After the long journey of the past couple days there are so many things to write about and so many improvements and challenges that time has slipped away from us and this update is coming essentially a day late.
Because of all that's gone on, I think I'm going to take a less elegant approach to this post and provide a snapshot via list of Aurelia's journey and current situation.
Yesterday, day one of Aurelia's recovery, featured some great strides and a few setbacks, but all in all it was a very good day.
- Aurelia's incision looked good and the amount of blood coming from her chest cavity fell so much that the doctor's removed her drainage tube.
- Similarly, her blood-gas readings progressed to such a point that the doctors removed both her breathing tube (taking her off the respirator) and her sump (leaving her intestines to process all the fluid/nutrients in her stomach.
- In preparation for feedings later in the day the team installed a feeding tube through her left nostril. As a side note, when they removed the breathing tube and suctioned out her nose in advance of inserting her feeding tube the doctor's pulled out more mucus and snot and dried blood than I knew possible. It makes me more than a little sketched out to think about just what is sitting in my sinuses.
- Our first scare came when Aurelia had a wet diaper. As silly as that sounds, Aurelia so hates wet diapers that she worked herself into a fierce frenzy that resulted in a back flow of non-oxygenated blood above her pulmonary artery. This, literally, turned Aurelia blue. As the blood Aurelia needed to oxygenate got clogged above her pulmonary artery her oxygen saturation rate fell precipitously and the team installed a nasal line and forced room air into her lungs at 70% capacity. After about fifteen minutes of actually suffocating her body Aurelia calmed down and over the course of the evening the team dialed back her room oxygen intake to 50% (where it remained until earlier today when it dropped to 40%).
- Our second setback came when Aurelia's fluid intake level became too high. While she did pee (thank God for the pee!), she hadn't had any bowel movements and she wasn't peeing nearly enough. This kept us from starting scheduled feeds and prevented us from doing anything than a mouth treatment, or a coating of the lips and gums with breast milk.
Evening rounds passed without event and when we arrived this morning our current situation two days after the surgery included:
- Aurelia still having too much fluid in her, an x-ray showing hazy lungs, and lasix being ordered for her to compensate her decreased kidney output.
- Two bowel movements (yippee!) putting us back on schedule for feedings to start today.
- Bleeding from her incision (yikes!) that was clearly more than post-operation oozing, but not enough bleeding to cause a change in her vital signs. Still, it was worrisome enough to generate two ultrasounds and an x-ray
- a slight increase in the amount of fluid her kidney processed resulting in only a +100 or so intake from her second day.
Thankfully, we had a good day after those few concerns. Genetic screening (a genome array test) came back and showed no anomalies, meaning that as of now Aurelia and all her problems is simply our beautiful and perfect freak of nature and not the victim of a genetic disorder. Our geneticists are ordering one last test that is the best insurance can buy to see if there are any abnormalities at all that could account for all these problems. This test will take some time to come back, but we are thrilled to know that there is no genetic syndrome at play in our new daughter's struggles.
Additionally, Aurelia had only one real temper tantrum today and she recovered well, meaning that we didn't need to increase the amount of oxygen she received. Similarly, the ultrasound of her head and chest (as well as the x-ray) came back negative, proving that her heart was not bleeding and that there was no fluid build up around her heart or in her heart cavity, or around her lungs. The best guess of the team is that her chest muscles acquired increased blood levels during and after surgery and this is the subsequent squeezing of a sponge; her muscles releasing this blood intake and her incision becoming the natural outlet for the blood.
Dr. Ince also heard bowel sounds during her rounds and because of the two bowel movements we started Aurelia on feeds through her nasal tube. She has had two 5 ml feedings and one 10 ml feeding as of my writing. She will get feeds every three hours or so, barring any complications.
Lastly, Aurelia has had two ENORMOUS diapers, and when we say enormous we mean GARGANTUAN! These things weighed a ton, by all accounts. Or maybe a couple of ounces, but still, it means that she's now really passing that fluid.
Other than that, the medical news is stable and good. She's progressing well and it seems as if the bleeding at her incision has slowed. I'll keep you posted as I learn more and perhaps post a more 'human' reaction to the last several days.
With love,
Charley
Wednesday, October 6, 2010
Tuesday, October 5, 2010
Her next heartbeat
Jillian and I are the sort of tired happy that comes after a long car trip - happy to be at your destination, unsure of exactly how you got there, and worried about what else could possibly go wrong before the day is over.
Aurelia is amazing. I am astounded at her resiliency and fortitude. This girl was born with so many complications, so many problems, endured invasive bowel surgery during her first day and followed up that performance with open heart surgery at age eleven days. Just yesterday her sternum was cracked, her ribs spread wide, and her body frozen into submission. Today she is resting, with a half-smile on her face and covered in residual orange dye; a silly sort of October pumpkin.
The surgery yesterday took far longer than we had hoped or even considered. Aurelia was out of our hands and actually in surgery from seven-thirty in the morning to three in the afternoon. In surgery the doctors changed their game plan after they saw the situation in her heart. The initial plan included putting Aurelia on bypass and then banding her pulmonary artery before making any incisions into the actual heart (excluding the sack that exists around the muscle). When they got in to her chest, however, they recognized that the aortic arch was far more narrowed than anticipated and required their skilled attention first. Thankfully, Dr. Gruber insisted on going in her chest and his decision made sure that they widened all of the narrowed parts of`Aurelia's arch; had they done the previously mentioned side incision they would have missed part of her narrowed aorta and would have likely needed to do a second surgery.
While I am on the topic of Dr. Gruber, I want to make sure I record just how amazing it was to see him in action yesterday morning. On Sunday all of the cardiac surgeons & fellows, some fifteen in all, met and discussed Aurelia's case. Dr. Gruber chaired that meeting from Cleveland (he was at a speaking engagement) and apparently a number of the team disagreed with his assessment that we enter Aurelia's chest cavity from the front.
When we met with Dr. Pillai that Sunday afternoon the message we received was that of the dissenting team members - that Aurelia's surgery would be from the side, most likely - and we were happy with the decision to go with a less invasive procedure. At crib-side Monday morning Dr. Gruber gave us one final debriefing on the procedure and mentioned going in from the front. Jillian noticed the discrepancy immediately and made mention of the plans we heard the day before to go in through her ribcage.
Dr. Gruber underwent some sort of Fellow Transformation, reserved for only the experts in his field. First he ordered one nurse (or doctor, for that matter - nobody outranked him during those next few moments, no matter their title) to retrieve Aurelia's paperwork. He concisely, but not rudely, discredited the fellow who conferenced with us Sunday by indicating his utter displeasure with our receiving incorrect information. His words to us included, "I'm not sure what that Fellow heard or said, but there clearly was a miscommunication. The plan was never to go in through the side. There was some questioning of what our final decision would be, but I clearly ruled out going in from the side."
After he directed the many staff to clean and re-stamp Aurelia on the front of her chest he called surgery and seemed pleased that everyone in the operating room had been planning to go in through Aurelia's chest. Thankfully the repair to Aurelia's arch, facilitated by that decision to open her chest, went without incident. I have such a hard time trying to imagine my daughter laying on an operating table with her chest open wide and blue from the cold that has shut down all the major systems of her body. I just can't fathom what it looked like to watch her heart slow and slow one beat at a time until it sat silent and still. I cry thinking about her there, her body dead and a machine carrying precious oxygen and blood to her brain and limbs.
The surgical team moved quickly after that, repairing the band and slowly moving Aurelia off bypass. At this point the first of the challenges facing Aurelia (as if all that came before was easy!) manifested itself in the form of excessive bleeding. Throughout any complicated surgery like this many nicks and cuts are made in the body, along veins and organs and muscle and tissue, but very rarely is bleeding seen by the surgical team. A body in Aurelia's state is so cold that you can't see the amount of bleeding until they begin to take her off bypass and warm her up, waking her heart from its slumber.
Aurelia underwent a series of cooling procedures over two and a half hours to slow the excessive bleeding inside her chest cavity. These procedures amounted to literally filling Aurelia with ice, waiting fifteen minutes, warming her up again, checking for bleeding and re-applying ice if needed. Eventually Aurelia's leaks sealed themselves and the doctors made sure that all the vents and lines into her firmly lay in place. At that point Aurelia had a drainage line installed, two pacemaker wires, an IV directly to her chest cavity and heart, another IV in her foot, and an arterial line into her belly button.
We met with Dr. Gruber after the surgery for his recounting of the surgery and he showed enthusiasm and pleasure with Aurelia's progress. Other than her bleeding he felt confident that she would emerge from the procedure with much improved breathing and heart function. Dr. Gruber decided to set the pulmonary artery function at 90% its original and he avoided looking for other potential problems with Aurelia's mitral valve and her existing muscular VSD (the large hole between her left and right ventricle). Jillian and I were happy with the outcome and Dr. Gruber's decision to avoid looking for further problems with Aurelia's valve and hole, because both may improve themselves over time and because the valve may actually not have much of a problem once her heart regains strength.
When we first saw Aurelia we were thrilled. As scary and difficult as it was to look at her I will never forget the joy in my heart at that moment. All that afternoon and evening I felt like running and hugging and kissing everyone I saw, from Dr. Ince to the admitting orderly out by the entrance to the CICU. Jillian felt more than mild embarrassment at my excitement and expression. I don't blame her. It's quite possible that I mortified not only Jillian, but Aurelia, too.
After about one hour the bleeding from Aurelia's chest cavity slowed to barely a trickle and we started to face the second and far worse concern with her surgery, this time revolving around urine. When put on bypass and our temperatures lowered our systems shut down one by one. As we come back to life our body slowly regains heat (Aurelia's temperature still hadn't reached normal two hours after her surgery finished) in controlled increments and the body's systems begin to reboot one by one. We skipped over any trouble with Aurelia's respiratory system by having her on the machine that took care of that process for her, her bleeding in her circulatory system had slowly come under control, her nervous system seemed to be intact, she hadn't suffered any strokes, and brain function appeared normal.
Unfortunately, prior to, during, and after surgery Aurelia hadn't passed any urine through her catheter. In any normal person this wouldn't raise much of a concern, but with only one kidney the chance of system shock and failure meant life or death for our baby girl. Dr. Ince, whose praises I sang before, kept a measured response and reassured Jillian and I that this sort of delay did not mean anything out of the ordinary. Stressed nonetheless we felt increasing tension as the minutes went by and as the staff began discussing their response to a kidney failure. The sheer mention of 'what if' scenarios had me in near panic. All I wanted for her was to pee. I have never, ever, wanted anyone to pee so badly in my life.
She kept us waiting nearly two hours, the cut off point for 'no concern' we later found out, until we saw a few drops in her catheter. I about jumped for joy at the sight of a yellow droplet in her tube. This seems silly, I suppose, but looking at her bruised chest, swollen face and arms, and knowing that all that fluid she had been infused with during surgery had to escape, I think I actually felt more fear than I did when they wheeled her away for the operation earlier that morning.
We stayed late last evening with her and left her happy that she once again faced down tough odds and beat them with courage and tenacity. Though a machine was breathing for her and her chest still bled some, and despite the low urine output, Aurelia inspired strength and hope in us that we needed to fight back the worry and concern we felt all day.
I confess that at points during the day I let my mind drift away to places dark and sad, wondering what it would be like to lose her. We agreed to participate in a genetic study before Aurelia's surgery, permitting the CHOP staff to keep tissue and blood samples from Aurelia's heart permanently. Dr. Gruber and his team will use the sample (amongst many others) to try and identify the genetic cause behind HLHS. It is suspected that the disease is genetic, but much more work needs to be done before a specific cause is identified. I found a minuscule measure of comfort knowing that even if she died, Aurelia's heart and blood could still help someone else at risk of HLHS. I even felt good knowing that if Aurelia's DNA showed anything even remotely useful that Jillian and I could then give our own DNA and blood to support scholarship and research into the defect.
As for today, other than one minor scare, Aurelia continues to do well. I'll give a more detailed post a little later, but I know folks have been waiting for details so I wanted to write this before my memory lost pieces of Aurelia's journey.
Thank you everyone, for all your positive thoughts and prayers and love. Your support has resulted in immeasurable strength needed and used by Jillian and me. We love you.
Aurelia is amazing. I am astounded at her resiliency and fortitude. This girl was born with so many complications, so many problems, endured invasive bowel surgery during her first day and followed up that performance with open heart surgery at age eleven days. Just yesterday her sternum was cracked, her ribs spread wide, and her body frozen into submission. Today she is resting, with a half-smile on her face and covered in residual orange dye; a silly sort of October pumpkin.
The surgery yesterday took far longer than we had hoped or even considered. Aurelia was out of our hands and actually in surgery from seven-thirty in the morning to three in the afternoon. In surgery the doctors changed their game plan after they saw the situation in her heart. The initial plan included putting Aurelia on bypass and then banding her pulmonary artery before making any incisions into the actual heart (excluding the sack that exists around the muscle). When they got in to her chest, however, they recognized that the aortic arch was far more narrowed than anticipated and required their skilled attention first. Thankfully, Dr. Gruber insisted on going in her chest and his decision made sure that they widened all of the narrowed parts of`Aurelia's arch; had they done the previously mentioned side incision they would have missed part of her narrowed aorta and would have likely needed to do a second surgery.
While I am on the topic of Dr. Gruber, I want to make sure I record just how amazing it was to see him in action yesterday morning. On Sunday all of the cardiac surgeons & fellows, some fifteen in all, met and discussed Aurelia's case. Dr. Gruber chaired that meeting from Cleveland (he was at a speaking engagement) and apparently a number of the team disagreed with his assessment that we enter Aurelia's chest cavity from the front.
When we met with Dr. Pillai that Sunday afternoon the message we received was that of the dissenting team members - that Aurelia's surgery would be from the side, most likely - and we were happy with the decision to go with a less invasive procedure. At crib-side Monday morning Dr. Gruber gave us one final debriefing on the procedure and mentioned going in from the front. Jillian noticed the discrepancy immediately and made mention of the plans we heard the day before to go in through her ribcage.
Dr. Gruber underwent some sort of Fellow Transformation, reserved for only the experts in his field. First he ordered one nurse (or doctor, for that matter - nobody outranked him during those next few moments, no matter their title) to retrieve Aurelia's paperwork. He concisely, but not rudely, discredited the fellow who conferenced with us Sunday by indicating his utter displeasure with our receiving incorrect information. His words to us included, "I'm not sure what that Fellow heard or said, but there clearly was a miscommunication. The plan was never to go in through the side. There was some questioning of what our final decision would be, but I clearly ruled out going in from the side."
After he directed the many staff to clean and re-stamp Aurelia on the front of her chest he called surgery and seemed pleased that everyone in the operating room had been planning to go in through Aurelia's chest. Thankfully the repair to Aurelia's arch, facilitated by that decision to open her chest, went without incident. I have such a hard time trying to imagine my daughter laying on an operating table with her chest open wide and blue from the cold that has shut down all the major systems of her body. I just can't fathom what it looked like to watch her heart slow and slow one beat at a time until it sat silent and still. I cry thinking about her there, her body dead and a machine carrying precious oxygen and blood to her brain and limbs.
The surgical team moved quickly after that, repairing the band and slowly moving Aurelia off bypass. At this point the first of the challenges facing Aurelia (as if all that came before was easy!) manifested itself in the form of excessive bleeding. Throughout any complicated surgery like this many nicks and cuts are made in the body, along veins and organs and muscle and tissue, but very rarely is bleeding seen by the surgical team. A body in Aurelia's state is so cold that you can't see the amount of bleeding until they begin to take her off bypass and warm her up, waking her heart from its slumber.
Aurelia underwent a series of cooling procedures over two and a half hours to slow the excessive bleeding inside her chest cavity. These procedures amounted to literally filling Aurelia with ice, waiting fifteen minutes, warming her up again, checking for bleeding and re-applying ice if needed. Eventually Aurelia's leaks sealed themselves and the doctors made sure that all the vents and lines into her firmly lay in place. At that point Aurelia had a drainage line installed, two pacemaker wires, an IV directly to her chest cavity and heart, another IV in her foot, and an arterial line into her belly button.
We met with Dr. Gruber after the surgery for his recounting of the surgery and he showed enthusiasm and pleasure with Aurelia's progress. Other than her bleeding he felt confident that she would emerge from the procedure with much improved breathing and heart function. Dr. Gruber decided to set the pulmonary artery function at 90% its original and he avoided looking for other potential problems with Aurelia's mitral valve and her existing muscular VSD (the large hole between her left and right ventricle). Jillian and I were happy with the outcome and Dr. Gruber's decision to avoid looking for further problems with Aurelia's valve and hole, because both may improve themselves over time and because the valve may actually not have much of a problem once her heart regains strength.
When we first saw Aurelia we were thrilled. As scary and difficult as it was to look at her I will never forget the joy in my heart at that moment. All that afternoon and evening I felt like running and hugging and kissing everyone I saw, from Dr. Ince to the admitting orderly out by the entrance to the CICU. Jillian felt more than mild embarrassment at my excitement and expression. I don't blame her. It's quite possible that I mortified not only Jillian, but Aurelia, too.
After about one hour the bleeding from Aurelia's chest cavity slowed to barely a trickle and we started to face the second and far worse concern with her surgery, this time revolving around urine. When put on bypass and our temperatures lowered our systems shut down one by one. As we come back to life our body slowly regains heat (Aurelia's temperature still hadn't reached normal two hours after her surgery finished) in controlled increments and the body's systems begin to reboot one by one. We skipped over any trouble with Aurelia's respiratory system by having her on the machine that took care of that process for her, her bleeding in her circulatory system had slowly come under control, her nervous system seemed to be intact, she hadn't suffered any strokes, and brain function appeared normal.
Unfortunately, prior to, during, and after surgery Aurelia hadn't passed any urine through her catheter. In any normal person this wouldn't raise much of a concern, but with only one kidney the chance of system shock and failure meant life or death for our baby girl. Dr. Ince, whose praises I sang before, kept a measured response and reassured Jillian and I that this sort of delay did not mean anything out of the ordinary. Stressed nonetheless we felt increasing tension as the minutes went by and as the staff began discussing their response to a kidney failure. The sheer mention of 'what if' scenarios had me in near panic. All I wanted for her was to pee. I have never, ever, wanted anyone to pee so badly in my life.
She kept us waiting nearly two hours, the cut off point for 'no concern' we later found out, until we saw a few drops in her catheter. I about jumped for joy at the sight of a yellow droplet in her tube. This seems silly, I suppose, but looking at her bruised chest, swollen face and arms, and knowing that all that fluid she had been infused with during surgery had to escape, I think I actually felt more fear than I did when they wheeled her away for the operation earlier that morning.
We stayed late last evening with her and left her happy that she once again faced down tough odds and beat them with courage and tenacity. Though a machine was breathing for her and her chest still bled some, and despite the low urine output, Aurelia inspired strength and hope in us that we needed to fight back the worry and concern we felt all day.
I confess that at points during the day I let my mind drift away to places dark and sad, wondering what it would be like to lose her. We agreed to participate in a genetic study before Aurelia's surgery, permitting the CHOP staff to keep tissue and blood samples from Aurelia's heart permanently. Dr. Gruber and his team will use the sample (amongst many others) to try and identify the genetic cause behind HLHS. It is suspected that the disease is genetic, but much more work needs to be done before a specific cause is identified. I found a minuscule measure of comfort knowing that even if she died, Aurelia's heart and blood could still help someone else at risk of HLHS. I even felt good knowing that if Aurelia's DNA showed anything even remotely useful that Jillian and I could then give our own DNA and blood to support scholarship and research into the defect.
As for today, other than one minor scare, Aurelia continues to do well. I'll give a more detailed post a little later, but I know folks have been waiting for details so I wanted to write this before my memory lost pieces of Aurelia's journey.
Thank you everyone, for all your positive thoughts and prayers and love. Your support has resulted in immeasurable strength needed and used by Jillian and me. We love you.
Monday, October 4, 2010
She made it!
It has been a tremendously long day with many delays, but she made it! There is much more to write and say, but for now we are out of the darkest woods and into the thickets. She has weathered the storm and Jillian and I know with certainty that neither she, nor we, could have made it without your love and support. Thank you!.
Mid-surgery update
Just a quick mid-surgery update:
Pulmonary band is in place. Aortic bridge is sliced and enlarged with the transplanted material. All the lines are in place on her.
Her chest is still open and they are waiting for the bleeding to slow. Her bleeding rate right now is 'normal' as far as that goes, but it still worries the sh*t out of me. Yes, I said sh*t. When you do this type of surgery with this many sutures, then there is a good bit of 'leaking'. Once the bleeding slows they will close her up.
More news as we get it from our nurse.
Pulmonary band is in place. Aortic bridge is sliced and enlarged with the transplanted material. All the lines are in place on her.
Her chest is still open and they are waiting for the bleeding to slow. Her bleeding rate right now is 'normal' as far as that goes, but it still worries the sh*t out of me. Yes, I said sh*t. When you do this type of surgery with this many sutures, then there is a good bit of 'leaking'. Once the bleeding slows they will close her up.
More news as we get it from our nurse.
I'm not even sure...
I'm not even sure what to write about today. Aurelia has gone in for her surgery and is very likely just now undergoing her first incisions. We stayed the night here at the hospital, cramming ourselves into a single bed so that we could be here for our girl. Jillian pumped crib-side and I managed to get all the materials finished for today's, tomorrow's and Wednesday's lessons so when the early morning rose we could spend as much time with her as possible.
Our morning was quiet and tense, nervous and upsetting, and full of loving moments. We whispered affections to Aurelia and held her tight in our hands. I felt her hand on my face, kissed her little lips and nose, and caressed her cheeks and forehead. I cried at her smile and smiled at her little pout. Jillian and I split our time this morning holding her and covering her with kisses.
Her surgery has changed somewhat since we last conferred with cardiology. Today they will go in through her chest (we thought as of yesterday that the incision would be in her side), they will insert a variety of tubes and lines and wires into her before they begin the surgery. She will have several wires laid upon her chest to monitor any potential disrhythmia. She will also have a line placed into her wrist to function as her IV, and a drain inserted into her chest cavity. There is a possibility that they will insert a line directly into her heart to function as an IV if it is needed. She also had an arterial line put into her belly button and of course a catheter.
The plan is to place a band around her pulmonary artery to restrict the amount of blood flowing into her lungs (which leads to fluid build up and problems or troubles breathing and eating) and then make an incision along her tiny aortic bridge, spread it apart and graph it together with donated tissue (called a homeograph). If that tissue doesn't take then they will use a synthetic material. Of course before any of this can be done she has to be put on full bypass and transfused with a variety of blood products to thin her blood, then help it clot later in the surgery.
Essentially they stop all blood flow to the heart, drop her temperature to about 17 degrees celsius, or 62 degrees Fahrenheit, so that her heart slows to what is in essence a stop. Once her heart is ready for the first incision they will work on the aorta. They will also be collecting small parts of her heart that are typically discarded during surgery and using them in a study which we will talk about at a later time.
I forgot to mention that they will have to open up the sack that normally surrounds the heart and they will actually leave that open and insert what amount to several man made valves into her heart that they will then keep there to use in future surgeries or her recovery, should they need them. Ideally, Aurelia's sternum will still be more cartilage than bone so that they will be able to pack it with what amounts to a paste to help the bone meld together again. If her sternum is all bone they will then have to wire the bone with a non-magnetic wire that they will then remove for her second surgery.
Our nurse just came in for our second update since she's been gone, and Aurelia has been undergoing the actual repair for about twenty minutes. Things are going according to plan. That's about all we have for now, aside from red-eyes and headaches. We'll keep you all updated as we can.
Our morning was quiet and tense, nervous and upsetting, and full of loving moments. We whispered affections to Aurelia and held her tight in our hands. I felt her hand on my face, kissed her little lips and nose, and caressed her cheeks and forehead. I cried at her smile and smiled at her little pout. Jillian and I split our time this morning holding her and covering her with kisses.
Her surgery has changed somewhat since we last conferred with cardiology. Today they will go in through her chest (we thought as of yesterday that the incision would be in her side), they will insert a variety of tubes and lines and wires into her before they begin the surgery. She will have several wires laid upon her chest to monitor any potential disrhythmia. She will also have a line placed into her wrist to function as her IV, and a drain inserted into her chest cavity. There is a possibility that they will insert a line directly into her heart to function as an IV if it is needed. She also had an arterial line put into her belly button and of course a catheter.
The plan is to place a band around her pulmonary artery to restrict the amount of blood flowing into her lungs (which leads to fluid build up and problems or troubles breathing and eating) and then make an incision along her tiny aortic bridge, spread it apart and graph it together with donated tissue (called a homeograph). If that tissue doesn't take then they will use a synthetic material. Of course before any of this can be done she has to be put on full bypass and transfused with a variety of blood products to thin her blood, then help it clot later in the surgery.
Essentially they stop all blood flow to the heart, drop her temperature to about 17 degrees celsius, or 62 degrees Fahrenheit, so that her heart slows to what is in essence a stop. Once her heart is ready for the first incision they will work on the aorta. They will also be collecting small parts of her heart that are typically discarded during surgery and using them in a study which we will talk about at a later time.
I forgot to mention that they will have to open up the sack that normally surrounds the heart and they will actually leave that open and insert what amount to several man made valves into her heart that they will then keep there to use in future surgeries or her recovery, should they need them. Ideally, Aurelia's sternum will still be more cartilage than bone so that they will be able to pack it with what amounts to a paste to help the bone meld together again. If her sternum is all bone they will then have to wire the bone with a non-magnetic wire that they will then remove for her second surgery.
Our nurse just came in for our second update since she's been gone, and Aurelia has been undergoing the actual repair for about twenty minutes. Things are going according to plan. That's about all we have for now, aside from red-eyes and headaches. We'll keep you all updated as we can.
Saturday, October 2, 2010
Busy busy busy
It has been a bit busy over at what I'm now calling the Fall Cottage, or Children's Hospital of Philadelphia. Aurelia was moved from one pod to another (not a very stressful or difficult thing, but the staff needed to shuffle around some room for beds. Overall, she's doing well and stable for the most part, but there have been numerous small changes and alterations to her treatment as they prepare her as best they can for Monday's surgery.
In general treatment over the last few days has revolved around Aurelia's digestion and breathing. Initially our plan was to have feedings begin on Friday, but general surgery wants to wait until some time after Monday since Aurelia's stomach still isn't processing enough fluid. This isn't really a problem, and it's certainly not something that has anyone too concerned, just a readjustment of an already fluid timetable.
The only real ailment that our team is watching very closely during these last few days is Aurelia's breathing, or respiratory rate. She had been on a diuretic two times a day earlier in the week, but seemed not to need so much help ridding herself of fluid so the team dropped the dosage to one. They also stopped her daily chest x-ray and adjusted her electrolytes as she began to have some changes in her nutrition intake.
This morning, however, Aurelia's respiratory rate climbed and hovered in the 100's. Normally somewhere in the sixties or seventies, this constantly elevated rate caused her too much duress so they administered some additional lasix and moved her diuretic up to the original twice a day dosage. The doctors anticipated ordering an afternoon chest x-ray but our girl bounced back, filled up her diapers, and has a negative fluid level for the day so that precaution has been called off.
This makes me very glad because her quick response to the medication and her rather exuberant urination means her kidney is working great. Add to that the still decreasing amount of fluid coming from her stomach and she's still doing well. Her weight loss is well within normal limits as well, and the only thing we'll see in the future that is new to us today is the arrival of a central line after surgery. We expected this, but in the commotion and details of Aurelia's case we both forgot that she'd have this procedure done to supplement her feedings after Monday's surgery.
The nursing staff is still great and Jillian and I were excited to see our favorite, Pam, come over to our pod and visit with us for a good ten minutes. We just chit-chatted and got caught up, but it really made us feel welcome and a part of the care team here in the CICU. Every nurse has her own personality of course, but Pam really makes this place feel like home for us, and in a scary place where children in warmers or cribs come and go, nurses and doctors scurry from one patient to the next, and monitors beep ominously over the heads of innocent babies, that says something.
There was even a moment where six or seven nurses gathered in our pod (only one baby beside Aurelia is here) and just talked with one another, laughing and chuckling, sharing stories and smiles, and it made Jillian and I feel so relaxed and relieved, and really comfortable among everyone working. We didn't feel at all in the way or unwelcome or awkward, and that is great.
I'll post an additional reflection later today, but it had been some time since we updated and I wanted to share this news. A few other things to share include my 4th period students chipping in together and convincing the mother of one of the students to create and gift us with this amazing flower arrangement brimming with care and love and concern. I cried in class (and over lunch when they couldn't see me) and Jillian cried as well when she got the voice-mail. Madison was hysterical when she saw me today, running toward me in the parking garage and then being so excited she ran in circles around me with a huge smile. I think most special of all (other than those moments when Madison was snuggled on my shoulder napping) was holding Aurelia for a good hour straight. She kept her body temperature up, she cooed, smiled, pursed her lips, made little faces, pooped (yay!), and twitched away in her dreamland. It was heavenly, even though I was exhausted and could barely keep my eyes open!
For now Jillian and I are going to head back to the Ronald McDonald House and get some dinner and then call it a night. As much as I'd love to be here for hours this evening, I need to rest up and prepare for what will be a very stressful few days and evenings. Love to you all!
In general treatment over the last few days has revolved around Aurelia's digestion and breathing. Initially our plan was to have feedings begin on Friday, but general surgery wants to wait until some time after Monday since Aurelia's stomach still isn't processing enough fluid. This isn't really a problem, and it's certainly not something that has anyone too concerned, just a readjustment of an already fluid timetable.
The only real ailment that our team is watching very closely during these last few days is Aurelia's breathing, or respiratory rate. She had been on a diuretic two times a day earlier in the week, but seemed not to need so much help ridding herself of fluid so the team dropped the dosage to one. They also stopped her daily chest x-ray and adjusted her electrolytes as she began to have some changes in her nutrition intake.
This morning, however, Aurelia's respiratory rate climbed and hovered in the 100's. Normally somewhere in the sixties or seventies, this constantly elevated rate caused her too much duress so they administered some additional lasix and moved her diuretic up to the original twice a day dosage. The doctors anticipated ordering an afternoon chest x-ray but our girl bounced back, filled up her diapers, and has a negative fluid level for the day so that precaution has been called off.
This makes me very glad because her quick response to the medication and her rather exuberant urination means her kidney is working great. Add to that the still decreasing amount of fluid coming from her stomach and she's still doing well. Her weight loss is well within normal limits as well, and the only thing we'll see in the future that is new to us today is the arrival of a central line after surgery. We expected this, but in the commotion and details of Aurelia's case we both forgot that she'd have this procedure done to supplement her feedings after Monday's surgery.
The nursing staff is still great and Jillian and I were excited to see our favorite, Pam, come over to our pod and visit with us for a good ten minutes. We just chit-chatted and got caught up, but it really made us feel welcome and a part of the care team here in the CICU. Every nurse has her own personality of course, but Pam really makes this place feel like home for us, and in a scary place where children in warmers or cribs come and go, nurses and doctors scurry from one patient to the next, and monitors beep ominously over the heads of innocent babies, that says something.
There was even a moment where six or seven nurses gathered in our pod (only one baby beside Aurelia is here) and just talked with one another, laughing and chuckling, sharing stories and smiles, and it made Jillian and I feel so relaxed and relieved, and really comfortable among everyone working. We didn't feel at all in the way or unwelcome or awkward, and that is great.
I'll post an additional reflection later today, but it had been some time since we updated and I wanted to share this news. A few other things to share include my 4th period students chipping in together and convincing the mother of one of the students to create and gift us with this amazing flower arrangement brimming with care and love and concern. I cried in class (and over lunch when they couldn't see me) and Jillian cried as well when she got the voice-mail. Madison was hysterical when she saw me today, running toward me in the parking garage and then being so excited she ran in circles around me with a huge smile. I think most special of all (other than those moments when Madison was snuggled on my shoulder napping) was holding Aurelia for a good hour straight. She kept her body temperature up, she cooed, smiled, pursed her lips, made little faces, pooped (yay!), and twitched away in her dreamland. It was heavenly, even though I was exhausted and could barely keep my eyes open!
For now Jillian and I are going to head back to the Ronald McDonald House and get some dinner and then call it a night. As much as I'd love to be here for hours this evening, I need to rest up and prepare for what will be a very stressful few days and evenings. Love to you all!
Friday, October 1, 2010
From Jillian - One Week Old
Jillian's computer was giving her some grief yesterday, so she couldn't get this post up - I'm going to try for her from my end:
Today our little Aurelia is one week old. It is hard to believe that a full week has gone by. She has already had one surgery and is getting prepared for her next one - "The Big One" - as I keep calling it. I spent quite a bit of time with her today, which was really good for me. I like to think that she enjoyed the extra time with Mama today too - I got to hold her for a full hour and while she was a bit fussy at first, she settled down rather quickly and slept blissfully for most of the time. She likes to put her hands near her face, so as long as she was able to touch her face, she was quite content.
I am happy that we got moved into the Philadelphia Ronald McDonald House. We are a LOT closer (only 1 mile from the hospital, by car), which makes visits a lot easier. Today was the first day of our new routine, but I think that it will work well when we get it established. It is very important to Charley and I that Madison gets to see her baby sister frequently, so my mom and Madison come along in the morning for a visit. Maddie is very interested in the "bebe" - in fact she woke up this morning pointing at Aurelia's picture (all the way on the other side of the room) and saying "bebe bebe bebe." It was very dear. However, when we are cribside, Maddie has started to realize that the baby is taking up some of Mama's attention and she isn't too happy about it.
Fortunately, I spoke with one of the Child Life Counselors today, who told me that a child of Maddie's age doesn't know the difference between a special needs baby or any other baby. Her behaviors are perfectly normal for any 18-month old who gets a new sibling. When we are cribside, she wants me (and only me) to hold her. She likes to look and point at the baby (and even played "This Little Piggy" with her toes!), but she doesn't like it if I look at the baby or touch the baby or talk to the baby for too long. She has taken to holding my face, so that I'm looking at her and not at Aurelia. Sometimes this is really hard for me. I constantly talk to Madison while she is doing that and tell her that I love her and I love the baby too. And say encouraging things to her, but it is hard. I can only imagine what she's feeling. And again, this is normal sibling stuff. The fact that her baby sister is hooked up to a bunch of tubes and machines doesn't even faze her, luckily. She doesn't know the difference, so that gives me some comfort.
So, after we visited for a while in the morning, we had lunch and then I brought mom and Maddie back to the Ronald McDonald House. Then I turned around and headed back for some alone time with the baby. As happy as I was to have that quiet alone time with Aurelia, I was sad to leave Madison. I know that my hormones are all out of whack right now, but being away from either of my girls is tough. However, since I can spend good quality time with each of them best separately, I know that I'm doing the right thing.
The afternoon visit went well. I got there just as the cardiac doctors were doing an echo on Aurelia's heart. This was likely the last echo that she'll have before her surgery on Monday. The results of this echo will determine how they are going to proceed with her surgery and which course they will take. Hopefully, I will get a chance to meet with Dr. Gruber tomorrow. At the very least, I should hear from one of the CICU folks and find out what the plan will be.
During that afternoon visit, I also got to pump cribside, which was really nice. Being close to your baby while doing that is a really special thing and I hope to do it regularly during her CICU stay.
A couple of dietician's stopped by during their rounds, so I got to briefly talk to them. There wasn't much for them to report, since she is getting all of her nutrients through her IV. They were happy to see that I was pumping though. I asked about whether or not we would be able to start feeds tomorrow, as Dr. Naim had mentioned earlier in the week. While the dietician wasn't sure about this, I later had the opportunity to ask Dr. Ince this same question. At this point, it seems as though Aurelia is still having too much fluid coming out of her stomach, so it is likely that she will not start on feeds until sometime after her surgery.
I did get the chance to hold her for quite a while, which was so wonderful. During the previous times that I've held her, she's been bundled in her bedding. This time, I held onto a couple of blankets and she she was placed in my arms that way. I wrapped her up tightly so that she'd be warm, but it was the closest holding experience that I've had with her. She felt so tiny to me without the bedding! I know that Madison was that small when she was born too, but for some reason Aurelia just seems all the smaller. I guess it is because she is a bit more fragile than Maddie was, although I'm sure I felt exactly the same way with Madison!
I took a little break and got myself a snack and something to drink. When I got back up the CICU, Aurelia was fussing a lot more than I've ever seen her fuss. Her nurse, Janine, got Dr. Ince to see what was on. Dr. Ince decided to call for an x-ray on her belly, since she hadn't had one in several days. Dr. Ince thought that perhaps the tube in her belly had adjusted slightly and was causing her discomfort. They got the x-ray and since she had settled back down and was back to sleep, I headed back to the Ronald McDonald House to have some dinner and snuggle time with Madison.
I planned to head back to the hospital after Maddie went to bed, so that I could Skype with Charley and he could spend some time with Aurelia. As it turned out, he had Parent/Teacher night at school, so we weren't able to do it. The weather is terrible tonight, so I decided to stay back at the house and check in with Aurelia's nurses via phone.
I spoke with her night nurse Robert a few minutes ago and the x-ray results showed that the tube was exactly where it was supposed to be. Her moments of fussiness were perhaps her personality starting to come out a bit more. She's been pretty fiesty since the beginning, so maybe she wanted to remind us of that! Keep us on our toes!
In any case, I had a nice evening with Madison. We played and read lots of books and then she fell sound asleep on my bed. I will say that this new "house" that we are in is quite different than the last Ronald McDonald House. Our room is more like a hotel room, a really old and small hotel room. Fortunately, we won't be spending a ton of time in here. There are lot of play areas (and some really cool ones at that!), so there will be plenty for Madison to do while she's here. In fact, my mom said that there was a college student who is a volunteer here who spent a lot of time playing with Madison in one of the play areas this afternoon. Perhaps she reminded Maddie of her nanny, Miss Raquel! She tends to get overwhelmed and really shy if there are a lot of kids or older kids around, so it was nice that she was able to enjoy some quiet moments with someone who could show her the ropes, but not intimidate her.
And now it is time for bed for me. I miss Charley terribly and am really happy that tomorrow is Friday. It is hard to go through this without him being right here. We text and call each other frequently, but it just isn't the same. On the phone tonight, he asked me a bunch of questions about Aurelia's care. I wasn't sure of some of the answers and I know that if he had been here, those questions would have been asked and answered while we were at the hospital. That's what is tough about being apart - we compliment each other and each think of things that the other hasn't thought of. We take care of each other and our girls the best that we can considering the circumstances. It is just easier (and a lot better for peace of mind!) when we are together to do those things! Good night and thanks for reading.
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