False Alarm

It has now been determined that Camille does not need to have an Upper GI Series! She apparently had a similar test in the NICU, and so our pediatrician's partner thinks that would have probably caught anything he would have been looking for in the Upper GI test. Camille has had a VERY hard day--she has been writhing, arching, and screaming in pain all day and has only been able to sleep for about 30 minutes all day. We can hear her reflux rattling around in her throat and chest, and you can hear her stomach churning across the room, so we know she is in pain! Our pediatrician's partner gave us some new things to try tonight, and so far, so good. Camille is asleep for the first time today on our bed. I'm sitting here right beside her watching The Bachelorette finale. I was hoping to corrupt her with this guilty pleasure early, but she was apparently not interested at all, and zonked out. Her Daddy would be so proud, as he absolutely hates that show! I must admit that a big reason that I watch it is to see how many eye rolls I can get out of him during the two hours it's on. His comments under his breath are pretty funny too. Anyway, keep praying for us. Pray that Camille feels better and that she will continue to grow and develop well! You can pray specifically that she will start smiling soon. I am kind of worried that she hasn't really smiled yet--a couple of maybes, and "Was that one? I think it was!"--but maybe once she starts feeling better, she's give us some definitelys!

Another Test

We just found out that Camille is going to have an upper GI series done sometime this week. Our pediatrician is out of town for the week (think I could manage to track him down on his cruise? :) but his partner is concerned about the severity of Camille's reflux (what we think is causing all of the groaning, grunting, arching, fussing, etc.). She has been taking Prevacid since her days in the NICU, and he doesn't want to re-fill her prescription until we find out if what is going on is more serious than reflux.

So please pray for this test, for Camille's pain level (especially since we are apparently stopping the Prevacid until further notice), and for a tired, worried, weary-of-more-tests Mama and Daddy. Ugh..I am just terrified that they will find something else wrong.

Thanks for listening to me in my somewhat discouraged (okay, a lot more discouraged than I have been even writing here) state these past few days. I'll post updates when I know more.

One of those days

Quick Camille Update first, since I've spent the past few posts blabbing about all of my feelings lately, and plan to do that again on this post. :) Camille is still gaining well. She is now up to 5 pounds 7 ounces. Three more ounces, and she will be 2 pounds more than her birth weight! We are hoping she will be at least 6 pounds by the time we go to her 2 month check-up on August 4. Technically, she will only be 1 month old at her 2 month check-up, which I keep feeling the need to remind myself and everyone else so that it won't sound so bad that she will likely only be 6 pounds then. She continues to eat well most days. I have figured out that if she isn't hungry and doesn't want to eat, it doesn't do any good to try to push her to do so. She has learned to push the bottle out of her mouth, and spit out the milk if she doesn't want it. But if she is hungry, she will gulp the whole thing right down within minutes. It seriously makes me wonder if we spent 3 unnecessary weeks in the NICU because we "couldn't get her to eat", when really, she can eat great when she wants to. Girl just hates a schedule is all. She wants to eat when she wants to eat, and don't we all? She is still struggling with gas/colic/reflux? in the evenings, and sometimes she just grunts and groans all night long like she is in pain. Not sure exactly what that is, but it will be on the list of the gazillion questions I have for our pediatrician at her 2 month appointment. I feel like our pedi is wishing like crazy that this nutty, worrier of a mama never found him. I picture us having the What About Bob? sort of doctor/patient relationship. :)

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Camille enjoyed her first trip up to visit the family in Fort Worth/Arlington yesterday! She hates her car seat, and the car, and so she screamed the entire 1 hour 45 minute drive up there, which was super pleasant for mom, dad and big brother. Henry has been so adorable about Camille ever since she came home. He wants to love on her, and help take care of her, and he is always so concerned about where she is and what she is doing. He says things like, "It's okay, Camille. Don't cry, Camille" when she is crying, and every time he walks into a room with her in it, he says, "Hi Camille!" like it is the most exciting thing in the world to see her, even if he just saw her in a different room 5 minutes before. And he sings to her too! Now, if you have never witnessed a 2 year old little boy singing to his baby sister, you are missing out on one of the most precious things there is. I will try to post a video at some point.

Now, all this to say, I told Jason toward the end of the drive up to DFW yesterday that I thought the "bloom was off the rose" for Henry in regard to Camille. He was looking at her like she was from outer space as she screamed her little head off the.entire.way.there! I was afraid he was going to hurl one of his toys at her! What he doesn't recall, however, is that he did the exact same thing on a lot of our drives to the metroplex when he was a baby. How in the world did I get 2 babies who don't like the car and who won't take a paci? So far, I have not gotten my easy, low-maintenance baby. That was what Camille was supposed to be since Henry was a tad high-maintenance. But she managed to beat him out ten-fold! Truly proof that life is not fair, but I wouldn't trade the cuties I have. Well, except maybe on long car rides.

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Today has been one of those days for me. One of those days where I have let the "What If's" and the "Why Me's" overtake me. One of those days where I have wondered and worried and speculated and questioned. One of those days where I have felt overwhelmed with the possibilities. One of those days where I have thought over and over again, "I.can't.do.this! I can't, I can't, I can't." And so tonight, I ask that in addition to praying for Camille, pray for me. Pray simply for peace.

I was reminded by a friend on Facebook the other day (I am unashamedly addicted to FB) of a passage that has always brought me peace in the past. She sent The Message translation, which is now my favorite version of this scripture.

But now, God's Message, the God who made you in the first place, Jacob,
the One who got you started, Israel:
"Don't be afraid, I've redeemed you.
I've called your name. You're mine.
When you're in over your head, I'll be there with you.
When you're in rough waters, you will not go down.
When you're between a rock and a hard place,
it won't be a dead end—
Because I am God, your personal God,
The Holy of Israel, your Savior.

God is faithful. He has not left me. There is no need to be afraid.

Peace to you all.

Hope

Jason and I read an article today about people who are now "un-doing" their baptisms by holding a "de-baptism" ceremony. No seriously. I'm not joking. It gets better. The ceremony consists of a "priest" using a hair dryer to dry the person being "de-baptized", and then this person receives a certificate stating that he/she is officially "un-baptized". Again, not joking. You can read the article on Baptist Today if you want. Apparently, some people who are now atheists were baptized at some point when they were younger, and now want to totally undo that. They are even sending their "de-baptism" certificates to their former churches, and asking to be completely removed from the "baptized list". This "de-baptism" movement is apparently really picking up speed--it's becoming quite popular on high school and college campuses. Wow.

I truly do not feel judgement, mockery, or disdain for those who are "de-baptizing". I'm sure some Christians might feel those things towards those who are doing this--I honestly just feel overwhelmed with sadness for them. I cannot imagine going through these past 2 months without my faith in Christ. I have said to Jason over and over, "What do people who are not believers do when they are confronted with these sorts of circumstances?" I honestly don't know the answer to that question.

I told a friend the other day that I realized several days after Camille was born that nothing could "fix" this situation. Most situations are fixable. But I think part of my despair in this situation is that I could do nothing; Jason could do nothing; my parents could do nothing; the doctors could do nothing to "fix" this. There wasn't enough money in the world that would "fix" this. There wasn't some VIP who I could call up who could "fix" this. The only One who could "fix" this situation was God.

I don't say that flippantly. I do completely and totally hold out hope that God can and will completely "fix" this situation the way I so desperately want it to be fixed, and give us the miracle we are praying for everyday. And I am going to continue to hope for that because I know that my God is a healer, and He works miracles everyday. I truly do believe that. And I ask that those of you who are reading this will continue to hope for that as well. But even if God does not "fix" this situation in that way, I know He will redeem it. In the end, it will be good.

We have seen this already in our lives recently. As most of you know, Jason has been applying for a full-time academic teaching job at various universities for the past 2 years. He has gotten close to being hired for several positions, but in the end, none have worked out for various reasons. We have often really questioned God in this, and wondered why all of these doors were closing. Actually, we often felt like the doors were getting slammed in our faces. But, we also held onto our faith that God had not failed us; He had not left us; He had not forgotten about us. Some days we had to convince ourselves of that a little more than others. But it was certainly true. This past week, Jason was hired to be the Associate Director of the Institute for Faith and Learning at Baylor. This position is such a great fit in many ways. It is a nice combination of the things that Jason is interested in and good at--administration, academics, ministry. It also allows us to stay in Waco for a while so that we can remain in our house that we love, and more importantly, remain close to our families.

Looking back, we now see that God was simply saying, "Not yet" on those other positions. None of those were right; He had something better planned. And I know He is saying the same thing in this situation. I picture Him saying, "Wait. In the end, there will be something better than you could have ever imagined. And it will be good. In fact, it will be perfect."

Photo Shoot

Here are some pictures of our peanut striking a pose. The last one is my favorite! Isn't she beautiful?! I'll do a post tomorrow, but for tonight, I just had to share these pictures! Thanks for praying!

From the Beginning, Part II

I am so sorry that I have not posted in so long. I promise I am not regressing to my former blogging ways where I would let months go by in between posts. I have just had a hard week. Even with all my big talk about trying not to worry about the future and what is to come with Camille, I sure have been doing just that this week. And let me tell you, I am more and more starting to believe that the Internet is evil, especially for parents. I feel like the first year med school student who reads about all of these diseases and thinks that she has every one. I keep finding all of these "syndromes" on the Internet with all of these vague "symptoms", and then I find myself scrutinizing my sweet child and thinking, "She does have prominent eyebrows. Could she have that?" (Oh yes! There are syndromes that have things like long eyelashes as a symptom!) Geez, it's become quite ridiculous--any of us could have half of these syndromes based on the symptoms listed, for crying out loud! I decided last night, after a breakdown in which all of my talk of faith, hope and trust went flying right out the window, that I was imposing a ban on the Internet for myself. And if I hadn't done that myself, Jason sure would have. Then, I spent a long time praying last night, and felt much better this morning. I enjoyed a very special day with both of my precious kiddos, Jason, and my parents, celebrating my birthday. After two of the most horrific months of my life, I actually had one of the best birthdays I can remember. Having my adorable almost-2-year-old come bursting into my bedroom this morning, gleefully shouting, "Happy Birthday, Mama!" was the best gift I have ever received. I am blessed for sure.

We actually had great news on Friday, and so I'm not sure the reason for the little funk I have been in the past few days. The great news was that Camille had gained 8 ounces in a week, and was up to 4 pounds 14 ounces on Friday. Even better was that she reached the 5 pound mark today, on my birthday! God is good! Our pediatrician said on Friday that whatever we were doing, keep doing it! And so we are continuing to feed, feed, feed our little peanut, and she continues to gulp down most of her bottles. She is now drinking 2 ounces at a time most times, which is what most babies her age are doing!

I am really trying not to be psycho about measuring Camille's head, but it's really hard not to want to measure it everyday, several times a day. Crazy, I know. But, it does appear that her head is growing, which is a good sign. PLEASE continue to pray that Camille's head and body grow and grow!

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Continuing on about my pregnancy and delivery... I know you have been waiting on pins and needles. Sorry for the delay in finishing the story. :)

I ended up going in to see my OB on Monday, June 1 for a regular appointment that I had moved up after my 3D/4D ultrasound where it had appeared as though I had low amniotic fluid levels. My doctor again said that everything looked great, but then I asked him about the possibility of me having low fluid. He said that he doubted that was the case, but would do a quick ultrasound to check anyway. As he started the ultrasound, he and the nurse and I were laughing and joking, and then all of the sudden, he got very quiet. Eventually, he said that it did appear that I had low fluid, although not too dangerously low. Even so, he wanted me to go over the hospital right then to have them monitor the baby for an hour to make sure she was not in stress. Then, he wanted me to come back the next day for a more extensive ultrasound by the ultrasound tech.

I left and called Jason in the car, quite hysterical. He met me over at the hospital, and they hooked the baby up to the monitors. After an hour, they told me I could go home because the baby looked and sounded "wonderful".

My mom came down to watch Henry the next morning, June 2nd, so that Jason and I could go have the ultrasound done. Jason was actually going to go to work, and I was going to go have the ultrasound done by myself because we were really not too worried anymore since everything had looked so great the night before at the hospital. So Jason went to work, but ended up turning around and coming back to go with me, just in case. He just had been driving and had a feeling he should go back and be with me, and I was so glad he did.

The ultrasound tech did the ultrasound and found that either my doctor had mis-measured the night before, or my fluid levels had significantly decreased since the night before, because they were now at a dangerously low level. She also thought the baby was on the small side--she measured 4 pounds, 4 ounces on the ultrasound. My doctor was off that day, and so she went and got another doctor. He came in and told me that I would have to have the baby that day. I was so upset and started crying immediately. He was very, very kind and very sensitive. He reassured me that this was not my fault that this happened, which I had been near hysterical that it was. I kept saying, "But I drink tons of water!" He told me that it was nothing I could have done, and that more than likely the placenta just gave out. (As an aside, I had a follow-up with my regular OB this past week, and I asked him his take on all of this. He agreed with the OB who delivered Camille and our pediatrician that it was likely a bad placenta. Actually, his exact words were, and I quote, "You just had a crappy placenta that crapped out on you." He was very positive about Camille, and thought she would catch up in growth and be just great. I am trying to hold onto his positive outlook, when I feel like everyone else has not been as positive.) Anyway, this OB also said that more than likely, the baby would be just fine since she was 35 weeks. He thought that since she would not be that premature, her lungs would be fine, and she would get to go home with me from the hospital. He told me that he would come over to do the c-section, which I was so grateful for since he had been so great. I felt a little better after his reassurance, and we headed over to the hospital.

I was really, really nervous in the hours before my c-section. One, I did not have a good c-section experience the first time around, so I was obviously nervous about that. But more than that, I was so nervous that something would be wrong with Camille. I just thought that 4 pounds 4 ounces sounded SO small! All of the nurses prepping me for my c-section again commented on how small my belly was. I kept thinking, "If I had a dollar for everytime someone told me that exact thing this pregnancy..."

The c-section actually went really smoothly this time around. I guess it helps to have not been in labor for almost 24 hours before you have one! Anyway, it took them a while to tell us how much Camille weighed after they pulled her out. I remember that I kept asking Jason over and over if we knew her weight yet. When they finally said, "3 pounds, 10 ounces", my heart sunk. I just knew at that point that things were concerning.

They let me see Camille for one second before they took her to the nursery for observation. I didn't get to hold her or even touch her. Little did I know that I wouldn't get to hold her until 5 days later--wow. They moved me to the recovery room, and I kept asking when I would get to see Camille. The nurses were great--they kept reassuring me that she just needed a little help breathing, which was completely normal for a preterm baby, and she would probably be with me by that night.

The hours kept passing by. They moved me to a post-pardom room, and my mom came in to be with me. Finally, Jason called down to the nursery to see what Camille's status was. Our pediatrician was there examining her and he said he would be down in a few minutes to give us a full report.

I will never forget those moments when our pediatrician finally did make it down to talk to us. He was very blunt and straight forward. He said that he had made the call to have Camille flown by helicopter to the NICU at Scott & White. He said that she was just having too much trouble breathing. I asked him if the breathing was the only problem. That was when he told me that not only was she very small for her gestational age, she also had a small head. I asked him what that meant, if that was something to worry about. He said that it was concerning, but that it was too early to be too worried about it. He gave me this whole spiel about how people have small heads all the time, and that small head does not mean small intelligence. I, of course, was still worried, but I was so overwhelmed with everything else that I tried to put that worry aside and focus on the immediate concerns. At that point, I thought that we would just be in the NICU for a few days. I guess it is a good thing that I had no clue that she would be there 4 long weeks.

The helicopter eventually arrived that night, and they wheeled Camille down to see me before loading her on. I saw her from across the room, hooked up to what seemed like hundreds of wires and tubes, enclosed in a giant incubator. She looked so small and so helpless. Jason went down to watch them load her on the helicopter, and I just remember sitting in my hospital bed feeling so overwhelmed with sadness and worry. I knew I wanted to get down to Temple to be with Camille as soon as possible, and so the next day, I begged the OB who delivered Camille, when he came to check on me, to discharge me so that I could go be with her. He agreed to, and so I was discharged less than 24 hours after my c-section. As the transport tech wheeled me out in the wheelchair, I remember thinking that there could be no worse feeling in the world than leaving the hospital after giving birth without a baby.

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More later on the whole NICU experience. I've got a couple of crazy stories about that. Well, okay, more than a couple, but I'll try to keep the rambling to a minimum.

As another aside, I stopped my OB on his way out the door at my follow-up appointment this past week. We had talked about a lot of things, and he was so very sweet to reassure me about Camille, but I wanted to thank him specifically for not blowing me off when I had asked him about having low fluid levels. He then told me that he was very glad that we had gone ahead and checked because he thought we likely saved Camille's life. Now that's putting things into perspective. Camille may have difficulties in the future, but she is alive. For that, I am so thankful.

Please keep praying for Camille!

From the Beginning

I am so happy to provide this update on Camille: she is eating great and has decided to stop screaming in the evenings! God does answer prayers! I finally decided on Saturday that I was ditching the NICU feeding schedule--feeds every 3 hours, no more, no less--and was going with my gut. When Henry was a newborn, every time he would cry, I would try to nurse him first to see if he was hungry. If he was, he would eat and be content--if he wasn't, he would continue to fuss and I would try to figure out what else was wrong. With Camille, the NICU staff forbade any deviation from the strict "eat every 3 hours schedule" and so when we went home, I was afraid to deviate from that as well. On Saturday, however, I decided that the hospital's way obviously wasn't working too well for my baby, so I was going with my instinct and try to feed Camille based on her cues, not a schedule. Well, it worked like a charm, and she is much more content doing the "eat on demand" thing rather than the feeding schedule. It makes me feel terrible that we didn't try that sooner! She is eating way more than she did before--most of the time draining a 50 cc bottle, when we could barely get her to do a 40 cc in the past! Henry was always a difficult baby to "schedule", and I guess his baby sister is too. This just also makes me laugh to think that this is one more thing that our baby girl has decided to defy everyone on.

Camille enjoyed several fun visits from family members and friends this past weekend. On Friday, she got to see her Pops (Danny), her Granny (Jason's grandmom) and her Aunt Teresa (Jason's aunt). Then, on Saturday, she got to see her Uncle Brian, Aunt Sarah and buddy Luke (our very good friends who are more like family). Then, on Sunday, she got to see her Mopsy (my grandmom), Aunt Missy (my aunt) and Aunt Jena (my aunt). And of course, they all thought she was unbelievably adorable. :) She was very alert during all of the visits and enjoyed all of the holding. I finally got my baby who wants to be held! Lady hates being held, even though I got her to be my lap dog. Henry never liked being held much even as a baby, and certainly doesn't like it now--he's way too busy for that kind of stuff! I have to tackle him to get to hug and kiss him, which he thinks is a super fun game. But my Camille loves to be held, and will let you know when she is put down too prematurely for her taste!

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Several of you have asked to hear Camille's story from the very beginning, and so I have decided to dedicate several posts to that. I guess to really tell the full story on Camille, I have to start at the very beginning, the weekend I found out I was pregnant in October 2008. As some of you know, that weekend was crazy. I had taken a pregnancy test on Saturday morning, and thought that it was a positive result, but I also thought I could have just been seeing things, so I decided to wait to tell Jason until I could take another one. Then, later that day, Henry accidentally burned his hands while with my parents and Jason at my grandfather's house that was currently being remodeled. We were all frazzled from that experience--the trip to the emergency room, bandaged hands, etc.--but I just had to know if I was in fact pregnant. So on Sunday, I took another pregnancy test, and it was for sure positive. I told Jason, who I thought was going to faint, and we were a bit surprised, but very excited.

I had a pretty difficult pregnancy this time around. With Henry, I was hardly nauseated at all. With Camille, I was nauseated almost every day, and so very tired all the time. The exhaustion might have had more to do with a certain wild-man toddler more so than the pregnancy, but we'll blame the pregnancy instead. Then, also as most of you know, we had a terrible tragedy in January when my sweet mother-in-law, Sharon, passed away after a long, courageous battle with Ovarian Cancer. We had really, really hoped that Sharon would get to see the birth of this baby, and we were heartbroken that this baby would never get to meet his/her special Gigi. Two weeks after Sharon's passing, we found out we were having a girl. We were so excited--I had really thought it was another boy for some reason. We decided to name her Camille Lynne. Camille is a name Jason and I have both always loved, and Lynne is Sharon's middle name. I had so much fun getting ready for a girl! I have yet to lay eyes on a baby girl outfit that is not cute, and have really had to work hard not to buy every baby girl article of clothing that I see. We had fun painting Camille's room purple, and putting up a fun purple butterfly border to match.

The only thing that made me really nervous during my pregnancy is that I did not feel like my belly was ever "big enough". Nearly everyone I talked to during my pregnancy commented on how I did not look like I was as far along as I was. Plus, I had been much bigger with Henry. I really worked hard to dismiss this and not worry about it, though, because I had worried about everything under the sun with Henry, and was determined not to do that with this pregnancy. I did ask my OB about this several times at my prenatal appointments, and he said that things looked good. I was measuring on track; gaining weight steadily; and the baby was moving around well. There was not any indication that anything was wrong.

When I got to my third trimester, I decided that I wanted to have a 3D/4D ultrasound done at one of those places that does them purely to give you pictures of what your baby looks like in the womb. I had a good coupon, so I decided to go for it. I didn't tell Jason because I knew he would roll his eyes at me and tease me about spending money on such a frivolous thing. But, I knew this would be our last baby, and I thought it would be a fun thing that we were glad that I did later. Boy were we ever! The lady conducting the ultrasound spent a long time trying to get pictures of Camille, but was unable to, one because she was Frank Breech (with her legs up over her face) and two because I had such low amniotic fluid levels. I asked the ultrasound tech if the low fluid levels were something that I should be concerned about. She replied, "I'm not allowed to say anything 'medical' but if I were you, I would ask my doctor about that." The look on her face said everything, even if she herself could not. I rushed out and called my doctor right away.


I spoke with my OB's nurse, and told her what happened. She said that it was impossible to tell if I really did have low fluid levels if the levels weren't measured on the ultrasound, which they weren't. She assured me that everything was probably fine since I wasn't leaking fluid and since my measurements were on-track. I still felt uneasy, though, so I asked to reschedule my next appointment for an earlier date. This was Thursday; I was now set to come in on Monday.

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More later on my pregnancy/delivery later, but I will leave you with these adorable pictures that we took of Camille and our "firstborn" today. Can you believe how giant an 8 1/2 pound Yorkie looks next to her? I love the last one in the series! They had both had about enough of the photo shoot! Thank you for your continued prayers! Please don't forget about us, and keep praying for a miracle for Camille!

Quick Update

Just a quick update to let you know that Camille gained 3 ounces this week, which as our pedi said, isn't good but isn't terrible either. She should have gained more like 7 to 8 ounces, but we were glad she at least gained some. He agreed that it is probably the colic that is causing some trouble with the eating and the weight gain, considering she is burning so many calories that she can't afford to burn with all of her fussing (well, okay, wailing and screaming). He said that it sounded like about as classic a case of colic as you can get, considering that it starts at the same time each night. Great. Anyway, he wants to give her another week since she did gain some, although not as much as we had hoped. So, we will give it our all with the feeding again this week, and see where she is next week. He did mention for the first time a g-tube if she does not start gaining more, which would require surgery, which makes this mommy very nervous. He acted like a g-tube would not be a big deal--it would just help pump some extra calories into her and then it would likely come out when she was 4-5 months old, once she had gained well and was big enough/ old enough to where eating wasn't such hard work for her. It sounds like we will look more into that option after next week depending on how she does. He is also still considering running more tests, but hasn't received our discharge summary from the NICU yet, and so wants to hold off on tests until he can see exactly the ones they ran so that there won't be any repeats. So, for now, we wait. More of that waiting thing that I am so terrible at. But I'm trying. And, I am enjoying my adorable little girl; my precious, precocious, chatter-box of a little boy; my funny and positive husband; and my God who is good. Pray for lots of eating, lots of gaining, lots of non-colicky evenings, and lots of sleep (just thought I would throw that last one out there as another one of those miracles you are praying for!).

The Unknown

Thanks again for all of your amazing support. Jason and I don't know what we would do without the help and support from so many family members, friends, and church family. We have just been overwhelmed with all of the love, thoughtfulness and generosity, and are truly grateful. I have been trying to find some good in this whole difficult experience, and one of the biggest "good" things I have found is that I have been made fully aware of how blessed we are to have the friends and family that we do. We met a family while in the NICU who had a baby born the same day as Camille who was also in the NICU. This family had 7 other young children, though, and no family or close friends to help them out. Plus, they were from out of town, and so they couldn't go back and forth from the hospital to their home like we could. They would just have to sit in the waiting room with their 7 sweet, VERY well-behaved children ALL DAY LONG. Can you imagine?! Our hearts just went out to them!

I know I am risking getting mushy here, but I just have to thank a few people specifically. First, my Mom and Dad have been truly amazing. Jason and I have often talked about how lucky we were to have such wonderful childhoods with such wonderful parents, and how we want to provide that same sort of childhood for Henry and now Camille. My parents have truly gone above and beyond during this time. They have given up so much--essentially dropped everything--including an already paid-for trip to Las Vegas (sorry guys!)--to help us out. They have driven back and forth from Fort Worth to Waco countless times; kept Henry for us and taken him to do so many fun things to keep his spirits up; bought us meals; stocked our refrigerator; and most of all, encouraged us, loved on us, and made us feel better when we were so down. Not only that, but they have done all of this even though I know they are tired, worried, and worn down just as we are, and they have not ever complained or said they could not help with something. Instead, they have just continually asked what more they could do. Wow, I am truly blessed. Thank you, Mom and Dad, for everything. That sounds so trite, but everything is what you have given us, especially these past few weeks.

And I can't leave out my fabulous father-in-law, either. Danny has done the same--he has helped us out in so many countless, invaluable ways. He has made that trek on I-35 a ton of times these past few weeks to come visit us, hang out with Henry, spoil Henry, spoil Henry some more :), help us sort through and make sense of the already mountainous pile of EOBs from our insurance and bills; and so much more. Again, how blessed are we? At the ending of one of my favorite books, a mother has just been reunited with her daughter after thinking she was dead for many years, and she says simply, "My cup overflows." That is the last line of the book, and completely how we feel thinking about our parents.

I have to also mention two friends whose expertise, knowledge, and encouragement has truly been such a gift during this ordeal. Kevin, we have already told you a hundred times, but we don't know what we would have done if we had not been able to call you and ask questions, get clarification, get positive encouragement from such an awesome medical professional as yourself. Kristen, I know you have said that you have felt like you have not done anything for us, but you could not be more wrong. Being able to ask you questions and get encouragement from you as a Speech Pathologist on Camille's eating has been a true God-send. Kevin and Kristen, both of you have found your callings in what you do--that is so very evident to us, and we are so glad you did because we definitely took full advantage of your expertise during this time!

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Camille has done well today. She has been eating okay, better at some times than at others. We have discovered that she eats better during the day than she does at night, which is likely due to the fact that she has got a wonderful, enjoyable, fantastic case of true, classic colic going on right now! Oh yes. As if we did not have enough to deal with, Camille is letting us have it in the evenings. Jason literally looked up at the sky the other night, as Camille was screaming her head off, and said, "Really, God? Really? All this, and we get to deal with colic too?" I just burst out laughing and we laughed until we cried about that. Little stinker will be fine all day--hardly any fussing at all--and then, she turns into a little screamer, albeit a very cute screamer, about 5:00 p.m. She will fuss all. night. long. until about 6:00 a.m. when she will return to her happy, content state until 5:00 p.m. rolls around the next time. She screams as if she is in an immense amount of pain, and we can hear her tummy grumbling and rumbling, but so far, we have not found anything to help with that. I would love to hear suggestions if you have any. So, instead, we just take turns loving on her, walking her around, rocking her, and anything else we can think of to help keep her as comfortable as possible. And that's okay considering we still have a month's worth of holding that we are trying to make up for!

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I think in all of this, I am starting to realize that possibly the hardest part now, most especially for a worrier like me, is that there is still so much that is unknown. I am the type of person who likes to KNOW, and wants to know it NOW. I can't stand waiting to know something. And I absolutely hate surprises, even good surprises. Jason has to go to great lengths to hide my birthday and Christmas gifts because I can't stand staring at a box and not knowing what's inside. It drives me nuts. Now, I am facing the ultimate unknown situation. If there has been one thing that has been consistent about what the doctors have told us about Camille, it is that they simply do not know how she will do. We just have to "wait and see." I hate those words. I hate waiting, I hate wondering, I hate not knowing. But I think that's the way we have to live as followers of Christ. In a devotional that a wise friend sent me recently, there was a quote from My Utmost for His Highest that read: "You have no business to find out where God is leading, the only thing God will explain to you is Himself." As much as I would like to, I don't get to know what God has in store for Camille and for our family. But what I do know--what I do hang onto--is that God is good, and therefore, our future in Him will be also. So I will continue to hold onto that when so much in our lives is uncertain right now. I will try to accept that I cannot know what the future holds for Camille, but that ultimately, it will be good. And while I wait to discover what is in store for us, I will simply try to enjoy the now. I will never have these moments back with Camille. Jason and I feel like we were robbed of so much of the joy surrounding Camille's birth, and I am filled with so much regret about that. I can't get that back--nor can I get back Henry's babyhood either. But I can enjoy every moment of both Henry and Camille now, where we are now, not looking at the future and wondering what it holds, but simply enjoying the blessings of each day.

His Grace Is Sufficient

First, thank you all for very kind messages. I know that there are so many people praying their hearts out for us, which is such a comfort. Camille is doing okay--not great, but not terrible either. Her eating has steadily gotten worse over the past few days. Yesterday, Jason and I could barely get her to eat the minimum of what she needs to eat to remain hydrated, but she is eating better so far this morning. Of even more concern is that Camille is still not gaining weight at the rate that she needs to be. Typically, babies her age gain an ounce to an ounce and a half a day. Camille is on a very high calorie formula, eating a very high volume for her weight (when we can get her to), and she is still gaining far less than an ounce a day. Even when she was in the hospital and tube-fed the high calorie formula at the high volume for her weight, she still did not gain even close to an ounce a day. We have to go into our pediatrician's office for a weight check on Friday, and if she has not gained weight sufficiently by then, then we have to start running more tests. I'm not sure what type of tests these will be--I think for metabolic disorders and other disorders that would cause her to have trouble gaining weight--but I'm not sure. So, that's the prayer request of the day. Please pray that Camille will start eating well again and begin to gain weight at the necessary rate. And, of course, please also continue to pray for a miracle for her--that she will be affected as little as possible, or heck, not at all (!!!) by her growth restriction/small head.

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In addition to your very kind messages, other things have brought me great comfort these past few days. One was a card that I received from some very dear friends (they also sent an adorable gift too--thank you Gartner ladies!). As Jason and I read this card, we were struck with how much it applied to us and our situation. It read:

Your daughter is not here by chance,
but by God's choosing.
His hand formed her
and made her the person that she is.
He compares her to no one else-
she is one of a kind.
She will lack nothing
that His grace can't give her.
He has allowed her to be here
at this time in history
to fulfill His special purpose
for this generation.
-Roy Lessin

I think we are going to frame this card and hang it in Camille's room to remind us that God does have a special purpose for her life and for ours, and that He has formed her for that purpose.

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One of my mom's good friends sent her a poem that really resonated with me.

My Father's way may twist and turn,
My heart may throb and ache,
But in my soul I'm glad to know,
He maketh no mistake.
My cherished plans may go astray,
My hopes may fade away,
But I'll trust my Lord to lead
For He doth know the way.
Tho' night be dark, and it may seem
That day will never break,
I'll pin my faith, my all in Him,
He maketh no mistake.
There's so much now I cannot see,
My eyesight's far too dim;
But come what may,
I'll simply trust
And leave it all to Him.
For by and by the mist will lift
And plain it all He'll make,
Through all the way, tho' dark to me
He made not one mistake.

I know that God has not made one mistake with our lives either. Jason told me a few weeks ago that as we look into our future right now, with all of the uncertainty regarding Camille, it may seem bleak. But, he said, that he believes that when we are old, looking back on our lives, we will not see any bleakness, but only goodness. We will see the perfect plan that has unfolded for our lives, and the blessings that God has heaped upon us from Camille and her life. As this poem says, the mist will have lifted, and it will be plain the goodness God has brought to our lives. I find true comfort in that thought.

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Finally, I wrote yesterday of the darkness that I was in the days following our pediatrician's visit, and how Jason spoke such words of truth and hope to me to help bring me up. I want to share another part of our conversation that I really see as the turning point for me in my view on this situation. (As an aside, I don't want it to sound like I am over my sadness--that I don't still despair in this situation. Believe me, I still have very low moments, and probably will continue to for a long, long time. So please continue to pray for me that I will be able to conquer those moments and remain hopeful. I think the following story/scripture will help me do that. It has so far.).

Jason had been to church on Sunday with his dad and Henry, while I had stayed home with Camille. It was after church that I told him how I felt like I was at the lowest moment of my life--how I didn't think I could go on. He told me about the Welcome that had been given at our church that morning by a church member who had just been through her worst nightmare. Her husband had been very ill and it seemed like he was not going to make it. She talked about how she thought her life was over; how she had lost all hope. Some church members took her to a prayer service, where she was prayed over by our church. Our pastor, Eric's, prayer in particular resonated with her, as it did with me as Jason told me about it. Eric had prayed words from 2 Corinthians where Paul had asked God three times to remove a thorn from his flesh, and God responded, "My grace is sufficient for you." Eric repeated that over and over that night at the prayer meeting, and since Jason told me of this, I have repeated it over and over to myself as well. Truly no matter what comes, God's grace is sufficient.

Our Gift

Some of you know that I have had several blogs in the past that I have deleted, mainly because I have found them to say nothing too significant. I now have something significant to say, although in some ways, I wish I was back to rambling about nothing important on my former blogs.

Our precious baby girl, Camille Lynne, was born on June 2, 2009. She was born 4 1/2 weeks early because I had low amniotic fluid levels (more about my pregnancy and delivery on another post). She weighed only 3 pounds, 10 ounces, which was very, very small for her gestational age. Because she had difficulty breathing at birth, she was flown by helicopter to the NICU at Scott & White Hospital in Temple, where she stayed for exactly 4 weeks, first for breathing issues, and then for feeding issues.

At first, I thought the only problem was that Camille was having difficulty breathing and was small. However, the doctors at Scott & White were most concerned that not only was Camille's body small, her head was small as well. Generally, babies who are growth restricted in utero (like Camille was) are still born with large heads because the head is usually spared from the growth restriction. Typically, the baby's length is the first to be affected, then the weight, and then the head. Camille was the opposite: she was long in length, but with a very low body weight and a small head. This obviously was a huge blow to us to think about something being wrong with Camille's head and therefore brain, but I just kept hoping that was how she was made--with a little body and a little head. Henry was always proportioned that way, although on a much larger scale. He is slightly above average in length, while his weight and head are slightly below average. And he is the healthiest, smartest, most creative, amazing little boy I know. In addition, the NICU staff ran test after test after test on Camille, all of which came back negative for abnormalities (more on the rollercoaster ride of tests too on a later post). Of course, I was still very worried. I made the terrible mistake of googling babies born with small heads, and almost threw up at what I read. But, I just kept hoping and praying desperately that the NICU docs were too focused on abnormality and finding what was "wrong" with Camille when it could be nothing.

However, when we got home, we had a follow-up with our pediatrician. Normally, our pediatrician is very laid back and laughs at me when I bring Henry in for random minor things that I think are major catastrophes. He is essentially the perfect pediatrician for our family because he never gets all worked up about things, and remains calm and reassuring, which is exactly what I need, as I am the complete opposite, especially when it comes to my children's health. I went to this follow-up visit fully intending for our pediatrician to say "Oh, her head is small, but that's nothing. She'll be fine. Don't worry." I thought we would laugh together about how ridiculous the NICU doctors were for thinking that this was such a big deal and for overreacting about something that was nothing. I, however, was wrong. Our pediatrician, like the NICU doctors, is also concerned about Camille's head size. His was non-committal on her prognosis--he did not doom her to a life of severe mental deficiency, but he didn't say that for sure would not happen as well. He basically said what the NICU doctors had told us, but that we had refused to accept. Camille's small head size indicates that it is likely that her brain growth was restricted, and therefore, it is likely that she will have some mental deficiency in the future. This could range from minor developmental delays and learning difficulties, to severe mental retardation. There is no way to tell at this time how severely she will be affected.

Her prognosis also depends somewhat on what caused this. Usually, a small head is due to some sort of maternal infection in pregnancy, but the NICU doctors had tested Camille for all of the typical infections, and the results were negative. Camille had undergone chromosomal testing as well to see if that could be the cause, but the end results on those were negative as well (the chromosome testing is a whole other story in and of itself, but I'll tell that on a later post too). With those two things ruled out, then it appears that the cause is either severe growth restriction due to a placental problem, or some sort of genetic abnormality (there are thousands of genetic syndromes out there--believe me, I googled it--and we could test forever and still not know if it was a genetic cause or not). Our pediatrician and OB are inclined to believe that it was severe growth restriction due to the placenta being bad. A bad placenta could have caused the low fluid and the growth restriction. According to them, there is nothing I could have done to prevent a bad placenta. As our pediatrician said, "It was just plain bad luck." I don't know if this makes me feel better or worse. On one hand, I really, really struggled with wondering if I had done something to cause this. All of the doctors involved kept assuring me that I did nothing to cause this--that it just happened--but as the OB who delivered Camille said, "It is human nature to want to find out why this happened, and human nature to blame yourself." So in some ways, it makes me feel better that either way, placenta problem or genetic cause, I did not cause this. It was just "bad luck" and "nothing I could have done to prevent it from happening". But in other ways, that just brings on the "Why Me's" in full force. Why, then, did this have to happen to me? Why, then, do I have such bad luck?

The days following our visit to our pediatrician were probably my lowest, when I realized that I needed to accept that Camille might have these sorts of issues in the future. My lowest crept even lower over the next few days as I once again scoured the Internet for info on children with small heads. The info out there is not good. I just sat at my computer with tears rolling down my face as I read that most children with small heads like Camille's do suffer from mental retardation, seizures, facial and cranial deformations, etc. I found several stories of children with this condition, some of which fared pretty well, others who did not. One story in particular was about a little boy who was completely wheelchair bound, unable to talk, walk, or even understand what was said to him, all because he had a small head for unknown reasons.

It was at this point that I truly did not think I could go on. I could not make it. I could not do this. I could not live with the possibility that my child would have these sorts of difficulties. This was my worst nightmare, every parent's worst nightmare. I had thought that having my child in the NICU for 4 weeks was the worst it could get, but this surpassed that ten-fold.

I truly wanted to die in these moments. I could not imagine any worse pain than what I felt then. At likely my lowest point, my husband proved once again how truly amazing of a husband he is and how blessed I am to have him in my life. He snapped me out of my ultimate pity party, and said, "No matter what happens, she is a gift. She is a blessing."

And that is Truth. All of the lies Satan has been telling me--that I can't do this, that I can't go on, that my life is over--those are not Truth. The Truth is that Camille is a blessing, a gift from God. God gave her to us. Whatever happens with Camille, that will always remain true. We refuse to see it any other way. I once heard someone say, probably my again very wise husband, that God does not make mistakes. He doesn't look down at something that has happened and said, "Oops, I didn't mean to do that." Now, please don't get me wrong that I think that God gave Camille this condition, and that it was His will for her to have these difficulties. I truly do NOT believe that God wills these terrible things to happen. As Jason would say, that's just plain bad theology. But I do believe that God takes these sorts of things and turns them into good. I truly believe He gave Camille to us as a perfect gift, and that she will give more blessing than anything else we can imagine.

All that to say, this does not mean that I will not keep praying for a miracle for Camille. I also know that God works miracles everyday, and He can work one for Camille. So I will continue to pray everyday that she is okay--that she is affected by this as little as possible--that one day, when she is graduating from Med School or Law School, we can all look back on this in disbelief that it actually happened. I ask that you continue to pray for that miracle too. I also ask that you pray that if that miracle does not occur, and the worst does, that we (Jason, Henry, me, my mom and dad, Danny) are okay. That has been a little prayer that I have been repeating over and over again in my head since this all started: "God, please, please, please let Camille be okay, and if she is not, then let us be okay". Simple, but from the heart.

My promise to you is that I will use this blog to tell Camille's story--to update you (hopefully daily or every other day) on how she's doing, on how we're doing, and most importantly, how you can pray specifically for her and for us. During one of the many times I was driving to Temple to see Camille while she was in the NICU, I was praying, as I usually did on those drives. In that prayer, I told God that if He worked a miracle in Camille's life, I promised that we would tell her story and tell of His miracle to everyone we met. After thinking about that a while, I realized that should not be the end of my prayer. I then prayed that if God could not work this miracle that I so desperately wanted, then I would still tell Camille's story because whatever happens, I know from the depths of my heart that Camille will bless us and bless others, and that either way, her story as a blessing from God needs to be told.