Tuesday, March 23, 2010
Service details
Olivia's funeral is scheduled for Sat. March 27th at Penn Valley Church in Telford. visitation is from 10-11 and service will start at 11 followed by burial and lunch back at the church.
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!
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