I told you I would update again soon and I'm proud of myself for actually doing so!
A few days ago I got a call from the head pediatrician from CHOP at Grandview. (Does that make sense?) He was a super nice guy that explained things really well to me and, again, I felt very encouraged and supported. We came up with a plan of care that I'm happy with for what we know so far about Olivia. I'm so relieved that the people we are directly working with at this point are supportive of us and our wishes for her and not the ones that encouraged us to terminate.
Honestly there isn't really a whole lot that we can plan for her at this point except to keep her comfortable and address immediate needs like breathing and feeding. Breathing, of course, is the most immediate and we talked about what we would want them to do for her IF she was having trouble on her own. Understand that we don't have a reason to suspect that she will definitely have trouble with this, we are just what-ifing right now! (Yes, I just made up that word!) There are many options that can be provided for any baby that has trouble breathing and I told the doctor that we would want to help her and not let her struggle with this. The other issue that we really do have to be prepared for is the feeding issue. This one we know is something we need to be prepared for due to her cleft. Depending on the severity of it (and they think it looks pretty large) there is the big possibility of a feeding tube. Babies are born with clefts all the time and they do have special bottles/nipples and other methods of feeding until it gets corrected, but we know with Olivia that the cleft looks pretty severe and they are not going to be planning on fixing it since that would require surgery that she may not survive. We will try whatever works before a feeding tube, but that is a big possibility. Fortunately babies don't really need a whole lot the first 24 hours or even a bit longer so this is something that we can be patient with and see how it's going with attempting to feed her before we make any huge decisions.
Dr. C said that they would also do all the normal routine things that they do for babies when they are born. The normal shots, ointments, sucking out the junk in their noses and mouths, warming, stimulating, etc. I was happy that he just simply said that they would do all that stuff and it wasn't him asking me if we wanted them to. It's a small thing but it's again encouraging to know that they see her as a baby and not just a baby that's going to die anyway.
Speaking of that I got brave and asked him what her chances were considering all things so far. Things being that her heart is always normal, strong and consistent, she is very active and strong in the womb and the fact that all her other organs do look normal on the ultrasound pictures including her heart which tends to be the number one other defect for a baby with a chromosome abnormality. I don't really expect a specific number/percentage of her chances for survival and I do know that at some point she will die from this, but like I said in the last post I don't feel led to plan a funeral. Is this me being too hopeful and not realistic? He said that his understanding of the situation from experience, readings, etc, is that if the baby does make it to birth (remember way back in the beginning the 50% chance she would die in the womb?) and there are no other defects (which they don't see at this point) and the baby is strong then there is a decent chance that she could hang on for awhile. In what condition we don't know, but yes we could very well bring her home for however much time God has her on this earth!
I suppose this could be an answer to one of my prayers. I told you before that I have been praying that God shows me what to do and how to prepare for this and I have been feeling lately that maybe I need to start doing some things to get ready for a baby. The fact is that there is a baby coming whether she lives for a short time or longer than we expect. A baby that will need diapers and clothes and hopefully a car seat to come home in. I'm not talking about painting what would be her bedroom or anything like that. But I have felt strongly in the last several weeks that I need to get up to the attic and start hunting for the necessities. I need to have at least the bare minimum ready and if we need more, then by golly we'll get more, GLADLY! I may even go out and buy her a couple of new outfits because I really want her to have stuff that is hers. I'm fully prepared for another girl with all of Gwen's things but I have been feeling that I'm going to want at least a few things that I can say to Gwen and any other children, family, friends, this was Olivia's outfit that she wore for _____. I think this decision is the right one and I feel good about it.
So I'm going to get ready for a baby. I'm also going to get my spring cleaning done. I want to get the house back to being organized and ready for the new season. I also want to get some nice family photos taken before I deliver. Ones that show me being pregnant and Gwen with her sister. Even those are precious pictures of Olivia that I can start collecting now. The entire list of things is long and my time at this point is short, but I'm glad to start diving in. This is kinda the home stretch for me and five weeks will come fast but I'm ready. I really am. I don't know that I'm prepared but I'm ready. We've been chewing on all of this for so long now and God has brought me a long way from the grieving to the feeling of knowing that he's with us and this is all the way it's supposed to be so I guess I feel kinda like 'let's get on with it'. Actually being there may make me change my tune but there's still the excitement of having a baby!! I want to see her, hold her and meet this little one that's been giving me wretched heartburn the past nine months!! I know what I know, I'm as prepared as I can possibly be so I guess I'm ready.
Keep praying for us and for Olivia. I still think about her being healed at least 500 times a day. Oh, how amazing would that be!?
We are doing well considering all things and it's because of you all who are constantly lifting us up in prayer. I know you are because you tell me you are so THANK YOU! The situation is not good but God is good. I really do believe this and I really do have so much to be thankful for and so many blessing being poured on me every day.
By the way the other day Gwen and I were sitting on the couch together and she suddenly lifted up my shirt, waved at my belly, and in the sweetest little voice said "hi"! We have thought that she doesn't really get at all what is going on but she seems to start realizing more that there is something going on with my belly and she is starting to refer to "the baby" in there. So cute! I know she probably won't remember much due to her age right now but I am glad she's starting to catch on. She's turning 2 in a couple of weeks!! I can't believe it!!
Saturday, February 20, 2010
First of all I apologize to those of you who have been waiting for an update. I have been meaning to post one for awhile, more so in the last few days. I feel like this past month has been a whirlwind of sickness in our house mixed with catching up from that and keeping busy with Pampered Chef, family, and a few other things. I'm glad for the activity though. It's nice to not just be sitting around and thinking all the time.
It's been so long since I updated last because I really don't have a lot of new news. Nothing major anyway. The newest news would be my latest Dr. appointment. I was anxious to go to the dr. this week because I had a lot of questions regarding delivering Olivia. I'm getting pretty close now (5 weeks) and with that comes thinking about the details.
My questions to him where things like if I have to be induced is that going to put more stress on Olivia? Why is her heart rate normal when I'm waiting for it not to be? What can Grandview (which does not have a NICU) do for her if she is struggling with this that or the other? Stuff like that.
I had been having second thought about Grandview because of the fact that they don't have a NICU. Yes, I know that no hospital on the face of the earth can fix Olivia's brain, but what if she's born struggling to breathe? (We are not necessarily thinking that she will, this is just a what if.) Dr. M reminded me that even healthy babies can have those kind of problems and of course they are equipped to handle immediate concerns like that.
I asked who would be taking care of Olivia in the hospital. I had spoken to our pediatrician about the situation and I got the feeling when I left that he didn't quite get what the condition was. I was told that Grandview had a pediatrician from CHOP there all the time and they would take care of her. We made plans to get in touch with him to talk about a plan of care for her when she is born.
I asked about her heart. I have been waiting to go in and find that it has drastically gone from normal to abnormal and it hasn't! Does this mean anything? Will they monitor her during delivery? He told me that they can monitor it if it continues to stay normal. Many times the heart rate is all over the place, especially during delivery, and this gives the doctors no indication of fetal distress or anything else because it doesn't follow any kind of pattern. He said if they see a normal-normal heart rate and then see a normal-abnormal heart rate that does indicate fetal stress would I want a c-section? Yes. If the case was that they could see she was in distress of course I would do whatever I could for her just like any other child I would have.
One last thing I wanted to get a different perspective on was the funeral. It's not a fun thing to talk about but it's a very realistic part of this situation. I have been praying and praying that God shows me what to do to be prepared. Whether it's plan a funeral, get some baby clothes down from the attic to wash up and get ready to use, etc. I asked Dr. M if I should be planning a funeral. Should I plan on her definitely not living more than a day or so? I told him that I don't feel led to plan her funeral at this point. He simply said don't do it. "You know you will be there at some point but now is not the time to do that." I felt very encouraged and supported by him. He said that we don't know for sure that she won't hang on for a little while and hopefully come home for a bit! Nobody is saying that she definitely will but it could happen. We just don't know. He also said that if we would have to make those kind of arrangements right away they have people that will help us with that. It's nothing we will have to try to figure out on our own, especially right after giving birth.
I have more to tell you about speaking with the pediatrician from CHOP but I've got a nap to interrupt if I want to stay on schedule for bedtime tonight! I will update again SOON and I won't make you all wait so long!
The quilt in the picture was made and sent to us from our church back in IN! I bawled like a baby when I opened it. The families all got a square to contribute and it's full of encouraging words and scripture. I will treasure it forever and be happy to have it years from now when it will be a reminder to us of all the love and support we had during this time.