Saturday, May 31, 2008

finding out you were sick


hey precious girl=) i wanted to tell you more about the day we found out about how you’re sick, and what the doctors have told us. our first ultrasound was at 9 in the morning, and the doctor wasn’t at that office. so when the ultrasound tech saw that something wasn’t quite right, she called the doctor at the other hospital, we talked to her on the phone, and she had us come right over so she could look at you. we did that, and as soon as she saw you she explained that you had a congenital diaphragmatic hernia and what that meant. it was very surreal. she was telling us all these things and i just couldn’t quite comprehend at first that she was talking about you, the little person in my belly, and that it was your daddy and me that would be dealing with this, making these decisions, etc. she looked at me halfway through the conversation and said “are you ok? i’m sorry to be telling you this.” i quickly responded “it’s ok” like on autopilot, and she just looked right back and said “no it’s not.” i guess that’s when i realized how big of a deal this was and that there was no getting around the sad reality of it all. one of the first things she said was that this is too much for some couples to handle and termination of the pregnancy was an option, but we knew that wasn’t for us. then she explained the process of what would happen after you were born. she also said she wanted to send us to talk with a pediatric surgeon who would give us a better idea of what they do and what their experience has been with this diagnosis. i didn’t cry until we got back out in the waiting room and had to sit there for a few minutes, and daddy didn’t cry until we were in the car after we left that office. we were talking about the possibility that you wouldn’t live very long after you were born, that it was so sad but we would be ok, and daddy said yes we would be ok but he sure wished you would live. and he started crying then. and of course i can’t handle seeing your daddy cry so i lost it too=) it was the first time that, the way he was handling this situation with you, reminded me of how he was when his mommy was dying of cancer 3 years ago. i can’t wait to tell you about her-she was the best. so we went to longhorn for lunch (that’s mommy’s favorite restaurant and they had just opened a new one in richmond!) and then headed over to mcv for the consult with the pediatric surgeon. it didn’t feel right going to talk to a pediatric surgeon about the child that wasn’t even out of my belly yet. all of this makes me feel homesick in a weird way…not a typical homesick, but just that none of it feels comfortable or familiar-i feel out of place dealing with any of it, so in that way i feel homesick. anyway, talking with the pediatric surgeon helped us get a better picture of what would happen, and what his prediction was for you. he said that typically a baby with a congenital diaphragmatic hernia has about a 60-80% survival rate, but since this was happening so early in my pregnancy that he gave you about a 25% chance of living more than a week or two. this is because your lungs basically will never have a chance to grow with nothing in their way since the stomach was already up there and the heart was already pushed over. so he didn’t tell us any good news, but in a way it was good for him to be honest, but gentle with it at the same time. since then, we’ve also talked to the neonatologist who will be your doctor in the delivery room and as long as you’re in the hospital. he kind of gave us a different picture of what might happen. he said it was more of a question of whether or not you’ll make it out of the delivery room. that if you have enough lung tissue to make it out of the delivery room, there’s no reason you couldn’t live longer than a week or two. but if you don’t have the lung tissue, we’d know it right away and you might not live to even get to the NICU. he said that if you had enough lung tissue we would just do what it took to get you stable and that if you did indeed stay stable, you could have surgery at that point. super complicated-lots of different factors playing into it-the possibility of ECMO (heart/lung bypass for babies) which presents a whole new set of complications like brain bleeds, etc…i don’t like any of it my sweet girl=)

daddy and i handle this differently-i need to be prepared for the absolute worst so i’m trying to expect to only have you for a brief period, and daddy doesn’t want to necessarily deal with the dread of that until he absolutely has to. we have been very understanding of the other’s need to deal with it in our own particular way, no matter how different it is from each other. i’m thankful for that=) have i mentioned that daddy’s getting his PhD in psychology? he’s very smart-you would be so proud of him. anyway-his degree is coming in handy right now=) he’s very patient with mommy and i can’t imagine going through this with anybody else. oh i wish so much you would be able to know him-you would be crazy about him just like a little girl should be about her daddy=) ok so that was the bulk of april 2-after that we came home and packed (we were going to visit your uncle matthew and aunt amy and cousin anna cate the next day in phoenix!) and to take a load over to our new house (we were also moving that week! talk about a crazy week…).

the trip to phoenix was so perfect in its timing. i think God did that on purpose for us=) daddy had a conference out there and was planning on staying at matthew’s house with us just one night, but his first day of the conference was a pretty sad one for him so he decided after he presented that day that he would just stick with us for the rest of the time-I was very thankful for that=) we figured out quickly that this was making us very clingy to each other-i actually noticed i got lonely really quickly and needed to be talking on the phone to somebody if i was by myself, but what i really wanted was to be with your daddy. it was beautiful weather and we got to relax and sleep in and go to bed and wake up with each other and talk a lot about you…i realized there that we were trusting God together more than we ever had before. God was becoming a part of our relationship in a new way for us, which i am very thankful for, but i just wish it didn’t take something like you being sick to get us there=)

we have some wonderful friends that are believing so strongly in a miracle for you, little one. they will call and pray with us and tell us how they’re feeling and what they believe God is doing and what they believe His heart is for situations like ours. these are wonderful people and encouraging conversations we have with them. but at first it made me wonder if i should feel bad for not praying more diligently for a miracle. i quickly realized that guilt had no place in this situation, and that more than anything, i feel God telling me to just hold His hand and walk with Him through this. (i just got so excited thinking about you getting to know Jesus-even if daddy and i don’t get to introduce you to Him, i know that means you will get to meet Him yourself well before us…maybe you’ll get to tell us all about that once we get to heaven!) we know that God can and sometimes does perform miracles, but all our hope is not placed in the possibility of that happening with you. He is so good-He always has been and there’s absolutely no reason to think that will change just because we have been given such a difficult thing to deal with. one of my first thoughts after being told what was going on with you was that God is so much bigger than any of us or any of this and there is a much bigger picture that we can’t see. i’m ok with that. i’ve never been the kind of person that had to know why God did certain things. i just know that He’s bigger and operates on a totally different realm than me and that He is absolutely trustworthy without question. i pray that attitude continues. i also noticed that, in that first ultrasound when they told us what was going on, i felt angry. i couldn’t figure out who i was angry with, and i knew that it wouldn’t do any good, but that’s still how i felt. i thought about how i’d never been angry with God before, no matter what sadness or loss i’d felt, and i realized it wasn’t Him that i was angry with this time either. the anger quickly subsided, but a few weeks ago i was talking with your daddy about how i would occasionally get a glimpse of WHAT IF God did perform a miracle and just completely fix you! that’s an amazing thought, but i found myself very afraid to think that way because of the extreme devastation i’d feel if i got my hopes all up. (i think i’m fooling myself, sweet girl, if i think i won’t be feeling extreme devastation anyway no matter what i expect and we lose you…) but anyway, i was telling your daddy how i was afraid that i would finally get mad at God if i got my hopes up and you still died, and i really didn’t want to deal with being mad at God. he quickly told me that God could handle me, and that He wasn’t at all afraid of me getting mad at Him…that’s one of my favorite things your daddy has ever said to me. but i still don’t want to deal with it=)

sometimes i would think that having a miscarriage would have been “easier”…it makes my heart hurt now when i think about that. we are so thankful that we get to meet you, even if for 5 minutes, and that we get to see what your fingers and toes look like-your daddy wants to see your eyes so bad-and i can’t wait to kiss all over your face. i can’t imagine how strange that day will be…it’s weird to even try to think about. so i’ll stop=)

i love you sweet girl=)


Saturday, May 24, 2008

what the ultrasound showed


hey sweet girl=) you are quiet right now-must be sleeping. do you know how happy it makes me when you flip flop around in there? i sit there and stare at my belly, watching it morph into weird shapes, laughing as you punch my bladder=) you are precious and perfect and i love you so much. your daddy makes me lay certain ways at night so he can get his hands on you too-i feel sorry for him, you know…i always ask him if he’s jealous that i get to carry you around in my belly for 9 months and he doesn’t. he always says no he’s not really jealous, which i guess is the answer i would think is appropriate…it would be weird, huh? if he said he wished he could carry you around in his belly and be pregnant??? i still can’t help but ask-i can’t believe how lucky i feel to have you inside me and i just figure everyone else is jealous=) you have the best daddy though-can you tell that from in there? he can’t wait to meet you. i feel bittersweet as the pregnancy progresses and it gets closer and closer to september 4-i want to keep you in here as long as i can-maybe it’s part of my control issues (your mommy has control issues!)-but i just know you’re safe now and while you’re in there you don’t need those silly lungs which might not be growing like they should. do you know what i’m talking about? i always wonder if you have any idea that something’s wrong inside your sweet little body.

on april 2, at 17 weeks and 6 days pregnant, we got great news! it was a sweet little girl growing inside of me and we would get to buy lots of pink and frilly things! but we also got some very sad news. on the same ultrasound we saw that your heart was on the wrong side of your body, and that your stomach was up in your chest next to your heart. this means you have a congenital diaphragmatic hernia. silly diaphragm not closing like it should…there is a chance more things in your belly could slide up there into your chest, but that’s actually not the biggest problem-that could be fixed with surgery pretty easily once you get out here and meet us. the problem is that your heart is now taking up the right side of your chest and your stomach is taking up the left side of your chest, and your lungs might not ever have a chance to grow without anything in their way. this could cause congestive heart failure and pulmonary hypertension and all kinds of things, but the point is that your lungs might not be able to work at all when you’re out here in the world. we were told that it could be linked to chromosome abnormalities, so they immediately did an amniocentesis-do you know what that is? they stuck a huge needle down into mommy’s belly next to where you are-they watched it on the ultrasound to make sure they weren’t going to poke you-and they took out some amniotic fluid and ran some tests on it. we got to see all your chromosomes! and we also saw that all of them were normal=) that means you don’t have any other syndromes, like down’s syndrome or trisomy 18…nothing like that. good news for sure, but it didn’t really change the prognosis…i guess it was just good to know that, however long your sweet little life is, there won’t be any other problems like that for you. it also means that any little brothers and sisters you have one day don’t have any increased risk for defects or chromosomal abnormalities. i can’t wait to tell them about you-of course i hope they just get to meet you themselves, but just in case you get to go to heaven quickly, we’ve been collecting tons of ultrasound pictures of you (we have an ultrasound every 4 weeks since officially you and i are high risk now), we’ll get some pictures of daddy and me with you in my big belly, and then we’ll make sure we get pictures of you once you come out-however long we get you=)

i love you my sweet girl-


why i'm doing this...

hi friends=)

i have entered the blogging world-something i never thought i'd do in a million years. here's why...on january 3 we got such fun news: we had baby #1 growing in my belly=) we proceeded with the typical first trimester experience-constant nausea, sleepiness beyond belief, being entertained by the unpredictable hormones=) as april 2 approached, we were so excited with anticipation of finding out what we were having...i honestly did have that little mama feeling that it was a girl, but i had no idea how reliable that little feeling was, and being the planner that i am-i just couldn't wait to know for sure. april 2 came and we settled into the ultrasound room and were told that it was indeed a baby girl in there! the excitement of knowing was quickly dampened when they told us they were also seeing a pretty severe birth defect. it's called a congenital diaphragmatic hernia, and there's more to come on what exactly that means...but basically with what we've been told, there's a pretty big chance she won't be able to live very long once she's out of my belly. more to come on why that is as well...

now i get to the reason i'm doing this. i kept debating on how private of a person i was-i always thought of myself as pretty open but it felt strange to think of displaying our deepest thoughts and feelings on the internet as we process what might be one of the most trying times we ever go through. however...we have been blown away by the amount of love and support expressed to us since april 2. there are so many people praying for us and i finally came to the conclusion that this is a great way to keep people posted on how we're doing, where we are emotionally with all of this, and what specifically people can be praying for. it has been overwhelming in the most wonderful way to receive so many letters and emails and phone calls, showing us how the body of christ is joining together with us GLOBALLY (thanks shelly) to carry us through this time of preparing to potentially lose our daughter just as soon as we see her. so, with all that said, please read on if you care to-we appreciate you so much walking with us during this time, and we can't thank you enough=)

we love you all...

katie and donnie