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.

Look Mom, No Tube!

McKay was just extubated (they removed his breathing tube) and he is showing off how well his little lungs work. The actual extubation was a little rough. They have to pull out a large tube the size of his trachea that has sat at the top of his lungs since just a few moments since birth. Then, almost worse than the actual extubation, they had to scrub the adhesive from the tape holding the ventilation tube in place off of his face. You have never seen a more irritated baby!

Aside from now being able to see his gorgeous face and little lips, the best part was hearing a tiny little cry come from deep inside his fired up little body. We have not been able to hear him cry until now. And although his screams were scratchy due to what the nurse called "the worst sore throat of his life," we could hear him. Awesome.

He is resting now from all the excitement and breathing like a champ. They inserted a feeding tube earlier today and he is using a nose cannula right now so we are not totally tube free, but we are moving in the right direction. They say he will probably be moved out of ICU in the next day or two if he continues to shine like he has.

Thank you so much for all of your love and prayers. We truly can feel your strength and feel so buoyed up and blessed by it. I will post pics of McKay's new look tonight. Much love to all.

What a Rock Star

McKay has given us another extremely encouraging day. We walked in this morning and Mr. Independent was in the middle of a spontaneous ventilator test and doing well. I was so excited I started to cry. Basically that means they had turned off McKay's ventilator support for a short trial to see if he could hold his own. He did beautifully. Immediately following the test they sent a blood sample to test for gas levels in the blood that indicate whether or not the exchange of O2 and CO2 and other chemicals in the blood show that McKay is not only breathing, but doing so efficiently enough to exchange gases and such in his system.

Unfortunately McKay's pH was a bit too low (just .01 low!) and his pCO2 levels were slightly high. So they gave him a few hours to rest and repeated the test later on in the afternoon. Although he breathed beautifully on his own through the test, the blood test results came back nearly identical to the morning results. At that point the Intensivist said McKay would not come off the ventilator today, but they would retest him sometime during the night tonight and again in the morning and if the blood gas tests came back the same, they may reconsider what "normal" levels mean for McKay. All in all if he continues to perform as consistently as he did today, they will most likely move forward with taking out the ventilator.

Although it was a little disappointing not to see that ugly tube removed today, I am glad the docs are letting McKay call the shots. When he's ready, he's ready. The worse thing we could do at this point is rush him along. He did have his chest tube and catheter removed today, opened his eyes again for a about 30 minutes and visited with his bros again. It was wonderful to see him look around and connect. Every day there are fewer tubes and more baby to look at...now if we can get him off the ventilator tomorrow we will get our first chance to see his face, free and clear. I can't wait.

I have to keep reminding myself that he just four days old...just four days! My sweet boy has performed like an absolute rock star through all we've asked him to do at this point and I feel very confident he will continue to improve each day. He has gone through more than many of us will have to endure in a lifetime. My only comfort about that reality comes when I realize that without this experience we would most likely be saying goodbye to our sweet boy instead of looking forward to the beginning of a lifetime together. I truly believe he is a remarkable spirit who has made great sacrifices to come to this life and teach others about courage, priorities, and love. At least those are the lessons he has started with me.

Not so fast...

Scratch that last post. In the last hour McKay has put on quite a show. He started to open his eyes and eventually spent quite a while looking around. While I talked to him and told him about all there was to see in the world he seemed to grow more and more alert. But as all good things go, I guess we got a little greedy. We got McKay so excited about being awake that his respiratory rate went far too high. We backed off and waited for him to calm down. It was then it seemed he may have realized that not only was he awake and looking at the world, but that he was also in some pain from his surgery. The nurse gave him a small dose of morphine and he has calmed down now and headed back into the fog of rest and healing.

It was amazing to see his little eyes for the first time. That is always something I've taken for granted with my other babies. In fact, it seems we spent most of our time trying to get them to close their eyes...ironic, isn't it? Here's to another small victory!

Take a Deep Breath

McKay is doing well today and is comfortably resting after surgery. Today the doctors and nurses are playing with his ventilator trying to reduce the work that it is doing for him. The goal is to get him to breathe all on his own, but for now he seems content to take baby steps toward that goal. This means that he has taught the doctors to slowly, scale back his ventilator. He does not like any sudden changes.

He is becoming more and more responsive to touch (as the morphine fog lifts), but has still not opened his eyes. The plan is to try to get him off the ventilator as soon as possible. After that is accomplished, we can move on to the next step, eating.

A Fearless Heart

What a day. We feel awful it has taken us so long to post. Today (I guess it's yesterday by now) was McKay's first big hurdle--receiving his BT shunt. The day started with the details trying to take over. After some drama getting myself discharged from the hospital, we finally got over to the NICU to spend time with McKay before his surgery. They were a little concerned with some rising bili levels so they ordered a light and had him suntan for a few hours (see pic below). He liked the lights and his stats did very well all morning.

Then the surgeon came in to explain all that would happen during the operation. It was overwhelming and a little too real at times to listen to and believe he was talking about my baby. But we put our faith in our choice of surgeon and his skills and in God to guide him through the procedure. It turned out to be faith well placed. McKay was out of surgery in about three hours and all went beautifully. Even better, the method the surgeon choose to insert the shunt involves a large incision that starts on the right side of McKay's chest and runs around to his back. That means no zipper up his sternum for now (and no scar tissue to have to work through for his second surgery in the months to come). Before we knew it we were back at our baby's side cheer leading him on.

Although a bit swollen and battling to regulate all of his many tiny body systems, for the most part McKay is doing extremely well tonight. He is an absolute champ. We can truly feel the fire in his spirit and have witnessed his gift for connecting people. We are exhausted, but honored to be a part of this journey with him. He has already given us a life changing two days. My advice? Kiss your kids and wonder at the miracle of your body.

Earl is the MAN!

Just can't sleep until I share a small victory. Matt and I decided about 10:30 tonight to walk over one last time to the NICU and give McKay some goodnight loves before his big day. When we arrived, his night nurse, Earl, was there to greet us and had a portable scale close by. He said he was hoping we'd swing by because he was planning to weigh McKay and he thought we'd like to be there for that. When I said I was excited to see him do that he told me he had even bigger plans for the night. He called over another nurse and after ten minutes they figured out a way to wrap up all of McKay's tubes and monitors and laid him carefully in my arms. I got to hold my baby!

Although it only lasted 20 minutes, it resulted in about an hour's worth of work afterward for Earl to straighten out all of the cords and leads we tangled in the process. What an unexpected gift to feel the weight of my baby in my arms and smell that sweet baby smell! I left a big lipstick kiss on Earl's cheek tonight. He gave me an experience that may get me through the next couple of weeks. Thank you Earl!

Little Man, Big Day

It's been quite the day today. Baby McKay has received more attention than any new being should have to endure in his first 24 hours on the planet.

In the NICU, McKay is assigned his own private nurse. At first I wondered how in the world one little guy could keep a skilled ICU nurse busy for an entire 12-hour shift? But that's only because I didn't understand the level of care McKay would receive. It was absolutely amazing to watch his nurse take care of him today. She knew every level of every blood gas, every drug in his system, every ounce of anything that went in and out of his tiny body; making fine and important adjustments all day long. It was remarkable.

While McKay's levels tend to hug the fringes (sometimes too high, others a bit low) of "acceptable" he has managed to stay the course today and remain stable. Late this afternoon we learned that he is on the schedule to have his first surgery tomorrow. He will undergo an operation known as the BT or Blalock-Taussig Shunt. The surgery involves sewing in a length of artificial tubing between a branch of his pulmonary artery and aorta to make it easier to regulate blood flow to the lungs.

The cardiology team orginally thought they would delay surgery until Monday or Tuesday of next week because McKay was able to stay so stable. As I watched him lay there today, never opening his eyes, not able to make a sound even when he tried to cry because of the ventilator in his throat, at 24 hours old not knowing what it feels like to be held and cuddled and loved on like every baby deserves, I prayed that somehow the surgery could come sooner. It is not enough to watch your child be stable--every parent wants them to thrive. So by some miracle, McKay made it onto the surgery schedule for tomorrow afternoon and while that is scary enough, my only thoughts are that we get to go from being stable, to active healing and then going home that much sooner.

So much has happened today I can hardly believe it has just been one day. One of the most important events of the day was introducing Ty and Preston to their new brother. While Preston counted his toes and then searched my purse for gummy bears, Ty helped rub lotion on McKay's arms and legs and asked the nurse what each and every tube did. And with each explanation, he nodded along agreeing that that's what he thought the tube did. The nurse thought he was a riot.

We are nervous, anxious, excited and exhausted as we wait for tomorrow and our step closer to bringing McKay home. Here are some special pics from our busy day. Much love to you all.

Sweet Dreams

McKay had a pretty uneventful first night. They were able to reduce the amount of oxygen he is receiving to near room levels, with one exception. McKay has decided to hold his breath when the nurses poke and prod him, just to show that he's in charge.

Welcome Baby McKay

McKay Theron Cox was born today at 2:29 p.m. weighing in at 7 pounds 6 ounces and measuring 20 inches long. After an eventful delivery, he was whisked away to the ICU where he was stabilized and then transported to Primary Children's Hospital where he is currently resting. He is such a strong baby and came out kicking at the Doctors who were trying to deliver him.

Tonight Mindi and I were able to visit McKay in the NICU and give him his first bath. He is hooked up to a lot of machines, including a ventilator, but seems to be tolerating his situation. We met with a group of cardiologists today and they confirmed his diagnosis with a few minor changes. We will meet with them tomorrow to discuss surgery options and when they will operate.

Words do not describe what occurred today, so we have attached pictures. We appreciate all of your prayers and support.

Packed Bags and Polished Toes

I think the last unofficial stage of pregnancy is a pedicure...don't you? I mean it's always nice to have great looking feet, but never does it seem more critical than on the delivery table. Come on girls...you know exactly what I'm talking about. So as of 2pm today, my French pedi is complete and my bags are packed (again). I am truly excited to have this little guy. Although I feel nervous about all that's to come in the next few days and weeks, I feel we are truly ready and willing to face it.

I put a call into the fetal heart coordinator at Primary's on my way home from the spa this afternoon and asked her to walk me through everything one more time. Where will our baby be and when? What will the doctors be doing? Why do they do that? When can I see him? When can his brothers meet him? She was so patient and kind, I felt at peace again that he is in the best hands we could ever provide him.

So many unusual things have happened over the last week and I've had to confront so many emotions I didn't plan on dealing with that I think our mini-delay may have been a very healthy experience. I hope I can learn sooner than later that God's clock is most definitely not my own. (That's a really hard one for me!) Last Thursday I received an email from a woman in Maryland who stumbled onto our blog and shared the story of her now six and a half year old son and his experience through all the operations associated with DILV (and the overwhelming and amazing story of how he battled Leukemia between surgeries--Can you believe there are such amazing people out there dealing with things like this when sometimes the most pressing thing in my day is whether or not my boys will take a nap or not?). She sent pics of him playing at the beach and ascending a climbing wall...just like a normal kid. It meant the world to have such a positive glimpse forward. That makes just two families we've found with the same diagnosis -- one in Boston, the other in Maryland. What gifts they are to us.

Isn't it amazing how the Lord connects people? We feel so encouraged by these families and the positive juju they share. If I've learned anything at what is the beginning of this experience with our special little man, I have learned that the big picture is all that matters. And although I love to manage the details, they are just details. So think big! Pray big! Thank big! And big hugs from all of us to you.

Hooray, Hooray for Wednesday!

I think we're ready to try this again...They've rescheduled us to have our little guy bright and early Wednesday morning, August 20. I feel like jumping up and down, but am hesitant to get too excited after last week. It just has to work out this time, doesn't it? As I mentioned before, that is also my grandfather's birthday and we are giving this little wonder his name as a middle name which makes that date all the more special. Thanks for celebrating with us. We'll keep you posted!

Update

Not too much to report except that I am meeting with my OB Monday morning to regroup and come up with our plan for the week. He said the baby will definitely arrive this week, we just have to determine when will be best. Interestingly, my aunt called this week to remind me that my grandfather's birthday (the baby's namesake) is Wednesday, August 20. Although he passed away nealry 17 years ago, I have to believe he is still watching over those spirits yet to join the family. Who knows, maybe we were supposed to wait?

Postponed?!

It's true. We've been officially postponed. I had my amniocentesis today (a truly lovely experience I wish on no one) and it turns out that while our little guy's lungs are very close to ready, they want to give him another few days to bake. Seriously! The only thing we could plan on with this little bundle of surprises was his arrival date and now he has managed to evade even that near certainty. Oh well! The last thing we want to do is hasten his arrival only to find we've put him in more trouble than he absolutely needs to endure at this point.

He is still looking big and strong. They estimated his weight at approximately 7 lbs 10 oz today and his noggin is measuring in at 41 weeks! At this point all we can do is wait it out through the weekend and check back in with the docs early next week.

We are already amazed at the outpouring of love and support from so many of you. Thank you for all your offers of help and meals and cleaning and on and on. All of which I'm sure we'll need soon -- just not as soon as we'd planned. We are truly blessed to have such amazing people in our life. Just as so many of you pray for us, we offer our prayers of gratitude for you in return. All I can say tonight is please stay tuned!

Speed Demons (with training wheels!)

Preston got a new "big boy" bike this weekend. (Another important step in his quest to do almost everything exaclty as Ty does.) He was so adorable in his new helmet, I just had to share the pic.

Wedding Day

Well we made it to the wedding! My youngest sister Aly made me promise not to have the baby before her big day and I was able to keep the promise. It was an absolutely magical day that I couldn't imagine it being more perfect for her. She was stunning. So beautiful, in fact, that strangers from other wedding parties at the temple that day were taking her picture (much to the chagrin of the brides those people were supposed to be adoring!).

The ceremony was absolutely memorable. They were given some very special advice and one observation struck me as partcularly unique. The officiator mentioned that some couples seek to be married, while others are looking to be sealed as partners for time and all eternity. He felt the spirit of their ceremony indicated that latter. I couldn't have agreed more.

The reception was also breathtaking. Cole's aunt generously opened her stunning home and yard to 200+ guests. It was gorgeous and charming; a perfect setting for the new picture perfect couple.

I am so proud of Aly, the decisions she's made and the happiness that's followed. We are thrilled to officially welcome Cole to the family. My boys absolutely adore him--and I trust their judgement without reservation. His family has brought such joy and comfort to Aly as well. What a gift...a great guy and a great family! Here are some of my favorite pics from the day: