Two weeks down, two to go until the rescheduled surgery date: November 6th.
It goes both too slowly and too quickly.
All around us people are coming down with colds. We wash and sanitize our hands constantly; we don't let sick people (or people who've been around sick people) come near us.
We are the Family in the Bubble.
--------------------------------------------
I have come across the most astounding thing--courtesy of our good friend Amy Wells, ND who was at a lactation management class all last week.
Apparently, there is no scientific proof, no clinical evidence supporting the mandate that Zoe must not breastfeed during and immediately after her bone marrow transplant.
Amy forwarded me an email thread dating back to 2001 discussing this very fact.
People involved in this thread included two lactation specialists, and an MD in at the University of Texas Medical Branch named Armond Goldman who is an immunologist specializing in the study of breastmilk. (!)
His email in the thread said the following (the highlights are mine):
"Thank you for your inquiry. No controlled studies have been conducted concerning breastfeeding and stem cell transplantation. Because of the lack of information, I have never addressed this issue in any of my writings.
There are theoretical reasons to avoid breastfeeding in such a circumstance if the child has to be immunosuppressed to prepare for the transplantation. The reason stems from cross-fostering experiments conducted by Beer and Billingham some 30 years ago in highly inbred experimental animals. They showed in such animals that ingested T cells from milk colonized the cross fostered infant animals and caused a wasting disease. It is unclear whether maternal T cell engraftment occurs in immunodeficient human infants as a result of breastfeeding. The reason for the uncertainty is that most maternal T cell engraftment occurs during the intrauterine period as a result of T cells colonizing the fetus via the placental.
There are reasons to believe that breastfeeding would be beneficial because of the protection against many types of infectious diseases that affect the gastrointestinal and respiratory tracts. This is particularly important to a child who is immunosuppressed.
It is difficult to make a recommendation when you do not have all of the medical information about the patient. In general, I would encourage such mothers to continue to breastfeed. I would also be obliged to perdiodically make sure that the blood T cells in such children were hers and not her mother's.
I wish I could be of more assistance, but there is little information to provide a more substantial recommendation. If you have any other question, email me or call me.
Dr. Goldman"
I dialed the phone number listed at the end of the email. The woman on the other end of the line explained that yes, Dr. Goldman was still reachable at this number, but they were in the midst of chaos and displacement due to the recent hurricane in Galveston--did I want his cell phone number? Well, sure!
He answered his phone directly. A very pleasant older man with a relaxed Texan drawl. In the next 45 minutes he told me that nothing had changed between 2001 when he wrote the original email and now; there was still no documented proof that breastfeeding was a danger to the transplantation process. But, there was no documented proof that it wasn't either.
Not something that is easy to study through a systematic scientific study, he said.
However, in his years of studying breastmilk, he asserted, nothing has led him to believe that it would be harmful in a situation such as Zoe's. When asked, he said that he would be happy to talk to our oncologist, Dr. Thomas Manley, about this very subject.
Two days after my conversation with Dr. Goldman, I found myself on the phone having an interesting chat with a mother, Beth, who breastfed her baby daughter through a liver transplantation process. Told that her daughter's liver could not process the fat in breastmilk, she did have to supplement with formula (which was less fatty) before and during the transplant process. But, once in recovery, and given larger portions of breastmilk, her baby had what doctors agreed was an astounding recovery.
Beth is convinced that this was due to the healing powers of breastmilk. She told me that the main transplant doctor involved agreed with her assessment.
I have written a long email to Dr. Manley asking him to provide me with the evidence that supports the assertion that breastfeeding Zoe through her bone marrow transplant would be harmful for her.
I don't know if it's irrational hope, or mother's intuition, but I am convinced that nursing her through it will help her fight life threatening infection (a very real and dangerous concern in this process).
It's been a few days, I haven't heard back from him.
Meanwhile, I am continuing to sleuth down other instances where babies have been nursed during transplantation. I have a line on a lactation specialist in Texas who claims that she's observed both stem and bone marrow transplants done in the presence of nursing--without harmful side effects. I am waiting to hear back from her as well.
I'll let you know what turns up.
Thursday, October 23, 2008
Sunday, October 12, 2008
Incidentally...
Zoe did come down with a cold late Friday night--the standard mucous-y and miserable baby experience. She ran a fever today which broke early this evening, and was back to her happy talkative self tonight. Zoe did a good job of talking loudly over Hillary during the Scranton rally.
I dunno, but I think politics seemed to rile her up.
I was thinking about the timing of this cold she contracted. If there is any truth in the old saw about colds being "three days coming, three days here, three days going", and the cold really didn't get here until late Friday, I believe the pre-op appointment on Wednesday (or Monday, for that matter) may have been the culprit.
We spent hours there on those days. We sat on chairs and touched the arm rests. We ate in the lunch room and touched tables and chairs that others had been sitting on directly prior. We did not gel our hands or wash them every single time we went between touching some surface, and touching Zoe.
For all our fastidiousness up until her surgery (as friends who were not allowed to touch her at social settings can attest), we were not fastidious enough.
Won't make that mistake again.
We are doing okay, we're hunkered down--happy that, on the bright side of this experience, we get another month with our baby as we know her.
It seems like we're somewhat suspended in time--other babies her age have long been sitting up on their own, rolling over, and now even crawling. Zoe still does none of those things. She is very much like a precocious 4 month old: huggable, cuddleable and helpless like a small baby, and so alert and interactive on a social level.
She is her own unique little human.
I dunno, but I think politics seemed to rile her up.
I was thinking about the timing of this cold she contracted. If there is any truth in the old saw about colds being "three days coming, three days here, three days going", and the cold really didn't get here until late Friday, I believe the pre-op appointment on Wednesday (or Monday, for that matter) may have been the culprit.
We spent hours there on those days. We sat on chairs and touched the arm rests. We ate in the lunch room and touched tables and chairs that others had been sitting on directly prior. We did not gel our hands or wash them every single time we went between touching some surface, and touching Zoe.
For all our fastidiousness up until her surgery (as friends who were not allowed to touch her at social settings can attest), we were not fastidious enough.
Won't make that mistake again.
We are doing okay, we're hunkered down--happy that, on the bright side of this experience, we get another month with our baby as we know her.
It seems like we're somewhat suspended in time--other babies her age have long been sitting up on their own, rolling over, and now even crawling. Zoe still does none of those things. She is very much like a precocious 4 month old: huggable, cuddleable and helpless like a small baby, and so alert and interactive on a social level.
She is her own unique little human.
Friday, October 10, 2008
Yesterday's Breakdown
The sun was shining in Seattle today; things seem a little less dark after a good night's sleep.
As noted in Amy's post, Zoe's surgery was canceled due to the fact that she was coming down with a cold. The absolutely disheartening thing about this was that it wasn't really identified as a true issue until Zoe was prepped and on the operating table.
They knew going in that her white blood cell count was high from the blood test taken the day before. But, as she showed no signs of symptoms, and numbers indicating infection were low, they decided to proceed.
According to the anesthesiologist, when we met with her after they canceled everything, it was the breathing tube difficulties that ultimately decided the issue. After inserting the tube, she noticed that it was difficult to manually "breathe" for Zoe. Her lungs felt "stiff", she said. This stiffness is usually due to one of two things: the tube being too small, or the patient being sick and having inflammation. She tried putting a larger diameter tube in--and still Zoe's chest felt stiff.
The concern was that the swelling present in the passageway would not allow them to remove the tube in a timely manner after the surgery. Apparently, if the tube is not removed within 24 hours of being placed in, the likelihood of infection, including pneumonia, is very high.
We also talked with the plastic surgeon and neurosurgeon after they emerged from the canceled procedure (actually, before we met with the anesthesiologist). They noted that another point of concern was Zoe's level of bleeding.
Zoe bled profusely at her IV site and at the base of her spine where the neurosurgeon had performed a lumbar puncture for the purpose creating a pressure release for her cerebral spinal fluid during the operation. They said that the amount of bleeding was concerning and not normal. They had blood samples sent to hematology for analysis.
Oh God. What else is wrong with her? Are there more ghosts to reveal?
Both of our hearts were gasping on the floor beneath us.
In my own head I was screaming--what about her bone marrow transplant?! We need her healed from the surgery so that she can proceed with life saving treatment--and surgery is postponed for another month...!!!?
But, as of such, they all concurred that it was not in her best interest to go forward yesterday--a call to Cunningham and to Dr. Manley at Seattle Cancer Care Alliance had them agreeing as well. According to the anesthesiologist, all the doctors involved in the OR got out their calendars and settled on a good day to reschedule for.
Talking to Cunningham later, he said that a November 6th reschedule is very expeditious. I'll have to trust him on that.
We were told that they needed time to get Zoe released from surgery prep; we would see her in a room in about an hour. We would need to spend the night so they could observe her. The tube in her throat had "stirred things up" and now, they said, she sounded a bit rough in her breathing.
Cunningham visited us for a bit about 30minutes later. He had gotten out of a meeting and headed straight for us. He was able to assuage our fears saying that it was unlikely another ghost in Zoe's closet was waiting to be revealed. He also said that a month delay was not a tremendous thing to be worried about as far as the BMT goes.
Zoe's issue has been progressing all her life, he said, and another month was not likely to be the make or break point. He said, too, that her hematocrit levels (red blood cell count) were actually up a bit since the last time they looked, so she was holding steady as far as blood production and storage was going.
If Zoe's having surgery that day was seen as a life or death issue, they would have progressed with it. Cunningham said they have ways of dealing with infection and colds, if need really be, and, if it came down to it, they would definitely proceed in the future if overall protocol demanded it (as far as needing to get the BMT process started).
An hour later had us waiting in a hospital room for Zoe. Zoe came in on a big bed with a crazy haircut--a shaved strip from ear to ear. We could see remnants of the jagged line they had drawn where they had planned to cut the scalp.
The next few hours were simply spent feeding and holding her. She was groggy, but doing great.
During that time we were visited by the hematologist, who came to give us the results of the blood panel. She took a very long time getting to the point (so hard not to scream: Just tell me what's wrong!!!), but the bottom line was, she really couldn't explain what was the reason for Zoe's profuse bleeding. None of the extensive tests revealed anything that would say. She asked Jeff and I if we had a family history of blood or bleeding issues. We told her, not that we knew of.
Please, if you are family and you know differently, let us know. It could be a missing link.
She left us with the remark that she would be doing more looking into Zoe's case. Hopefully, Cunningham's opinion that there are no more ghosts to be found will hold true...
As we were down the hall from the SCCA portion of the hospital where the BMT's are performed, Jeff and I left Zoe sleeping under the watchful eyes of Cinny and Jack and did a little reconnaissance. We only got to peek at the entrance of the unit as signs plastered everywhere reminded us not to spread germs (we had been holding a possibly sick Zoe), but a helpful childcare specialist from the unit came back to our room with us to tell us about some of what to expect when we return for the BMT.
More on that in a later post.
Zoe's continued great progress got us home last night. Thankfully we didn't have to spend the night; the "double bed" for the parents looked suspiciously like a single.
We all got some great sleep last night--thanks to the one benefit I can see regarding Zoe's unnecessary anesthesia.
She seemed pretty fine today. It's hard to know if her raspy voice is due to a cold, or to irritation from the different breathing tubes shoved down her throat. Currently she's asleep and breathing fine. I wonder if she is really coming down with something.
What does it mean if she doesn't? Will it have been canceled for nothing?
-------------------------------------
On another bent--great, great news came today from SCCA.
Preliminarily, there have been found two, possibly three "ten out of ten" bone marrow matches for Zoe.
Ten out of ten is the best possible match for an unrelated donor.
Much more needs to be done in the way of verifying and locking in a donor--but this early news is phenomenal.
Many have asked if she has the type of osteopetrosis that can be treated with a BMT--I guess I wasn't as clear about that as I should have been in earlier posts.
Ultimately, it's not absolutely certain. This was to be expected, according to Dr. Manley at SCCA. Osteopetrosis is so rare that they don't have all of the gene mutations identified. One of the two mutations present in Zoe is not recognized.
According to Dr. Cunningham, whose area of expertise includes molecular biology, his educated guess is that she has a type that responds to BMT's. Even so, and even with a "10 out of 10" match in bone marrow, her prognosis is still 50/50 as far as being healed.
The ultimate glass half empty/half full scenario in terms of how we sit with this.
This is so big, and I feel so small and stiff and unequal to the challenge.
All I can do is surrender, over and over again.
As noted in Amy's post, Zoe's surgery was canceled due to the fact that she was coming down with a cold. The absolutely disheartening thing about this was that it wasn't really identified as a true issue until Zoe was prepped and on the operating table.
They knew going in that her white blood cell count was high from the blood test taken the day before. But, as she showed no signs of symptoms, and numbers indicating infection were low, they decided to proceed.
According to the anesthesiologist, when we met with her after they canceled everything, it was the breathing tube difficulties that ultimately decided the issue. After inserting the tube, she noticed that it was difficult to manually "breathe" for Zoe. Her lungs felt "stiff", she said. This stiffness is usually due to one of two things: the tube being too small, or the patient being sick and having inflammation. She tried putting a larger diameter tube in--and still Zoe's chest felt stiff.
The concern was that the swelling present in the passageway would not allow them to remove the tube in a timely manner after the surgery. Apparently, if the tube is not removed within 24 hours of being placed in, the likelihood of infection, including pneumonia, is very high.
We also talked with the plastic surgeon and neurosurgeon after they emerged from the canceled procedure (actually, before we met with the anesthesiologist). They noted that another point of concern was Zoe's level of bleeding.
Zoe bled profusely at her IV site and at the base of her spine where the neurosurgeon had performed a lumbar puncture for the purpose creating a pressure release for her cerebral spinal fluid during the operation. They said that the amount of bleeding was concerning and not normal. They had blood samples sent to hematology for analysis.
Oh God. What else is wrong with her? Are there more ghosts to reveal?
Both of our hearts were gasping on the floor beneath us.
In my own head I was screaming--what about her bone marrow transplant?! We need her healed from the surgery so that she can proceed with life saving treatment--and surgery is postponed for another month...!!!?
But, as of such, they all concurred that it was not in her best interest to go forward yesterday--a call to Cunningham and to Dr. Manley at Seattle Cancer Care Alliance had them agreeing as well. According to the anesthesiologist, all the doctors involved in the OR got out their calendars and settled on a good day to reschedule for.
Talking to Cunningham later, he said that a November 6th reschedule is very expeditious. I'll have to trust him on that.
We were told that they needed time to get Zoe released from surgery prep; we would see her in a room in about an hour. We would need to spend the night so they could observe her. The tube in her throat had "stirred things up" and now, they said, she sounded a bit rough in her breathing.
Cunningham visited us for a bit about 30minutes later. He had gotten out of a meeting and headed straight for us. He was able to assuage our fears saying that it was unlikely another ghost in Zoe's closet was waiting to be revealed. He also said that a month delay was not a tremendous thing to be worried about as far as the BMT goes.
Zoe's issue has been progressing all her life, he said, and another month was not likely to be the make or break point. He said, too, that her hematocrit levels (red blood cell count) were actually up a bit since the last time they looked, so she was holding steady as far as blood production and storage was going.
If Zoe's having surgery that day was seen as a life or death issue, they would have progressed with it. Cunningham said they have ways of dealing with infection and colds, if need really be, and, if it came down to it, they would definitely proceed in the future if overall protocol demanded it (as far as needing to get the BMT process started).
An hour later had us waiting in a hospital room for Zoe. Zoe came in on a big bed with a crazy haircut--a shaved strip from ear to ear. We could see remnants of the jagged line they had drawn where they had planned to cut the scalp.
The next few hours were simply spent feeding and holding her. She was groggy, but doing great.During that time we were visited by the hematologist, who came to give us the results of the blood panel. She took a very long time getting to the point (so hard not to scream: Just tell me what's wrong!!!), but the bottom line was, she really couldn't explain what was the reason for Zoe's profuse bleeding. None of the extensive tests revealed anything that would say. She asked Jeff and I if we had a family history of blood or bleeding issues. We told her, not that we knew of.
Please, if you are family and you know differently, let us know. It could be a missing link.
She left us with the remark that she would be doing more looking into Zoe's case. Hopefully, Cunningham's opinion that there are no more ghosts to be found will hold true...
As we were down the hall from the SCCA portion of the hospital where the BMT's are performed, Jeff and I left Zoe sleeping under the watchful eyes of Cinny and Jack and did a little reconnaissance. We only got to peek at the entrance of the unit as signs plastered everywhere reminded us not to spread germs (we had been holding a possibly sick Zoe), but a helpful childcare specialist from the unit came back to our room with us to tell us about some of what to expect when we return for the BMT.
More on that in a later post.
Zoe's continued great progress got us home last night. Thankfully we didn't have to spend the night; the "double bed" for the parents looked suspiciously like a single.
We all got some great sleep last night--thanks to the one benefit I can see regarding Zoe's unnecessary anesthesia.
She seemed pretty fine today. It's hard to know if her raspy voice is due to a cold, or to irritation from the different breathing tubes shoved down her throat. Currently she's asleep and breathing fine. I wonder if she is really coming down with something.
What does it mean if she doesn't? Will it have been canceled for nothing?
-------------------------------------
On another bent--great, great news came today from SCCA.
Preliminarily, there have been found two, possibly three "ten out of ten" bone marrow matches for Zoe.
Ten out of ten is the best possible match for an unrelated donor.
Much more needs to be done in the way of verifying and locking in a donor--but this early news is phenomenal.
Many have asked if she has the type of osteopetrosis that can be treated with a BMT--I guess I wasn't as clear about that as I should have been in earlier posts.
Ultimately, it's not absolutely certain. This was to be expected, according to Dr. Manley at SCCA. Osteopetrosis is so rare that they don't have all of the gene mutations identified. One of the two mutations present in Zoe is not recognized.
According to Dr. Cunningham, whose area of expertise includes molecular biology, his educated guess is that she has a type that responds to BMT's. Even so, and even with a "10 out of 10" match in bone marrow, her prognosis is still 50/50 as far as being healed.
The ultimate glass half empty/half full scenario in terms of how we sit with this.
This is so big, and I feel so small and stiff and unequal to the challenge.
All I can do is surrender, over and over again.
Thursday, October 9, 2008
Ugh
Too wrought to write.
We are home; Zoe's asleep.
No sign of a cold yet.
However, she does have a wicked case of what sounds like smoker's voice after having a tube shoved down her throat.
Off to bed.
Will fill in the blanks tomorrow.
We are home; Zoe's asleep.
No sign of a cold yet.
However, she does have a wicked case of what sounds like smoker's voice after having a tube shoved down her throat.
Off to bed.
Will fill in the blanks tomorrow.
Zoe's Surgery has been Canceled
We all showed up at 6:45am to get Zoe into surgery.
The blood work from yesterday showed that she has an elevated WBC (white blood cell) count. There was a concern that she may be just starting a cold, but she had no symptoms to date.
The general consensus was it would just make recovery all the more uncomfortable, as she would have a cold showing up just about then.
But when the anesthesiologist got Zoe under sedation the breathing tube would not insert into her trachea due to constant spasming and marked inflammation. They tried dialating her trachea, but it did not work. There was also concern of creating further complications such as pneumonia, so the surgery has been rescheduled for Nov 6, 2008.
They are giving 3 weeks minimum for Zoe's lungs to recover from her upcoming cold and they also had to bump other kids off the queue to get her in that soon.
Jeff and Kellie will update the blog as soon as they can. They will most likely be leaving the hospital tomorrow. Zoe is staying in the hospital tonight for observation.
Note to the PEPS group: please no food delivery to the hospital.
Thanks,
Amy S Wells, ND, LMP
The blood work from yesterday showed that she has an elevated WBC (white blood cell) count. There was a concern that she may be just starting a cold, but she had no symptoms to date.
The general consensus was it would just make recovery all the more uncomfortable, as she would have a cold showing up just about then.
But when the anesthesiologist got Zoe under sedation the breathing tube would not insert into her trachea due to constant spasming and marked inflammation. They tried dialating her trachea, but it did not work. There was also concern of creating further complications such as pneumonia, so the surgery has been rescheduled for Nov 6, 2008.
They are giving 3 weeks minimum for Zoe's lungs to recover from her upcoming cold and they also had to bump other kids off the queue to get her in that soon.
Jeff and Kellie will update the blog as soon as they can. They will most likely be leaving the hospital tomorrow. Zoe is staying in the hospital tonight for observation.
Note to the PEPS group: please no food delivery to the hospital.
Thanks,
Amy S Wells, ND, LMP
Here we go
We leave in 15 minutes for the hospital.
Zoe is sleeping soundly (after spending much of the night awake).
Okay, Little Angel--a big day ahead...
Thanks so much for all your calls and emails of support.
News to come as the day unfolds.
Zoe is sleeping soundly (after spending much of the night awake).
Okay, Little Angel--a big day ahead...
Thanks so much for all your calls and emails of support.
News to come as the day unfolds.
Wednesday, October 8, 2008
Today's appointments
Today, another round of pre-operative meetings--this time with Neurosurgery and Anesthesia.
The neurosurgery ARNP met with us at 10am--and walked us through some of what is to go on tomorrow. What we know:
Check in at 6:45am
Surgery is considered "Day 0". The swelling will steadily increase until about Day 4, when it begins to recede. The drain will be taken out generally on Day 2. Day 1 is when post op patients for this surgery leave ICU. For Zoe this should be Friday afternoon, if all goes well.
Only one of us (me) will be able to stay with Zoe overnight in the ICU; both of us will be able to stay with her once she is released to regular hospital care.
They expect her to be in the hospital for 5-6 days. They want to see that her swelling is receded enough for her to be able to open her eyes as well as tolerating food and liquids.
We got the tour--the joint is pretty well stocked. Yay Seattle Children's.
Yay us.
On the agenda for tomorrow:
For Zoe--
For Jeff and Kellie
Off to finish packing--write to you tomorrow...
The neurosurgery ARNP met with us at 10am--and walked us through some of what is to go on tomorrow. What we know:
Check in at 6:45am
- Pre-exam will happen then where they will make certain that she didn't develop a cold overnight
- They will sedate her, put the IV in her for meds, give her a bladder catheter, cover her with warm blankets and shave the strip of her head ear to ear where the incision will be (apparently they will give us a little baggy with that hair in it)
- Her procedure will start at 7:30am
- Surgery duration has been scheduled for 8.5 hours
- A nurse will page us every one to two hours with updates
- Once the surgery is completed the surgeons with come meet with us, meanwhile Zoe will be taken for a CAT scan and then settled in the ICU where we will then be able to see her--probably around 5pm. She will have a drain coming out of her head. (I've seen pictures of other babies post op--it's not pretty)
Surgery is considered "Day 0". The swelling will steadily increase until about Day 4, when it begins to recede. The drain will be taken out generally on Day 2. Day 1 is when post op patients for this surgery leave ICU. For Zoe this should be Friday afternoon, if all goes well.
Only one of us (me) will be able to stay with Zoe overnight in the ICU; both of us will be able to stay with her once she is released to regular hospital care.
They expect her to be in the hospital for 5-6 days. They want to see that her swelling is receded enough for her to be able to open her eyes as well as tolerating food and liquids.
We got the tour--the joint is pretty well stocked. Yay Seattle Children's.
Yay us.
On the agenda for tomorrow:
For Zoe--
For Jeff and Kellie
- sitting
- waiting
- hoping
- praying
- Jeff: crossword puzzle
- Kellie: blogging throughout the day
Off to finish packing--write to you tomorrow...
Tuesday, October 7, 2008
Monday's appointments
I'm going to be brief with this entry--I have really got to get myself in bed by ten these days. Later than that is just not working for me with this night waking baby of ours.
Monday was just mostly a whole lot of waiting around. We were schedule for 1.5 hours worth of meetings starting at 2pm, but we basically waited for 2 hours before our scheduled doctors could meet with us.
Cunningham was willing to meet with us, unscheduled, to answer a few of our burning questions regarding bone and marrow samples being sent to the right places. It was just a crazy day for him and everyone else at the clinic that day, but he was so good at being focused and present and not relaying the sense of needing to be so many other places while he was with us.
The social worker met with us to talk about how we were doing with the idea of the surgery, to give us basic info like where we would be waiting on Thursday, where the designated room for "pumping" is (they think of everything), where the computers are (I will be able to do blog updates as Thursday unfolds), etc. Tomorrow she will actually give us the guided tour.
We met with the plastic surgeon, who gave us the run-down for the surgery procedure (a lot of bone cutting and reshaping)--again, they have allotted 8 hours for it.
A couple of nurses met with us to get some details about Zoe. One of them showed us photos of other babies who had had surgery at Children's for craniosynostosis. The before and after pics are pretty astounding. The post-op photos are a little rough.
I will be taking pics of Zoe before and after --and during recovery. I know not everyone is up for seeing a post-op baby--so I'm going to figure out how to load the photos up on another website so that those who wish to see them can do so.
It was a bit of a grind being there for so long. Our friend Amy came to take notes again and remember the questions we forgot to ask.
Here's how we looked:
Feels like we're at the start of a verrrrrry loooonnnnnng marathon.
And, we haven't even trained.
Tomorrow, more meetings, more details about Thursday, and another blood draw. Poor girl, I'm surprised she has any blood left!
Monday was just mostly a whole lot of waiting around. We were schedule for 1.5 hours worth of meetings starting at 2pm, but we basically waited for 2 hours before our scheduled doctors could meet with us.
Cunningham was willing to meet with us, unscheduled, to answer a few of our burning questions regarding bone and marrow samples being sent to the right places. It was just a crazy day for him and everyone else at the clinic that day, but he was so good at being focused and present and not relaying the sense of needing to be so many other places while he was with us.
The social worker met with us to talk about how we were doing with the idea of the surgery, to give us basic info like where we would be waiting on Thursday, where the designated room for "pumping" is (they think of everything), where the computers are (I will be able to do blog updates as Thursday unfolds), etc. Tomorrow she will actually give us the guided tour.
We met with the plastic surgeon, who gave us the run-down for the surgery procedure (a lot of bone cutting and reshaping)--again, they have allotted 8 hours for it.
A couple of nurses met with us to get some details about Zoe. One of them showed us photos of other babies who had had surgery at Children's for craniosynostosis. The before and after pics are pretty astounding. The post-op photos are a little rough.
I will be taking pics of Zoe before and after --and during recovery. I know not everyone is up for seeing a post-op baby--so I'm going to figure out how to load the photos up on another website so that those who wish to see them can do so.
It was a bit of a grind being there for so long. Our friend Amy came to take notes again and remember the questions we forgot to ask.
Here's how we looked:
Feels like we're at the start of a verrrrrry loooonnnnnng marathon.
And, we haven't even trained.
Tomorrow, more meetings, more details about Thursday, and another blood draw. Poor girl, I'm surprised she has any blood left!
Sunday, October 5, 2008
On the verge
A week of no posting; a blessed week of little news.
Of note, we were called last Wednesday morning by Seattle Cancer Care Alliance to bring Zoe in for more bloodletting, er, samples. Apparently they needed 15 more cc's worth to complete the typing process. 15cc's is a large amount for a baby of Zoe's size, but apparently not a prohibitive amount.
I am getting to be a very good advocate for my girl; I know to request the rooms that have the special pediatric chair for the blood taking. My genetically pushy nature is starting to come in handy.
Tomorrow we have some pre-operative appointments with the plastic surgeon and the social worker. Wednesday we meet with the neurology nurse and anesthesia.
Holy Moly, it's almost here.
-------------------------------------
I am starting to be convinced that Zoe must have an understanding that "Mama" is associated with me.
Not that she calls me that, or even deigns to say it during the day--absolutely not when I say it to her--
Mama, I tell her, when she does her dadadadadadadad run-on vocalizations.
She simply pauses and does a big, slow smile.
I'm your Maaaa Maaaa.....
Again, a mischievous big smile. But no such luck in getting her to say it back to me on demand.
But!
There have been four different nights now that, in our sleep deprived haze, when we have tried to get her to "cry it out" through one of the many wakings in the wee-sma's, she finally resorted to a Maaaaaaaa Maaaaaa! of the most pathetic proportions.
Of course, I went to her immediately then.
I must give her positive reinforcement for genius.
-------------------------------------------------
Okay, a topic that's been on my mind---
Let's just say that "How are you?" (and especially "How ARE you???") is off the table. No longer an allowed question.
Suffice it to say that the answer always lies within the range of "shattered, pissy, fucked up, terrified, hanging in there, intentially numbed out, morbidly depressed, sleep deprived, just this side of stark raving mad, etc."
"How are you?" is such a habit of all greetings (myself included), but I never know how to answer it these days. Because, frankly, I don't really want to go into it most times. But then, I don't really want to lie either. At least, not on the breezy greeting side of things (a meal, some wine and some good conversation already, and maybe it's a topic for later).
Accordingly, Jeff and I have decided it's no longer a greeting question that is allowed.
So! We have come up with some alternatives:
My friend Mary just offered these two alternatives:
I'm sure there are some more brilliant ones out there--feel free to chime in.
I'll have to think of a prize for the best one ;-)
----------------------------
One more thing for tonight---look to the links on the right side of the top of the page: you can now watch Zoe on YouTube.
Love to all.
Of note, we were called last Wednesday morning by Seattle Cancer Care Alliance to bring Zoe in for more bloodletting, er, samples. Apparently they needed 15 more cc's worth to complete the typing process. 15cc's is a large amount for a baby of Zoe's size, but apparently not a prohibitive amount.
I am getting to be a very good advocate for my girl; I know to request the rooms that have the special pediatric chair for the blood taking. My genetically pushy nature is starting to come in handy.
Tomorrow we have some pre-operative appointments with the plastic surgeon and the social worker. Wednesday we meet with the neurology nurse and anesthesia.
Holy Moly, it's almost here.
-------------------------------------
I am starting to be convinced that Zoe must have an understanding that "Mama" is associated with me.
Not that she calls me that, or even deigns to say it during the day--absolutely not when I say it to her--
Mama, I tell her, when she does her dadadadadadadad run-on vocalizations.
She simply pauses and does a big, slow smile.
I'm your Maaaa Maaaa.....
Again, a mischievous big smile. But no such luck in getting her to say it back to me on demand.
But!
There have been four different nights now that, in our sleep deprived haze, when we have tried to get her to "cry it out" through one of the many wakings in the wee-sma's, she finally resorted to a Maaaaaaaa Maaaaaa! of the most pathetic proportions.
Of course, I went to her immediately then.
I must give her positive reinforcement for genius.
-------------------------------------------------
Okay, a topic that's been on my mind---
Let's just say that "How are you?" (and especially "How ARE you???") is off the table. No longer an allowed question.
Suffice it to say that the answer always lies within the range of "shattered, pissy, fucked up, terrified, hanging in there, intentially numbed out, morbidly depressed, sleep deprived, just this side of stark raving mad, etc."
"How are you?" is such a habit of all greetings (myself included), but I never know how to answer it these days. Because, frankly, I don't really want to go into it most times. But then, I don't really want to lie either. At least, not on the breezy greeting side of things (a meal, some wine and some good conversation already, and maybe it's a topic for later).
Accordingly, Jeff and I have decided it's no longer a greeting question that is allowed.
So! We have come up with some alternatives:
- Hi! Great to see you.
- Great to hear your voice
- What are you doing today?
- What's going on?
- Wow, have you lost weight?
- I'm just calling to say I love you.
- I'm just calling to check in.
- I just stopped by to give you a hug.
- I just wanted to connect.
- Hi, can I tell you about the funny thing that happened to me today?
- Can I tell you about this great, uplifting story?
- Are you up for some company?
- Are you up for some mindless chatter?
- I'm calling to see if you want a coffee and a danish.
My friend Mary just offered these two alternatives:
- Can I offer you some Prozac?
- Would you like some of the cabernet I just opened?
I'm sure there are some more brilliant ones out there--feel free to chime in.
I'll have to think of a prize for the best one ;-)
----------------------------
One more thing for tonight---look to the links on the right side of the top of the page: you can now watch Zoe on YouTube.
Love to all.
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