I am not afraid of your pacemaker. And, by gosh, you can't be either.

We get a lot of questions about Foster's fabulous pacemaker. To sum it up: There is a large bulge in her abdomen that looks like a pocket watch. It's surprisingly hard to the touch. That is the actual pacemaker. It is connected by "leads" to her heart. Those leads are sewn onto the heart and the pacemaker controls the rate at which her heart beats. Right now it is set to 9O beats per minute. She will have her pacemaker her whole life. It will be replaced between ages three and five. But its outpatient surgery. Thereafter, it will need to be periodically replaced. We have a machine that we plug into our phone line. We put a thingie that looks like a computer mouse over her pacemaker, push a button on the machine, and it sends the pacemaker's data to Duke. The pacemaker people read the data and make sure its working ok. We do this three times per year. A couple of times per year we will visit Dr. Kanter, the electrophysiologist at Duke. He will decide if her heart needs to be "turned up" or whether other adjustments need to me made. They can adjust the settings on her pacemaker by pushing some buttons. It's amazing. Foster's pacemaker allows her to live normally. You would never know she has it. She can do anything and everything a normal child would. She can't have an MRI. She will have to be "pat down" at the airport. [Woo hoo...Free massage!] But that's about it as far as her limitations. It doesn't bother her a bit.

But, to be honest, the size and feel of it is unnerving. It's a large, very hard bulge in the tummy of a tiny baby. While changing her diapers I was finding myself trying to avoid it, not look at it or touch it too much. And then it occurred to me that I need to touch it, love it, embrace it and thank God for it. It's part of her and her amazing story. I will not ever fear it or be made to feel uncomfortable by it.

And, Foster, you are never allowed to fear your pacemaker. Or be ashamed of it. Instead, tell your story. Tell whoever will listen. Stand on the rooftop and tell them that you live because of the grace, love and power of an awesome God. Your pacemaker is part of your story. Show them your scar. Be proud of it. We pray that your testimony will change someone. Most certainly, sweet baby girl, you have changed us.

Two weeks old

Pumpkin Seed we are in awe of you. God placed you perfectly in this world, and entrusted you to us, and we are so, so thankful for your life. We love you more than you will ever know. We look forward to each day. To see who you are and what you will become. You're going to be big time, girl. 

Pumpkin Seed

Apparently the pictures we've posted don't portray Pumpkin Seed's size. Everyone who comes to see her in "real life" is surprised at how small she is. She's tiny. Here are some "to scale" pictures. She weighed 4 pounds, 1O ounces at birth. At discharge she was 4 pounds, 5 ounces. On Monday we visited the pediatrician and she was 4 pounds, 7 ounces. Surprisingly, we don't think much about the pacemaker. It's become just a part of life. There is a large, hard bulge in her abdomen that can be felt when you change her diaper, but other than than, the pacemaker doesn't get much attention.  I'm just so thankful for it. We're much more concerned with making sure she's eating enough and gaining weight. Hiccups are a problem. She gets them several times a day and they are very painful. I guess because her breastbone is still healing. It's pitiful, but they don't ever last long. Tomorrow we return to Duke for a follow up with the heart surgeon to check her incision [which is a work of art by the way….you can hardly see it. I will be sure to compliment the surgeon!]. 

Happy beautiful Thursday. We're about to walk outside and enjoy this weather.

Much love,

Drew & Anna

 

What a long, strange trip its been. We're home!

Oh boy. We have a lot to share. I'll start by saying we're home. HOME. With Foster. She's healthy. Drew and I are processing this ordeal. The whole thing happened a whole lot faster than anyone, us and the doctors, could have expected. We were prepared for weeks, if not months, of an ICU situation trying to get Foster healthy enough to bring home. Healthy. Normal. It feels like a dream.

So, quick recap. Foster was born on Saturday morning. Within three hours she was in the operating room having open heart surgery. About four o'clock, the surgeon came in and said her pacemaker was in and everything went well. I still couldn't feel my legs from the C-Section. I did not see her in the ICU for another hour or so. By seven o'clock, they removed her ventilator tube. She never required morphine. They were able to control her pain with Tylenol. Tylenol. She had her breast bone opened and underwent heart surgery. Tough. 

The next day, Sunday, she remained in the ICU for monitoring. By the afternoon they were able to remove all of her internal tubes. She was eating from bottles. No feeding tubes. Weighting 4 and a half-pounds, within 48 hours of having open heart surgery, no pain medication, and eating from bottles. Resilient. 

Monday, less than 48 hours after the surgery, it was determined that there was no need to keep her in the ICU. She was laying there taking up space. That morning the doctor decided to move her to a "transitional nursery" to monitor feeding and oxygen. Drew and I went to get breakfast. Returned to a change of plans. She doesn't need a nursery. We're going to put her in a regular room. Unyielding. 

We moved to the pediatric cardiac floor about lunch time. There was a bed, a chair and a bassinet. We were able to camp out with her, requiring no Ronald McDonald House or Hotel. That was Monday. Foster was two days old. She had been through a premature birth, open heart surgery and the ICU. Beast. 

We hung out, rested, watched TV and snuggled with Foster the rest of Monday. Tuesday morning the doctors told us there was really not any reason for Foster to be in the hospital. Huh? From a cardiac standpoint, she was fine. There was nothing wrong with her. What? They were just monitoring her feedings. We could go home the next day. Mighty.

Wednesday morning we were ready to be discharged. Foster was packed up. Because she is a preemie, we were required to put her in a car seat so they could monitor her oxygen for ninety minutes. Within those ninety minutes, the bottom dropped out and the blizzard of 2O14 began. We watched the news, saw that there was a virtual Armageddon on the highways and started questioning what in the world to do. We decided it was not an option to travel home. The doctor came back in and and we told him the concern. He said that he thought we would be welcome to remain at the hospital, but that we could get a hotel close by. We had nowhere for her to sleep at a hotel. He suggested putting her in a dresser drawer. They've probably done over a hundred thousand dollars worth of medical intervention on this child and he wants us to put her in a dresser drawer. That is awesome. Turns out, we were cleared to remain another night so they could monitor her some more. So we settled in and snuggled and waited out the storm.

We think we're going home. Not.

Waiting it out.

Thursday morning we were cleared to go. I wasn't sure it was going to happen. Foster had dropped her weight down to 4 pounds, 5 ounces. I thought they would want to keep her to continue monitoring the feedings. But they said there's no reason not to go. The cardiologist said we have a normal baby. Take her home and treat her as a normal baby.

We're going to some place they call home. They tell me I'll like it. 

Now for the drive home. Wow-wee. I think it took years off Drew's life. We left around noon on Thursday. We made it with only one slip and slide. It was a slow go. Foster didn't mind. I was so happy to be going home, I didn't either. Drew held it together like a champ. Cars were piled up on the sides of the highway covered in snow where they had been abandoned the day before. Ice was still coming down. We made it home. I want to share more later, including pictures of our homecoming. Just wanted to update everyone that by the grace and love of our awesome God, we're home. With Foster.

This morning. Six days old. Look how good my boo-boo looks. I like this place they call home.

Much love,
Drew & Anna

Overachievers Find Themselves in Ice Storms

Today has been excellent. Foster is three days old. She is within one ounce of being back to her birth weight. From a cardiology standpoint, she is ready to be discharged. They did WHAT to her three days ago and are letting her go WHERE?! Today we have snuggled all day long. We are in her room and it is very, uhm, cozy. Actually, we are learning to be European. In case we ever let her travel within 60 miles of an electrophysiologist. Our stuff is expertly stowed all over the room and we are snuggling in all cozy and watching TV all day long. It's a precious time. When will it ever be the three of us like this again? I miss Joseph and Maggie terribly. But this is joyous and peaceful.

At the doctors' rounds this morning, they told us that the only thing that's keeping us here is making sure she is eating enough and her blood sugar is stable. Her blood sugar has been great all day so they stopped monitoring it. She's eating exactly what they said she needs to be eating. So, based on that, I guess we will be going home very soon if she continues. WE'RE GOING WHERE? We had a long meeting with the pacemaker specialists today. Nothing we can't handle. It's really about as straightforward as it gets.

Now, the weather. I have no idea. Surely they won't keep us out if we can't get home. Ice storm is supposed to be "historic." Drew is at Babies R Us right now buying a car seat [can't get to Sanford to get ours], bottles, and formula. This is a strange dilemma. We just wait and see what the weather does, whether we can get home, and if Foster is actually going to get discharged in the middle of the storm. I really don't feel comfortable bringing her an hour away from Duke having just had heart surgery and being premature with the possibility that the weather will make travel impossible.

I found these pictures of Joseph to compare. Double take. She makes his 7 pound body look enormous.

Foster 3 Days Old

Joseph Two Days Old

Joy

It's the middle of the night. I am snuggled in bed and snuggled next to me is this extraordinary miracle child. It was supposed to take weeks for this to be possible. Our God is so, so good.

The Best Thing I Ever Saw...

Was in a plastic box. In front of a window of the Duke Hospital Pediatric Cardiac ICU. While it was snowing outside. We ate breakfast and came back to the ICU this morning. On the way in, the nurse said, "I got her all packed up to go." Awesome, I thought. Awesome. Foster overachieved with her feedings to the point where they decided they could bypass the transitional nursery and send her straight to her own room.

I was not prepared for what I felt when I walked in an saw her. No tubes, no oxygen. All of the machines had been removed from her station. She looked just like a normal baby in a normal baby bassinet. I wish I had the words to describe it. I turned into a blubbering idiot. The emotion was more powerful than hearing her first cries in the operating room when she was born. I. We get to take her home. We get to love her. Thank You, thank You, thank You. 

We are now in Foster's room. She's eating well and doing great. I still blubber like an idiot from time to time when I look at her. She needs to eat every two hours and get regular checks from the nurses so we are prepared for no sleep at all. But it's so good.

Please pray for Foster's roommate in the ICU, a four month old baby girl who was not doing well. She's been on my mind much of the day.

Much love,
Drew & Anna