Sonne had a good night, though it's still way too early in her recovery to reliably read anything into it.
The best news is there were no major complications. Any of a million things can go wrong and so far they haven't. Knock on wood.
The second best news is she had many moments of interacting which were purely amazing. Slight finger squeezes, reaction to my voice and touch, great oral activity including sucking her ET tube, some flinching and kicking (she's a notorious wiggler) and best of all eye contact, albeit very drowsy. All of this is very positive stuff and necessary for her ultimate recovery. And once again her taking care of us.
On the neutral to negative side, there is no unaided heart rhythm and her kidney flow has virtually shut down after being initially promising. I categorize these as neutral to negative because they're not abnormal but it would be great if they were doing better. The heart surgeon said getting the heart rhythmic if it doesn't do it on its own is doable. However we don't expect to really get into that for a few more days after the muscle has healed more. In the meantime, her pacemaker keeps her heart moving.
As for her kidneys, it's again not uncommon for them to behave as they have. Like the heart, they were really overloaded by the stress of the surgery. They are basically on dialysis right now. The kidneys may start up again on their own, however they're also very responsive to the heart and likely to jump start when the heart does.
And as I'm writing this, we've just gotten results back on the other crucial organ, the brain. Head ultrasound shows no bleeding on the brain. This is hugely important and we're very happy about it.
There's still a long road ahead for our baby, but our hopes are bolstered.
At the end of that long road, there will be a rallying cry we love to shout softly even now - Free Sonne!
Tuesday, August 30, 2011
Monday night's Sonne report
I know you guys are curious and we feel blessed for all the support. Here are a few more details.
There were two complications in Sonne's heart that could only be discovered once the operation had begun. One was that her mitral valve was considerably less well genetically developed than expected. The other was a coronary artery being in the wrong place. The coronary artery complicated one of the repairs, but ultimately didn't prevent it. All of the repairs except the mitral valve were accomplished.
Repair of the mitral valve proved difficult, and ultimately, impossible. So a mechanical valve was inserted. It was improvised for her and far too large. Its success was in doubt, but it is currently holding. This was the longest, most difficult, most dangerous part of the surgery.
The intent at the end of the surgery was to take her off the heart lung machine and get her heart fully functioning again with blood flow. That could not be done due to the extreme amount of stress her heart experienced.
She is in the CardioThoracic ICU (CTICU) dependent on several machines, including ECMO (a type of heart lung machine) and a pacemaker. She will stay on this stuff for a few days and we hope her heart will recover enough to take over.
I must be honest. This could go either way. Time will tell.
We'll continue to update when possible, as we're believers in blogging and social media. It helps keep us going.
Thanks to everyone for your love. We're hugely grateful.
There were two complications in Sonne's heart that could only be discovered once the operation had begun. One was that her mitral valve was considerably less well genetically developed than expected. The other was a coronary artery being in the wrong place. The coronary artery complicated one of the repairs, but ultimately didn't prevent it. All of the repairs except the mitral valve were accomplished.
Repair of the mitral valve proved difficult, and ultimately, impossible. So a mechanical valve was inserted. It was improvised for her and far too large. Its success was in doubt, but it is currently holding. This was the longest, most difficult, most dangerous part of the surgery.
The intent at the end of the surgery was to take her off the heart lung machine and get her heart fully functioning again with blood flow. That could not be done due to the extreme amount of stress her heart experienced.
She is in the CardioThoracic ICU (CTICU) dependent on several machines, including ECMO (a type of heart lung machine) and a pacemaker. She will stay on this stuff for a few days and we hope her heart will recover enough to take over.
I must be honest. This could go either way. Time will tell.
We'll continue to update when possible, as we're believers in blogging and social media. It helps keep us going.
Thanks to everyone for your love. We're hugely grateful.
Sunday, August 28, 2011
Sonne's Heart
Sonne was born with congenital heart defects: tetralogy of Fallot and atrioventricular canal defect. We had hoped that she would be six to nine months adjusted age before requiring surgery, but unfortunately that is not the case.
Ten days ago Sonne was admitted to the hospital. Various tests ruled out viral infection and also GI problems related to her reflux. That left her heart conditions as the most likely culprit.
We met with the chief pediatric cardiothoracic surgeon here who felt she was big enough for the full corrective procedure to fix both her defects. Palliative measures were ruled out as her AV canal defect seemed to be dominating the situation and the palliative measures were more apt to help her tet condition, but exacerbate the AV canal.
I highly recommend watching "Something the Lord Made" if you are interested in learning more about tetralogy of Fallot. In terms of bizarre coincedences, Eric produced this movie for HBO about eight years ago. As for AV canal defect, the septum between her heart chambers didn't form in untero. The surgeon will graft pericardium into the heart to close the hole and then also repair the valves between the chambers.
Sonne will be the first or second procedure and by this time tomorrow she should be on her way from recovery to her room in the CTICU where we will be able to see her and breathe a Hugh sigh of relief. Until then, we appreciate all the positive energy folks can send our way.
Sonne is our sunshine, as her name suggests, and we know she will come through this with flying colors. She will be in the hospital for a week to ten days and then she will be back home and back to being her happy self; snacking and growing and smiling.
Ten days ago Sonne was admitted to the hospital. Various tests ruled out viral infection and also GI problems related to her reflux. That left her heart conditions as the most likely culprit.
We met with the chief pediatric cardiothoracic surgeon here who felt she was big enough for the full corrective procedure to fix both her defects. Palliative measures were ruled out as her AV canal defect seemed to be dominating the situation and the palliative measures were more apt to help her tet condition, but exacerbate the AV canal.
I highly recommend watching "Something the Lord Made" if you are interested in learning more about tetralogy of Fallot. In terms of bizarre coincedences, Eric produced this movie for HBO about eight years ago. As for AV canal defect, the septum between her heart chambers didn't form in untero. The surgeon will graft pericardium into the heart to close the hole and then also repair the valves between the chambers.
Sonne will be the first or second procedure and by this time tomorrow she should be on her way from recovery to her room in the CTICU where we will be able to see her and breathe a Hugh sigh of relief. Until then, we appreciate all the positive energy folks can send our way.
Sonne is our sunshine, as her name suggests, and we know she will come through this with flying colors. She will be in the hospital for a week to ten days and then she will be back home and back to being her happy self; snacking and growing and smiling.
Sunday, August 21, 2011
Day 4...Sigh
It's the first Sister's Day for our kiddos and they aren't together. Sigh...
Sonne has been in the hospital since Thursday. I am exhausted in a way I never was during their NICU days. At least there we knew what we were dealing with. They were premature and had growing to do. Here it seems as though no one has any definitive answers.
When I left yesterday Sonne was resting comfortably but he 5 o'clock feed didn't go well. They believe she aspirated breast milk because she stopped breathing (for less than a minute) and her O2 sats dropped into the 30s/40s. So they increased her oxygen flow significantly and moved her to a room across from the nurse's station so she would be closer to assistance if needed. I also just learned that during the move her heart rate dropped significantly a couple times.
I got to thinking that this was similar to what happened during her NEC scare in the NICU. I mentioned that to the nurse and will mention it to the attending physician when I speak with her later.
For now, she is resting comfortably. She's back on simple nasal canuoles at a low flow and her sats are holding well. We are still waiting for her viral panel to come back and I think they are trying to decide if she needs any additional tests.
As for Morgen, she is as cute as ever. Last night she peed the bed. Oh well...had I not fallen asleep while nursing her she would have gotten a fresh diaper before 7:45am. Doh! When I put her on the changing table she looked up at me with these bright blue eyes and gave me a huge smile. That's the first time I think she's done that - her smiles are usually gas related. That made my day start just right.
Eric should be arriving back in LA in a few hours. He's been trying to get here since the crack of dawn east coast time but Delta failed him leaving Boston so he missed his connection in Detroit. The poor guy. I know he had a good time at the wedding, but I also know that his enjoyment was shadowed by what's been going on here with Sonne.
As for me, I'm hanging in there. There are times when all I was to do is cry, but that really isn't going to help things. Mind you, I have let myself cry. I'm also not about to hold it all in. That wouldn't do me any good either. I'm very glad Eric will be here in a few hours. It will be easier to handle everything with my partner by my side.
Sonne has been in the hospital since Thursday. I am exhausted in a way I never was during their NICU days. At least there we knew what we were dealing with. They were premature and had growing to do. Here it seems as though no one has any definitive answers.
When I left yesterday Sonne was resting comfortably but he 5 o'clock feed didn't go well. They believe she aspirated breast milk because she stopped breathing (for less than a minute) and her O2 sats dropped into the 30s/40s. So they increased her oxygen flow significantly and moved her to a room across from the nurse's station so she would be closer to assistance if needed. I also just learned that during the move her heart rate dropped significantly a couple times.
I got to thinking that this was similar to what happened during her NEC scare in the NICU. I mentioned that to the nurse and will mention it to the attending physician when I speak with her later.
For now, she is resting comfortably. She's back on simple nasal canuoles at a low flow and her sats are holding well. We are still waiting for her viral panel to come back and I think they are trying to decide if she needs any additional tests.
As for Morgen, she is as cute as ever. Last night she peed the bed. Oh well...had I not fallen asleep while nursing her she would have gotten a fresh diaper before 7:45am. Doh! When I put her on the changing table she looked up at me with these bright blue eyes and gave me a huge smile. That's the first time I think she's done that - her smiles are usually gas related. That made my day start just right.
Eric should be arriving back in LA in a few hours. He's been trying to get here since the crack of dawn east coast time but Delta failed him leaving Boston so he missed his connection in Detroit. The poor guy. I know he had a good time at the wedding, but I also know that his enjoyment was shadowed by what's been going on here with Sonne.
As for me, I'm hanging in there. There are times when all I was to do is cry, but that really isn't going to help things. Mind you, I have let myself cry. I'm also not about to hold it all in. That wouldn't do me any good either. I'm very glad Eric will be here in a few hours. It will be easier to handle everything with my partner by my side.
Monday, August 15, 2011
Three Months
Oh how we love these girls!
Yesterday they turned three months old and yet every day it feels like something new is happening.
Morgen has begun the "only mommy makes me feel better" phase. She was already the more clingy girl but that tendency has grown. It's hard to find time in the day to do anything besides cuddle that little girl. I'm not complaining, not by any means. There is something absolutely wonderful about holding my girl and having her little arms around my neck (not that they reach around per se, but rather settle at either side by my collarbones).
Sonne is growing like a weed. Well...they both are, but with Sonne the changes seem so much more prominent. I have to assume that's because of her smaller size still. Sure, she's putting on some baby fat, but she's getting noticeably longer. I'm watching her nap in the swing at the moment and I swear she's bigger than she was yesterday.
Today the girls are being evaluated by a physical therapist who works for a regional center. They were referred there by the NICU due to their prematurity. There is a chance that they will be accepted into a program to assist them with their development. Then again, the therapist might look at them and say that they seem on target based on their adjusted age. We shall see.
As for us parents, we spend our spare time cleaning out the house. We are on a huge mission to get rid of the crap we have stored inside and out. Do we need it? Do we love it? Does it have sentimental value so we want to keep it? No? Goodbye! Of course, we filled the trash can quickly yesterday and have more to go so I'm waiting until the trash pick up tomorrow to continue the pitching mission.
As for me, I'm doing okay. Some days are easier than others. Yesterday morning was a tough one. Thankfully Eric let me run out to the brew shop on my own so I could have a little break from nursing what seemed like 24/7 on Friday and Saturday. I needed the hour break. And, if all goes as planned, tomorrow I will be brewing up a Honingweizen which we will keg for a Labor Day weekend BBQ. Fingers crossed.
I'm mentally preparing now for Eric to be out of town for a few days later this week. He's heading to The Cape for our dear friends' wedding. I wish I were going as well, but traveling with these two would just be too much. We have our routine, so to speak, here and messing with it seems silly. I'm just worried about managing both girls during the night. Why the night is more daunting than the day, I'm not sure. I'll figure it out certainly. I'm not the first mom who had to manage two infants on her own for a few days. And I'd rather be home with the girls than away from them. Daddy is going to seriously miss them. Heck, we both miss them when we are gone for more than a few hours!
Anyhow...I'm grateful for the challenges whether they be how to nurse both girls at once or how to be okay with letting one cry while tending to the needs of her sister. I'm grateful that I have this opportunity. I so love these two girls and cannot wait to teach them about the world and watch them explore it for themselves.
Yesterday they turned three months old and yet every day it feels like something new is happening.
Morgen has begun the "only mommy makes me feel better" phase. She was already the more clingy girl but that tendency has grown. It's hard to find time in the day to do anything besides cuddle that little girl. I'm not complaining, not by any means. There is something absolutely wonderful about holding my girl and having her little arms around my neck (not that they reach around per se, but rather settle at either side by my collarbones).
Sonne is growing like a weed. Well...they both are, but with Sonne the changes seem so much more prominent. I have to assume that's because of her smaller size still. Sure, she's putting on some baby fat, but she's getting noticeably longer. I'm watching her nap in the swing at the moment and I swear she's bigger than she was yesterday.
Today the girls are being evaluated by a physical therapist who works for a regional center. They were referred there by the NICU due to their prematurity. There is a chance that they will be accepted into a program to assist them with their development. Then again, the therapist might look at them and say that they seem on target based on their adjusted age. We shall see.
As for us parents, we spend our spare time cleaning out the house. We are on a huge mission to get rid of the crap we have stored inside and out. Do we need it? Do we love it? Does it have sentimental value so we want to keep it? No? Goodbye! Of course, we filled the trash can quickly yesterday and have more to go so I'm waiting until the trash pick up tomorrow to continue the pitching mission.
As for me, I'm doing okay. Some days are easier than others. Yesterday morning was a tough one. Thankfully Eric let me run out to the brew shop on my own so I could have a little break from nursing what seemed like 24/7 on Friday and Saturday. I needed the hour break. And, if all goes as planned, tomorrow I will be brewing up a Honingweizen which we will keg for a Labor Day weekend BBQ. Fingers crossed.
I'm mentally preparing now for Eric to be out of town for a few days later this week. He's heading to The Cape for our dear friends' wedding. I wish I were going as well, but traveling with these two would just be too much. We have our routine, so to speak, here and messing with it seems silly. I'm just worried about managing both girls during the night. Why the night is more daunting than the day, I'm not sure. I'll figure it out certainly. I'm not the first mom who had to manage two infants on her own for a few days. And I'd rather be home with the girls than away from them. Daddy is going to seriously miss them. Heck, we both miss them when we are gone for more than a few hours!
Anyhow...I'm grateful for the challenges whether they be how to nurse both girls at once or how to be okay with letting one cry while tending to the needs of her sister. I'm grateful that I have this opportunity. I so love these two girls and cannot wait to teach them about the world and watch them explore it for themselves.
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