that is the most convenient thing to eat (the cafeteria is under construction for the next couple weeks). There's also a Red Mango. Outside the hospital are Bertucci's, Boloco, Starbucks, and the Longwood Galleria Food Court.

5. Electronics: Phones and tablets and such are allowed, but you have to be careful to stay away from sensitive equipment (best to check with your nurse).

5. The Staff: We were impressed with every single nurse and doctor we met. The front desk staff were nice, but had to enforce the have-you-been-out-of-the-room-for-20-minutes rule.  If you had, then they had to call and make sure the nurse wasn't doing anything that couldn't be interrupted.
1. The Room Situation. It's a crib, an arm chair, a TV, and a bathroom.  If you are lucky (and staying longer than a couple nights), you will hopefully get a single room in the step down unit.  If you are not lucky, and if there is another patient the same age as your child, you will probably get a double.  Initially when we came for catheterization and Evie had to stay overnight, we were in a double (i.e. the worst room). 
Our single in 8 East

2. The Sleeping Situation for Parents.
 Imagine a vinyl-covered arm chair that pulls out. It's the kind in which your significant other might have slept in the Labor and Delivery room.  Can you feel the metal bar poking you in the lower back as you lie down?  If you're sleeping there more than one night, you probably understand that you'll want a foam egg crate mattress cushion.  It's worth the $14 at Target. 

The Worst Room in the Place: One of the moms on a Facebook group had warned me that the worst room on 8 East was the one across from the Treatment Room, where babies get their blood drawn, stitches removed, etc.  She was right--we heard babies screaming all night.

4. The Bathrooms. In the double on 8 East, the bathroom was on the other side of the room, so we had to disturb our roommates whenever we went to the bathroom.  This can be awkward in the silence of 3 am. And the shower was seriously about as wide as the arm chair.   If you get a double and need more room to move around to do your bathroom routine, look for the Tub Room near the entrance to 8 East.  When we came back after the Cardiac ICU, Evie got a cushy single across from the nurses' desk.  This was WAY better, and even had a tub (but who would actually have the time to have a leisurely bath while their kid was in the room??).

5. Flat screen TV.  There's also a Playstation in every room.  There are babies, little kids, big kids, and adults recuperating in this unit, so I think the Playstation is for the big kids (or adults who are still kids inside).

6. Electronics.  You are allowed to use your phone and electronics in the step down unit. Some of you have asked me how I could keep up with my blog when there was so much going on.  I typed with my thumb while I held a sleeping or g-tubing Evie.  There was nothing else to do!

7. Nutrition Room on 8 East:  This room has the parents' fridge, as well as a water/ice dispenser.  There is a supply of apple juice, ginger ale, milk, jello, popsicles, crackers, and bread.  I definitely helped myself to the apple juice, which somehow I am now addicted to after having Evie.

Yes, there are perks. When you've just dropped off your child in pre-op, your heart is heavy and you need somewhere comfortable to go.

1.  Hale Center for Families in Lobby
If you are interested in keeping your sanity during a stay, we highly suggest visiting the Center for Families.  This new center is solely for the comfort of the families. There are computers, sitting areas, toys for siblings, a library, a lactation room, a microwave, and a copy/fax machine. Free coffee and sometimes Starbucks snacks too.

2. This is Erick's favorite:  MASSAGES.  By the 3rd day there, the staff in the Center for Families knew our names.  I'm slightly embarrassed, but not enough to have done things differently.
Every Tuesday is Chair Massage Day in the Center for Families.  Tuesdays are also the day for chair massages in 8 East. SO if you are smart like my husband, you sign up for TWO massages on Tuesdays.

3. Chair Yoga. I've never done it, but hey, why not.  Dr. Emily Davidson, the former director of the Down Syndrome Clinic, is the one who runs it on Fridays.  It was a nice escape from the monotony of the hospital room. She even handed out little cotton rounds with lavender oil for some aromatherapy.

4. Reiki on Mondays and Wednesdays. I don't know much about Reiki, and still don't, but basically a Reiki practitioner (a nurse) touches you with her hands while you listen to relaxing music and lay on  your back on a massage table. Apparently when Erick had it, the nurse's hands got really hot and she said he had a lot of "energy" around his head and neck. I told him it was because he had "hot air." Haha. For me, I didn't feel much different--just sleepier.  It was nice to just lay there for 30 minutes.

5. Play Room.  In each wing of 8 East and 8 West, there is a play room for kids of all ages. I thought they wouldn't have anything for babies Evie's age, but they definitely did. Lots of books and toys. The Child Life Dept does an awesome job in making these available. 

6. Food Trucks. If and when you get sick of food from Au Bon Pain and the Longwood Galleria, there are a couple Food trucks that come each day in the driveway at the employee entrance downstairs.  We had some good burgers and Hawaiian food.  I also saw trucks for macarons, ice cream, and BBQ.

7. Sleep Rooms.  Sign up for one of these in the Center for Families early in the day, or you won't get a spot. If you live too close to Boston Childrens, you can't get one of these. One parent can stay in the room with your child, but the other would have to make other arrangements (unless you co-sleep and want to cram into the bed with your child).

8. Social Workers. Our social worker was extremely helpful towards the end of our stay. She made sure we got the medications we needed for Evie, even when it meant calling several pharmacies to see if they had Sildenafil in stock. She was still trying to find it for us at 4:30 pm on a Friday afternoon, and didn't leave work until she knew we had what we needed.  She also put us in touch with someone to help us apply for secondary insurance for Evie. Navigating the system is no easy feat, so we are very grateful.
So that's what we learned during our heart surgery adventure with Evie!  Hope it helps someone as their child joins the zipper club! Feel free to add comments with your own suggestions.

Evie with Grandma!

6 months stronger

Dear Evie,
Happy 6 months to my precious girl!  6 months ago, Mommy was both nervous and excited about this day because I knew that by then, you would probably have had open heart surgery. And now look at you--you came through beautifully and you are definitely getting stronger!  When you talk, you let everyone know you have something to say, and when you cry, the walls echo.  But I will gladly lose some hearing if that means that you are stronger and healthier. :)  Daddy thinks you will like art when you are older, because you like to stare at the artwork on every wall.  You love to suck on anything you can get your hands on. You love it when people talk to you, and give the best smiles.

Mommy and Daddy are so proud of you. Keep chugging along, little Evie!  You have already done extraordinary things in the first 6 months of your life! You are 6 months stronger!!

Why is the Itsy Bitsy Spider so effective?

Evie has definite musical preferences.  No, Mommy, I will not look at you while you sing The Muffin Man, and no, I do not know him.  But if you sing about that Glorious Spider going up the water spout, I will smile at you and look up into your eyes like you are a genius.

With the same curiosity that led me to look up why Sophie the Giraffe is so awesome, I decided to look up the Itsy Bitsy Spider, also known as the Incy Wincy Spider.

The Itsy Bitsy Spider was first published in 1910 in a camp lore book as an adult song.  Except it was originally the "Blooming Bloody Spider."  I'd much rather have a tiny spider than a bloody and expanding arachnoid, so I will keep using "Itsy Bitsy."  I found all this out from Wikipedia if you're interested.

As one of our good friends (DT) pointed out, Itsy Bitsy Spider is a song about hope, which is why Evie likes it so much.  I did a quick analysis of the note in my head and it's just 5 notes over and over again with a surprising dip at the last phrase.  C, D, E, F, G and a low G.  Twinkle Twinkle Little Star had more going for it with more notes.  Row Row Row Your Boat has similar usage of notes, and yet Evie sticks up her nose at it.  My best guess is that she likes the simple melody and the rhythm and doesn't care at all about the spider.

This brings me to nursery rhymes. Did you know that Mary really did have a little lamb who went to school with her one day because her brother told her to? The moral of the story is to listen to your brother because you may become the stuff of legends.  Baa Baa Black Sheep has its origins tied to a medieval wool tax.  I didn't realize it was so serious when I was singing that!  Anyway, it doesn't really matter what we are singing, because it's the music and rhyming that are helping with Evie's development.  That's a good thing, because half the time I have no idea what the words are!

One thing I do know, Evie stops crying and also eats better when I sing Itsy Bitsy Spider.  Before surgery, she drank 20 ml at a time. Last night, for the first time, she drank 58 ml!  That is a new record!  However, this was when I took her for a brief shopping trip, and she was kind of hot in her  car seat. So it may have been because she was hot.  The important thing to note here is that Mommy took Evie shopping and Evie drank more milk. So Mommy should go shopping more often.  Right?

Showing my daughter's chest

I have to laugh, because yesterday I showed a handful of people my daughter's chest.  I should probably not make a habit of that.  But I am just so amazed at the quick healing of her incision. 

Oh, alright, I'll post another picture of how it looks today.  You convinced me.

Amazing, right?

In all seriousness, I want to say how humbled I am when I think of how many people are interested in how Evie is doing.  We really appreciate all the prayers and the encouragement.  People I don't even know told me they have been following my blog, because a friend of a friend told them about it. We are up past 19,000 views, and I'm pretty sure they aren't all from my mom!

I posted a photo on the Zipadee Zip Facebook page of Evie in her hospital bed while snug in her Zipadee Zip, and 690 people I don't know Liked it or left a comment that they were praying for her.  Some of them asked for a blog site so they could read about her and pray more specifically for her.  They don't even know us, but they just want to care for us.  So cool!

 Ollie the oxygen tank is also eliciting namesakes.  My cousin's new pet tarantula is apparently named after Ollie because they are both things that we don't want in the house (according to his wife)!  Haha.  Speaking of Ollie, we left him at home this weekend!  The medical supply company won't take him back without an Rx from the doctor to discontinue oxygen, but we had a good weekend leaving him at home anyway!  It was such a great feeling to go into a supermarket with just Evie in her carrier. No oxygen, no stroller, no Pepe, no diaper bag.  It was her first time in a supermarket!

Another neat thing I'm noticing is that friends aren't just asking a general  "How is she doing," but rather a more specific "How is she recovering," or "Did she eat more the last few days."  This tells me that they have been reading my blog, and I don't have to start from the beginning!  I have trouble answering how she is doing, but I can definitely answer specifics about how she is doing with her current goals.

Life is getting back to normal now that we are out of the hospital.  Evie wakes up with a smile these days. She is still drinking more than she did pre-surgery, but still being pokey at it.  She turns her head this way and that, and then all of a sudden will chug 20-30 ml, and then decide she is sleepy or bored.  Ah, the ways of a baby.  She is still trying to clear some phlegm from having the breathing tube down her throat, and I think this makes her uncomfortable.  We are supposed to cup our hand and pat her back pretty firmly to help to loosen up the phlegm.  This is called Chest PT.  Evie seems to like being thumped on the back. 

I am also really enjoying dressing Evie in clothes that go over her head.  I know this sounds silly, but before I avoided clothes that went over her head (even onesies) because the stupid oxygen tube would get in the way and it was too much trouble to dress her in them. But now, I can slip things easily over her head!  Yay for fashion plate Evie! (Evie says: Mommy, I don't like it when you put things over my head or on my head.)

How did we get to 7 already?

This week is our 7 year anniversary.  How did that happen? I feel like we just got married last year!

Haha, I'm not sure I will ever look that way again after having Evie! While our wedding day was definitely the happiest day of my life, I think this year has been the best year of my life.  Not because it was easy, but because it has further refined us and made our lives fuller and richer.

A year ago, we were just starting to tell friends and family about Evie, but also digesting the thought that Evie likely had Down Syndrome. I was downing ginger ale like it was water, and craving pineapple.  And honestly, I was struggling with a tinge of sadness whenever people congratulated me for being pregnant, because I knew there was a strong possibility that my baby would have medical issues.  But one thing was for sure--Erick and I already loved this baby, and we were a team.

Today, Evie has so many people praying for her and just loving her, that I am overwhelmed with joy when I think about it.  With a rough start in the NICU and then heart surgery, Evie has emerged with a stronger heart, a strong personality, and quite a few fans. I am ecstatic to be Evie's mommy. 

Today, I love my husband even more than last year and didn't imagine that was possible. When I watch him with our daughter, I sometimes just sit there and grin happily because he is such a great daddy. Even when he decides to give her a mohawk! 

We may disagree sometimes on feeding strategies, what the doctor said, or why Evie is crying, but we also agree on how much we love her and will do whatever it takes to be good parents to her. Sometimes we are frustrated or just exhausted, but we do this thing called parenting together.  And every once in awhile, we get to slip out to see a movie. 

Here's to many more years of joy and stretching (both in life and physically, because Evie is getting heavy and our backs hurt) in this great journey we are on together!  I love you, Erick!

Evie says hi from home

Hi everybody!
I had a nice time sleeping in my own bed last night. Nobody woke me up at all, so I woke up with a smile. Seriously, why do they think it's good to wake up a baby, strip her clothes off, and put her on a hard surface to weigh her? And don't get me started on that big cuff they put on my leg that squeezes really hard. Geez. We were all glad to leave the hospital! 

Mommy and Daddy slept better than they did in the hospital too. I think we all were snoring at some point during the night!

Mommy says I talk a lot and that I'm really loud. I can't help it, Mommy! I have so much ENERGY! Play with me!!!

Daddy and Mommy are still trying to figure out my eating habits. I don't think it's very hard. Sometimes I'm not hungry and I just want to play with Daddy.  Other times I suddenly decide I want food and I let him know. Really loudly, so there's no question.  If they take too long, I start screaming so they'll know it's an emergency. I think they'll eventually figure it out.  I'm definitely drinking more than I used to!  My record is 50 ml, which is more than my previous 20 ml before I had heart surgery. 

People keep looking at my chest.  They seem to be in awe of how fast my incision is healing.  I don't think it's a big deal. I am a baby, after all, and babies heal quickly!  

Did you know that if a baby's clavicle is broken during labor, that it is completely healed in 2 weeks?  We are super babies!!  My heart doctor said I will probably be healed up in 4-6 weeks.  Then watch out, world!!

Hello from HOME!

Evie continues to surprise us. We thought we would be here another weekend. Today is Thursday, and we were discharged this afternoon!

Not only were we discharged today, but Evie drank all of the formula in her bottle quite easily!  The first time, she downed 40 ml, and the second time she drank 30 ml. While this is nothing to most babies her age, this is a huge victory for her. Thank you for your continued prayers that she would eat more and more by mouth. 
Today the stitches came out of her chest. The incision is already healing quite nicely.  

Evie is officially taking Sildenafil. The cardiology fellow said he will always remember us because he was surprised that a patient's dad really wanted his baby on Sildenafil, otherwise known as Viagra (if she needed to go on another medication for her pulmonary hypertension). He thought at first that Daddy was trying to get some for himself, but then found out that Evie's daddy works for Pfizer and since they make Viagra, we get it for free. I think the doctor was relieved that this was the reason! 

We had to say goodbye for now to some great people!  First, our surgeon, Dr. Quinonez, otherwise known as Dr. Awesome.  He has really changed our lives, and we are forever grateful. We have a stronger Evie because of him.

Also Patti M, who checked on us almost every day and made sure we got a good hospital room. 

We definitely needed a pic with Dr. Uncle Doug Mah, who came to see us almost every day as well, and used his charm to make everyone be extra nice to us. 

On the way out, one of our favorite nurses was there, and of course we wanted a picture with Lily! 

We were very ready to leave! We got a Discharge Buddy to help us push a cart of all our stuff to our car. I expected an elf when they said Discharge Buddy, but she was a nice nursing student who looked nothing like an elf. 

We are now happily at home, and one of the mommies from church already dropped off a piping hot meal for us!!   

Now begins all the follow ups and Evie's incision and sternum need to heal.  These next few months should be interesting as we work with the feeding and swallowing team to assess her risk for aspirating fluids and maybe try some purees soon!

But for this weekend, we are just going to relax and enjoy being together at home!

Pack your bags, Ollie!

Last night, I woke up every 2 hours because I was afraid Evie was spitting up because she kept making gagging noises in her sleep ( lots of phlegm still). At 1:30 am I told the nurse that her oxygen levels were drifting. The nurse said, "that's because she's off oxygen." I said ok, and went back to sleep, knowing that they were seeing how she was doing in room air. 

In the morning, the nurse announced we were taking off her oxygen tube. I did a double take and had to ask her to repeat herself.  She said that Evie had been breathing well on her own all night.  This is not only amazing in its own right, but also because the surgeon (let's just call him Dr. Awesome) had thought we might even have to still go home on oxygen.  Today, Dr. Awesome was surprised too!  She still needs to improve her oxygen saturation levels even more, but it's looking good!

This is Evie the moment she got the oxygen tube off her face. The tape holding it on was huge, so I don't blame her for crying when it came off. 

It's funny how I prayed for her surgery and recovery to go so smoothly that we would be surprised. But then when it actually happened and God answered all of our prayers, I was surprised and now feel sheepish about my surprise.   After all, I did tell Dr. Awesome that we were praying for his hands to be steady.  And he made an incision that a cardiac ICU nurse later said was the best she had ever seen.  Dr. Awesome and both of our cardiologists warned us that we might have to go home on oxygen and wean her off. But God answered our prayers and surprised them all. 

I walked around the room and down the hallways with just my baby and me. No Ollie the oxygen tank and a big plastic tube in her nose.  It still gives me a thrill to walk wherever I want with my baby in my arms. 

We are asking God for more surprise answers to prayer because Evie has forgotten how to suck from a bottle since the surgery. We were warned this would probably happen, so it's not unexpected. It could be a long road ahead to teach her how to eat completely by mouth and not by g-tube.  If that is the case, teaching someone to care for her would be more difficult.  The feeding team at Boston Childrens will be helping to assess when we should re-test her ability to swallow liquids without getting any into her lungs. So if you are the praying type, thank you for praying for this too--it would really be a miracle to have her re-learn quickly how to eat by mouth and without aspirating. 

Most of all, thank you for celebrating with us about this huge victory with her oxygen levels!  PACK YOUR BAGS, Ollie the oxygen tank!

Setting up our new digs

Evie and Daddy spent the first night in the Step down unit here on 8 East.  She got a mobile to look at while Daddy slept. 

The mornings are always busy because the doctors and nurses do their rounds, set the plan for the day, draw labs, do chest x rays and EKG's, etc. Today's plan was to pull out the lines that would have been used for a pacemaker if she needed it. But Evie doesn't need it, so see you later, pace lines!!  

When I walked in today, Evie saw me and gave me a big smile and started to tell me about her day. That is the best mommy greeting ever!  She seems to feel better today.  She's still fussy and tired, but overall looks even more herself today. 

The biggest thing we want to see is that when we try her off oxygen in room air, that her oxygen saturation levels get as close to 100 as possible. Right now they are in the low 80's, which is not acceptable. It's still early, so she has time.  But that's the biggest thing you can pray for--that we can get rid of Ollie the oxygen tank!

Today Evie also switched from continuous feeds to Bolus feeds, which means she doesn't get a continuous flow of formula through her feeding tube, but gets food at regular meal times now.  She won't be trying a bottle for a couple more days. 

I've tried to make her room more homey. She has stuffed animals everywhere, photos of us, and some pictures drawn by her friends M and J! 

Thanks for all your comments in celebration with us that we left the ICU!  We feel so loved and taken care of! 

A letter to my fans, from Evie

Hi everybody!
I had a good night last night! 
My eyes have now stopped crossing from the strange drugs they put me on, and I see 1 mommy and daddy now and not 2 mommies and daddies.  

I graduated from the ICU this afternoon! I am in a nice single room and don't have to share with another baby.  Everyone says how alert I am. Drugs can't hold me down. 

This is my new room!
Now I get to rest and get some more phlegm out of my chest. I still have some lines and IV's, but a lot less than before.  All the nurses think my Zipadee Zip is magical too, because I'm a lot less wiggly when I wear one. 

I look pretty good, don't I? For those of you curious to see my incision, Mommy is posting it for me. If you don't like seeing those sorts of things, then don't look at the picture at the end. The nurse last night said its one of the best incisions she's ever seen! I don't know what that means. I just know I have a huge sticker on my chest. I will miss the nurses in the Cardiac ICU. They were very nice to me.

Speaking of nurses, one of my primary nurses from when I was born at the Beth Israel NICU came to see me today! Maureen is one of my favorite people, even if I didn't show it today when she visited. I screamed a lot because I had a lot of bubbles of gas in my tummy. Then I screamed because I had to poop. Then I cried because I wanted Daddy to pick me up. Nothing personal, Maureen! I am very glad you came to see me now that I am so big!

No one knows how long I'll be here in my new room. Mommy and Daddy have to take turns staying with me and playing with me. They are hoping it's only for another week.  Talk to you tomorrow, big people!

Here's the picture of my beautiful incision!

The breathing tube is out!

The breathing tube has successfully been taken out. At first Evangeline was crying silently because her throat was so hoarse.  But she gained some steam and was letting us know that she was not happy.  I wish I could pick her up, but she still has too many lines in.  If I sing The Itsy Bitsy Spider, she stops crying and looks at me. As soon as I stop singing, her lower lip comes out and she starts crying again. I'm starting to think I should record my voice and just play it instead. 
This was Evie before the tube was taken out. 
This was Erick trying to keep Evie entertained, because she kept remembering she was unhappy and would cry. Thank God for Tylenol!
This is Evie finally drifting off to sleep and getting some food into her tummy via g-tube. Doesn't she look more comfortable? She won't be able to try a bottle for a few more days because she is still too weak. There is also still a risk of aspiration, which means that liquids can go into her lungs when she drinks due to a floppy airway. We don't need pneumonia to complicate her recovery. 
It's looking like Evie will spend the weekend in the ICU for monitoring, but we are making good progress.  

Our friend who is a cardiologist keeps making sure that everyone in the ICU knows that we are his friends and to treat us well.  We've had some meals dropped off too. We are so thankful for such a supportive community! 

Please pray that Evie will rest well and not be too uncomfortable to sleep. She doesn't understand why Mommy and Daddy don't pick her up.  I found another use for the Zipadee Zip though!  She usually likes to suck on her arm when she's wearing the Zipadee Zip, so I put my finger in the arm and stuck it in her mouth. Worked like a charm. (Pacifiers make her gag.) Thank you yet again, Zipadee Zip! 
We can't wait to take Evie home! Not sure when that will will probably be another week here. 

Still waiting

Evie continued her reputation of being hard to sedate last night!  We came in this morning expecting to have her breathing tube out today, but because of her poor sedation, increased carbon dioxide levels, and slightly acidic pH if the blood, it was not safe enough to take out the breathing tube. 

So the bad news is that we are set back another day, but the good news is that she still overall looks good, and mommy and daddy get to sleep at home another night. 

We are still not ready for a ton of visitors yet because we are in the cardiac ICU. Hopefully things will change over the weekend and won't be so intense.  Our friends who work in the Longwood hospital area have been checking in on us, and we are so grateful. 

Thanks for your continued prayers! 

Feisty Evie and the Drugs

Hi from the Cardiac ICU! Evie is doing ok--we are waiting on some of her puffiness to go down (i.e. Letting her pee it out).  
Her blood pressure is a bit elevated too.

The funny thing is, Evie won't let the sedative meds hold her down. She has been moving around quite a bit. The nurses are calling her "feisty" and "rowdy." It's good to be feisty, but not when you might pull out the tubes that are helping you!  She opens her eyes sometimes to look at me.  She's not in pain though. I keep telling her I'm sorry she has a breathing tube. The nurses assure me she is ok. But they don't want her to be so awake that she's moving around. 
 They propped her up with Pink Dog and Ultimate Warrior Bear, so she is now nice and snuggly. (Shoutout to Doug for coming to tell me that I am allowed to take pictures!)

Now the team is discussing how to keep her sedated safely. This baby burns through the drugs like they're nothing! That's my strong girl!  She looks really good. If she didn't have all those wires, she looks like she could just get up and look around. I also swear she got bigger overnight.

At lunch today, I met another mom and dad with a  9 month old girl here in the cardiac ICU. Little Ellie has Down Syndrome, just had heart surgery and has a g tube too!  It was nice to meet a family who are walking a similar journey. There is a certain automatic kinship when you meet someone who understands any of those things, not to mention all 3 of those things!  

It's looking like tomorrow she will be woken up and they will remove the breathing tube. Tonight we get to have one more night of good sleep at home and then we will be on active duty watching over her as she gets transferred to the step down unit.  We would really like to see her blood pressure go down on its own. 

Sleep well, little Evie! 

Evie's Adventures in Storyland, from a sensory sensitive kid's point of view

Hi Evie fans!  Our first post-pandemic trip was to the  Storyland amusement park in Glen, New Hampshire !  Evie did well with the 2.5 hour d...