Kelly had an ultrasound today and for all practical purposes everything is the same as last Monday. The baby is no better or worse, which is probably the most we can hope for at this point considering that there is no amniotic fluid. The prognosis has not changed either, it has just given us another week to wait and prepare.
Prior to the ultrasound, we visited with one of the nurses at the Perinatal Center where we learned that she changed the time for Kelly's next ultrasound to Wednesday morning at 7:45. She also set up a meeting immediately after the ultrasound for us to meet with the doctor who will perform the delivery, the high risk OB doctor who has been treating Kelly, and with a neonatologist. This is the meeting we have wanted and it has been set up so we can talk about birth plans and what options we have to provide comfort care for Jonah after he is born. The ultimate goal of the birth plan is to keep the risk low to Kelly and provide the safest path for Jonah to enter the world.
We also met with a social worker after the ultrasound who gave us some more information about how to talk to Evan about what is going to happen, as well as to whom we should be speaking to regarding post-birth plans. There is no exact science to tell how long we will have with him after he is born; we won't know until doctors can check his lung function. All that means is we need to be prepared for whatever we can in case he out lives our expectations.
That is all for this week; not a lot of action but it has also been nice to have a slow week to help deal with the emotional fallout from last week. I don't think there will be any news to share before next Wednesday, but I will update the blog if there is.
Wednesday, February 11, 2009
Tuesday, February 3, 2009
Home from the Hospital
The whole family is home now; Kelly was discharged from the hospital this morning with orders to lay low and, fortunately, a prescription for sleeping pills.
We now have a better sense of the plan going forward. The decision not to deliver now is quite simply because it will make the little time he has with us easier and it will be a "term" birth. So Kelly will have weekly ultrasounds with the preliminary intent to deliver between 34 - 36 weeks. The actual date will depend on his progression and the determination of when he gets to a point in development that has maximized his ability to be comforted and loved for as long as possible. This is week 31, so we are three to five weeks away.
The doctors told us this morning that, considering the level of hypoplasia, he will be with us for about a couple hours. The ultrasounds will help determine what to expect, but that is the most likely scenario.
Believe it or not, this plan has given us some peace. The last 11 weeks have been an up and down experience I will neither forget nor wish on anyone. At least now we can plan on how to plan for, and enjoy the little time we will have with Jonah. If nothing else, he will know nothing but love.
I will update the blog if anything comes up between now and then, and I will post when we now the delivery date if I can.
Peace and Love,
John & Kelly
We now have a better sense of the plan going forward. The decision not to deliver now is quite simply because it will make the little time he has with us easier and it will be a "term" birth. So Kelly will have weekly ultrasounds with the preliminary intent to deliver between 34 - 36 weeks. The actual date will depend on his progression and the determination of when he gets to a point in development that has maximized his ability to be comforted and loved for as long as possible. This is week 31, so we are three to five weeks away.
The doctors told us this morning that, considering the level of hypoplasia, he will be with us for about a couple hours. The ultrasounds will help determine what to expect, but that is the most likely scenario.
Believe it or not, this plan has given us some peace. The last 11 weeks have been an up and down experience I will neither forget nor wish on anyone. At least now we can plan on how to plan for, and enjoy the little time we will have with Jonah. If nothing else, he will know nothing but love.
I will update the blog if anything comes up between now and then, and I will post when we now the delivery date if I can.
Peace and Love,
John & Kelly
Monday, February 2, 2009
We Love you Jonah
Words can not express how I feel. Nor can I truly express my appreciation for the love and support we have received from our family and friends as well as the doctors, nurses and staff both here in Madison and in Cincinnati. It has been a long journey but at no time have we felt like we have been walking it alone. It gives me no comfort to share this, knowing the feelings it will invoke in whomever reads it. I could see it in the reactions of the people in the Perinatal center that we have gotten to know, and in the tone and behavior of the nurses. Jonah is now facing the gestational equivalent of climbing Mt. Everest without oxygen.
The news we got today was extremely difficult to take even though it was obvious on the ultrasound what was going on. It would appear, from the images, that Jonah is in end-stage renal failure and what little fluid was being generated has dwindled to either no fluid or close to it. Dialysis can not reliable be effective until an infant is eight - nine pounds. Right now he is about four pounds. Even at 41 weeks, Evan barely topped seven.
Secondly, and more importantly, he has a significant case of pulmonary hypoplasia. That means that the heart is taking up a significant portion of the chest cavity. That can only really only mean one thing; the lungs are not developing like they should. When we asked the high risk OB what the prospects of this reversing were, he clasped his hands together and paused to form the sentence "the outlook is these cases in poor." It will all come down to what they can not measure, which is lung function. It also means that they can not do anything now to help him; we will have to wait until he is born to find the truth in what all of this means. It also means the chances of him surviving are not good.
We were supposed to meet with the neonatogist and the pediatric urologist tomorrow but we requested that it happen tonight, and we are supposed to meet with them around 7:30. We should get some more answers about his chances but I would not expect that they are any different that what we heard today. Just filling in the blanks and making sure that we can make a good decision about when to give birth and what comfort is given to him.
As you may expect, we need a little time on our own right now to deal with this. We will find out more tonight about how long Kelly will stay in the hospital and what fetal monitoring should take place. I will keep everyone updated here, but we will need some space to process what happened today and we will let everyone know our plans for our little boy.
With Love,
John and Kelly
The news we got today was extremely difficult to take even though it was obvious on the ultrasound what was going on. It would appear, from the images, that Jonah is in end-stage renal failure and what little fluid was being generated has dwindled to either no fluid or close to it. Dialysis can not reliable be effective until an infant is eight - nine pounds. Right now he is about four pounds. Even at 41 weeks, Evan barely topped seven.
Secondly, and more importantly, he has a significant case of pulmonary hypoplasia. That means that the heart is taking up a significant portion of the chest cavity. That can only really only mean one thing; the lungs are not developing like they should. When we asked the high risk OB what the prospects of this reversing were, he clasped his hands together and paused to form the sentence "the outlook is these cases in poor." It will all come down to what they can not measure, which is lung function. It also means that they can not do anything now to help him; we will have to wait until he is born to find the truth in what all of this means. It also means the chances of him surviving are not good.
We were supposed to meet with the neonatogist and the pediatric urologist tomorrow but we requested that it happen tonight, and we are supposed to meet with them around 7:30. We should get some more answers about his chances but I would not expect that they are any different that what we heard today. Just filling in the blanks and making sure that we can make a good decision about when to give birth and what comfort is given to him.
As you may expect, we need a little time on our own right now to deal with this. We will find out more tonight about how long Kelly will stay in the hospital and what fetal monitoring should take place. I will keep everyone updated here, but we will need some space to process what happened today and we will let everyone know our plans for our little boy.
With Love,
John and Kelly
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