Friday, April 30, 2010

Bottle Feeding and Cribs



Sophie's first bottle

Mattie and Mommy

I'm too tired to write a whole lot so I'll just give the bare minimun and put a couple of pictures...which I'm finding out are really the only things people look at anyway:)
Sunday we got to start bottle feeding them just a little. 10ml once a day. The rest of their milk still goes through a the tubes. Both of them have done very well with their bottles. Today the nurse let us give Sophie her entire bottle and she finished it in about 10 minutes. Mattie downed about half of a bottle once...but we're pretty sure she would have finished it if given the chance. She's still just getting a little less in a bottle since her O2 is still a little higher. She fell asleep a little early today too!
We've been moved to the Chilren's Hospital NICU which is much quieter and we have both girls in what is almost a private room. We're pretty excited about that. We are gonna miss seeing Alex, Stacy, and Crimson and a new family, the Horkeys across the room, though. We had gotten pretty used to the other NICU and we feel like the New Kids on the Block (not the band) again, but I'm sure it will feel like home in no time. (Which as Hannah Danley pointed out is pretty sad)
Mattie is in a crib for the first time. Sophie will be in one as soon as they find one for her. They are still having a little trouble coming off of their O2 so keep that in your prayers. Thanks again for praying for them. We are just barely starting to see the finish line from the NICU and I'm afraid that might make the wait for the next several weeks that much harder for me!
...I tried to post this last night, but got disconnected just before I got it online and was too frustrated to finish it. This morning we found out that both girls are going to get to bottle feed ever feeding as long as they want to. If they are too tired or aren't awake when it is time to feed then the rest will go through the tubes. We'll see how it goes!

Monday, April 26, 2010

A great birthday for Amber

I don't have time to get new pics up right now, but wanted to let you know the good news. Both girls are maintaining their temperature well enough that they raised the lids on the incubators Sunday morning. They are both doing really well with that. The nurse that day also pushed the doctors to let them try to bottle feed just a little...enough to start teaching them how to suck, swallow and still breathe anyway. I fed Sophie 5 cc's of milk and Amber fed Mattie 5 cc's and then we held them while the rest was going through their feeding tubes. Both did really well. We thought it was pretty cool that the girl's took their first bottle on Amber's birthday.

This morning we found out that Sophie's blood count has gone up a little and she is still working to produce more, so they are not going to have to give her another transfusion for now at least. We were really excited to hear that. They are trying to wean the girls off of O2 right now. They turned to flow down from 2 liters to 1.5 today, so pray that they will do well with that. Basically, they are being stubborn and refusing to come off of Oxygen. Since they weigh 4lbs 15oz and 4lbs 9oz now getting off of O2 is one of the biggest hurdles we have to get over before we come home, so please focus prayers on that. (although I'm pretty sure if we come home too soon Amber and I will lose our minds over the worry!)

We haven't seen Alex and Stacy for a day or two (we kind of lose track of days here!) so I don't have anything new to report on Crimson. From across the room any way, he looks like he's fighting as hard as ever and doing well!

Friday, April 23, 2010

He's coming out!

Sophie and Mattie's friend Crimson got to come out and be held by his mom for the first time today! She was just a little excited to say the least. He has been able to get rid of at least a machine or two and continues to improve.
We are waiting to hear if Sophie will need another transfusion or not. Her blood count was a little lower than it needs to be at the last check and they will check it again on Monday. It shouldn't be too big of a deal and they were pretty sure that she was working hard to correct the problem herself. Last night Mattie weighed in at 4lbs 10oz (I think. We're hearing different things right now!) and Sophie is 4lbs 4oz. Both of their beds have been turned to fan mode which means that they are gradually turning the temperature down to get them used to room temp. They will be able to bottle feed as soon as they get weaned off of O2 so pray that they will be able to quit dropping their numbers. (how much O2 is in the blood stream and their heart rates). They tend to "spell" a little especially when they are being fed.

Both of their outfits were gifts that they won't be able to wear for very long. Ya'll sure are keeping our girls in style! Mattie is the last picture with the "Daddy loves me" shirt actually on. The rest are of Sophie this time.

Wednesday, April 21, 2010

When there's not much to report, it's good news.

Mattie (We know there is a lot of confusion about the spelling. Amber and I both had family named Martha and called Mattie. We wanted a family name but like Madelyn better. Therefore, Madelyn is "Mattie" for short which fits in with my obsession that names mean something or are in honor of someone....Mattie will probably hate us for making her explain this for the rest of her life! :) Sophie (Sophia means "wisdom")
Sophie is on right and Mattie on left.

Mattie isn't quite as big as she appears in the pictures just yet!

This is the first time I got to hold them together. It's quite a process to get them situated...I'm hoping it will get easier once they aren't "wired"!
I should also mention that the reason there aren't more pictures of Amber with the girls is because she won't let me post any of them!
Don't get too excited. They were positioned like this...they did hold on for a few minutes any way!

The title just about sums up everything new. We went in this morning to be there while the Doctors were making rounds and they had already almost finished. They apologized saying there just really wasn't that much to talk about any more with the girls. That's pretty good news to me. They are still being weaned off of their O2. Mattie is big enough that they have started weaning her off of her bed. (The beds regulate temperature and humidity when they are too small for their bodies to regulate themselves.) Sophie is not far behind and will probably start being weaned soon. It will probably be within the week that they will raise the tops of the beds to see how they do at room temperature. Once the girls are weaned off of their O2, they will be able to try bottle feeding and hopefully nursing not long after that. Mattie is now 4lbs 7 or 8oz and Sophie is 4lbs 3 or 4oz. You'll probably notice they look a little different. We couldn't believe how much different they look with the feeding tubes in their noses instead of mouths. I'm afraid I won't recognize them without any tape or tubes!

Crimson had a much better day for the last two days. He is up to 2lbs 10oz the last I heard and the cyst in his lungs seemed to have shrunk a little which is very good. He is being weaned off his Nitrous which helps keep the lungs expanded. I'll let you know more about him soon I hope. Keep him, Alex, and Stacey in your prayers.
Amber and I went home to Shelbyville last night to get a few more things from the house, but more just to go to Fairlane and see everyone. It's hard to believe that we've been gone for over a month already. I've joked to several people that I can't even remember what my schedule and routine used to be before all of this happened...of course I'm fairly sure that any parent would say the same thing whether they went through the NICU or not!

On Prayer
When we got home, our grass was freshly mowed and the flower bed had been weeded and new flowers planted. The Garrells even came by to water the flowers and we surprised them when we were already there. Our neighbors came out to check on us when they saw we were home and I found out that they have been mowing our yard in addition to people from Fairlane mowing it! Whatever else comes out of this, we know we are truly blessed with good friends and family.

I thought I could give a devotional talk last night free of tears since the girls are doing so well now. I'm not sure why in the world I thought I could do that since I haven't spoken at Fairlane in the past year without getting choked up! For what it's worth, I'd like to share in written form what I tried to share last night...It's a lot easier to get words out without having to speak over tears!

One of the things I have struggled with through all of this is how prayer works. I know the New Testament especially is incredibly plain about the power of prayer, praying without ceasing, praying for the sick, and the "fervent prayer of righteous man accomplishes a lot." My struggle has been how to know what I am supposed to pray for specifically while still leaving room for God's will. So far, every prayer we have asked has been answered for the girls. That's not to say they always will be, though. And I know other prayers that have gone unanswered, when I was absolutely sure I was praying in faith. What about other parents who have prayed for healing and did not receive it? If you haven't read "Where is God When it Hurts?" then you need to. If not to help you when storms hit, then to know how to help others when their storm hits.

Something that Phillip Yancey wrote in this book reminded me of the story of Shadrach, Meshach, and Abednego. When they were ordered to bow before the King's idol at the threat of being thrown into the fiery furnace, their response, I believe, is a statement of their view of prayer. "If it be so, our God whom we serve is able to deliver us from the furnace of blazing fire; and He will deliver us out of your hand, O king. But even if He does not, let it be known to you, O king, that we are not going to serve your gods or worship the golden image that you have set up." (Dan. 3:17-18).

That verse swept over me suddenly and I have to believe the Spirit had something to do with reminding me of it. For the first time, I felt comfortable in praying expectantly and still leaving room for God's will. These men knew beyond a shadow of a doubt that God was able to deliver and that He in fact would deliver. That is what they prayed for and what they expected. With that expectation, however, is a realization that we can't see what God sees and we don't see time the way He does. Therefore, if our prayers are not answered at the time we want them to, they will still be answered even if that means on the other side of this life.

Buddy Koonce reminded us last night that God wants children to be healthy and whole. After all, in the beginning, all of creation was good. Since then it has been groaning for resurrection just like humanity. I believe I can pray expectantly. We don't expect anything at all to be wrong with either of our girls. I expect that in this lifetime. We are trying to keep our faith grounded in the fact that God wants that for our girls as well and still recognizing that even if our prayers aren't answered exactly how we think they should be right now, all of God's children will be whole for eternity. This small dot on the "timeline" that we call life will be nothing more than a small dot that we vaguely remember when we are walking with God again in Paradise.

I know most of you have struggled with how prayer works and what our belief as Christians is supposed to be...especially in the light of "unanswered prayer." I'd like to get your input on this subject so that we can all come to a better idea of how we are to pray.

Saturday, April 17, 2010

Bath Time

The batteries died before we got good pics of Sophie in her bath, so we only got these first two.
Don't worry. The wires come off before the water comes.
Mattie went first, so she got some glamour shots.
One of the nurses wanted to teach us how to "swaddle bathe" the girls. Here's Mattie enjoying hers. They stay a little warmer this way.
We finally got the results from the 30-day head ultra sound for both girls. Sophie's was absolutely normal. Mattie still had her one spot that had changed like they expected it to, but had not grown any! The Doctor explained a little better what it means exactly and let us know that if this insult causes permanent set backs, it will more than likely be basically a motor problem with her right leg based on where the issue is in her brain. That was a huge relief because we were under the impression that the problems could be that and have impacts on cognitive skills, breathing, swallowing, and a host of other things. We are very excited about the results today. They will continue to monitor Mattie's PVL and she will probably have an MRI before we leave the hospital to get a clearer picture of it. Both girls will start some sort of physical therapy probably next week to help their development. We are excited to get that started and see where they are right now.
One day Mattie will be furious with me for sharing this story...but she's not big enough to put up a fight right now, so...
Amber and I were looking in the glass of the NICU talking to Jennifer Giesseman when Jeff, Sophie's nurse started walking around the room trying to figure something out. Finally, he stuck his head out the door long enough to ask the receptionist to call maintenance because he thought the sewage had backed up in the pipes. Apparently there was a foul smell that filled the entire NICU. I asked where it was coming from and he said he was afraid it was the sink between our girls. I told him to check another sink that I noticed the other day had been clogged a little. He went back in and proceeded to walk all the way around the room sniffing all of the sinks.
We kept talking with Jennifer and noticed the maintenance man go in, talk to Jeff for about 2 minutes and then leave. We said good bye to Jennifer and went in and were immediately aware of the smell. Amber cracked a joke to Jeff asking, "are you sure it's not one of our girls?" to which Jeff replied rather embarrassedly, "well... we weren't sure we should tell you."
Mattie had apparently caused enough of a smell in her enclosed isollette that it never occurred to Jeff to check a baby. It must be backed up sewage. Of course I was impressed with my daughter's ability to clear a room and half-jokingly said I wanted to see the diaper that did that kind of damage. I was quickly told that I couldn't, though, because her nurse felt it was necessary to double bag and get rid of that particular diaper.
It's nice to be famous amongst the nurses...I think.
We continue to get closer to our friends across the room. I wanted to wait to give details about them until I had asked permission and I let them know today that all of you wanted to pray for them by name. Alex and Stacey are our age and their son Crimson was admitted to the NICU about 2 1/2 weeks ago at 28 weeks gestational age. We noticed Alex come in a few weeks ago looking like what I thought I looked like when the girls were first born. I met him briefly but we didn't get to really talk to him until Stacey was in a few days later. By that point she was doing great, so it blew us away when they told us that she had had some pretty serious complication in birth and had almost died. When Alex was in the NICU for the first couple of days, he was worrying about his son and Stacey. I still can't believe how calm he seemed. He's a lot stronger than I am.
Stacey is still doing very well. Crimson is a few days into some steroid treatments to help his lungs and they are already kicking into effect. He is starting to wean down on his O2. Today they saw some cysts on his right lung, though. That is the main thing to pray about for them right now.
They mentioned early on about Crimson having two girlfriends on the other side of the room. God is a big God and Amber and I can't wait to see all three of our children playing together some day in Kentucky and in Shelbyville.

Thursday, April 15, 2010

Quick Update

I don't have very long, but wanted to let you know that the girls are having a good week. As of last night Mattie weighed 3lbs 12oz and Sophie was 3lbs 7oz. Their little thighs and arms are getting closer and closer to looking like normal size, small babie's arms. I realized yesterday or the day before that we have become the parents that we were jealous of when we first entered the NICU. For the first week or so, we were jealous every time we heard a baby on the other side of the room cry out loud. Now ours are letting them go regularly. We were very jealous when we walked in and saw parents holding their babies. Now we get to hold them for an hour or so at a time. We felt like all of the other babies in the room were huge compared to ours and now our girls are getting to be some of the oldest and catching up and passing many of the others in size. Rob McKamey sent me an email reminding me that time will begin to fly from this point on, and I'm very glad to say that I remembered something that happened last Wednesday and Amber and I had to argue to establish that it did in fact happen a full week ago and not just a day or two before. Our nurse last night had the girls on Sunday night and we asked her if she had been there the night before. I'm afraid I've lost all track of time!

One of the biggest blessings that we have gotten out of this experience so far is the number of friendships strengthened and some new friendships that will remain forever. I would ask you to keep our friend's son in your prayers. We have gotten to the point that we are as anxious watching over him in the NICU when they are out as we are watching over our girls. They apparently do the same for us. We've also gotten very close to the host family at Natchez Trace and several of the members here. I am reminded every day of the first century Christians hospitality and it is a gentle reminder of God's loving hands taking care of us.

Mattie and Sophie will have their second brain scan on Friday, so please pray the they will both get good results. Sophie also had just a small (regular for preemies) "imperfection" with her eyes. The doctors are fairly sure that they will be fine by the next checkup and we feel good about that as well.

Time is flying here, but it still feels like we have been away from our family in Shelbyville for an eternity. We can't wait to get back to you.

Saturday, April 10, 2010


We were really excited and surprised when Mattie's nurse mentioned today that we could hold them together. This is the first time they have been this close to each other since Mattie was hogging all the space and kicking Sophie in the womb. We weren't really sure how they would like getting together again. :) Sophie's nurse put their hands together and they held on for just a second before pushing each other away. That could make for long teenage years! Mattie is on the left and Sophie on the right.

Sophie (Amber, Josh) Mattie
Take a guess. We know. Just wanted to see if you could tell.
(of course we know when we took the picture. not sure we could tell yet if you took the picture)
You should be able to figure this one out if you look close.
Sophie has to have a chest x-ray in the morning just to check. She was breathing a little deep tonight and it's about time to check on her anyway. Other than that they are doing pretty well.
Keep our friends across the room in your prayers. Their son was born about a week and a half ago. We are both learning from each other and trying to encourage each other. They need your prayers right now.

Willing to share

It's crazy how much you learn when there is a time to go to the hospital that you never really wanted to know. When reading all the twin pregnancy books and twin raising books, Amber was always careful to skip over the Twin-Twin Transfusion sections because we didn't want to add something to worry about that we had no control over.

One of the things that we have learned that makes this incredibly more bearable and somehow uplifting while it is still also incredibly difficult is how God's love is funnelled to us through His people. We have gotten and are still getting so much food that Amber is afraid she is going to gain more weight from snack food than she did from 2 babies! (I have to admit that we used some of it to bribe the nurses we like:) We have been sent money from people we have known and loved for years, people who we have just met, and people that we have never met but heard about us through people we know. We have been getting cards every day reminding us that there are thousands of prayers going up for us. We have been offered several different places to stay in Nashville at people's houses in addition to finding the hospitality house at the Natchez Trace Church of Christ. We have gotten so many preemie clothes since the girls have been able to wear them that the nurses are staying busy keeping them changed. (Which is good since they seem to be blowing their diapers out every day!)

I just finished a book the other day entitled Irresistable Revolution. It is definitely a different viewpoint about Christianity and what it means to be a follower of Jesus. The author is very concerned about the poor and outcast that too often are neglected because...well...Jesus was very concerned about them. Throughout the book, the author makes the observation that it is important to not just fight for an issue, but to get to know people. He asserts that we will do and share anything for someone that we know. The reason poverty and desperation goes without response from the church too often is because we are disconnected from people different than us.

I believe we have seen first hand how accurate that theory is. People from all over have poured time, energy, prayers, and money out for us because they knew us, knew someone we knew, or simply got to know us a little through this blog. While we have your attention, I'd like to pose a challenge and see if this can be one of the good things that comes from this whole ordeal. You have been willing to share with us and we have been overwhelmed by your generosity. I want to challenge us not to share with someone less fortunate yet, because that feels unnatural. I want to challenge us to simply find someone hurting or in need and get to know them. Spend time with them. Eat dinner at McDonald's with them a few times and find out about their family. If this theory is right, the sharing will happen, but it will not be coerced or forced. It will be the church being the body of Christ.

(I figured I needed to preach at least once since we had this audience)
The girls are both doing well. Gaining a little weight each day. I don't have new pics to post right now, but I'll get some up soon. Mattie is 3lbs 3oz and Sophie is 3lbs 1oz as of last night. Things are calm. We are getting more and more used to changing diapers and taking care of them without fear of breaking them.

I'd like to ask you to pray for a young couple whose son is across the room from us. We have gotten to know them a little over the last several days and their company has been a blessing to us. They are having a rough day today, and could use some encouragement. Thank you again for being willing to share stories, blessings, prayers, and encouragement. It means more than you know.

Thursday, April 8, 2010

Blow Out!

We usually call first thing in the morning just to see how the night went for the girls. I called this morning around 4 and they had done pretty well during the night. One of the questions we generally ask about Mattie is whether or not she had a "stool" or not. She tends to wait as long as she can. (I'm convinced she is just thrifty like her dad and trying to save diapers for us.) Anyway, at 4:00 am we were told that she had just a little in one of her diapers.

I called again around 8:30 and the day shift nurse reported that Mattie had blown her diaper out. Apparently, she shot it (stool) all the way out her diaper to the bottom of the isolette. The poor night shift nurse had to take her out, clean her up, change all of the blankets and chords, and clean the inside of the isolette! I hope Kristen comes back to take care of Mattie again just so we can apologize for the extra work Mattie gave her...and because we like the way she takes care of her.

I should probably put a word about the doctors as well. We have been very pleased with all of the doctors we have seen. It was just hard news to swallow and we had even more difficulty with it since we couldn't understand a lot of the terms. We are told over and over again that we are in the best place we could be and we both agree with that. There aren't any doctors that we don't really like. (so you don't have to talk to his mom about his bluntness, Nana!)

We also think it's important for everyone to know that just having the girls is an answer to a lifelong prayer for Amber. Her grandma has twin sisters and had triplet brothers, so all of her cousins expected someone to have twins. Amber is one of the youngest of the crew and one of the last hope of twins (unless of course someone has another set!). She has prayed and wished for twins since she was a little girl. I kept saying it would be better to warm up with one and then go for twins...but apparently I don't have any control over it. I'm glad I don't. I wouldn't have it any other way.

(Unfortunately, we haven't put disposable cameras for the nurses to take pictures while we're not there, so we don't get to post any pics of the blow out. I'm sure Mattie will be glad about that in about 16 years.)

"A word aptly spoken"

Sophie in her first outfit. (Don't worry, she's not missing a finger)
Mattie still loves to flail around. It's really not that easy to dress a baby. It's even harder to do it through a box with holes in the side when they have about 5 or 6 monitors and wires coming off of them!
I love it when they grab my finger. She's sleeping good here, but when Mattie got her PICK line out, the worst part was pulling the tape off. She had a death grip on me! We don't like hearing painful screams though. I don't have a chance. (I'm sorry, Papa for picking on you for spoiling Amber)

I'm pretty sure that we were the talk of the doctors and nurse practitioners for a couple of days after we found out about Mattie's PVL. When the doctor was explaining to us what PVL was and what it could lead to, we, of course, understood about every third word. I asked for information to read on it, and still couldn't really comprehend what I was reading enough to really digest everything that was said. All we knew really was that there had been some incident(s) similar to a stroke at some point for Mattie and she was more than likely going to have some serious developmental problems. We would just have to wait until she is 18 months old to really start to see what those would be. Of course, I wanted to know more about it, and exactly what was going on, so I decided I would bring my dad into it (he is a family doc) to help explain it to us.

Apparently, asking for a picture of the ultrasound to show to another doctor puts doctors into a slightly uncomfortable position. :) The doctor who explained it to us first came back in to talk to me again. Then a nurse practitioner tried to work with us. Then our doctor for the next two weeks made a point to come explain it again. We do have a better understanding of it, but we are still getting the pics to my dad...if for no other reason than to keep them on their toes. I'm thinking about asking for a second opinion on everything now, just to keep them guessing!

Dr. Rush, who is our resident doctor for the next week or so was the last to talk to us. She told us everything we already knew. However, her tone of voice was completely different than the original explanation. We had gotten used to nurses ducking their heads when we mentioned PVL. Dr. Rush, on the other hand, still gave the same possibilities of permanent damage, but did so in a much less negative and "doom and gloom" way. She mentioned that the brain can compensate in incredible ways. At some point, Amber and I both picked up on her much less scary explanation and realized that she was making it sound like it was a rather small area that had been affected. I asked to be sure, and her words, I think, were, "oh yeah, small."
I'm pretty sure that "small" could count as "a word aptly spoken" as the Proverbs writer says. He says those words are like "apples of gold in settings of silver." We still know that Mattie's future is still uncertain, but Dr. Rush's coming to talk with us left us feeling much better about things. As far as uncertain futures go for that matter, so is Sophie's, mine, Amber's, your's, and every baby, child, teen, adult, and elder in this world. God is in control. (Thanks for reminding me of that, mom:)

Sophie got her pick line (basically an IV that starts in the arm and follows the vein all the way to the heart) out yesterday, so both girls are styling and profiling now. My in-laws went shopping...let's just say the girl's drawers are full of preemie clothes and all the nurses are talking about how cute they are. Mattie has grown to 3lbs 2oz and Sophie is right behind at 2lbs 15oz. I was excited today because I finally got to hold Mattie for more than 5 minutes before she had to go up. For the last several days, I've had to put my baby away because she couldn't keep her O2 level up while I was holding her. We switch babies every day and apparently both of them just like Amber better. I guess I must really stink. Oh well, they'll get used to it. :)

Sunday, April 4, 2010

We skipped Bible Class

As a youth minister, there aren't many times that we skip any services. Even if I had another job, it has been hardwired into my being that even though Christianity is not about punching a time card 4 times a week (Sunday class, worship, Sun. pm, Wed. pm), being there for all the services that your congregation has is just what you do.

This morning we planned to visit with the West End congregation a couple of blocks away. We have visited with the Natchez Trace congregation a few times already, and love the people there and are going there again tonight. After the news about Mattie this week, though, we just kind of wanted to go somewhere that they didn't know who we were so we wouldn't have to answer how the girls were doing.

Every morning, the first thing I do when I wake up is to call the NICU and ask how the night went. Both girls had done well, but Mattie's nurse asked if we were coming in today. Since the last time we had heard that type of question led to a doctor explaining what PVL was, I was a little nervous. I didn't want to tell Amber yet, because I didn't really know anything and didn't know she had over heard that comment anyway.

Needless to say, neither one of us really felt like going to we skipped and went to see the girls. I'm pretty sure the reason Mattie's nurse asked if we were coming in was because she wanted to see Amber's face when she saw Mattie in clothes for the first time! Since she got her PICK line out yesterday, she can start wearing clothes and the nurse had gotten her all dressed up for us. I have to say, I think sometimes God needs to be worshipped outside of Bible class! :) We were that much more excited to go to worship when we left. (Lest I get misinterpretted, I love Bible classes, and can't wait to get back into ours at Fairlane. Today we just had a more important encounter with God)
When we got to the West End congregation, we were blessed to be pointed to the preacher and his wife whose grandsons are also in the NICU. We had already heard about them and were trying to find out how to connect with the parents. It's funny how God introduces you to people you need to know. We did have to answer how the girls were doing (in fact, the preacher called us out from the pulpit!) but it's funny how God puts a different spin on things with something as simple as Mattie's first Easter onesie.
(This shade of pink, we think looks particularly good on Mattie. Sophie ought to be in clothes in a day or two. She already looks so much bigger in the clothes, but they are still pretty tiny. They are gaining weight. Sophie has beefed up to 2lbs 10oz and Mattie is a chunky 2 lbs 15oz.)

Saturday, April 3, 2010

A New Prayer

Well, yesterday kind of took us by surprise. We had been told that Mattie was scheduled for a repeat brain ultra sound because she had a Grade 1 bleed just like her sister had last week. Sophie's had completely gone away by the repeat ultrasound and we expected Mattie's to do the same. After the ultra sound we went in to find out about the results. Since the doctors had not read them yet or come to talk to us about it, I asked the nurse, who was new to us that day, what they looked like "unofficially." I don't think that was fair for me to do. Looking back, I think she probably balked a little before saying it looked like a Grade 1 bleed still. Grade 1 is very normal and doesn't really mean anything as far as damage goes.

Needless to say, when we came in yesterday and asked about the official results and the nurse called the Doctor in to explain them to us, our stomachs sank. I can't begin to explain exactly what it is, because I don't recognize most of the words that we heard and read. Put simply, it's not one of the "graded" things which is what we expected because that implies bleeding. Mattie's ultrasound showed spots in the front and back of her brain near where the spinal column attaches where there was a lack of blood and oxygen at some point. Periventricular Leukomalacia, I think is the diagnosis. They will do another routine ultra sound when the girls are 30 days old that will show even clearer how much damage was done. We've been told and we've read that this type of "insult" results in a 60-100% chance of cerebral palsy in some form.

Yesterday, we tried to absorb the shock. Amber wanted me to say that since Twin-Twin Transfusion, and having twins, and not knowing about the Twin-Twin Transfusion until so late, among other things were all very rare, low percentage types of occurences, and we got all of them, then maybe we just like hanging out on the low percentage side of things and there won't be any problems at all:)

If any of you went to CYC then you saw the second speaker on Saturday give maybe the most touching lesson of the weekend. He has cerebral palsy. I took a picture of him on my phone and last week some time I put that as my backdrop on my phone. I won't ask you to pray that Mattie won't be handicapped, because I'm not sure how praying in the will of God is supposed to work. Maybe this is God's will. My prayer is that God will keep them safe physically. Amber's prayer is that Mattie will be able to feed normally (not being able to suck and swallow is one of the dangers of PVL). Both of our prayers are that God will prepare us to be the parents that we need to be to our girls no matter which class they are in at school (or as one of the neonatologists joked 3 weeks ago, if they will ride the long bus or short bus). We would ask that you would pray for whatever God leads you to pray.

To the person who commented a while back on our faith and referenced the passage about the father of the demon-possessed boy crying out, "I do believe, help my unbelief!" I want you to know that we do not have great faith. We are struggling like that dad. I guess I'm believing that God can work whatever miracle he decides to work, whether that's no CP or just keeping us sane throughout, whether we have the faith that can move mountains or not.

Thursday, April 1, 2010

April Fool's Day

Well, I wanted to title this post, "We're coming home!" and then put "April Fools" as the first line. However, my wife, who is wiser than I am, advised against it.
This morning we found out that basically the same set back with Sophie on Sunday was going on with Mattie today. She's having a little harder time breathing so they turned her O2 up did an xray which looked a little cloudy. Not a big set back, just one of the things that happens with preemies. We are also waiting for a picture of her heart in the morning because they heard a heart murmur again this morning. Amber and I are convinced she just didn't want to keep moving ahead without her sister.

I'm told that people panic when I don't post every day. I promise I try to as often as I can, but we have to come to the hospital to get on the internet...and most of the time we'd rather be with the girls than on the internet. :) Your concern touches all four of us and we are very thankful for it. To put your mind at ease on the days I can't update, I promise that if there is an emergency or something drastically gone wrong, I'll post immediately so you can start praying. In fact, I'd hate to miss out on those prayers in the moment. So if you don't hear from us, just assume all is well.

Hope you enjoy the pics. You probably quit reading as soon as we started posting pics, but I'm long winded, so I'll type just the same. Amber has been pestering me to put the picture of the dresses from their Aunt Lyndi up for about a week now. I've fought as long as I could and I lost the battle. The first picture is for Livvie.