Hope. Such a dangerous idea. I want to hold onto it so much. But I want to protect myself from it too. I know, my little princess, that your diagnosis is dire. Incompatible with life. I've seen the stats. There is a 1/4 chance you won't make it to and through birth. After that the Drs. all say pretty much the same thing. As soon as you're born or very soon after you will die. But what if. I have heard 2 stories now of children with the same diagnosis one living for 2 months, one living for 4 months. Of course as soon as I type that the doubts flood. Other kids have died sooner, other kids didn't have spinal bifida on top of things. There's too many unknowns. Too many what ifs.
But I want to keep hoping. I want to hold you in my arms and give you all the love I can. I want you to feel the cool fall breeze on your cheek. I want you to smell flowers, pumpkin pie, hazelnut and your daddy's chicken curry. I want you to see the blue sky. I want you to sleep in a bassinet next to our bed and I want to wake up to you crying or squeaking and making cute noises. So many things I want for you, that make up my dreams. But things might not go that way. So daily I have to battle. Do I hope for the best and prepare for the worst like I say that I do? Or do I prepare for the worst and expect it too? It's a hard balance to strike. One I don't know if I've done or not. The Bible talks a lot about hope. I had a verse in my mind but I like this one instead for now. I Corinthians 13:7 It (love) always protects, always trusts, always hopes, always perseveres.
I know I don't have perfect love. Only the Lord has that, and let me tell you baby girl He loves you perfectly and so much more and better than I can. But I pray that He will fill me with Himself so I can love and hope and do all the best I can for you.
I also want to mention my "little mountain goat" that you did so well today during our fluid draining. It was a little painful for me and I was worried that I might upset you too much, but you were very calm and stayed away from the needle just like you were supposed to. So I'm grateful to the Lord for that. I'm also grateful He gave me just the right name for you. You know why? Goats can be pretty stubborn and determined. And you my little love hang on just like that. The Lord has always known you-before I did and before time itself! So keep hanging on to life. I'll keep fighting for you, and the Lord always keeps you in the palm of His hand.
Know you are the apple of the Lord's eye.
I love you,
Mommy
Monday, September 26, 2011
Wednesday, September 21, 2011
Dropping Down
Well today you are 35 weeks and 2 days along. We went to visit our wonderful Dr. and he told me that you had dropped down! That means you're starting to get ready for your big debut! Now it doesn't mean that you'll come tomorrow or the next day-you still might not come for a few more weeks, (which is fine-you grow all you need to) but it's one step closer! It was pretty funny when I told daddy about what the Dr. said. His jaw dropped a little and his eyes got very wide and said, "What does that mean???" I laughed and said it just meant you were closer to being ready. But he still wasn't sure so he asked me, "Okay but do I have to worry about this the next two seconds, two hours, two weeks?" I said well the Dr. said really she could come anytime because of all the fluid. But then I assured him that anytime really means could be weeks from now. Which it could. But it's so funny, I think without knowing until later that's what you were doing, I remember you dropping down. It was sometime this past week-the days kinda blur sometimes, but you were moving like crazy-like crazy, crazy! It was a little scary because I was wondering if you were okay in there, but you calmed down eventually that evening and things seemed to be okay. But yep I think dropping down is what you were up to! (It also makes sense because we're still building up fluid but I can still breathe at this point)
I also wanted to tell you about the beautiful quilt and scrapbook your family and friends made for you. Each of Mommy's family and friends sent in a piece of cloth and a note to you and two of your great aunts made two quilts and a scrapbook with the piece of cloth and note so we knew who gave which one. There's a big quilt for mommy and daddy and a little one that will stay with you. The notes of course made me cry. But it was really nice-they gave it to us at a family dinner since we didn't have a baby shower.
Its funny to think about-in a horrible sort of way. If when we found out about your brain we decided to just get rid of you I think a lot of my family probably would have supported that. That's the way it is in this country sadly. But because we didn't (and they support that) (I think they would have just supported whatever choice because its "our choice" and its not something they've gone through) they have a chance to love you and to grieve when you are gone. If I had just decided on my own then they wouldn't have had that chance. So even though your life is short my darling girl, know that you've touched lives in great ways.
I'm not sure I said that just right, but the point is, is that you were not a mistake or accident. The Lord made you for a purpose. And even though that purpose here is for a short time-it doesn't make it any less important than anyone else's purpose. Anyway I'm done rambling for now-of course you're probably used to that.
I love you,
Mommy
I also wanted to tell you about the beautiful quilt and scrapbook your family and friends made for you. Each of Mommy's family and friends sent in a piece of cloth and a note to you and two of your great aunts made two quilts and a scrapbook with the piece of cloth and note so we knew who gave which one. There's a big quilt for mommy and daddy and a little one that will stay with you. The notes of course made me cry. But it was really nice-they gave it to us at a family dinner since we didn't have a baby shower.
Its funny to think about-in a horrible sort of way. If when we found out about your brain we decided to just get rid of you I think a lot of my family probably would have supported that. That's the way it is in this country sadly. But because we didn't (and they support that) (I think they would have just supported whatever choice because its "our choice" and its not something they've gone through) they have a chance to love you and to grieve when you are gone. If I had just decided on my own then they wouldn't have had that chance. So even though your life is short my darling girl, know that you've touched lives in great ways.
I'm not sure I said that just right, but the point is, is that you were not a mistake or accident. The Lord made you for a purpose. And even though that purpose here is for a short time-it doesn't make it any less important than anyone else's purpose. Anyway I'm done rambling for now-of course you're probably used to that.
I love you,
Mommy
Friday, September 9, 2011
Your photo shoot!
What a week for the both of us! We got more fluid taken out and we saw some pictures of you during those times. Of course I love seeing you each and every time-your arms and legs-though you do like to hide your face still.
We found that out very well today! Today was your big day. Lots of people came to see you during a 3D photo shoot! My Dad and Diane and Mom and Grandma, and Daddy's Mom and Grandma. Also Betsy came and Tara, Katie, Leanna, and Naomi! So you had quite the crowd-all just to meet you! Well we got there and started looking around for you and you did not want to show your face! You either turned away completely or put your cute hands in front of your face. Stubborn just like your Mommy. But finally after a good half hour you decided to show off your pretty face. The ultrasound tech said you looked like you have my nose and chin (and I think lips)I don't know though I think she's wrong about the chin-might be more daddy's.
It was so precious to see you moving around and sucking your thumb and chewing a little on your cord. Our little princess. Our sweet little girl. Everyone thought it was so wonderful to see you. I'm so proud to have you as my daughter. You fit your name. You are a little fighter, sassy and silly and our sweetheart. Daddy came up with a great nickname for you today! Jaelly Belly! It's hard to describe how I felt watching you up there. I think in awe of the fact that I could see you and that you are in my tummy and I get to be your mommy. That and love. I love you so much more than I can say. I would do anything for you. Now just make sure that when we visit the Dr. you turn around so we can hear your heartbeat really well and record it :P
Love Mommy
We found that out very well today! Today was your big day. Lots of people came to see you during a 3D photo shoot! My Dad and Diane and Mom and Grandma, and Daddy's Mom and Grandma. Also Betsy came and Tara, Katie, Leanna, and Naomi! So you had quite the crowd-all just to meet you! Well we got there and started looking around for you and you did not want to show your face! You either turned away completely or put your cute hands in front of your face. Stubborn just like your Mommy. But finally after a good half hour you decided to show off your pretty face. The ultrasound tech said you looked like you have my nose and chin (and I think lips)I don't know though I think she's wrong about the chin-might be more daddy's.
It was so precious to see you moving around and sucking your thumb and chewing a little on your cord. Our little princess. Our sweet little girl. Everyone thought it was so wonderful to see you. I'm so proud to have you as my daughter. You fit your name. You are a little fighter, sassy and silly and our sweetheart. Daddy came up with a great nickname for you today! Jaelly Belly! It's hard to describe how I felt watching you up there. I think in awe of the fact that I could see you and that you are in my tummy and I get to be your mommy. That and love. I love you so much more than I can say. I would do anything for you. Now just make sure that when we visit the Dr. you turn around so we can hear your heartbeat really well and record it :P
Love Mommy
Saturday, September 3, 2011
Daddy felt you move and our big day yesterday
Well I can't remember the exact day, but it was in August that daddy finally felt you move! We were at the French's watching the A-team movie. Just sitting on the couch together with his hand on my belly and boom! "Was that her kicking?!" "I don't know-I couldn't tell." But then you kicked again and it was the best feeling in the whole world! It was funny the French's were with us and Betsy said later, "I heard Jessica squeal and I looked over and you were both glowing!" Since then he hasn't felt you move, but he's seen you bounce my whole stomach!
Speaking of my stomach, aka where you are currently chilling out at. This past Sunday I started having a lot of pain. I felt sick and very short of breath etc. So I went home from church layed down, but the pain wasn't leaving. So once again I called Dr. Rao for us. He told me we should come in the next morning. So the three of us went in and he saw me and measured your room and said it was getting a little bit big so he wanted to send us to get an ultrasound. Well we got to see you-which is always wonderful-you're little hands a moving and your sweet feet-right where my ribs are :P
But they also found real big pockets of fluid. The number was 39. They told me that was very high. The Dr. came and said the high end of normal is 20 and we were almost twice that! So he said come back Friday and we would talk about getting rid of some of that extra fluid so I would feel better. It was a lot to think about. If we didn't do it, I could go into labor early and there could be other complications. If I did do it I could go into labor and there would be other different complications. But we decided that getting some of the fluid out would give you a better chance of staying in your room a little longer and make me a little more comfortable.
So Friday comes around and our appointment was at 8.30. Well we get there and answer all the normal questions from the nurse and get my blood pressure taken and it turns out the Dr. is delivering another baby! Well daddy and I couldn't argue with that-babies are gonna come when they come. So we went back out into the waiting room where it was much cooler. And we waited. And waited. And waited. The receptionists and nurses felt bad for us and they kept paging and emailing the Dr. but we were okay. It was either wait until he got there at the hospital or wait at home until Tuesday. So we decided it was best to wait there. So he finally came around 11.45 and we talked and we told him we wanted to get the fluid out.
So we went into the ultrasound room and they checked your sweet little heartbeat and where you were and what level the fluid was out. Fortunately you were doing just fine, but the fluid lvl had gone up to 41! So the Dr. decided to take a liter out. He put so numbing stuff on my tummy and stuck in the needle. Who that didn't feel great! Daddy's hand got squeezed real hard! But it wasn't too too bad. They got a liter and measured the fluid again. Back to 39...so we'll see Tuesday if it goes back up. Thankfully it didn't bother you any and your heartbeat was fine and you stayed right where you were. Thank the Lord for that! I had some cramping and Dr. Rao stopped by to check on me but then we left and got lunch. So far I've been feeling better and while you have a little less room to swim you seem to be doing just fine. We love you so much. Our little princess.
Love, Mommy
Speaking of my stomach, aka where you are currently chilling out at. This past Sunday I started having a lot of pain. I felt sick and very short of breath etc. So I went home from church layed down, but the pain wasn't leaving. So once again I called Dr. Rao for us. He told me we should come in the next morning. So the three of us went in and he saw me and measured your room and said it was getting a little bit big so he wanted to send us to get an ultrasound. Well we got to see you-which is always wonderful-you're little hands a moving and your sweet feet-right where my ribs are :P
But they also found real big pockets of fluid. The number was 39. They told me that was very high. The Dr. came and said the high end of normal is 20 and we were almost twice that! So he said come back Friday and we would talk about getting rid of some of that extra fluid so I would feel better. It was a lot to think about. If we didn't do it, I could go into labor early and there could be other complications. If I did do it I could go into labor and there would be other different complications. But we decided that getting some of the fluid out would give you a better chance of staying in your room a little longer and make me a little more comfortable.
So Friday comes around and our appointment was at 8.30. Well we get there and answer all the normal questions from the nurse and get my blood pressure taken and it turns out the Dr. is delivering another baby! Well daddy and I couldn't argue with that-babies are gonna come when they come. So we went back out into the waiting room where it was much cooler. And we waited. And waited. And waited. The receptionists and nurses felt bad for us and they kept paging and emailing the Dr. but we were okay. It was either wait until he got there at the hospital or wait at home until Tuesday. So we decided it was best to wait there. So he finally came around 11.45 and we talked and we told him we wanted to get the fluid out.
So we went into the ultrasound room and they checked your sweet little heartbeat and where you were and what level the fluid was out. Fortunately you were doing just fine, but the fluid lvl had gone up to 41! So the Dr. decided to take a liter out. He put so numbing stuff on my tummy and stuck in the needle. Who that didn't feel great! Daddy's hand got squeezed real hard! But it wasn't too too bad. They got a liter and measured the fluid again. Back to 39...so we'll see Tuesday if it goes back up. Thankfully it didn't bother you any and your heartbeat was fine and you stayed right where you were. Thank the Lord for that! I had some cramping and Dr. Rao stopped by to check on me but then we left and got lunch. So far I've been feeling better and while you have a little less room to swim you seem to be doing just fine. We love you so much. Our little princess.
Love, Mommy
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