Brigid is back to having a bit of a hard time with her breathing. When she is awake and alert, they find that she works hard at fighting against the tube. She is a strong girl, but in this case, strong is a bad thing. She often displaces the tube, and it tends to cause her to have a vagal response or to have trouble oxygenating or venting off her CO2.
Again.
She has lost weight over the past few days, I think. They don't weigh her daily in the PICU and that's where she's been since her surgery, but today she looked skinnier to me. They mentioned that she may be using her calories in struggling with her breathing, either during the CPAP trials or if she's just not ventilating well. So now, after several different CPAP trials (some successful, some not), they think the best thing would be to try removing the tube altogether and seeing how she does without that being a factor.
This is very scary to me, but I'm curious about it as well. As much as the positive pressure (PEEP) from the tube has been helping to keep her malacia open, is the tube itself causing blockages? Has it now become more of a hindrance than a help? And if so, can they give her the PEEP she may need to overcome the floppiness in her airway through only the nasal cannula?
These questions and more will be answered tomorrow morning at around 11 a.m. Please say some prayers that it would go well and she'd be able to be off the ventilator completely.
Plus, I'm kind of excited to see her upper lip.
Monday, June 20, 2011
Thursday, June 16, 2011
Improvement
I got to spend a little bit of time with a very awake and alert baby girl today,
and boy, did it feel good!Brigid has been doing well since her surgery. Her breathing has improved so very much. She is so easy to ventilate, in fact, that they have started doing CPAP trials with her ventilator to give her practice breathing on her own.
To witness a tiny infant, who is not even supposed to be born for seven more weeks, triggering her own breaths for almost an hour is nothing short of miraculous. We are indeed fearfully and wonderfully made!
Tuesday, June 14, 2011
Success!
Thank you so much for keeping our baby girl in your prayers yesterday!
Her surgery took place in the morning and was a success. Her doctor came to speak with us in the pediatric waiting room as soon as it was done - before she even got back to her room - and told us just how it went, and how great she did.
We were able to go back and see her, which was a little upsetting as she was on her back with her arms spread out and held down to the bed. They needed to observe her and keep her from grabbing onto the drainage tube that has to stay in her side for a few days following the surgery. As a mommy, it was hard to see, knowing that she really just wanted to be curled up and swaddled.
I could tell right away, though, that the surgery had made a difference when a nurse came and repositioned her ventilator tube. Its placement had been so precarious prior to the surgery because of the constriction by the double arch. If she pulled her head back and the tube shifted, even just slightly above where the constriction was, it cut down her oxygen supply and her alarm would start beeping. After the surgery, though, the nurse completely bent the tube at a 90 degree angle to reposition it. I watched her do it and then instinctively whipped my head around to check her monitors, anticipating that her oxygen levels would plummet. They didn't budge. This was such a huge indicator of how successful the surgery was.
When we met with the doctor on Saturday afternoon, he gave us several things - diagrams of what a normal aortic arch looks like, illustrations of what Brigid's arch looks like and what the surgery will do, and some of her MRI pictures that show how much the arch is constricting her trachea. These were fascinating to look at. The images are cross-sections of her body, as if you were looking up through her feet.
In this one, the yellow arrow is pointing at what her trachea looks like above the point where the double arch was constricting it:
This one shows her trachea at the constriction point. Notice the huge difference in the size of the opening:
And finally, this is her trachea, open once more, just below the constriction point and as it branches into two to go down to her lungs:
It's so amazing to look at these and to see exactly what is going on, and how it has affected her physically. Usually, doctors don't insert the ventilator tubes as low as hers is, but if the tube was above this constriction, she didn't get enough oxygen and more importantly in her case, couldn't get rid of her carbon dioxide. Below this point is the carina, right between where the branching occurs, and if the tube touched that, it caused a vagal response that made her heart rate drop. There was probably less than a centimeter of wiggle room between the arch and the carina, and because she is so strong, she could easily move her head enough to cause the tube to displace and either touch her carina or to move back above the arch.
The fact that the tightrope walk that happened all day long finding just the right spot to prevent either of these things is no longer an issue is such a relief! Patrick called last night and I called this morning to check on her, and both times her nurse said she was doing great. She didn't have any incidents of bradycardia (dropping her heart rate), desaturation (dropping her oxygen levels) or increased CO2. It seems that the surgery has already made a significant difference and was a total answer to prayer!
Her surgery took place in the morning and was a success. Her doctor came to speak with us in the pediatric waiting room as soon as it was done - before she even got back to her room - and told us just how it went, and how great she did.
We were able to go back and see her, which was a little upsetting as she was on her back with her arms spread out and held down to the bed. They needed to observe her and keep her from grabbing onto the drainage tube that has to stay in her side for a few days following the surgery. As a mommy, it was hard to see, knowing that she really just wanted to be curled up and swaddled.
I could tell right away, though, that the surgery had made a difference when a nurse came and repositioned her ventilator tube. Its placement had been so precarious prior to the surgery because of the constriction by the double arch. If she pulled her head back and the tube shifted, even just slightly above where the constriction was, it cut down her oxygen supply and her alarm would start beeping. After the surgery, though, the nurse completely bent the tube at a 90 degree angle to reposition it. I watched her do it and then instinctively whipped my head around to check her monitors, anticipating that her oxygen levels would plummet. They didn't budge. This was such a huge indicator of how successful the surgery was.
When we met with the doctor on Saturday afternoon, he gave us several things - diagrams of what a normal aortic arch looks like, illustrations of what Brigid's arch looks like and what the surgery will do, and some of her MRI pictures that show how much the arch is constricting her trachea. These were fascinating to look at. The images are cross-sections of her body, as if you were looking up through her feet.
In this one, the yellow arrow is pointing at what her trachea looks like above the point where the double arch was constricting it:
This one shows her trachea at the constriction point. Notice the huge difference in the size of the opening:
And finally, this is her trachea, open once more, just below the constriction point and as it branches into two to go down to her lungs:
It's so amazing to look at these and to see exactly what is going on, and how it has affected her physically. Usually, doctors don't insert the ventilator tubes as low as hers is, but if the tube was above this constriction, she didn't get enough oxygen and more importantly in her case, couldn't get rid of her carbon dioxide. Below this point is the carina, right between where the branching occurs, and if the tube touched that, it caused a vagal response that made her heart rate drop. There was probably less than a centimeter of wiggle room between the arch and the carina, and because she is so strong, she could easily move her head enough to cause the tube to displace and either touch her carina or to move back above the arch.
The fact that the tightrope walk that happened all day long finding just the right spot to prevent either of these things is no longer an issue is such a relief! Patrick called last night and I called this morning to check on her, and both times her nurse said she was doing great. She didn't have any incidents of bradycardia (dropping her heart rate), desaturation (dropping her oxygen levels) or increased CO2. It seems that the surgery has already made a significant difference and was a total answer to prayer!
Sunday, June 12, 2011
The smoking gun
Yesterday Patrick and I met with the man who is going to do the surgery to repair Brigid's double aortic arch. He was one of the most kind, patient people I have ever spoken with, and he explained step by step how the surgery will be performed and what the expected outcome will be.
He believes that when it comes to Brigid's breathing troubles, this is the smoking gun, and he feels confident that it will significantly help her.
The prospect of heart surgery on our tiny girl is so very frightening, but after a weekend of more breathing difficulties and instability, the risks of delaying the surgery and impeding her airway for much longer are evident. We are anxious but hopeful.
I feel like we have been asking for so many prayers, but please pray that our baby girl does well during this surgery, which is scheduled for sometime tomorrow morning. We are hopeful that it will make a tremendous difference in her breathing and that she can finally just be able to grow and thrive, stable and comfortable, until she is big and healthy enough to come home with her family.
He believes that when it comes to Brigid's breathing troubles, this is the smoking gun, and he feels confident that it will significantly help her.
The prospect of heart surgery on our tiny girl is so very frightening, but after a weekend of more breathing difficulties and instability, the risks of delaying the surgery and impeding her airway for much longer are evident. We are anxious but hopeful.
I feel like we have been asking for so many prayers, but please pray that our baby girl does well during this surgery, which is scheduled for sometime tomorrow morning. We are hopeful that it will make a tremendous difference in her breathing and that she can finally just be able to grow and thrive, stable and comfortable, until she is big and healthy enough to come home with her family.
Saturday, June 11, 2011
Ups and downs
I talked to several doctors yesterday. It's humbling to know that so many skilled and experienced doctors are considering Brigid's situation and weighing in on how best to treat her.
One doctor I spoke with was someone who'd talked to me after her MRI. He explained the surgery they'd need to perform to repair the double arch and said that "it's not a major surgery." Of course, when you're under four pounds, any surgery is major, but he meant that this is minimally invasive and one that they perform relatively frequently with minimal complications. I was feeling relieved by this when he went on to explain that because Brigid's trachea is so floppy, they may have to do a tracheal reconstructive surgery at the same time - a much more serious procedure.
This felt crushing. I asked him since the double arch surgery was the simpler of the two, could we not just do that one first and see if that helped her tracheomalacia before we did the other, more risky procedure. He didn't think that was a good option. Her attending physician had told me that a lot of different doctors were going to weigh in on the decision, considering the pros and cons and deciding on the best plan of action. I wasn't sure if they had already weighed in and this was their decision.
I was scared and cried on the drive home, praying that the doctors would reconsider.
Later in the afternoon, I got a phone call from her attending physician. She had talked to the doctor I spoke with, and also several other doctors that afternoon. I told her that I had some concerns about the surgery and asked if they could please consider just doing the double arch repair first to see if the malacia resolved. She said yes - that was what all of the other doctors had decided would be the best course of action (thank God!), and she put me on the phone with the cardiothoracic surgeon.
He was so kind and explained that despite her small size, he felt confident the procedure would not have any unexpected risks (of course, there are always risks), and that this is something that is often performed on infants. He said he would like to sit down with us and show us the MRI images, explaining exactly what they were going to do.
Then he said that in his opinion, this surgery would completely resolve Brigid's breathing issues. This was like music to my ears. He said that the malacia only exists in the exact spot that the vessels are in and he doesn't believe they are coincidental. I was so relieved.
We are meeting with him today to review the images and to discuss his findings and recommendations. As of today, Brigid is scheduled to have this surgery on Monday.
One doctor I spoke with was someone who'd talked to me after her MRI. He explained the surgery they'd need to perform to repair the double arch and said that "it's not a major surgery." Of course, when you're under four pounds, any surgery is major, but he meant that this is minimally invasive and one that they perform relatively frequently with minimal complications. I was feeling relieved by this when he went on to explain that because Brigid's trachea is so floppy, they may have to do a tracheal reconstructive surgery at the same time - a much more serious procedure.
This felt crushing. I asked him since the double arch surgery was the simpler of the two, could we not just do that one first and see if that helped her tracheomalacia before we did the other, more risky procedure. He didn't think that was a good option. Her attending physician had told me that a lot of different doctors were going to weigh in on the decision, considering the pros and cons and deciding on the best plan of action. I wasn't sure if they had already weighed in and this was their decision.
I was scared and cried on the drive home, praying that the doctors would reconsider.
Later in the afternoon, I got a phone call from her attending physician. She had talked to the doctor I spoke with, and also several other doctors that afternoon. I told her that I had some concerns about the surgery and asked if they could please consider just doing the double arch repair first to see if the malacia resolved. She said yes - that was what all of the other doctors had decided would be the best course of action (thank God!), and she put me on the phone with the cardiothoracic surgeon.
He was so kind and explained that despite her small size, he felt confident the procedure would not have any unexpected risks (of course, there are always risks), and that this is something that is often performed on infants. He said he would like to sit down with us and show us the MRI images, explaining exactly what they were going to do.
Then he said that in his opinion, this surgery would completely resolve Brigid's breathing issues. This was like music to my ears. He said that the malacia only exists in the exact spot that the vessels are in and he doesn't believe they are coincidental. I was so relieved.
We are meeting with him today to review the images and to discuss his findings and recommendations. As of today, Brigid is scheduled to have this surgery on Monday.
Friday, June 10, 2011
MRI update
Brigid had an MRI yesterday.
The doctors wanted to get a better look at what was going on with her trachea. It seems it's unusual for tracheomalacia to occur in just one small spot like hers does. Her attending physician ordered some echocardiograms (ultrasounds of her heart) to see if they could determine whether something was pressing on her trachea from the outside. She suspected maybe a vascular ring (a ring of blood vessels).
The echo gave them the idea that there was something there, but they could not tell exactly what. So yesterday they took her down to radiology to do an MRI. The procedure lasted very long, but she tolerated it beautifully. She is so tiny that they had to keep turning her at different angles to try to get just the right shot of what they were looking for.
But they finally got it, and what they believe they're seeing is a double aortic arch. It's something that we all have as developing embryos, but usually, parts of the arch eventually deteriorate and we're left with only one main aortic arch. The arch shape of the aorta, which is the artery that pumps blood from the heart to the rest of the body, normally only occurs on one side of the trachea and esophagus. In her case, it has formed two arches, one on either side of her trachea and esophagus, and they are pressing against her airway, causing the malacia.
It is very good to have an answer to what is happening. It's also very good to know that tracheal reconstructive surgery is not needed. It's scary, though, to think about a heart surgery to correct this abnormality. It's hard not to be sarcastic and cynical...I keep thinking things like, "Great, like she hasn't been through enough already." I just want my baby to be safe and healthy and normal. I want her to be able to grow and come home with us to live. I don't want her to have to go through anything else - she has been through so very much already.
And she's not even supposed to be born for seven more weeks. She should be safe and snug inside my belly, kicking around, sucking her thumb, having the hiccups. Instead, she's on a ventilator and has a tube up her nose and probes all over. She's poked and prodded and sedated and paralyzed and I have to ask somebody if I can come into her room to see her, if I can touch her, hold her, kiss her.
I think it's all wearing on me just a little bit, but God is good. He formed her in my womb, he loves her, and he knows about this double arch. It's not a surprise to him. I'm praying he will keep her safe during any procedures she needs to correct it.
The doctors wanted to get a better look at what was going on with her trachea. It seems it's unusual for tracheomalacia to occur in just one small spot like hers does. Her attending physician ordered some echocardiograms (ultrasounds of her heart) to see if they could determine whether something was pressing on her trachea from the outside. She suspected maybe a vascular ring (a ring of blood vessels).
The echo gave them the idea that there was something there, but they could not tell exactly what. So yesterday they took her down to radiology to do an MRI. The procedure lasted very long, but she tolerated it beautifully. She is so tiny that they had to keep turning her at different angles to try to get just the right shot of what they were looking for.
But they finally got it, and what they believe they're seeing is a double aortic arch. It's something that we all have as developing embryos, but usually, parts of the arch eventually deteriorate and we're left with only one main aortic arch. The arch shape of the aorta, which is the artery that pumps blood from the heart to the rest of the body, normally only occurs on one side of the trachea and esophagus. In her case, it has formed two arches, one on either side of her trachea and esophagus, and they are pressing against her airway, causing the malacia.
It is very good to have an answer to what is happening. It's also very good to know that tracheal reconstructive surgery is not needed. It's scary, though, to think about a heart surgery to correct this abnormality. It's hard not to be sarcastic and cynical...I keep thinking things like, "Great, like she hasn't been through enough already." I just want my baby to be safe and healthy and normal. I want her to be able to grow and come home with us to live. I don't want her to have to go through anything else - she has been through so very much already.
And she's not even supposed to be born for seven more weeks. She should be safe and snug inside my belly, kicking around, sucking her thumb, having the hiccups. Instead, she's on a ventilator and has a tube up her nose and probes all over. She's poked and prodded and sedated and paralyzed and I have to ask somebody if I can come into her room to see her, if I can touch her, hold her, kiss her.
I think it's all wearing on me just a little bit, but God is good. He formed her in my womb, he loves her, and he knows about this double arch. It's not a surprise to him. I'm praying he will keep her safe during any procedures she needs to correct it.
Thursday, June 9, 2011
Mornings with Tommy
I love that for as much of a Baby Monster this little guy is, his voice is so very sweet. I feel like he's gotten the short end of the video stick as the third child, so I thought I'd spend a little time chatting with him in the morning so we could record his little voice.
Wednesday, June 8, 2011
Father-daughter time
Patrick got to hold his baby girl for the very first time today!I'm pretty sure that look on her face is saying,"I'm going to have you wrapped right around my teeny, tiny finger."
I'm also pretty sure that the look on his face is saying,"Yes. Yes, you are."
Three little monkeys
These three boys have been so amazing during our entire experience with the twins and Brigid.
Like, really amazing. We have had such a big upheaval in our family from my eight weeks of bed rest, two hospitalizations, and several weeks in the NICU, and they have done such a great job adjusting to each situation.Sometimes, people ask me if they know what is going on. They know everything except for the fact that Fiona remained in my stomach after she died, came out when Brigid was born, and was buried. I figured I'd spare them the thought of that. But they know everything else.
In fact, in church the other day, a lady who had seen me pregnant a few months ago and then didn't see me for a while asked, "Where's the baby?" Jack and PJ did not skip a beat telling her the whole saga, taking turns talking with each phrase: "Well, we had two babies, but then Fiona died, and then Brigid came out, but it was too early, and now she lives in the hospital, but she's our baby sister!"
I was in tears by the end of the story, both at the flat-footedness of their response and at the innocence of it. I still don't feel like this is really happening somehow. I don't really feel pain about it, but sometimes, when I think about all that's happened to me in the past three months, I can't believe how overwhelming it is. I cry a little for myself, as if it were someone else I was feeling sad for.
But then I get to spend time with these guys.
Jack is learning so much. He's like a sponge. I love to hear how his mind works...and he's always saying what's on his mind, so it's easy to hear.
There are often ants out on our deck and the other day, he saw them and said, "Oh hi, guys."
Then, to me, "They're my ant friends. They know me." Like, "It's okay, Mommy. Don't worry, I have it under control."
Oh, okay Jack.
Here he is holding his old buddy, Hercules.
Then, there's my Peej. He is my little buddy. His smile melts my heart. He's a little bit of a mama's boy, but not so much in the way that I can't leave the house or take a shower or use the bathroom without him crying (anymore). It's more that he just likes to be where I am. And I like that.
We call Thomas our Baby Monster, because at just 16 months, he is 30 pounds and 35 inches tall. He loves books. He is a joker. He is learning to say so many things. He says "thank you" every single time you give him something. He is incredibly easy-going. At the start of my bed rest, before we'd hired someone to come and help us with the boys every day, we had several volunteers coming in to help us - a new person each morning and afternoon. I counted that in one week, nine different ladies went to Thomas's room to get him up from his naps. Some babies might balk at a stranger coming in to get them out of bed (to say nothing of nine strangers), but not Thomas. He didn't bat an eye, and was likely excited to see each of them. He is so sweet.
These boys are medicine. They are like a salve for my wounds. They make me smile when I'm sad, make me laugh when my heart is heavy, perk me up when I feel like I can't put one foot in front of the other for one more day. I am so grateful for my three little monkeys and can't wait to see what wonderful big brothers they are going to be to little Brigid.
Sunday, June 5, 2011
Kangaroo care
I've been able to do some kangaroo care with Brigid the last few times I've held her. It's skin-to-skin holding where I get to hold her against my chest. She seems to respond so well to it. I can imagine it feels and sounds like being in the womb again, where she could hear my heartbeat and my voice sounded different. It's such a special time for me too. 
She was opening her eyes and trying to lift up her head to look at me when we first started. I actually had to hold her head down so she didn't twist her ET tube. Then she fell asleep and was resting so comfortably. I love that she is holding on to my finger.
She is getting so big now. She was 3 lbs. 11 oz. at her last measurement - a full pound above her birth weight.
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