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=)



Erin said...

Again, I am speechless. I am so thankful you are doing this blog. Katie, I miss you!

Dawn Johnson said...

I heard about you and your family early this morning from another blog and wanted to let you know that I'm adding my prayers with the others!