Mama, I'm Coming Home

Mr. McKay is scheduled to come home tomorrow! Today was full of activities. They put him and us through a number of minor tests to make sure McKay is able to come home and that we are able to take care of him by ourselves.

First, the day began with a car seat test for McKay, which he past with flying colors. McKay must be able to sit in his car seat and keep his oxygen levels stable in order to come home. Then, Mindi and I attended an infant CPR class. The class involved an inflatable "mini-baby" and we had to practice CPR in front of the nurses to make sure we were doing it right. As a special bonus, we get to bring home "mini-baby," so if any of you need practice, let us know.

After that, we had to demonstrate that we were able to hook up his portable heart rate monitor. Not everyone in the NICU was too pleased as we kept setting off the alarm trying to figure out how to attach it to McKay.

Tonight, Mindi was asked to stay the night with McKay. This is his (and ours) final test. They disconnected the monitors and have Mindi taking care of him and feeding him on her own all night.

Overall, it was a great day. McKay loves to be held and, like his brothers, likes to eat. We anticipate him being discharged tomorrow from the ICU.

p.s. For all those wanting to comment, we changed the settings so you can do it without creating an account. Also, special bonus points if you know the origin of the post title.

Did you bring your car seat today?

"Did you bring your car seat today?" Have you ever heard a more beautiful sentence?! Those were the first words our nurse, sweet Earl, spoke to us this morning. As my mind try to sort through the question and my heart swung like a pendulum between feeling terrified and overjoyed, I managed to blurt out, "No. Why? Are we going home?"

Earl then explained to me that cardiology signed off on McKay this morning, told Earl to remove the feeding tube and let McKay eat when and how much he wants. As long as that goes well through Saturday, we are all set to be discharged on Sunday!!!!

Our babe looked so out of place in the ICU today I almost felt guilty. I pulled the curtains around his bed space and spent the afternoon cuddling and feeding him. Finally, all the tubes are off save one precautionary IV start in his tiny hand. He is on his way to looking and living like a healthy baby.

Of course behind the scenes there will be reminders that his tiny body is anything but run of the mill. We were trained on a cardiac apnea machine today that will monitor McKay's heart rate and breathing while he sleeps. We will take a CPR class tomorrow and receive our schedule of follow up appointments. All small changes we can learn to live with.

We have learned not to get too excited because plans can change at the hospital, but it's hard not to put hope in the belief that our baby will be coming home this weekend. If anyone can make it happen, it's McKay. He is an amazing little miracle who has exceeded everyone's expectations. Here's to preparing for a happy homecoming!

Success!

In what is becoming typical McKay fashion, little man worked his way through his first bottles today like a champ. The nurses said we should consider this a major victory and we do. It was amazing to watch him tackle this new challenge and figure it out quickly. It took a considerable amount of energy for him to accomplish as well. Apparently heart babies can actually burn more calories eating than they consume during the feeding. That's why he not only has to demonstrate an ability to consume all of his feeds for 48 hours before coming home, but also the ability to gain weight during that time frame. He was up one ounce at his weigh in tonight, so he's headed in the right direction!

We also got the all clear on McKay over sat-ing on room air. The cardiology team said that if he's oxygenating on his own at higher than expected levels, then they can live with that. I'm glad for that. Although I understand that 100 percent saturation can cause his heart to work too hard, skimming away oxygen didn't make a lot of sense to me.

The final, less medical milestone reached today was dressing McKay in clothes for the first time. He now has few enough lines and IVs that clothes are okay. I know that doesn't sound like a big deal, but it felt like an important step for me in making McKay feel and look like a normal baby.


I must say that seeing McKay feed and get cozy in his soft, new sleeper made me want to pack him up and take him home right then and there. For some reason that victory turned a reason to celebrate into a weepy day at the hospital for me. I don't know how families do this for weeks, even months on end. It's not only exhausting, but there is an empty feeling in our home without him here. I guess although I've always been devoted to our new addition, I have now officially fallen in love. And as love goes, the world doesn't look the same when you're separated. We pray the progress will continue to be great and the wait to be together when and where we want will be short.

Just One More Hurdle

Mr. McKay continues to amaze. He is now officially off of any type of breathing support and he keeps "high sat-ing", meaning that his O2 levels are actually higher than they expect for heart patients and we may need to consider methods for controlling how well he's oxygenating his blood...crazy, we know.

We have just one more major hurdle to clear before McKay can come home--eating. They moved his feeding tube into his stomach today (and if you're wondering how they do that...they just pull out the appropriate length of feeding tube from his nose. I know, pretty gross). It made the poor babe sneeze up a storm to have about 10 cm of rubber tubing pulled through his nose to move the tube from his gut to his stomach. He is tolerating the milk in his tummy well and they will let me try to feed him his first bottle tomorrow. I am thrilled. If I can get my tough guy to swallow well and keep the feeding down we will not only get rid of that ugly yellow tube up his nose, we will also be packing our bags in the next few days.

His night nurse says he's been fussy tonight and wants to be held all the time. That's a good thing. Some of these babies don't want to be touched after having to be left alone for too long. Apparently his fussiness has earned him a bouncy chair and music system that is helping to keep him happy. Go McKay!

I must say that Primary Children's is the most amazing, inspiring and tragic place I've ever spent time. There is so much hope there, so many miracles performed by skilled doctors and nurses, and yet there is a heaviness to the air there that I can only explain as a feeling of mourning. Not necessarily always a mourning for the loss of a child, but it's a mourning for time lost, a permanent change in an awareness of our mortality, and a life-changing awareness of how fragile our lives really are.

We have been touched by some very special nurses and doctors that have seemed to take an extra special interest in McKay. (They probably make all of their patients feel this way.) Never have we felt like like a number. Never has any question we've asked been dismissed. Never have any of our middle of the night phone calls to his nurse felt patronized. They have incorporated us as partners in McKay's recovery and that makes us feel like something very special...we feel like his parents.

It's those relationships we've built over the past week (has it really only been a week???) that will that will make our return visit in a few months bearable. But we can't worry about that now, it's nearly time to bring McKay home and feel like a complete family again. Thank you for your love and prayers.

On His Own

Just a quick update...They have turned off McKay's oxygen support completely and he is breathing well on his own. We are waiting on a blood gas test to confirm he is able to hold his levels in a safe zone. Cross your fingers. Hold your breath. Say a prayer. We would love to take our little man home under his own steam.

On the feeding front, McKay is starting to get hungry. I'm hoping they can move his feeding tube from his intestines to his stomach today. It's one thing to be nourished and quite another to feel full. McKay is aware of the difference and is fussing quite a bit about it.

A Day of Rest for McKay

Today was a great day for McKay. It was his first day without any major procedure and so he had a chance to rest. When we arrived at the hospital today, McKay was wrapped in a blanket and looked so peaceful. Mindi actually had the opportunity to hold him for awhile. We also got to hear McKay really cry for the first time today, as his throat seems to be feeling much better.

McKay continues to improve each day. We are so amazed at his progress. He has progressed so much that they moved him to another room and has now been "downgraded" and is sharing a nurse with another baby in the ICU.

McKay's brothers visited him again and brought their usual trail of chaos. Preston ended up with an ice pack as a result of some Kung Fu moves he did trying to impress McKay's nurse. Needless to say he got her attention.

Thanks for all your comments, interest, and prayers, they have truly been uplifting.

Fabulous Firsts

It has been a day of good beginnings. We started by taking Ty to his first day of Kindergarten. He was so cute in his uniform and so excited to find friends in his class and a new playground at the school. Before school we had a little photo shoot in the front yard (don't you remember doing that with your parents?). Although the little ham gave us many poses to choose from, I have narrowed it down to one for you :).

As for Mr. McKay, he not only came off the ventilator today, but also started taking milk through his feeding tube. They have to start feeding heart babies through a tube for several reasons. First because they are not allowed to eat until after surgery because it would divert blood from essential organs to the stomach and intestine for digestion. Often there is not sufficient blood flow to accomplish digestion and the gut begins to shut down -- that's really bad. So they withhold feeding until it's confirmed that the heart is creating sufficient blood flow for digestion. After a solid echo cardiogram this morning, McKay was cleared to start receiving real food! They will see how he tolerates feedings directly into his intestines, then pull the tube up to his stomach, monitor that and then do a swallow study to make sure he's ready for a bottle. Hopefully he'll be able to get the hang of sucking after spending the first five days of his life with a breathing tube holding his tongue down. Many heart moms say the hardships of surgery are nothing compared with the ongoing challenge of feeding these babies. Cross your fingers for us that McKay will beat the odds and come home feeding like champ.

McKay got big visits today from aunties, friends, grandparents and one of his great grandmothers. Although he feigned sleep when his guests were there coaxing him to wake up and play, the minute they left he seemed to crack an eye, look around and then wake up for a good 45 minutes and make faces at Matt and me. What a crack up. He will definitely be able to hang with his crazy brothers. His sweet eyes made it very hard to leave tonight.