"We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be"
C.S. Lewis

Tuesday, April 26, 2011

Three Strikes, You're Out

I know some of you have asked what we've heard about possibly donating Carina's organs. We found out today that it won't be possible.

I was told on Friday that the group, Life Link, is who we should speak to. And that generally, they don't take organs unless the patient is brain dead. This would not be the case with us. At first, I didn't understand...once she passes away, isn't her brain dead at that point? Why would it be so difficult to donate organs? Aren't they desperate for them? I needed to speak to someone at this group directly.

I called today and spoke with a wonderful woman who explained to me (a little too 'elementary,' but detailed nonetheless) that the determining factor for organ donation is, in fact, brain functionality. When a patient is on life support, or in a coma, and there's no brain function (i.e. if you touch their hand to a hot stove they wouldn't jerk back, or if they came in from outside in nice, sunny weather, their eyes wouldn't need to adjust), they become a viable donor (if their medical history checks out.) If someone dies, and their heart stops beating --in turn creating brain death---they are NOT viable. As soon as the heart stops, they no longer are able to be a donor. Since Carina has brain function, and the only way she wouldn't is with her heart stopping, they can't accept her organs.

Strike One.

However, they do consider tissue donation and with infants so small/young, but they only accept corneas and heart valves. After the organization lady explained this to me, she explained the process. Whenever someone dies at the hospital, the hospital calls Life Link immediately. They go over their medical information and determine if they would be a viable candidate for donation (so even if you're an organ donor, they may not find you acceptable, FYI.) Once they determine this, the Life Link people call your family, spouse, or in our case, parents, to get MORE medical history, if needed, and permission, if needed. In our case they would call us for both. The medical history needed includes: did I do drugs or drink any alcohol while pregnant, was this pregnancy due to in vitro, etc. I asked her if it was possible to do the questions before we have her, so that I'm not having to deal with that on the heels of losing our daughter. She agreed that would be best and said she would call the eye and heart places and see if they would contact me about it.

Only about 10 minutes later she called me back. She said the eye place automatically said they would not accept Carina's cornea because they believe the eye keeps developing up to 18 months (really? Because I was under the impression that your eyes are full grown when you're born and you grow into them....somebody back me up here....)

Strike Two.

She also said that the heart place told her that their requirements are that the baby must go past 36 weeks gestation, AND be at least 6 lbs at birth. Chances are, we'll go past 36 weeks, but all records show babies with Carina's diagnosis are low-weight births; not ever more than 6 lbs.

Strike Three.

The silver lining is that we don't have to worry about our time with her after she passes away. It was one thing I was very concerned about. We have pictures we want taken, and imprints we want done. We want to just love on her, hold her, be with her, as long as we can. I wanted to be able to help other families if we could, but I was also thinking like a mom, selfishly wanting to be with my daughter as long as possible. We had been praying about the timing of everything, were they to accept her organs....God always knows best. He just took that worry off my list.

But why does it still feel bad? Like the medical society is treating Carina like she's unworthy? Her life has weight, and for them to reject her feels like they are just twisting the knife that's been in my heart since January 28th.

I know that's their rules for everyone, young and old, but it doesn't make it easier to hear. I guess, now, we just keep going. We keep trusting that those unanswered questions will make sense someday. And we just keep reminding everyone that Carina is real, and she matters. 6 lbs or not, she matters. Three strikes...but the game still goes on.

Monday, April 25, 2011

Glory and Answers

My whole pregnancy, I have only seen my OB doctors 3 times, and I've been going every 2 weeks since February. So when I got to the doctor's office today and was told the doctor was at the hospital, I wasn't too surprised. Disappointed, but not surprised. After 40 minutes of waiting, we were called back. The nurse was very sweet and took my blood pressure, my weight and double checked that everything was going...normal. I told her yes and she reminded me that the nurse practitioner would be seeing me today. She left the room and less than 2 minutes later another nurse came in and told me that Dr. Cohen had just pulled in and would be right in to see me. Quicker than I could even get excited, the doctor knocked on the door and greeted us. He said hi to Autumn and told her how beautiful she was (he's the doctor who delivered her, and he loves seeing her). He checked all the nurses notes on the computer, asking me how I was feeling mentally. I told him I have my moments, but I'm doing okay. He nodded and had me lie down for my exam. He measured me and saw that I'm now measuring 41 weeks. I'll be 32 weeks on Thursday. He also felt around to see where Carina's head was and it's already down. He said that's not a good thing. Because of all the extra fluid, she's able to flip and flop around. Extra play room, but bad for delivery. They are worried that she could be breech or worse. I spoke with Dr. Baron after the OB appointment and presented the doctor's concern to her and she said I shouldn't get worried about it just yet. We will wait and see what our ultrasound appointment shows next Tuesday. If the fluid is increasing too much like they are saying, and they want to drain any, it will hopefully limit her movement enough to keep her from flipping around so much. But if not, we still may see that it's not as bad a situation as we're thinking.

Before I left, Dr. Cohen gave me a big hug and told Autumn to "stay pretty." We are praying that Carina does not flip into a position where a Cesarean is needed. Our goal is to keep from having a C-section if at all possible.

I've been reading Angie Smith's book, I Will Carry You, and a few things she writes about have really meant a lot to me lately. First, we are safe with the Lord. We don't have to have all the answers. We don't have to feel like we need to "fill the gaps." He has put the gaps there so we will press into Him deeply.

John 11:40 says, "Did I not tell you that if you believed, you would see the glory of God?" Belief shows up in many different ways. Sometimes it shows up in a waiting room. Sometimes it shows up at home. Sometimes it shows up at the grocery store. Wherever it shows up, it doesn't always mean you have the answers your looking for. It doesn't even mean you GET answers. But answers aren't what give God glory. God's glory is found in those moments when your heart is breaking and you still can praise Him. His glory is found when people pass you, and know you're struggling with something, yet your faith is what shines through the most. God's glory isn't in the answers. It IS the answer.

Sunday, April 17, 2011

30 Week Ultrasound

Friday was our latest ultrasound and I came away feeling very encouraged!

1. The fluid on Carina has not increased, so it's remained the same for the past month.
2. The amniotic fluid has increased, as expected. It went from 24 to 27.9 in 2 weeks. They don't talk about draining until you're in the 30's and only then if it's extremely tight and uncomfortable. By tight they mean that you can push on my belly and there's no softness to it...no "give." Dr. Baron also said that at 32 weeks is when the amniotic fluid should peak and stop increasing. So if I don't jump another 5 points in the next 2 weeks, we shouldn't have to drain any fluid.
3. I should hear back for certain on Monday or Tuesday about being able to donate her organs. The good news, so far, on this subject is in regards to the fluid and draining. Because everything is going so slow, and I'm not needing to be drained now, there is a very good chance I can go to my due date! Carina's head is growing normal sized (sometimes with dwarfism and fluid involvement, the head can become too big to deliver naturally and they have to induce early to avoid a C-section.), so as long as that doesn't change, and her heart rate doesn't drop drastically, we should be good to go to June! This also gives her organs the best chance for donation.
4. We were able to see Carina practice breathing! Something we never thought we'd see! This doesn't change her diagnosis or the outcome, but it was so amazing to see her little diaphragm moving up and down! We knew that there is lung tissue, but the issue was, and still is, her chest. We don't know if her chest will be able to expand enough to support any breaths. But the fact that she's practice breathing is very encouraging that we will get to spend some time with her alive after birth!

All in all it was a very good appointment (and the tech was actually NICE this time!). We go back in another 2 weeks to check on the fluid level and we should have more 'definite' answers then. We will find out if I have to be drained, about the organ donation, as well as if we'll make it to June. Please continue to pray about these things!

Friday, April 15, 2011

Bellies and Blessings

Last night Ken, Autumn and I got pregnancy pictures done. I wasn't sure I wanted to do them back in January, but after awhile I knew we needed to. And after last night, I'm so glad we did.

When we were pregnant with Autumn, we got pictures done by one of my oldest and dearest friends who, graciously, traveled many hours down here to do them as a gift to me. They were beautiful and perfect and just like the ones you normally see. For these pictures, I really didn't know where to go.

I had "liked" a facebook photography page that one of my friends "liked" almost a year ago, and I always see her beautiful work posted. So, just to see, I sent them a message asking if they did anything at no charge for pregnancies with a fatal diagnosis. The owner immediately wrote back to me and said yes, she would love to do them for us. We have been writing back and forth for about 2 months now, talking about timing and keeping her up to date on our appointments. She likes to do the pictures at about 33 weeks. I had been keeping her informed about my measurements, and since I'm measuring 36 weeks at only 30 weeks along, we figured it would be fine to do them now. So we scheduled our appointment for an evening session this past Thursday.

All of us wore jeans and black shirts (specially bought for the occasion--since we didn't have any "un-lettered" black shirts). We got there and were warmly greeted. Nikki, the owner, walked us through what shots we would take and we got started. I was a little nervous at first but quickly began to have a good time. We got some beautiful shots and I can't wait to see them all in a few weeks.

The name of this organization is Bellies and Blessings and I am so thankful for Nikki and her generosity. It was so nice to do something 'normal' for this pregnancy. We aren't having a baby shower. We aren't decorating a nursery. We aren't dusting off the carrier and getting it ready to be added to the back seat of my car. But we were able to do this. And these pictures will be a wonderful remembrance of our time with Carina before she was born. With Nikki's permission, I will post some of the pictures when we get them back.

Friday, April 8, 2011

"Fat Guy In A Little Coat..."

Don't be offended by my post title...I'll get to it's not-so-hidden meaning later in my post. :)

This past Thursday I had another OB appointment. I am 29 weeks along right now but the nurse practitioner says I'm measuring 36 weeks. It makes sense because I've got extra amniotic fluid. I have another ultrasound appointment on Friday and at that time they will determine if I need to be "drained." My guess is, they will wait another two weeks, but I could be wrong. Right now my discomfort level is probably a 7 out of 10, mainly because the only position that isn't uncomfortable is laying on my side. And since I can't chase a 2-year old while laying on my side, I'm pretty uncomfortable most of the time :) But because my discomfort level isn't over a 10, they probably will wait to drain any fluid until it becomes unbearable. Mainly because they can only do it a few times. Since I'm only 29 weeks along, I still have 10(ish) weeks till my due date. So if they can only do it a few times, they need to wait as long as possible.

I haven't posted about this next bit yet because we weren't certain if it would happen. We still aren't certain (maybe we'll find out on Friday) but I thought I'd post about it now because it has relevance to the whole "draining me" thing.

Ken and I have made the decision to, if possible, have Carina's organs donated. We have been told that there doesn't seem to be a reason her organs would not be acceptable (other than her lungs, the rest of her organs are growing normally). It wasn't an especially hard decision, but the aftermath of this decision is more emotional and painful to think about. If any of her organs are accepted, it would limit our time with her. They would have to take her as soon as she passes away, but they would bring her back as soon as they could. This, I know, will be hard for me. I can't even think about it now, but we are just praying for God's strength for that time. And what an amazing gift to be able to give another family! We still are not certain that they will accept, but we are trusting God with this and just being obedient to how we feel Him leading.
The other thing is, we need to be able to carry her as close to term as possible so that her heart and other organs can grow as strong as they can. This will also be important for the timing of them draining the fluid. Since they can only do it a few times, they will need to space it out as much as possible so they don't have to induce me too early, limiting the time for her organs to keep growing. Please be praying with us about this decision. We are praying that the timing is just right. That if they do accept any of her organs, that we will get some quality time with her before she passes. (we are praying for this regardless of their decision to accept or not.) We are also praying for the strength when and if they do accept. We're also praying that if they have to drain any fluid, the are able to space it out enough to get me as close to my due date as possible.

On a more selfish (?) note, all of my cute maternity clothes are getting too small...soon I will have to resort to the "balloon" maternity clothes for comfort. This is, of course, due to the extra fluid. At this point in my pregnancy (29 weeks) I should still fit into my cute stuff. But every time I try on something I think will be comfortable...I feel like any minute the seams will rip or buttons will start popping off. Hence the "fat guy in a little coat" comment. (You're welcome to all you Chris Farley fans) :0)

Well that was my moment of complaining. Most of the time I am content to wear my balloon clothes knowing it means I still get to feel Carina moving and playing. I am content to play the recording of her heartbeat at times when I question....well, everything. I am content to dance with Autumn because I know it will be the only time she gets to spend with her sister. I am content to blog and journal my journey because I know it is reaching people and encouraging so many. And I am content to be Carina's mom for as long as I am allowed this privilege.

Saturday, April 2, 2011

Hell Hath No Fury.....

So it's been a rather emotional week.

Monday I had to get blood drawn again for my antibody screen. Apparently my OB forgot to give the order to do that at the same time I did my glucose test. So, two pricks (from a needle, ha ha) and one ginormous bruise later, I am hopefully done with the blood draws. The antibody screen is to see if I need another Rhogam shot (which I am pretty sure I will need). Long story short about the shot..it's because of my blood type. If I don't get it, my body could produce antibodies to attack the baby. Like she doesn't already have enough problems to deal with.

Wednesday I called to get the results, which showed I did need the shot (surprise). I asked my OB if I could wait until Friday since I had an ultrasound in the same area that day anyway. They agreed but said I couldn't go later than Friday. So I called Triage at the hospital to make an appointment. The lady there said they don't do the shots on Friday. They only do the shots Monday, Wednesday and Saturday. Well let me think...Monday is gone, Saturday is too late, so I guess I'm getting my shot today! I asked if I could make an appointment and she said I had to bring my screening results with me. Well I didn't have those, so I was supposed to pick them up at the OB's office on my way to the hospital. They said I didn't need to make an appointment and it would be a quick in and out deal. My sister came with me to help with Autumn. On the way up there, the hospital lady called me again and said I actually didn't need to stop at the OB's office for the results because the hospital could access the results through the computer. So I get to the hospital and the lady I spoke with isn't there. The lady who is there doesn't have any of my information. So I have to fill out paperwork and wait. Two and a half hours later, the details of which are too boring to recount, except for a few anecdotes, I get my shot and leave.

The few anecdotes: The bereavement counselor at the hospital was there so I got to meet her. She was nice and actually tried her best to get me taken care of --to no avail but it was really nice of her to try!
The nurse who helped deliver Autumn was the nurse who gave me my shot. She asked about the pregnancy and I told her about Carina. It's really like dropping a bomb on people and I felt bad because she got all nervous and started making mistakes on the computer. I told her it was okay and she gave me a big hug. She even said that if I wanted her to come and deliver Carina, that she would. It's been so amazing having friends of ours in the hospital who are wanting to be there for us. It's different having nurses there who are just getting a paycheck, compared to those who love you and want to be there for support. We are so blessed to have that.

Friday I had my ultrasound. For some reason, appointments were about an hour behind schedule. (on a positive note, we got to watch the 10 year anniversary show of Regis and Kelly--woo hoo.) The same tech we had two weeks ago was the tech who saw us. He sort of remembered me. I had called ahead of time to see if we could record the baby's heartbeat at this appointment and they said yes. When we got back to the ultrasound room, I told the tech that we had brought our recording devices (a few phones and the doppler from Build-a-Bear) to get the heartbeat. He said, "If it's still there."

Silence and shocked faces answered him as I shook myself from my trance and said, "Well I've been feeling her move all morning so I'm pretty sure it's still there." I tried not to sound nasty, but this guy had no idea how close he was to meeting my fist.

He then said, "You know there are signs all over that say you can't bring cell phones back here." I was already ready for him to keep making these types of comments so I quickly said, "It says no video recording, which we're not doing." And my mom followed up with, "And under the circumstances, I'm sure this is not a problem." He quickly said, "Oh, well of course." A few beats went by and he said, stupidly, "You know I don't make the rules, the doctors make the rules." To which I replied, "And I'm 100% certain that Dr. Baron (our amazingly awesome ultrasound doctor) would not have a problem with it." He said, "Oh, well I'm sure that it would be fine." He tells me to lay down and we start the ultrasound. He said he would let us know when to record. And I must say, he was very accommodating about that....after we'd let him know that three women were going to beat him to a living pulp if he said one more word about "the rules."

The appointment went fine, overall. Her arms and legs are measuring 11 weeks behind, now. My amniotic fluid levels have increased, and we could see the heart taking up nearly the entire chest cavity now. We also were able to see a small bit of lung tissue, which gives us some small hope that we will be able to have a little time with her after birth. If she had no tissue there, we would probably not have time with her alive. But because there is some there, she should be able to take some shallow breaths for a short time. We are so thankful for that!! We also noticed that a few of her ribs are curving out instead of curving in, which is just more of the bone malformation. The tech thought the bones may have been fractured, but Dr. Baron said it's hard to fracture bones when you're swimming in a giant swimming pool. (That's why she's the doctor and he's not.) Essentially, that's what's going on with Carina. Because of all the excess amniotic fluid, she's able to move and bounce around and play as much as she wants, unencumbered by the space issue. She has TONS of space! Another thing to be thankful for. She will be able to have something not many kids get to have when in utero: FUN! She won't be cramped at all! The only downside is, they need to keep that monitored as well. If it gets too high, they will either have to drain some or (depending on how far along I am) induce me. It's mainly because of the pressure on her little body, as well as my comfort level. I say, I can deal with a little discomfort for her to have another week of play time.

So we had another great talk with the doctor, got a very clear recording of Carina's heartbeat and left. Today (Saturday) we went up to Build-a-Bear and put the doppler into the bear that my dad got Carina for Christmas. I can't believe how precious it is. I've listened to it a million times already. It's so strong, too! Just reminding us that she's here and she's being brave! I can't wait to meet my little trooper.

Thanks again to everyone for your continued prayers. It's a big constant comfort.