Well, this is exciting.
Over the last week or so my blood pressure has been revving up regardless of a med increase and decreased activity. So...yesterday, it was decided that I am on bedrest. Thankfully, my labs came back within normal margin at this point. If I behave and my body falls into line then I can avoid: 1. being put in the hospital 2. immediate delivery of Kavannah.
There are several exciting things about being on bedrest (especially with a two year old). The crashing you hear in another room just has to remain what it is. Other examples, laundry will get folded if it walks to your bed...and put away if it walks away. There are many other things!
Prayer for:
Order in our life change.
My bloop pressure to be controlled.
Kavannah's continued development.
with love to all,
the Streckers
Tuesday, January 19, 2010
Thursday, January 7, 2010
29 weeks & recap of our consult...
Well, how often have you been encouraged to gain a little weight?
Ok. If you are reading this, you know me, and you know that my answer is NEVER... That was the news that made me smile on Tuesday. The perinatologist practice that I see has about six sites. On Tuesday we were back at St. Joseph’s hospital in Milwaukee. We had not been seen there since our very first appointment in mid September. The nurse put me on the scale & did one of those medical gasps and said, “You have gained 5.5 pounds since your last appointment!” Then I gasped & looked at the chart she is holding and said, “I have not been seen here since September.” Her reply, “Oh”.
I am thankful that my weight did not do one of ‘those’ increases. That would mean that my body would be starting its preclamptic rebellion...but, it is NOT!! I am not spilling any protein, my blood pressure is being managed, and I even have been encouraged to gain a little weight and take it easy (still threatening bed rest). In a different season, this would be a welcomed vacation.
The consult on the other hand was like a brisk gust of wind on a forty below day. Jim and I were joined by our perinatologist, the neonatologist, the NICU nurse coordinator, & the chaplain. The nice thing about the meeting was being able to talk through scenarios. (Many of you may remember that Mara was born prematurely and we did not have the luxury of handling any crisis before it arrived.) We were all assembled except the Neonatologist. He came in and met us, sat down and said, “Why am I here?”
On a side note, my sister in law is a genetic counselor and has had many a consult where there are perinatologist and neonatologist both present. She warned me or reminded me about their different ‘approaches’. Once I remembered that...it was easier to screw my head on again.
The short version is that the neonatologist said the Trisomy 13 babies that have survivability are the ones that are not picked up inutero for any reason and arrive after delivery with a few ‘odd’ things that make them do chromosomal testing then. In his terms, “That is not the case you are in.” He talked about the ethicacy of ‘futility’....but that they were willing to ‘bend’ it a little. The best scenerio that he laid out was that we have her for a few days and we could bring her home if that is what we wanted. The cases that he talked about in his experience were in the three to 10 day range of survivorability. Although, he mentioned that the last case was two years ago, I think. If any of you are longing for anything rare & exclusive...I would recommend making it something besides this.
All in all, I think that we came to an understanding that we need to be able to have an open dialogue as we progress. We left it in the “we’ll see how she presents” and he looked at us as if we were fools but agreed and shrugged his shoulders. He is a member of the Board of Ethics so by having this meeting it should allow us to receive (limited) treatment. We should not have to present any of our plans to the board or any sort of panel. (He did say that there most likely is not a cardiologist in Milw that would touch her.)
Don’t get me wrong. He is a fabulous, well experienced doctor that had to tell us facts in a very black and white manner. I suspect this is his approach in life as well. I can only imagine that his breakfast conversation with his wife might be the same when trying to tell her that their favorite car is in the shop and it looks futile to repair it one more time.
From that meeting we were fortunate to receive a NICU tour and a Labor and Delivery tour. Each nurse manager that we met with was professional and precise. There is no doubt that this is a great facility.
We still need to decide about a birth plan. Will you pray for us? Currently, Kavannah is breech and has been for about a month. With Mara I had an ‘explosive’ vag delivery. With Asher I had a c-section with a hematoma complication that took over a year to reabsorb. I asked about a third option but it seems that medically there has been no recent advancements. Darn.
Kavannah looks good. They still have not figured out how to fully describe her heart. Truly, it does not look hypoplastic but it is not normal. Her aeoritic arch looks beautiful but they suspect that it might be something with a pulmonary ductus. Again, it will be one of those things that we learn about her when she presents. Otherwise, the guestimate is that she weighs 2.6 pounds and is lovely.
Thanks for joining us on this painful journey.
Love,
Maegan for Jim, Mara, Asher and Kavannah
Ok. If you are reading this, you know me, and you know that my answer is NEVER... That was the news that made me smile on Tuesday. The perinatologist practice that I see has about six sites. On Tuesday we were back at St. Joseph’s hospital in Milwaukee. We had not been seen there since our very first appointment in mid September. The nurse put me on the scale & did one of those medical gasps and said, “You have gained 5.5 pounds since your last appointment!” Then I gasped & looked at the chart she is holding and said, “I have not been seen here since September.” Her reply, “Oh”.
I am thankful that my weight did not do one of ‘those’ increases. That would mean that my body would be starting its preclamptic rebellion...but, it is NOT!! I am not spilling any protein, my blood pressure is being managed, and I even have been encouraged to gain a little weight and take it easy (still threatening bed rest). In a different season, this would be a welcomed vacation.
The consult on the other hand was like a brisk gust of wind on a forty below day. Jim and I were joined by our perinatologist, the neonatologist, the NICU nurse coordinator, & the chaplain. The nice thing about the meeting was being able to talk through scenarios. (Many of you may remember that Mara was born prematurely and we did not have the luxury of handling any crisis before it arrived.) We were all assembled except the Neonatologist. He came in and met us, sat down and said, “Why am I here?”
On a side note, my sister in law is a genetic counselor and has had many a consult where there are perinatologist and neonatologist both present. She warned me or reminded me about their different ‘approaches’. Once I remembered that...it was easier to screw my head on again.
The short version is that the neonatologist said the Trisomy 13 babies that have survivability are the ones that are not picked up inutero for any reason and arrive after delivery with a few ‘odd’ things that make them do chromosomal testing then. In his terms, “That is not the case you are in.” He talked about the ethicacy of ‘futility’....but that they were willing to ‘bend’ it a little. The best scenerio that he laid out was that we have her for a few days and we could bring her home if that is what we wanted. The cases that he talked about in his experience were in the three to 10 day range of survivorability. Although, he mentioned that the last case was two years ago, I think. If any of you are longing for anything rare & exclusive...I would recommend making it something besides this.
All in all, I think that we came to an understanding that we need to be able to have an open dialogue as we progress. We left it in the “we’ll see how she presents” and he looked at us as if we were fools but agreed and shrugged his shoulders. He is a member of the Board of Ethics so by having this meeting it should allow us to receive (limited) treatment. We should not have to present any of our plans to the board or any sort of panel. (He did say that there most likely is not a cardiologist in Milw that would touch her.)
Don’t get me wrong. He is a fabulous, well experienced doctor that had to tell us facts in a very black and white manner. I suspect this is his approach in life as well. I can only imagine that his breakfast conversation with his wife might be the same when trying to tell her that their favorite car is in the shop and it looks futile to repair it one more time.
From that meeting we were fortunate to receive a NICU tour and a Labor and Delivery tour. Each nurse manager that we met with was professional and precise. There is no doubt that this is a great facility.
We still need to decide about a birth plan. Will you pray for us? Currently, Kavannah is breech and has been for about a month. With Mara I had an ‘explosive’ vag delivery. With Asher I had a c-section with a hematoma complication that took over a year to reabsorb. I asked about a third option but it seems that medically there has been no recent advancements. Darn.
Kavannah looks good. They still have not figured out how to fully describe her heart. Truly, it does not look hypoplastic but it is not normal. Her aeoritic arch looks beautiful but they suspect that it might be something with a pulmonary ductus. Again, it will be one of those things that we learn about her when she presents. Otherwise, the guestimate is that she weighs 2.6 pounds and is lovely.
Thanks for joining us on this painful journey.
Love,
Maegan for Jim, Mara, Asher and Kavannah
Saturday, January 2, 2010
28 weeks...
Ok. I admit it. I am a turtle.
I am one of those irritating people that desires to pull into my shell until I have it all figured out. It gives me the security and comfort of being able to process privately. Then I can poke my head out when I am all composed and look like an adult. I guess that might explain the 6-7 week absence on my postings. I confess, there are neither feelings of having this all sorted out or having the emotional strength to communicate what it is like to plan and anticipate a birth and a potential death at the same time.
I will give the cliff notes of our adventures and then have to go in later and give detailed brush strokes.
We had a lovely Christmas. We have enjoyed being together. Simple. In my contemplation of the Christmas season, I have enjoyed a new kindred with Mary, the mother of Jesus. She was a Jewish girl and knew exactly what was prophecied about the coming Messiah. (If you want to be astounded read the book of Isaiah.) I am sure that she was both thrilled and terrified in many moments along the way. Today she is one of my heros.
Health wise. Kavannah is growing. About a month ago she looked great. Her size was small (actually legs, arms, and head were normal but abdomen was small). We could not see any evidence of hypoplastic heart (which was the best news!). However, in the last appointment there was evidence that something was not normal. We had extensive time with the ultra sound tech and dr. Both said something did not look normal...not hypoplastic and no back flow but something that did not look completely normal. In a normal developing heart there is still an opening where there will be a valve after birth. But, it almost seems that there is something there now. Also, Kavannah’s kidneys did look enlarged but their function seems to be good. Although, sometimes this is a correlation with a two vessel cord verses the normal three vessel cord. However, it is another something to watch. Her ompheliocite is consistent with her initial diagnosis.
My health is a bit edgy. My blood pressure is continuing to climb. We continue to increase my medication. Pray that my body would respond. A piece of good news is that although I did not pass my one hour glucose test; I did indeed pass my official three hour glucose test. As my dr. said, “Finally, a normal test!” I am encouraged to listen to my body and take it easy when I need to. (Threat of bed rest...)
On this Tuesday afternoon we will have another appointment with our fabulous Dr. Cresta Jones with a quick scan. Then we have a big pow wow with the chief Neonatologist of NICU/Specialty Care nursery, specialty care nursery coordinator, possibly chaplain, and our perinatologist. We need to discuss our current situation as well as possible birth plans & after care. We are seeking wisdom and discernment. There is quite a bit that we don’t know yet. Like...how can you measure the spirit? I have remembered how Mara had coded a couple of times after birth but she pressed on and fought through. She had two of three shots of surfactant to get her little lungs going. Press on, is the reminder!
So, in a new decade...some things are the same. Mara Mercy was inutero 10 years ago. Kavannah is inutero now. Every day miracle reminders are presented in a lovely, stringy almost ten year old who has challenges with keeping her room clean instead of struggling for every breath. There also is this little two year old tornado called Asher that was never supposed to be here in the first place. We rest between fact and faith. (By the way, I made Jim swear that we would not be expecting in the onset of the next decade ;)
Indeed, we take a day at a time. The Lord will reveal his will for us. We are in the refining fire but soon the reflection might just come out with the purity resembling the Lamb, Prince of Peace, the Lion of Judah.
We treasure each of you. Thank you for tracking us down with beautiful Christmas cards, phone calls and messages, and the visits of friends and family. I am sorry that we have missed connecting with some of you at a recent wedding in MN that we had to pass on because of my health. I’ll keep you posted after our Tuesday events.
Love to you,
Maegan for Jim, Mara, Asher and Kavannah
I am one of those irritating people that desires to pull into my shell until I have it all figured out. It gives me the security and comfort of being able to process privately. Then I can poke my head out when I am all composed and look like an adult. I guess that might explain the 6-7 week absence on my postings. I confess, there are neither feelings of having this all sorted out or having the emotional strength to communicate what it is like to plan and anticipate a birth and a potential death at the same time.
I will give the cliff notes of our adventures and then have to go in later and give detailed brush strokes.
We had a lovely Christmas. We have enjoyed being together. Simple. In my contemplation of the Christmas season, I have enjoyed a new kindred with Mary, the mother of Jesus. She was a Jewish girl and knew exactly what was prophecied about the coming Messiah. (If you want to be astounded read the book of Isaiah.) I am sure that she was both thrilled and terrified in many moments along the way. Today she is one of my heros.
Health wise. Kavannah is growing. About a month ago she looked great. Her size was small (actually legs, arms, and head were normal but abdomen was small). We could not see any evidence of hypoplastic heart (which was the best news!). However, in the last appointment there was evidence that something was not normal. We had extensive time with the ultra sound tech and dr. Both said something did not look normal...not hypoplastic and no back flow but something that did not look completely normal. In a normal developing heart there is still an opening where there will be a valve after birth. But, it almost seems that there is something there now. Also, Kavannah’s kidneys did look enlarged but their function seems to be good. Although, sometimes this is a correlation with a two vessel cord verses the normal three vessel cord. However, it is another something to watch. Her ompheliocite is consistent with her initial diagnosis.
My health is a bit edgy. My blood pressure is continuing to climb. We continue to increase my medication. Pray that my body would respond. A piece of good news is that although I did not pass my one hour glucose test; I did indeed pass my official three hour glucose test. As my dr. said, “Finally, a normal test!” I am encouraged to listen to my body and take it easy when I need to. (Threat of bed rest...)
On this Tuesday afternoon we will have another appointment with our fabulous Dr. Cresta Jones with a quick scan. Then we have a big pow wow with the chief Neonatologist of NICU/Specialty Care nursery, specialty care nursery coordinator, possibly chaplain, and our perinatologist. We need to discuss our current situation as well as possible birth plans & after care. We are seeking wisdom and discernment. There is quite a bit that we don’t know yet. Like...how can you measure the spirit? I have remembered how Mara had coded a couple of times after birth but she pressed on and fought through. She had two of three shots of surfactant to get her little lungs going. Press on, is the reminder!
So, in a new decade...some things are the same. Mara Mercy was inutero 10 years ago. Kavannah is inutero now. Every day miracle reminders are presented in a lovely, stringy almost ten year old who has challenges with keeping her room clean instead of struggling for every breath. There also is this little two year old tornado called Asher that was never supposed to be here in the first place. We rest between fact and faith. (By the way, I made Jim swear that we would not be expecting in the onset of the next decade ;)
Indeed, we take a day at a time. The Lord will reveal his will for us. We are in the refining fire but soon the reflection might just come out with the purity resembling the Lamb, Prince of Peace, the Lion of Judah.
We treasure each of you. Thank you for tracking us down with beautiful Christmas cards, phone calls and messages, and the visits of friends and family. I am sorry that we have missed connecting with some of you at a recent wedding in MN that we had to pass on because of my health. I’ll keep you posted after our Tuesday events.
Love to you,
Maegan for Jim, Mara, Asher and Kavannah
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