Monday, March 22, 2010
Friday, March 19, 2010
Still waiting
The last few days have been crazy. Good times with family but also very hard emotional times with Olivia and talking to the doctors and just trying to get some rest. I am starting to come down from the "just having a baby" high to the "everything is sinking in and becoming very real" high. I'm struggling.
Olivia is still stable. I've gotten to hold her a few times and I just love her so much. Despite her problems I don't think I could feel any greater love for her and I ache so bad for her to off the vent and in my arms at home.
I told some of you that she was on oxygen but not a ventilator-I misunderstood. She is on a ventilator. It's not breathing for her but it is helping her get the amount of oxygen she should be getting. She came in on 100 (which is the highest) and they've been able to get her down to around 55 but that's still not good enough for to yanked off of it. A normal amount that you and I would all be breathing on our own is 20. We can see on her monitor how many breaths she is taking on her own and how many breaths the machine is giving her and it's about 1 in every 5 breaths that it's giving her. Her heart is fine and as far as we can tell all her other organs are fine too. Her doctor said yesterday, which was very hard to hear, that she thinks if she took her off now she would not survive. She ordered a treatment of nitric oxide (not laughing gas!!) which is supposed to relax the blood vessels in the lungs and help with all this breathing stuff. So far it looks like it's doing what it's supposed to be doing but how fast and will it keep helping are the things we need to wait for. Once they started the treatment she was able to go from 68 to 55 but she's been at 55 for about 24 hours.
We also had a family meeting with the doctors and the genetics team. Olivia does definitely have Trisomy 13. We didn't expect anything different but the trail that that conversation goes down is a hard one. Since there is nothing other than "comfort care" to provide we had to talk about what to do for her and what not to do for her. (Terrible conversation to ever have about your children) The doctor agreed that continuing treatment for her now where she's at is reasonable but if she would take a turn for the worse what would we want? I won't go into all those details but we know that if she would get worse there would be no turning back because of her diagnosis. They don't see any lung disease so they think that her breathing could be a result of her condition OR her delivery in which case they are treating her like a normal baby since a lot of time they get over this "hump" in the first couple of days. We will know in another day or two if she is going to be able to be weaned off of the vent or not and at that time we will have to decide what we want to do. Do we want to remove it and see what she does (yes it can be put back if we decided that) or would we want to leave it in even if it's not going to get better and then does that mean life? It's all so hard and so much to think about, worry about, cry about. I want her home but at the same time I am praying to be prepared if that doesn't happen.
What we need prayer for right now is strength and guidance. This is the hardest thing we've ever been through and looking ahead it's hard to see that light at the end of the tunnel. Also guidance for the decision we have to make and the ones we will have to make.
Olivia is still stable. I've gotten to hold her a few times and I just love her so much. Despite her problems I don't think I could feel any greater love for her and I ache so bad for her to off the vent and in my arms at home.
I told some of you that she was on oxygen but not a ventilator-I misunderstood. She is on a ventilator. It's not breathing for her but it is helping her get the amount of oxygen she should be getting. She came in on 100 (which is the highest) and they've been able to get her down to around 55 but that's still not good enough for to yanked off of it. A normal amount that you and I would all be breathing on our own is 20. We can see on her monitor how many breaths she is taking on her own and how many breaths the machine is giving her and it's about 1 in every 5 breaths that it's giving her. Her heart is fine and as far as we can tell all her other organs are fine too. Her doctor said yesterday, which was very hard to hear, that she thinks if she took her off now she would not survive. She ordered a treatment of nitric oxide (not laughing gas!!) which is supposed to relax the blood vessels in the lungs and help with all this breathing stuff. So far it looks like it's doing what it's supposed to be doing but how fast and will it keep helping are the things we need to wait for. Once they started the treatment she was able to go from 68 to 55 but she's been at 55 for about 24 hours.
We also had a family meeting with the doctors and the genetics team. Olivia does definitely have Trisomy 13. We didn't expect anything different but the trail that that conversation goes down is a hard one. Since there is nothing other than "comfort care" to provide we had to talk about what to do for her and what not to do for her. (Terrible conversation to ever have about your children) The doctor agreed that continuing treatment for her now where she's at is reasonable but if she would take a turn for the worse what would we want? I won't go into all those details but we know that if she would get worse there would be no turning back because of her diagnosis. They don't see any lung disease so they think that her breathing could be a result of her condition OR her delivery in which case they are treating her like a normal baby since a lot of time they get over this "hump" in the first couple of days. We will know in another day or two if she is going to be able to be weaned off of the vent or not and at that time we will have to decide what we want to do. Do we want to remove it and see what she does (yes it can be put back if we decided that) or would we want to leave it in even if it's not going to get better and then does that mean life? It's all so hard and so much to think about, worry about, cry about. I want her home but at the same time I am praying to be prepared if that doesn't happen.
What we need prayer for right now is strength and guidance. This is the hardest thing we've ever been through and looking ahead it's hard to see that light at the end of the tunnel. Also guidance for the decision we have to make and the ones we will have to make.
Wednesday, March 17, 2010
THE story...
I will try to make this quick since I am one tuckered out momma at this time.
I thought I would take a few minutes to try to tell the whole birthing story in detail.
I was waking up on and off through the night on Monday with gas....or so I thought! Really I never would have thought that I was in labor. I even imagined my mother's voice a few times "Jennifer, are you sure you're not in labor?!", but quickly dismissed it because I had had gas before and I new what labor felt like too. This did not feel like labor, not in a million years. Yeah, I was a bit uncomfortable but I wouldn't say I was in pain.
I got up a few times to walk around and just try to get some relief but always ended up back in bed to get a few more zzz's.
I woke up around 7 starting to get a bit more uncomfortable and, at that point, suspicious. I figured I would get up, take my shower, pay a few bills or something and then head off to my Dr. apt where they would be able to give me something for my "uncomfortable gas"!! (I know you guys are laughing at me right now! I really REALLY never in a million years would have thought it was labor!)
About 8 o'clock it started getting very uncomfortable and I called a friend to ask for advice. She said she thought I was probably in labor we planned for me to go get the fam up, bring Gwen over to her place since my mother in-law would have been at work already, and then head to the hospital. If it was gas they could send me home, if not we would be there!
I went upstairs and woke up Andy who went and got Gwen up and dressed and then decided to take a shower. I told him it better be the fastest shower in his life, which it was, and TRIED to get a few things in a bag and ready to go. At this point something was happening very quickly and I knew I was definitely in labor. It was probably around 8:15. I was in so much discomfort that I gave up on packing the bag and decided we didn't have time to run to E's house and my mother in-law would have to come from work to our house.
Andy started Gwen's breakfast just in time for me to change my mind again and decide that we would have to take Gwen with us to the hospital and Kathy would have to meet us there. It was around 8:30 at this time. Andy ran me out to the car and then went back in to get Gwen. I didn't get in right away knowing I would be too uncomfortable sitting there so I stood by the side of the car in MUCH PAIN. Immediately my water broke and I could feel her head coming!! (Sorry if that's TMI:p) AHHHH-I have always vowed to never yell or scream during labor/delivery but I was a screaming banshee!!! I was terrified and I could feel my baby coming!
Andy ran out and put Gwen in the car and I told him "no time", threw him my phone to call 911 and headed back towards the house. He was telling me to get back in the car and didn't understand that I knew we really REALLY didn't have time. He called 911 (which is another story since they didn't have our in-town coordinates in their system and didn't know where the house was right away) while I laid on the back porch praying that I didn't have my baby there! Gwen was getting pretty upset by now so Andy took her back in the house and put her in her high chair, ran around the front of the house to flag down the cop car, and all the while still on the phone saying things like "it's near the intersection of ____" and "she's having the baby RIGHT NOW"!
I got about a second of break time from pain so I crawled into the house, made it to the living room and laid there knowing what would happen any minute. I couldn't control anything, it was just happening. It was probably somewhere between 8:35 and 8:40.
By now there was a cop there but no paramedics. I actually thought the cop was a paramedic and wondered why he wasn't helping me. The rest of the story is almost a blur. I remember terrible pain followed by feeling her head come out (paramedics still not there!!), Andy and the cop looking at each other like 'what the heck do we do!' Andy saying "OH MY GOSH!" and me wondering what I was going to do if this baby came all the way without the paramedics!!
Luckily they came about 30 seconds after her head did and within a couple minutes she was born!! 8:52 It all happened somewhere within 15-20 minutes!! We were both taken right away to Lansdale hospital since it was closest to get us stable. I had trouble delivering the placenta so they sent me to Grandview (no OB at Lansdale) and I finally delivered it.
Olivia was sent to CHOP. I'm not really sure why since this was never in the plan but I have a few thoughts for a later time. I need to wrap up and go to bed.
I am fine! I feel good, no pain, no stitches, no HEARTBURN! Olivia is doing well too! We've had some very busy couple of days and I will take another time to tell you about them. So far we know that she is doing well, they are still predicting Trisomy 13 although her labs haven't come back yet, and they are on board with us trying to bring her home soon. We will know more tomorrow the details of all of that. I am able to have a bed here to sleep on and we're just taking it day by day for now. Keep praying for us, I know you are.
One last thing: All you home birth girls....rock on! I can say I did it and I can also say I won't do it again!! YIKES!
Wednesday, March 10, 2010
Yay spring!
The last few days have been good. I feel refreshed waking up and seeing the sun and letting the doors open a bit to air things out. It makes me feel better physically and mentally.
We celebrated Gwen's 2nd birthday over the weekend with a Wiggles themed party at my in-laws house! It was a great time with family and some close friends and Gwen LOVED digging into her Big Red Car cake thanks to a very talented team mate of mine. If anyone needs a cake let me know and I'll give you her contact info!! I had no clue what to do about getting a Wiggles cake and she saved the day! Thanks Jen!
Gwen's actual birthday was yesterday. It was the perfect day to remember our precious little girl coming into the world. The weather was amazing and Andy had off work. The day started with a Dr. apt for me. It was weird. They didn't have me in the computer but squeezed me in for a quick check up anyway and I mean QUICK. I gained half a pound and blood pressure is normal, thank the Lord! I'm concerned about this (blood pressure) because I was induced with Gwen due to high blood pressure and I really REALLY don't want to be induced again. I want to go into labor naturally. I guess I figure it will be easier on both me and Olivia. The Dr. came in right away and checked her heart which was, again, normal and felt my belly quick and then I was done. I was probably in there a total of ten minutes. Maybe they should mess up on all my appointments so I don't have to wait so long to be seen!
When I got back Andy had an apt. with his Endocrinologist and then after nap time we got some family photos taken by the talented Kevin High of Kevin High Photography. We made it as casual and laid back as possible and took the opportunity to be outside and enjoy some play time together while Kevin did his thing. I can't wait to see how the photos turned out. We've never had family pictures done and it was important to me to get some while I'm still pregnant. Just another way to document this part of our lives and the fact that it was on Gwen's birthday is cool too! Kevin will also be at the hospital to take pictures of Olivia. This is such a blessing in the fact that I haven't been able to bring myself to contact NILMDTS and now I won't have to. I don't know why that task has been the one thing I haven't been able to do at this point but I have just been dreading and putting it off while knowing that I didn't have much longer to be doing that.
Today was a nice day too. Gwen and I went to MOPS which I was really looking forward to especially since it was canceled last month because of the snow. My table presented me with a gift, an absolutely exquisite baby blanket that was woven by a local woman just for us. I don't know her but she knows our journey and wove the blanket on her loom while praying over it for us and for Olivia. It is so incredibly beautiful and I can't wait to use it. She included a very touching note that brought me to tears and after that bawl fest I had another one when all of the moms gathered around me, laid hands on me and prayed. Even now words escape me to really say much about it other than I was so touched. I know the power of prayer is great and hearing them pray and cry with me reminded me that God is still not done. None of this has been forgotten about, no one has stopped praying and more have started praying. I'm in awe to see how God has worked in this situation so far.
I have about 2 1/2 weeks left. I'm excited, nervous...I don't even really know what I am. I'm still working on my "to do" list and thinking about what I should or shouldn't do to get ready for a new baby. Keep praying. I know you are.
We celebrated Gwen's 2nd birthday over the weekend with a Wiggles themed party at my in-laws house! It was a great time with family and some close friends and Gwen LOVED digging into her Big Red Car cake thanks to a very talented team mate of mine. If anyone needs a cake let me know and I'll give you her contact info!! I had no clue what to do about getting a Wiggles cake and she saved the day! Thanks Jen!
Gwen's actual birthday was yesterday. It was the perfect day to remember our precious little girl coming into the world. The weather was amazing and Andy had off work. The day started with a Dr. apt for me. It was weird. They didn't have me in the computer but squeezed me in for a quick check up anyway and I mean QUICK. I gained half a pound and blood pressure is normal, thank the Lord! I'm concerned about this (blood pressure) because I was induced with Gwen due to high blood pressure and I really REALLY don't want to be induced again. I want to go into labor naturally. I guess I figure it will be easier on both me and Olivia. The Dr. came in right away and checked her heart which was, again, normal and felt my belly quick and then I was done. I was probably in there a total of ten minutes. Maybe they should mess up on all my appointments so I don't have to wait so long to be seen!
When I got back Andy had an apt. with his Endocrinologist and then after nap time we got some family photos taken by the talented Kevin High of Kevin High Photography. We made it as casual and laid back as possible and took the opportunity to be outside and enjoy some play time together while Kevin did his thing. I can't wait to see how the photos turned out. We've never had family pictures done and it was important to me to get some while I'm still pregnant. Just another way to document this part of our lives and the fact that it was on Gwen's birthday is cool too! Kevin will also be at the hospital to take pictures of Olivia. This is such a blessing in the fact that I haven't been able to bring myself to contact NILMDTS and now I won't have to. I don't know why that task has been the one thing I haven't been able to do at this point but I have just been dreading and putting it off while knowing that I didn't have much longer to be doing that.
Today was a nice day too. Gwen and I went to MOPS which I was really looking forward to especially since it was canceled last month because of the snow. My table presented me with a gift, an absolutely exquisite baby blanket that was woven by a local woman just for us. I don't know her but she knows our journey and wove the blanket on her loom while praying over it for us and for Olivia. It is so incredibly beautiful and I can't wait to use it. She included a very touching note that brought me to tears and after that bawl fest I had another one when all of the moms gathered around me, laid hands on me and prayed. Even now words escape me to really say much about it other than I was so touched. I know the power of prayer is great and hearing them pray and cry with me reminded me that God is still not done. None of this has been forgotten about, no one has stopped praying and more have started praying. I'm in awe to see how God has worked in this situation so far.
I have about 2 1/2 weeks left. I'm excited, nervous...I don't even really know what I am. I'm still working on my "to do" list and thinking about what I should or shouldn't do to get ready for a new baby. Keep praying. I know you are.
Thursday, March 4, 2010
3 1/2 weeks to go....
It was nice to wake up this morning and see the sun out. Not that we haven't had any sun for awhile but I am excited for spring and summer to be here and I enjoyed the reminder of the changing seasons this morning.
Gwen and I just finished breakfast (actually she's still on her second egg!) and I'm sitting here contemplating what to scratch off of my list for today. Too much in one day equals Jenny being a very exhausted girl these days.
I went to the dr. the other day. Everything was fine like usual. I saw a new dr. this time. He actually knew my situation unlike the other new dr. I had seen several weeks ago. It was nice not to hear him say things like "woo hoo only 3 1/2 weeks left!! You're almost there!" They all should really read the charts before hand since they really don't know what they could be saying to patients like me. Anyway, he did know everything and we went over a few details about delivery. One thing he said was that Dr. M told him that I wanted to do everything including a c-section if I needed to for the baby. I said yes, of course, if we knew the baby was in fetal distress I would want a c-section just like with any other child I would have. His response was "well, you know many people would choose not to have one because the prognosis is so bad." UGH!! I calmly said that I understood the prognosis but if we knew that our baby was stressed and a section would normally be suggested then we would not want to let that go. (Gwen is now eating her second piece of toast! She has officially eaten as much as me for breakfast!) He was nice enough about it and said ok but that stuck with me for the rest of the day. All I could hear was him saying "because the prognosis is so bad". I just wanted to lash back at him and say "of course I know the prognosis is bad but why would I have made the decision back 5 months ago to keep my baby if I was going to let her go during delivery???????????? Even now it gets me all fired up!
The thing is that we already love Olivia so much! Just like any other child that a mother carries and delivers the love we feel for that child starts as soon as we see those two blue lines on the stick! And then of course when you feel the movements that's a whole new realm of love for that baby, finding out if it's a boy or girl, getting a belly, etc. Each new step in this pregnancy is just one more way that I already love her and so does Andy for as much as he can being the dad and NOT being pregnant! How much more does her creator love her?!!
I might never understand why God created Olivia this way. If he chooses not to heal her I might never understand why He put her in our lives only to take her away so soon. But He has given her to us and our decision and the right thing to do is to take care of her as much as we can until He decides that her time on earth is done. He has already given us much MUCH love for her and I know when I see her for the first time my love will grow even more like it did when I had Gwen. I do get nervous about delivery but when I think about seeing her and holding her I get excited! I'm having a baby!
Well, I have things to do and Gwen is in the process of destroying her sippy cup!
Please keep praying for us. 3 1/2 weeks is going to go extremely fast and there's still things to do before that. Please keep praying for healing and pray that God continues to show me whatever I need to know/do to prepare me for Olivia's arrival.
Enjoy the sun today!
Gwen and I just finished breakfast (actually she's still on her second egg!) and I'm sitting here contemplating what to scratch off of my list for today. Too much in one day equals Jenny being a very exhausted girl these days.
I went to the dr. the other day. Everything was fine like usual. I saw a new dr. this time. He actually knew my situation unlike the other new dr. I had seen several weeks ago. It was nice not to hear him say things like "woo hoo only 3 1/2 weeks left!! You're almost there!" They all should really read the charts before hand since they really don't know what they could be saying to patients like me. Anyway, he did know everything and we went over a few details about delivery. One thing he said was that Dr. M told him that I wanted to do everything including a c-section if I needed to for the baby. I said yes, of course, if we knew the baby was in fetal distress I would want a c-section just like with any other child I would have. His response was "well, you know many people would choose not to have one because the prognosis is so bad." UGH!! I calmly said that I understood the prognosis but if we knew that our baby was stressed and a section would normally be suggested then we would not want to let that go. (Gwen is now eating her second piece of toast! She has officially eaten as much as me for breakfast!) He was nice enough about it and said ok but that stuck with me for the rest of the day. All I could hear was him saying "because the prognosis is so bad". I just wanted to lash back at him and say "of course I know the prognosis is bad but why would I have made the decision back 5 months ago to keep my baby if I was going to let her go during delivery???????????? Even now it gets me all fired up!
The thing is that we already love Olivia so much! Just like any other child that a mother carries and delivers the love we feel for that child starts as soon as we see those two blue lines on the stick! And then of course when you feel the movements that's a whole new realm of love for that baby, finding out if it's a boy or girl, getting a belly, etc. Each new step in this pregnancy is just one more way that I already love her and so does Andy for as much as he can being the dad and NOT being pregnant! How much more does her creator love her?!!
I might never understand why God created Olivia this way. If he chooses not to heal her I might never understand why He put her in our lives only to take her away so soon. But He has given her to us and our decision and the right thing to do is to take care of her as much as we can until He decides that her time on earth is done. He has already given us much MUCH love for her and I know when I see her for the first time my love will grow even more like it did when I had Gwen. I do get nervous about delivery but when I think about seeing her and holding her I get excited! I'm having a baby!
Well, I have things to do and Gwen is in the process of destroying her sippy cup!
Please keep praying for us. 3 1/2 weeks is going to go extremely fast and there's still things to do before that. Please keep praying for healing and pray that God continues to show me whatever I need to know/do to prepare me for Olivia's arrival.
Enjoy the sun today!
Sunday, February 21, 2010
Update continued.
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!!
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
I MUST update this blog!!
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.
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