It is nearly 9pm and Nick and I are sitting by Ada's bedside in the CICU - cardiac intensive care unit. What a day. We got to the hospital a little after 7 this morning and checked in and soon were chatting with Nick's parents and sisters and my parents, our support people for the day. We brought Ada into the Cardiac Pre-Unit and got her changed into a hospital gown. We sang a few songs and did a lot of snuggling. By 9 am the nurse had arrived to take Ada into the operating room.
The surgery itself took less than the expected 4 hours, and it went off without much of a hitch. Everyone went according to the planned procedure, the Glen procedure as it is called. The one additional aspect was that Ada's hole between her left and right ventricle was enlarged. Then, her superior vena cava was attached to her pulmonary artery. Her time on the heart and lung machine didn't seem to cause much of an issue, and her heart started up just fine on its own once the procedure was complete.
By about 2 in the afternoon Nick and I were allowed into the ICU to see her. She is still trying to come out of the heavy sedation, and is likely experiencing a pretty massive headache, in addition to pain from the incision and the number of tubes, IVs, and wires all over. It is pretty sad to hear her quietly cry, though I'm sure we'll hear it much louder and stronger once she really wakes up from all the sedation.
We are so very, very grateful for the successful outcome of the procedure! We were definitely both "at peace", or as much as could be expected given our situation, while Ada was in the operating room. In a sense, it is almost more difficult to be here with her and see her in pain, but we know that she is healing. It is all a process.
We'll post more later, but wanted to at least give a bit of an update. Thank you so much for all of you prayer warriors out there, remembering us and our dear little one!
Monday, November 14, 2011
Thursday, November 10, 2011
It is fall - or fall into winter - I am rediscovering parts of my wardrobe that haven't been touched in months and months. And I love fall and bundling up and drinking warm spicy drinks and sitting by campfires. Or this year we have the benefit of living in an apartment with a gas fireplace. One flick of the switch and I have delicious ambiance. I love it. This above photo was taken by Nick's uncle Joe, with 4 month old Ada. It was a delightfully crisp Saturday morning, and the park was the perfect place to be for a photo shoot. We know that, because there were a number of other photographers capturing their special treasures on film.
Tomorrow we go in for the pre-op visit at Children's Hospital. We have already met with the surgeon once, so we will talk instead to another "fellow" at the hospital to ask details about the surgery. This week we took care of getting Ada's chest x-ray and blood work done, so I think/hope that the visit will be as painless as possible for Ada, and thus for all of us.
I think that I discovered my coping mechanism this morning as I was IRONING A TABLE RUNNER. Which I never do. Ironing in general ranks up there with dusting as household chores I opt out of. No need! But today I have been on a busy, cleaning raid of our apartment, which I suppose is a fairly helpful coping mechanism. Could be worse. But we're staying busy, staying occupied. I have had daily moments of losing it, getting overwhelmed with fear or sadness. And at the same time, I have had daily reminders of the care the Lord provides for us in the midst of a hard season. He is caring for us through His people and I am grateful.
A couple specific prayer requests would be for Ada's health in these next few days, as we are attempting to keep her from little germies that would halt or postpone the surgery. She is fine, doing well, in fact, though she had an elevated white blood cell count (I think), which may have been from fighting off a virus of some sort earlier on. In any case, please pray. And stay away from us if you are sick. :) Also, my parents will be driving out on Sunday and early Monday to be here at the time of the surgery, so please pray for "travelling mercies", as I hear them called.
Here we go, folks.... aaah! I'll include another picture of our baby girl.
"Children of the heavenly Father, safely in His bosom gather; Nestling bird nor star in heaven Such a refuge e'er was given." -Lina Sandell
Wednesday, November 2, 2011
Heart Cath Today
Sigh - we made it! We're pretty exhausted after a night with little sleep and a day filled with commotion. But the news is good. We are home! I woke up for the 1 a.m. feeding today to look out onto a winter wonderland. The snow was coming down so strong that I wondered if it perhaps would be a game changer. But we braved the snow, cold, and bad road conditions and arrived fashionably late to Children's hospital at 6:30. After checking in we met with nurses and doctors and Ada had her vitals taken. All systems were go, so we passed off a crying baby to a nurse - a stranger - and shed a few tears. That was the toughest part of the day. But by 11 a.m. we were reunited with a sleeping baby, a wonderful feeling.
The heart cath went very well, we are told, and there were no major surprises in Ada's heart anatomy. The pressures in her heart also are showing to be a good sign, and the doctor was able to definitively rule out the possibility that her body had produced little "runners" or extra veins that formed to try to make their way to the lungs in order to get oxygenated - those would need to have been closed off prior to the surgery.
After the cath was completed, the doctors did a sedated echocardiogram to again get an accurate picture of the heart and the size of the veins/arteries that they will be dealing with in a couple weeks. Again, no major upsets there.
Ada has of course been more fussy than normal, but the up-side is that she has been eating like a champ today - already 15 oz. taken today by 5 pm, which is pretty stellar. We were told to expect that the first 24 hours after coming down from the anesthesia are the hardest and most fussy. I'd better get some rest before "nighttime" comes, just in case!
Your prayers and support are so appreciated. So encouraging to know and feel that we are not alone in this. We'll keep you updated!
The heart cath went very well, we are told, and there were no major surprises in Ada's heart anatomy. The pressures in her heart also are showing to be a good sign, and the doctor was able to definitively rule out the possibility that her body had produced little "runners" or extra veins that formed to try to make their way to the lungs in order to get oxygenated - those would need to have been closed off prior to the surgery.
After the cath was completed, the doctors did a sedated echocardiogram to again get an accurate picture of the heart and the size of the veins/arteries that they will be dealing with in a couple weeks. Again, no major upsets there.
Ada has of course been more fussy than normal, but the up-side is that she has been eating like a champ today - already 15 oz. taken today by 5 pm, which is pretty stellar. We were told to expect that the first 24 hours after coming down from the anesthesia are the hardest and most fussy. I'd better get some rest before "nighttime" comes, just in case!
Your prayers and support are so appreciated. So encouraging to know and feel that we are not alone in this. We'll keep you updated!
Thursday, October 27, 2011
Upcoming Surgery
A year ago we were finishing up our stay in Guatemala, at the end of "The Grand Adventure" - or so we thought! In those last weeks we had learned that I was pregnant; and added to the sickness from the food, I was also very weak and struggling with morning sickness. I was at the point in my pregnancy that I had lost our first baby that spring, and was of course extremely nervous about the baby that I was carrying. More than anything, I just wanted to be home. We flew back to Denver on Halloween - I remember that a few of the airlines in the Guatemala City airport had decorated for the occasion!
Well, those of you who are parents or those of you who know someone who is a parent (...?) will attest to the fact that in fact, our adventure was far from over.
Today little Ada is peacefully napping in the next room, giving me a chance to connect with you all this afternoon. Some people would say that they can't remember what life was like before their kids. Well, I do. I remember it, and it had its benefits. But of course I wouldn't want that life back now. Ada is a little special treasure, and I am not saying that "tongue in cheek". Her current favorites include: scraping off her socks on the floor or the changing table, looking at her mirror buddy, smiling and high-pitched "talking", and now most recently... staring at the fire in the fireplace. What a life! I can't say that I know much of her personality yet, but it is clear that she loves time with mommy and daddy, and that she is a bit more hesitant about hanging out with anyone else yet (pretty sure that is normal!). Also, she really does seem like a joyful little girl. If she is well rested and fed, why, she's a charmer! Super smiley and talkative! It is so much fun!
Time has flown by since the day we were rushing up University to get to the hospital as I was in labor. Ada is now 4.5 months old, and that means that it is Time.
(Summoning up courage now...)
Wednesday of this coming week, we head in to Children's Hospital for a heart catheterisation. It is a one day procedure where Ada will be put under general anesthesia and a cardiologist will go in through an artery in Ada's groin and snake a thin tube up to her heart in order to measure pressures and get accurate pictures of her heart so that there are no surprises for surgery. A sedated echocardiogram will also happen, as well as a meeting with the surgeon who will be doing the surgery.
Surgery has been set for Monday, November 14th. We don't know all of the details of the surgery, but wanted to at least let people know the timeline for when it will be occurring. It will likely be about 4 hours of actual surgery with an hour on either side when we will not have contact with Ada. We are thankful that we live so close to such a great hospital, and the surgeon who will be performing the operation is one who comes highly recommended from multiple sources.
Nick and I plan to use this blog as the primary way of communicating throughout the process. If we change our minds, we will post that here, to direct anyone to wherever we might choose to use. There are a number of you who have asked how you can help us in these days. It is difficult to know, to be honest. We've never been through anything similar to this before, thank the Lord. Encouraging notes, calls, etc. are always appreciated. Food at the hospital is not a bad idea, as we will be there for likely a week, more or less. As we become ready for visitors at the hospital, we will post that as well, for those of you in the Denver area. After the surgery we will likely have more of a clue what will be both possible and helpful for our family.
Nick and I are hanging in there, some moments "on a shoestring". We try to think of the the things to be thankful for: that this surgery is even possible so that our daughter's life can be saved, that we have health insurance, that Ada has done so well these last months as we have waited so that she is bigger and stronger, etc. Yet if I could choose to not go through this difficult time in life, I'd jump at the chance. I know that often times people can look back at the tough times in life and realize that it helped to make them the person they are today... I'm not there right now. I'd like to opt out of open heart surgery on my daughter, please. No, I'd like to opt out of the NEED for my daughter to have open heart surgery. But life is not fair, and none of us will journey through this life without a taste of difficult days.
I am a follower of Jesus Christ, and I trust Him these days. That is all I have at times, and I know that Nick would say the same. Jesus conquered death and decay, once and for all. Below I have posted a video of sweet Ada talking, and then a video of me playing and singing a Sandra McCracken song, Feast or Fallow. This song has been so special to me for the last year and a half... I know I've mentioned it here before. The song speaks of the seasons of life... some of them times of feasting, some of them dry and barren, "fallow" seasons. We'll endure this hardship by clinging to our Rock. Please think of us and pray for us as we do.
Grateful, love for you all.
Well, those of you who are parents or those of you who know someone who is a parent (...?) will attest to the fact that in fact, our adventure was far from over.
Today little Ada is peacefully napping in the next room, giving me a chance to connect with you all this afternoon. Some people would say that they can't remember what life was like before their kids. Well, I do. I remember it, and it had its benefits. But of course I wouldn't want that life back now. Ada is a little special treasure, and I am not saying that "tongue in cheek". Her current favorites include: scraping off her socks on the floor or the changing table, looking at her mirror buddy, smiling and high-pitched "talking", and now most recently... staring at the fire in the fireplace. What a life! I can't say that I know much of her personality yet, but it is clear that she loves time with mommy and daddy, and that she is a bit more hesitant about hanging out with anyone else yet (pretty sure that is normal!). Also, she really does seem like a joyful little girl. If she is well rested and fed, why, she's a charmer! Super smiley and talkative! It is so much fun!
Time has flown by since the day we were rushing up University to get to the hospital as I was in labor. Ada is now 4.5 months old, and that means that it is Time.
(Summoning up courage now...)
Wednesday of this coming week, we head in to Children's Hospital for a heart catheterisation. It is a one day procedure where Ada will be put under general anesthesia and a cardiologist will go in through an artery in Ada's groin and snake a thin tube up to her heart in order to measure pressures and get accurate pictures of her heart so that there are no surprises for surgery. A sedated echocardiogram will also happen, as well as a meeting with the surgeon who will be doing the surgery.
Surgery has been set for Monday, November 14th. We don't know all of the details of the surgery, but wanted to at least let people know the timeline for when it will be occurring. It will likely be about 4 hours of actual surgery with an hour on either side when we will not have contact with Ada. We are thankful that we live so close to such a great hospital, and the surgeon who will be performing the operation is one who comes highly recommended from multiple sources.
Nick and I plan to use this blog as the primary way of communicating throughout the process. If we change our minds, we will post that here, to direct anyone to wherever we might choose to use. There are a number of you who have asked how you can help us in these days. It is difficult to know, to be honest. We've never been through anything similar to this before, thank the Lord. Encouraging notes, calls, etc. are always appreciated. Food at the hospital is not a bad idea, as we will be there for likely a week, more or less. As we become ready for visitors at the hospital, we will post that as well, for those of you in the Denver area. After the surgery we will likely have more of a clue what will be both possible and helpful for our family.
Nick and I are hanging in there, some moments "on a shoestring". We try to think of the the things to be thankful for: that this surgery is even possible so that our daughter's life can be saved, that we have health insurance, that Ada has done so well these last months as we have waited so that she is bigger and stronger, etc. Yet if I could choose to not go through this difficult time in life, I'd jump at the chance. I know that often times people can look back at the tough times in life and realize that it helped to make them the person they are today... I'm not there right now. I'd like to opt out of open heart surgery on my daughter, please. No, I'd like to opt out of the NEED for my daughter to have open heart surgery. But life is not fair, and none of us will journey through this life without a taste of difficult days.
I am a follower of Jesus Christ, and I trust Him these days. That is all I have at times, and I know that Nick would say the same. Jesus conquered death and decay, once and for all. Below I have posted a video of sweet Ada talking, and then a video of me playing and singing a Sandra McCracken song, Feast or Fallow. This song has been so special to me for the last year and a half... I know I've mentioned it here before. The song speaks of the seasons of life... some of them times of feasting, some of them dry and barren, "fallow" seasons. We'll endure this hardship by clinging to our Rock. Please think of us and pray for us as we do.
Grateful, love for you all.
Wednesday, October 26, 2011
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