Sunday, August 25, 2013

Take Two: Pre-Op & the First 12 hours.

Eight O'clock in the morning comes early when you live an hour away from the hospital and you have to deal with rush hour traffic and have to deal with a parking garage. We made it with 15 minutes to spare. SCORE!

We check in to the surgical waiting area and Miles' name was called quickly. We do the usual, weight, height, head circumference, and move to X-Ray for chest/lungs photo shoot.
Blood is drawn after I looked the paramedic in the eye and asked her if she was a good infant draw. She didn't respond, but the nurse in the room did. They used a JTip to numb the area first. I wasn't too keen on that, but Dale felt it was okay. After lots of crying, tubes were drawn, and we get the tour.

If you are ever in the situation where you get a tour of the hospital, DO IT!! It was so good to see the cardiac ICU, PICU, and the Cardiac step down room. I will try to explain the set up in our hospital, Cook Children's Hospital in Fort Worth.  It is a locked unit and you must have a certain color band to gain access to it during certain hours. Once you step in the doors, you are required to wash your hands. There is no bathroom, so you have to exit the unit to potty. The room is a long rectangle and there are several beds in a row. These beds are separated by curtains. No food, no open drinks, shoes/clothing on for visitors at all times (hee hee), and there is a small cushioned couch behind each bed. That is the parent sleeping area. There are two isolation rooms which close off and are a private room. These rooms are for kids that are more critical or have something contagious. We get the luck of Irish and get an isolation room for Miles.

They have a 24 hour Pediatric Critical Care Doctor on the floor at all times and there are 10 beds.
The surgery waiting area is tiny and one parent has to be present at all times. They call you once surgery begins and then every hour until you get the hallway drive by.

We went home praying that all babies would be stable and we wouldn't get bumped again.

Now, for us, surgery started Thursday the 22nd at 3am. That was the last time Miles could nurse and he could have water until 5 am. So, he nursed until 4:20am, when I woke up to my alarm. We had to give him a bath and be at Cook's at 7am. Thank you for very little traffic and a close spot to the elevator.

We went to the surgery waiting area and Miles was weighed/measured a final time. We didn't loose the red band (from the previous day's blood work) and proudly showed it to the nurses. If you lose it, you have to be redrawn. Yikes.

We hung out in the room for a bit and then it was time to go back. Double Yikes. This is really happening. Dale carried him down the hallway and I gave him a kiss goodbye. Then we handed our baby to the nurse. We were apprehensive, but Miles was totally flirting with that nurse. Within 3 minutes of him being in the back, he would be smelling the watermelon anesthesia scent we selected for him. It was 8:20 am. We now run to grab a bite to eat and get a few things out of the car. We are back in the waiting area by 8:45am.

At 11:10 am, we received the call that surgery had begun and Dr. Tam was already working with the valve, then the canal/septal defect, and finally the two smaller holes. When the phone rings in the room, the entire room goes silent and everyone attempts to answer the phone. They state the family's name and the look on the parent's face is pure anxiousness. We only saw smiles as the phone was replaced on the receiver.

Another call at 12:10pm; more smiles. A family of 12 comes into the waiting room and takes over and they are super loud. Another call at 1:10pm; more smiles and I have to tell the other family to stop being so loud. They were completely stressing me out and we couldn't hear what the nurse was saying. We get another call after 2pm and they say that surgery is complete and Dr. Tam would like to speak with us. I don't think we were able to hang up and get into the hallway any faster.

Dr. Tam tells us that the surgery went well, Miles tolerated the by-pass machine well, his heart was throwing solid rhythms, that he was comfortable with the surgery and he finished a bit faster than expected. WOO HOO~  We are overjoyed to hear this news.

We have to go back to the room to wait for the "drive by" call. We packed up our busy work and waited. We get the call about 2:30pm and run out to the hallway to see our baby.

We get a quick peek, give him a kiss, and now we travel down another area to wait in another waiting room for an hour or so. The PICU waiting room is nice and has a little courtyard to get some fresh air.

An overhead speaker announcement tells us to go to the child's treatment area. WOOT! This means we get to see our Miles in his area. Each bed or crib has their own dedicated nurse that comes along with it. So far, we have an itty bitty girl, with a big pink headband bow, on one side and an adorable bigger itty bitty boy on the other. He's a charmer and can smile and wave.

He is heavily sedated and stable. Two amazing blessings. We stay for a while, then prepare for Dale to leave to go home for the boys.

I do my thing for preparing for some quick naps and pumping. The decade of birth doula work has prepared me well for this part of surgery. I can nap anywhere and wake up quickly in a hospital setting.

Dale leaves and we get ready to start the healing process.

Monday, August 12, 2013

10 Things I Learned in July

  1. Menu planning is my friend.
  2. The official grocery shopping job has happily been given to Dale to do.
  3. Christmas gift planning and shopping has begun.
  4. Miles rolls over and there is no stopping him.
  5. Liam idolizes his big brothers. I pray daily for them to be the best role models they can be.
  6. Brian is so very passionate about everything!  He's going to change the world one day.
  7. Grayson has a beautiful soul and is trying to fulfill his vision of growing up with grace.
  8. I hope when I am old I am able to recall the feeling of the weight of a sleeping baby in my arms.
  9. Meeting the cardiothoracic surgeon was a great idea.
  10. I feel like I am stumbling through the gift of motherhood most days, but have realized that all mothers are too. No one knows the journey.

Wednesday, August 7, 2013

Pre Op and a Sucker Punch!

Today was the day for our pre-op steps. We were told to be there at 10 am, which we were spot on time! Go us! We were ushered into our room and the people kept coming in. We had a CNA (certified nurse anesthesiologist), our cardiac nurse, a phlebotomist, a regular R.N., and a nurse from Dr. Tam's office. All is going well and all of our questions are asked. Answers are given. The bad outcomes and risks are explained. Blah blah blah. So, we are getting ready to sign consents and do the blood draws.

Yeah! Our appointment is about halfway completed at the 2 hour mark!! We are looking forward to the blood draw being OVER and the tour to begin so we can see the floor, where we will be, and get that part settled in our heads.

Now, this is where the sucker punch comes in. Get ready, wait for it, wait for it, wait for it, and BAM! Sucker punch straight to the heart. Then wiggle it around for a few more minutes for fun.

Yup, we got BUMPED from surgery on 8/8. I feel the tears start to form and the lump in my throat burning. "Keep it together chickie!" is all I can think of. This was my second biggest fear and I KNEW it would happen since Miles is so stinking healthy looking. What ticked me off is that everyone keeps downplaying his defects except for Dr. Tam. He was completely taken aback that he looked so healthy when he had so much going on and the size of the ASD. But, we know, somewhere deep in our hearts and minds, that another baby is needing his care and thank God Miles is healthy enough to go forth and thrive. It doesn't really make it better nor easier.

It is such an emotional upheaval and we were praying that we wouldn't get bumped and we were hoping that he would be on the other side of the healing process before school began. What is going to happen now is that we are scheduled for 8/22. It was mentioned that we could even get bumped again. So, we wait. We pray. We put our lives back on hold for 15 days and then we hold our breath before plunging into the deep water.

This game sucks. 

Sunday, August 4, 2013

What Can You Do to Help?

What an outpouring of love we have been given on this journey. Our family, friends, and even acquaintances have been rooting for Miles and his heart. It is very humbling to our family to be the recipients of such love. Dale will be bouncing back & forth between from home to Cook's and I will be staying at Cook's the entire stay. We are hoping to get a room at the Ronald McDonald home ,so I can nap a few hours here & there, and find out on Wednesday if they have anything available.

I have been asked by many what they can do to help us while Miles' has surgery and during his recovery. These are a few things that we can think of.

First, please continue to pray, send good karma, happy vibes for Miles, his surgical team, the anesthesiologist, and the nurses who will caring for him. THIS is our number one request and the most important to us.

Second, we are blessed by having family in the area to help with the older boys. They will be staying at home or at my mom's house for most of our hospital stay. You are more than welcome to call & see if they are available to goof off with your kids for a few hours.

Third, one of our dear friends is going to set up a meal schedule for when we get home. She is in another state and really wanted to do this for us. If your budget and time allows, you are more than welcome to sign up to bring a meal. Our goal is to have a few meals when we come home from the hospital so we don't have to stress about cooking for the first week. We aren't fussy eaters at all. Look for something on my facebook wall if you want to bring something. The hard part is that we don't know when we are coming home, so exact dates aren't here to make it easier.

Fourth, please feel free to text, message, email us for any information you want to know. I will be posting updates on facebook when I can. The last time we were at Cook's, my reception was pretty spotty, so I will do my best to get back in touch with you as soon as I can.

So, that is what we need. If you are open to anything on the list, please feel free to do so. We are extremely thankful for our support circle surrounding us.

Saturday, August 3, 2013

Details! Details! Details!

We met with our cardiothoracic surgeon, Dr. Vincent Tam, who is the medical director of the Heart Center at Cook Children's Hospital in Fort Worth, Tx., on 7/25.

This appointment was a "meet & greet" along with a Q&A portion. I'm glad we had it since it gave us some answers about very specific questions we had. Some questions he wasn't able to answer, but assured us that the nurses during pre-op would be able too.

The BIGGEST thing that we discovered during this appointment is how much heart defect repair is not an exact science yet. The diagnostic tools have come so far in the last few years, but essentially, until Miles is opened up, Dr. Tam isn't exactly sure how messed up everything is going to be. On the bright side, he hasn't lost a baby to this surgery since 1996.

We went over the ECHO results and while reviewing, he was giving us a tour of the defects. Right now, Miles is weighing in with a whopping 4 defects in his heart. This is different than the original thought of two.

The original atrioventricular defect was about 7mm, it is now approximately 12 mm. The primum atrial defect is about 10mm, the small ventricular defect is about 2mm, and finally, the mitral valve is currently stuck in the open position.  Surgery is expected to be between  4-6 hours in length with a hospital stay of 4-5 days with zero complications. Miles will be 22 weeks old.

Pre-Op is Wednesday at 10am.

Miles 16 weeks
Photo Credit: Heidi Thaden-Pierce of Better Birth Doula