Prettier every day

Mattie and Sophie both like to sleep on their bellies. They breath easier and generally stay happier....Their mother is looking forward to when she can start sleeping on her belly as well.

Both girls are looking less and less like a bald man...which makes me very proud:)

Jenna Henderson mentioned that we needed to have a picture showing how big they are in perspective. This is Sophie last night when we were putting her up. Those are my hands. Mattie is almost exactly the same size right now. As you can see, their bodies are about the length of my hand, forearms are about the width of my finger.

Little miss Sophia had to be edited to keep the picture PG. I'm pretty sure this picture will keep her from being allowed to get her license until she's 20. I would hate to turn her loose with road rage.

But she's still daddy's girl.

The Blessing of Family

"Bear each other's burdens and in this way you will fulfill the law of Christ." - Galatians 6:2

The last couple of days have been not so good, great, and good today...promising to be great. Sophia started swelling again a couple of days ago and had some fluid on her lungs which made it hard for her to breathe. The doctors weren't that worried about it and reassured us that it wasn't a step back as much as that they tried to take to big a step forward at first. Of course since that was the first bad news we have really had, it made for a very bad day. We didn't get to hold her, and she was hard to watch when she was breathing so hard.

They gave her some things to help the swelling and she seemed to respond quickly. Yesterday, there was so much swelling gone from her face that for the first time we could really tell they are identical...now we're worried again about not being able to tell them apart! (I'm happy to worry about that:) Last night we came in to hold them again, hoping we could hold Sophie. We each got a girl and held them for about 2 1/2 hours. Yesterday we felt much better about everything in general.
Today things are still going better for both girls. They continue to hold steady. Amber's checkup for her blood pressure is much better and she is doing really well. They are moving up how much they are eating... they are up to a whole 7 cc (7 ml, I think) of milk through a feeding tube. We are about to go up and hopefully hold them for a couple of hours again. That will make today great!I wanted to post the picture a couple of days ago when I was holding the feeding tube up. I didn't think it would be possible to feed either baby as the dad before amber did. I'm not sure if "with God all things are possible" applies to this situation, but I'm claiming a miraculous ability for the dad to be the one feeding the babies. :)

There is another family in the house with us- a husband and wife. The husband has a brain tumor and is on bed rest trying to get healthy enough to have surgery. We haven't seen much of him because he has to stay on so much medication. His wife is running herself ragged and has made herself sick with worry and taking care of him.

There has been absolutely nothing that we have needed that hasn't been provided for by members of the Fairlane, Spring Hill, and Natchez Trace congregations, family members, friends, and friends of our family members that we don't even know. Galatians 6:2 has taken on a whole new meaning to me. I can't imagine going through this alone. We are passing on some of the food that people have sent. They are feeling the love from the Natchez Trace congregation and have already noticed the care that we have recieved from our family in Christ. Paul said that caring for each other and helping them carry the heavy stuff is how to fulfill the law of Christ. The law of Christ is to "love one another as I have loved you." That means sacrificial love. I am so thankful that God's love is being shown to this couple by you. They know that you belong to God because of the love that you are showing us. And they know that God is love. Thank you. Your prayers have been so effective, I'd ask that you would include this couple in your prayers as well.

Kangaroo Care

As you can see, Amber and I have been a little too busy to update the blog for the last two days! Thursday night when Amber and I went in for a visit, the nurses said we could hold them for a while if we wanted. I would say that we hesitated and weren't sure if we wanted to or not, but I'm afraid my sarcasm wouldn't translate very well through the written word! We could only hold them for about ten minutes because they still can't hold their body temperature very well outside the isolette. Amber was given a squalling Sophie and I got a very content Mattie. (That seems to be the trend so far. I think I have a knack for picking the calm baby, which I'm sure will serve me well in the future).

We also found out Thursday that we had a room at the Natchez Trace Church of Christ hospitality house which is about a mile from the hospital. So... we headed to Shelbyville Thursday night to get organized and make sure the house was taken care of with goofy smiles on our faces from getting the hold the girls. I promise I tried to update that night, but we both started nodding off while we were scrolling through the pictures to see which ones we wanted to post!

Last night while each of us were talking to a girl, I asked as casually as I possibly could when we would get to start holding the girls on a regular basis. (I thought it was a pretty subtle hint). The nurse started talking about "Kangaroo Care" which is skin to skin contact with the babies. There has been a lot of study that just being held skin to skin is very good for babies and especially preemies. Of course we were interested, but then there is the issue of taking your shirt off in a room of a couple nurses. Awkward. You don't get to see those pics. :)

We got screened off and put on the robes backwards and then got to hold the girls again for longer because our body heat helps them maintain theirs. We got to hold them again today for about 35 minutes and are heading back after shift change to put them to sleep and satisfy our addiction...at least for now.

Both girls are getting 2 ml of milk through feeding tubes now. They are still doing well off the tubes and are having very calm good days. Mattie especially seems to be much calmer now that the tube is out of her mouth. I think once the feeding tube is out, she'll never cry again. (you don't have to correct me on that. My answer to everything is that, "they're twins. They'll entertain each other." and I'm not letting that thought go!)

So far, so good

I'm sorry I didn't get this updated yesterday. Writing has been a good outlet for me and putting into words that God is in control has helped us to cling to that knowledge. Yesterday, however, when I sat down to write something, I couldn't make my brain and fingers get together. Without a doubt, the worst part about the NICU experience is the feeling of disconnectedness from your children. Amber got discharged yesterday, so we are staying at the Bowman's house until we, hopefully, find a place in Nashville. We are so thankful for all the offers from different people. Right now, it looks like we will have a room about a block away from the hospital starting tomorrow. Both of us woke up yesterday not sure if we were getting colds, so we were advised to take a day away from the girls to make sure we wouldn't pass anything to them... Like I said, I didn't feel like writing yesterday!

Today, we are both feeling much better, and I am sitting in the car after seeing the girls for a few hours. They have both continued to improve a little at a time. This morning, both of them had their breathing tubes removed. I can't tell you how much better that makes us feel. They already look so much more comfortable. I can't imagine what a shock it would be to have a tube stuck down my throat all day every day for the first 5 days of my life outside the womb! The Doctor says taking the tubes out is a trial run and that they might have to go back in, but that will be normal and ok. For now, we are thankful to see even more of their (in my opinion) beautiful faces. :) Mattie kept trying to do what looked similar to a push up, and Sophie is working on her pacifier like there is a reward if she can find out how fast she can get to the center of it! We keep hearing of how many people from all over the nation and world are sending up prayers for the girls. Thank you. We can't wait to show off the fruit of your prayers on the other side of all of this!

(Madelyn is on left in both pics and Sophia is on Right) (Sorry Grant. I'm afraid the freckle was a false hope. I can't find it anymore!)

Kicked out after we change one diaper

I filmed Amber changing Mattie's diaper and she filmed me changing Sophie's last night. I tried to post it but I can't get my computer and the camera to communiate. That is the first diaper I have ever changed in my life. I have to say, it is not quite what I expected. I didn't picture quite that many tubes and chords to maneuver around!

We got to spend a lot of time with them last night. I checked on them again this morning, and they are both doing really well. No major improvements, but just a calm uneventful day...which is what they need. This morning, Sophie was sucking on a pacifier...which has to be difficult going around the tubes! Apparently she was sucking on them so much the nurse decided to try the pacifier and she went to town. Sophie also had her first bowel movement. Once again...sorry for details you might not want. It's funny what you get excited about that you never thought you would.

We are both growing tired of Amber being poked and prodded on and groups of doctors and students coming around, so we are looking forward to getting out of the hospital for that reason, but we are not ready at all to leave the girls here. There is something that just hangs in the bottom of your stomach when you can't take care of your own children. We ask that you keep praying for the girls to have calm days. For us, we really don't feel anxious as much as incompetent and helpless. Please pray that we will have patience and be able to get over some of the irrational guilt and sense of worthlessness. We know that a lot of people who go through this have felt the same things, but knowing that doesn't do much to take the feelings away. Also, we know there will be times of ups and downs as far as the girl's progress. Right now, we are thankful that it has mainly been ups. Pray that we will be able to handle the downs when they come as well.

A great day

Sophie scratching Am's finger

Amber and Sophie
Mattie finally calmed down when Amber held her

Sophie slept most of the day after a long day Saturday.

Mattie spent most of the day being a diva- kicking and silently screaming at everyone.

Both girls did great all day yesterday and last night. We got to spend a lot of good time with them last night without too many other people around. We needed that. Being with them and being able to "hold" them a little gave both of us more confidence and peace.

two of my favorite things

1. A potential freckle/mole on the inside of Sophie's elbow. We won't have to tatoo them after all to tell them apart!

2. Urine. Weird maybe, but both girls are starting to urinate more. We are still waiting to hear about what they saw when they looked at the kidneys, but the nurses are very excited that they are peeing a more normal volume.

Here are some pics for you to see. Sorry Grant. I can't get a good shot of the freckle yet. :)
Mattie (above) and Sophie (below) soaking up some rays for their jaundice.

Mattie sprawls out and soaks it up. Sophie doesn't seem as interested.
Not sure who's hands and feet.

Pretty sure they have Amber's big toe!

Human Touch

Today has been a day of rest. Amber's blood pressure has been a little high, but we are convinced it is mainly from lack of sleep. At the risk of being rude, I've asked everyone to hold calls and visits today. My phone is available of course, but we've unplugged the room phone and put Amber's away. We still need your encouragement and prayers, Amber just needs quiet for a few hours. :)

Mattie is doing well and continues to seem to improve just slightly. Sophie is having a long day. She is still not producing very much urine at all and they will do an ultrasound to look at her kidneys and then do an x-ray to check her brain some time this afternoon.

One of the things that I thought I knew before but am getting a new lesson in is the power of human touch. Most of our Doctors and nurses have been great (there are a few that seem to stress us more than calm us, but they are the exception). However, a handful of the doctors have a way about them that is incredibly calming and reassuring. All of you who have twins know how many people are in the OR when you give birth. They each came in to introduce themselves ahead of time so we would know who all was in the room. The Neonatologist, Dr. Rojas, came in while several other doctors and nurses were buzzing around and took Amber by the hand and let us know how well he would take care of our daughters once they got here. Later, Amber told me that when they were putting the spinal in, Dr. Garrison, the high-risk pregnancy specialist (she wasn't even supposed to be there but had come after work to do the procedure since we were comfortable with her) took Amber by both hands and calmed her since I couldn't be back there with her. During the procedure, the anesthesiologist, Jonathon, kept rubbing Amber's forehead, talking quietly to us to explain what was happening, and reassured us that all was going well. I also found out later that while I was with the girls in the NICU and they took Amber back to the room, that Jonathon held her hand and then told her not to tell her husband! I never thought I'd be thankful for another man holding Amber's hand and saying that. I have no doubt that God uses these people to show His love to people in the hospital here.

As thankful as I am for those gifts of calming touch, today I learned what it felt like to hold my daughters hand...sort of. I was just trying to ask the nurse if the girls would suffer from not having enough skin to skin contact and while I was trying to figure out how to word it, she said I could touch them. Of course I ran to the sink to wash and was told that light touches are too stimulating right now so I needed to be firm. I was able to reach inside Sophie's incubater and cradle her feet for a few minutes. She has monitors and IVs in both hands so I couldn't really touch her hands. Then I got to reach inside Mattie's incubater. Mattie likes to sleep with one arm as far back as she can get it and the other by her face. I put my pointer finger in the palm of her hand and barely pushed and her tiny fingers reached halfway around the tip of my finger and held tight. The nurses had to give me space since my eyes started watering so badly (I know that's hard to imagine since I usually am not a crier) I think I don't have a chance at all when I can finally hold them next to me.

"Ready or not, here we come!"

Boy what a difference a couple of days can make! I'm proud to announce that I'm a daddy and Amber's a mommy. So far both girls are doing well. Sophie was born at 11:26 pm March 18 and Mattie was born at 11:28. If you read the last blog, then you're probably wondering what happened between Monday when everything was perfect and yesterday when they decided they needed to take the babies out. The short answer is that nobody is entirely sure.

Monday when we went to the doctor we took a bag just in case. Thursday we were so confident in Monday's visit that we didn't even bother. Oops. It was a long visit, but we were on our way out the door when Amber mentioned a pain in her leg. The Doctor dismissed it initially, but wanted to go ahead and get her blood pressure again. We stayed for another 30-45 minutes while they were looking at Amber's blood pressure and just before they sent us out, the doctor decided she wanted to have one last look at Sophie...just in case.

As it turned out, Sophie's chord had some reverse flow in it. She calmly explained that we would need to go back to Vandy and monitor the babies some more and possibly deliver that night unless the monitoring looked good. We delivered. :) When Sophie was born, the nurses said she had hardly any blood in her chord. I'm incredibly thankful that Amber mentioned her legs hurting. It was completely unrelated to Sophie's problem, but it held us there long enough for Dr. Garrison to get worried about what she was looking at. She told us later that once reverse blood flow presents itself, there's really only a 24-48 hour window before serious damage is done. God is good.

Amber was incredibly brave...through several blown IV attempts and two spinals. She never really flinched. I've never been prouder of her. Sophie came out without a sound but thankfully, the anesthesiologist was quick to let us know that was normal for 29 week babies. We listened with our breath held until the nurses made her mad enough sticking the breathing stuff down her throat that she made a tiny little cry. The color of her skin looked just like ours.

Then they announced Mattie was here...and no sound. She was as red as a beet. That worried me because I knew how normal Sophie looked. Of course, when I asked how long Mattie would stay red, I found out how ignorant I am.... Newborn babies are supposed to be red...Sophie was the wrong color.

Sophie's red blood cell count is a little low, so she is getting blood transfusions every once in a while. Mattie is still as red as can be. They are both beautiful. Sophie weighs in at 2 lbs 5 oz and Mattie at 2 lbs 9 oz. They both have more tubes and IVs coming out of them than I care to count.

I can't wait to hold them. We're hoping that will happen in a week or two. Right now, both girls are learning to breath on their own. The last time I checked they had been weaned down to %30 on the intubation. (I have no idea if I'm saying that right or explaining it right. When they get to %0 they'll be breathing on their own.)

We are thinking about staying at the Ronald McDonald house at least a little. We're not sure when Amber will get discharged yet. I'm so proud of all of my girls, and I'm so thankful that God knows them infinitely better and loves them infinitely more than I can. I was excited about them coming but found out last night that I was not quite ready. It was time for them to come whether I was ready or not. I'm doing my best to rest in the fact that God is never caught off guard.

"Oh no! Their babies got switched!"

The doctor called today around 12 to see if we could come in at 3 instead of waiting until tomorrow for scheduling purposes. So...off we went to Nashville again. For those of you who have normal pregnancies, I have to say, I actually feel a little sorry for you. From what I hear, you usually only get one or two ultrasounds. We've been blessed to see our babies almost every day this week and at least once a month before that. Once again, the session took a good long time because neither of my daughters seem to want to be in a position that would help anyone.

We had a new ultra sound technician who had just been filled in a little on the circumstance, but hadn't been involved yet. She did the exam and talked to us most of the way through about how much trouble we were going to have with our daughters once they were here. (I've already threatened both of them with spankings as soon as they come out if they don't start cooperating better!) When she was finally done, she took the results to the doctor. When the doctor came in, for the first time since we met her, she was in a full smile. Her comment to the technician was something to the effect of, "Are you sure this is the same patient?"

God is incredible! Not only had things not gotten worse, which is really what you hope for with TTT- a prolonging of the pregnancy until it gets bad enough they need to come out- they had improved so much that it looks like there was nothing ever wrong in the first place. Both fluid levels are very normal. Both girls are getting the proper amount of blood. Both girls are the exact same normal size and weight!

Amber told Natalie Thomas about the exam and the doctor's comment about them looking like completely different babies and Natalie passed the word on to Joseph. Joseph, I imagine, rather sincerely then exclaimed, "Oh no, their babies got switched!"

I believe very strongly in the power of God. I don't have it worked out in my mind yet how God answers prayers exactly, but I believe without a shadow of a doubt that prayers for our peace throughout this week were answered. The phrase "peace that passes understanding" comes to mind. Our babies weren't switched for healthy ones, they were saved for a life in God because of prayers.

We will continue to go twice a week to keep a close watch on the situation and when the time is right, Amber and I will welcome two beautiful girls into God's world. I've been told that I'll never get another good night's sleep for the rest of my life. That's ok. I know there could be another scary time before the girls are here and I know there will be plenty of scary times as they grow. But I also know God is powerful enough and loving enough to die for my daughters, so I know He will do what's best for them today and for the rest of their lives as well.

gratitude

Well, we didn't make it quite all the way home, but we could if we really wanted. We were discharged this morning around 11:00. The Dr. did one final ultrasound and saw both babies practice breathing. That was one of the last things they needed to see to be sure that they were progressing normally. She barely spotted Sophie's bladder again, and while it is a little small, it did have some urine in it, which is a great thing. She told us we could go home, but we checked to see how far away from the hospital we needed to be in case something goes wrong, and she did advise to stay close by if possible.

So...we are in Spring Hill at Amber's parent's house. She is finally sleeping peacefully without worrying about when the nurse is going to come and hunt another heartbeat, which never really seemed to work out anyway. :) We will go back on Tuesday to monitor everything and if everything still looks good, we will have another checkup on Friday. Basically, we are waiting on "go" to take the babies out as soon as the womb is no longer the best place for them to thrive. TTT is not something that can be fixed, it's just monitored and postponed as long as possible. Once the babies are born and not sharing a placenta, we get to look forward to the rest of parenthood. :)

Amber and I have both been blown away by the number of calls, texts, messages, and prayers that have been said on behalf of our family. To be honest it is overwhelming. On the ride to to Spring Hill today, we talked about how humbling it has been. It opened our eyes to how needed it is to show that kind of support to others when they are going through a hard time. I want to say personally that I am sorry to anyone that I have not shown this kind of attention to when you needed it. We are eternally grateful for the outpouring of love and support, and most importantly prayers. We know that whether the babies are born today, Tuesday, Friday, or in June, they are in God's hands and He has overwhelmed us with His love through all of you this week. We have no doubt of His love. The passage that kept running through my head all day Tuesday is "He who did not spare His own Son but gave Him up for us. Will He not also give us all things freely." (at least that's how I remembered it in the moment anyway. Your love reinforced that knowledge. Thank you.

Lord-willing, this will be the last post until Tuesday after the appointment. This time, though, we'll take an overnight bag just in case. :)

going home!...

...hopefully. The doctors were encouraged enough by the ultra sound that we are possible going home tomorrow saving bad news...which we are not expecting. They drew some blood on Amber to run some tests and make sure there is nothing else going on. As long as those come back ok and the babies monitor well one more time in the morning, we should be free to go. The plan from there will then be to come back on Tuesday for another ultra sound. Basically, as long as the girls are doing well and growing normally, we'll keep watching and waiting. If the fluid fills up again, there is a possibility of another amnio reduction. As soon as the girls are not doing well in the womb, they will take them out. For now, we are infinitely grateful and hopeful to reach week 29. God is very good.

two bladders!

I'm pretty sure that this is the only time in my life that I was really excited to see a bladder. We just finished a very long ultra sound to determine how well the amnio reduction worked. We haven't spoken to the doctor yet, but we knew that finding the bladder and seeing the fluid level in each sac was very important. Needless to say, we were pretty excited to see both girls floating around in their own urine (I know! I had no idea that's what the fluid was before this week). When the technician spotted Sophie's bladder right off, I didn't really care what happened after that. I would still be happy. They still couldn't prove that the girls heart rates were exactly right but they don't seem to be to worried about it because the girls are still so young and they are so active it's hard to see much at all. Here's a picture of each of them...they don't look very different. We're both hoping they got Amber's nose. I guess it's still to early to tell. Right now we're just thanking God for two bladders!

Which twin is which?

Amber informend me that I needed to explain how we know which twin is which. As far as the medical people go, the twins are "baby A" and "baby B." Twins come in all kinds of different combinations as far as how they are positioned int he womb. Ours are in separate sacs but share a placent. At the very beginning of our checkups, the ultrasound technician found which sac was positioned closer to the cervix. That twin is thereafter labeled "Baby A" because unless something goes wrong, she will be born first. The baby further away from the cerviz then becomes "Baby B." I'm not entirely sure how Amber decided which was which once we go tot that point other than she always thought of the low kics as Sophie's and the kicks in her ribs as Mattie's. So that is how we know which twin is which.

Incidentally, we're pretty sure now the girls are identical. From what I've studied, Twin to Twin Transfusion almost always happens in identical twins.... So the question of "how do you know which twin is which?" is probably easier to answer now than it will be for the rest of their lives? We're thinking about tattoing "A" and "B" on their foreheads just for old times sake. :)

catch me if you can...

Just in case you were wondering how we are spending most of our time here, I thought I would fill you in on the most common occurence...the nurses trying to find Mattie's heart beat. Other than the ultra sounds and amnio reduction, that's really about all we've done. They want to see both girls as "reactive" which has to do with their heart rates rising to an appropriate level and staying there for an appropriate amount of time based on their activity. In other words, if you move around your pulse goes up until you calm down. That's good and normal and shows that everything is working properly. If the heart rate is static, it means the heart and nerological stuff aren't hooking up quite right. At 28 weeks, they want to see the beats per minute (bpm) rise 10 points and stay up for 10 seconds twice in a 20 minute monitoring session.

A monitoring session consists of the nurses bringing in a machine, putting straps around Amber's belly and then using palm size monitors that are basically digital stethoscopes. They position one monitor over each baby and the monitor tracks the heart beats...ideally.

The problem is that our children have apparently inherited Amber's stubbornness and my hyperactivity. Since Tuesday night, nurses have been finding heart beats, pulling the straps on, losing heart beats, re-finding heartbeats, pulling straps on, losing heart beats again as soon as the strap gets on. The general rule is that the nurse gets Sophie "online" first since she has less room to move around and is therefore a little more stationary. Then she'll go to work on Mattie who has plenty of room to move, and apparently hates sound monitors. After several minutes, they will finally find Mattie and just when she settles in, Sophie gets lost and the process starts all over.

We've become something of a legend among the nurses because it usually takes two of them closer to 45 minutes to get a 20 minute session. They have finally given up on the straps and just hold them the whole time. Needless to say, Amber's belly has been gelled for somewhere around 20-30 hours since we've been here! I say "keep it up girls! I wouldn't want someone pointing a monitor at me either!"

Waiting...

Well, we've been here since Tuesday afternoon now. (It's currently 7:30 Thursday night). We started with a routine checkup in Franklin on Tuesday without a thought given to the idea that something could go wrong...all the other checkups had gone perfectly. Now we are praying that the amniocentesis was effective and will buy more time in the womb for Mattie and Sophie. Without going into too much detail, Twin to Twin Transfusion sydrome is when twins share a placenta and because of some problems with the veins that run through the placenta, one twin doesn't recieve enough blood and nutrients and the other recieves too much. This presents itself when the twin recieving too much blood, the "receiver" (Mattie) has too much fluid in her sac and the baby not recieving enough, the "donor" (Sophie) doesn't have enough. Amniocentesis Reduction is a procedure to pull some fluid out of Mattie's sac in order to keep her from being overloaded and to give Sophie more space to move around, hopefully encouraging her to start producing fluid again.

The Amnio reduction went well yesterday and at first glance the heartbeats seemed to improve a little. They were already pretty good and the sizes and weights of both girls are fairly normal, so these are all good signs. Unfortunately, Mattie's heart beat still isn't exactly right, and they have not been able to confirm Sophie's bladder on ultrasound or through monitoring yet, and that is what we are waiting to learn tomorrow. From what I understand, if both girls are doing well, and Sophie is producing fluid, we will continue waiting with Amber on bed rest. (Not sure if that's at the hospital or at home). Every day the babies can stay in the womb safely increases the odds of health after birth. If Sophie is not producing fluid or if they are not responding well, the doctors will discuss how soon a c-section needs to be performed.

Amber has recieved two doses of steriods which will help jumpstart the girls lungs and other organs when they are born early. Basically, it's a game of trying to decide which environment is better for the girls at 28 weeks, in the womb or the NICU. Obviously, the first choice is to stay in the womb as long as it is safe for the girls. Either way though, we know God is in control and we're trusting in Him. If you see this tonight, please pray for the ultra sound to reveal Sophie's bladder and both girls practice breathing.

We have so much to be thankful for already and we look forward to thanking God for bringing us through all of this.