Friday, February 27, 2009

Busy, Busy!

It has been a hectic week to say the least. Who knew that twins could be so much work! My parents have been huge life savers or should I say sanity savers. My mom and dad have been alternating during the week to come and help me with the boys, clean house, and even do our laundry while Ryan is at work! I just need an extra set of hands then I would be fine on my own:-)

Monday, February 23, 2009

100 Days and Finally Home!

That's right...Reed is finally home!! He actually got released on his 100th day at Vanderbilt Children's Hospital. I was not going to post about the possibility of him getting to come home because every other time that I have done that, he has done something to mess it up:-)
We left the hospital around 3:30 on Friday afternoon and this is what the boys came home in. I did have their pretty day gowns ironed for them but we decided this coming home was going to be a little bit more layed back! Reed was the bigger baby at birth but Braden has definitely passed him. After lying in a bed for 100 days, it is hard to stay caught up to his brother. Reed is only about 9 pounds right now and his muscle tone is pretty weak. He will catch up but it is going to take some time. I am sure that Braden will not let him get too far behind.This was one of Reed's doctors at VU. Dr. Langley has to do rotations and she was with us when Reed was in the NICU and ended with him in on the 6th floor. Our complete family ready to go home!
Reed's first carseat experience. He went right to sleep when we got in the car. I hope that Reed is rubbing off on Braden for how to behave in his carseat. Braden likes to cry for a few minutes then tires himself out but he went right to sleep with no fight that afternoon. Our sweet boys home at last together. They better get used to hanging out with one another since they will be confined to home for February and March:-) Reed has to stay away from big crowds at first but can have visitors as long as they remember to wash their hands. However, we need to keep him away from little kids since they are little carriers of all kinds of sicknesses. How in the world am I going to balance both of these boys as the same time???? I am super excited to have Reed home, but I am a little stressed about giving the care and attention they both need. I am going to have to suck it up and just be able to ask for help. Those cute green and white striped polos on the back of the chair were the boys' coming home gifts from the Crawfords!
I will need to take some pictures of the boys in their Sunday clothes since they will not be able to wear those for a while. I will save that for a day that I have too much time on my don't be expecting those pictures any time soon. Reed taking his little bottle. He is practicing this along with getting milk through the tube. Please pray that he will continue to improve in taking a bottle and not need his tube much longer. We need this little guys to put on some pounds! Reed chillin' in the boppy. Doesn't he look happy to be home?! Braden chilin' on the couch catching up on some Baby Einstein that he has missed going back and forth to Vandy every day! Braden was carrying on a little conversation with Reed trying to tell him what all that he has missed out on at home. I am so excited to watch them grow and watch their bond as brothers grow strong! This was us hanging out on Saturday. The boys once again in Polo!
So I had this bright idea to take the boys out for a stroller ride since I bought a double jogging stroller. It was a little cool outside, but Ryan and I bundled them up to go out. As you can tell below, the trip did not go so well! Ryan and I got them in the stroller, Reed starting crying, Braden then started to cry, but I thought they might quit when we started strolling. Wrong!! We made it maybe to our next door neighbors driveway and turned around! So here were our Two Angry Bears that both went to sleep five minutes after we got in the door. That's not a bad trade-off if they would both go to sleep each time:-)
Reed's first bath went well. He cried at first but then really seemed to like it. His scars are all healed up so they can be in water. I love this picture of my dad with Reed. Don't you just love his mohawk hair cut thanks to his IV line that was in his head. Most parents worry about their sons going to camp coming home with some crazy hair cut but I have already experienced that with a 3 month old! Braden is not for sure what to think about his brother coming home. Thankfully he loves to play by himself for a good part of the day but don't get me wrong, he loves to be walked around too!
Today, Reed had his first check-up with Dr. Dodd. He will go every Monday and Thursday for 3 weeks, then just every Monday for 6 weeks, then every other week and so on and so on! He did very well while getting his echo done and his EKG. He threw a fit when he was getting his temperature taken..go figure! Hisheart still looks great. We still need prayers for this little guy because he is never in the clear with his new heart! We are so very very thankful to have him home with us!

Friday, February 20, 2009

100 Days!

Yes, that is right...Reed has been in Vanderbilt Children's Hospital for 100 days. Even though it has been a long 100 days, we have so very much to be thankful for. Reed is doing great since his transplant, and we are so blessed for how far he has come in these 100 days. God has blessed Ryan and I with Reed and Braden and we cannot imagine our lives without these boys.
We owe huge thank you's to so many of you for bringing us food, helping with Braden, visiting Reed in the hospital, and the list could go on and on. But the most important thing that we need to thank you for is praying for our sweet little Reed. It is amazing to step back and see what this little 3 month old has already been through in his life and we owe God all of the glory!

So here is what I would love for each of you to do that have followed this blog and prayed for our family during these times. I would love for you to either leave a comment, your favorite scripture, a note to Reed, or just to simply say you were praying him during these past 100 days.

Now for those of you like my nanny who do not know how to leave a comment, here is what you will do:
1) Click on the pink link below that says # comments.
2) This will open a new page where you will see a box titled "Leave your Comment"
3) Type what you would like
4)Then type the word verification word. This is just simply typing the word that you see above the word verification box.
5)Under "Choose an identity," click the button for Name/URL and just enter your name. You do not have to type in a URL. OR you can click anonymous if you would like to.
6)Finally, click "Publish your Comment"

I am going to get a book made from this blog, and I would love for our boys to know who all prayed for the two of them, especially for Reed's surgery! I know that there are a lot of prayer warriors out there and I would love to see how many people that God used to help us get through this time in our lives. THANK YOU FOR YOUR PRAYERS!!!

Wednesday, February 18, 2009

Two Good Days

After my post on Monday, things have settled down quite a bit! Reed has been very good today and yesterday. They lowered his dose of magnesium that he gets each day and he has tolerated it well so far! He has also kept his milk down for the most part except for a couple of big spit ups. This is to be expected with his reflux, milk intake, and the amount of medicines that he gets. Please pray that this new feeding schedule will continue to go well and that he will eventually take everything by mouth and have no need for the tube. Here is the way he is being fed for three hour intervals: (He must take a total of 60 cc's of milk in three hours)
1) Take as much by bottle that he will take in 20 minutes. Whatever is left from the 60 cc's is then put in his bag that goes through the tube. The remaining amount will be given slowly to him in the remaining three hour time interval.
2)Our ulitmate goal is for hi to take all 60 cc's and have no need for the tube feedings. This will probably be a slow process that we will work on.

Reed and Braden still love this mobile. My mom even ordered one on internet since they love it so much. Who knew that birds could be so entertaining!
Reed was worn out today after his bottle feeding!
Reed has really discovered his little fingers this past week. This is one reason we have to be really careful about washing our hands because he loves to put everything in his mouth right now!
Braden was decked out in his little bear coat that Maureen Proctor got the boys. I absolutely love them!
My favorite pic of Braden for this week! "Enough of the photo shoot mom, please get me out of this coat since I'm inside!"

Monday, February 16, 2009

The Ride Continues!

Mondays seem to be the days that Reed likes to keep everyone on their toes. The day started with him having a high temperature and heart rate. They drew blood for a culture to make sure that he does not have an infection. Nothing has grown as of today but they have to let it grow for 48 hours to be sure. They are putting him on antibiotics just in case he does have an infection. Every other time that they checked his temperature today, it was fine. Also his echo showed his heart function to still be great!
Now for the fun part! He has been spitting up and throwing up a couple of times today. When Dr. Dodd, the heart transplant doctor, was checking on him today, he totally lost it. He was madder than I have ever seen a baby and nothing would calm him down. His heart rate got all the way up to 203 beats per minute and he was screaming like he was in a lot of pain. I was standing there feeling about as helpless as a mom can feel and getting quite worried. Finally, I sat him up, rubbed his back and he threw up. After that, he was totally fine and went right to sleep. Dr. Dodd said that it was a very good sign for his heart function that it could get that high, come back down and regulate itself. She said that a lot of transplanted hearts just stay at one level and do not do a good job regulating themselves. I was sitting there thinking to myself "a heart rate of 203, are you crazy... but I'm glad you think that is a good sign" HA!!
Now let me try to explain why the doctor thinks he did this today:
Reed gets medicines at 6am, 10am, 2pm, and 10pm every day. Reed is on a medicine called lasix to help him pee off extra fluid from his body which in return causes his electrolytes to be low causing his mag. and potassium levels to be low. Therefor, Reed has to get extra magnesium and potassium which can cause your stomach to have sharp pains. They increased his magnesium input this past Friday which is when he began spitting up his milk. This has gotten progressively worse over the weekend. So it is going to be a balancing act to get his medicine right along with him keeping his milk down. Please pray that the doctors will have the wisdom to figure out what works for Mr. Reed so that he can get the medicines he needs and the nutrition he needs to gain weight. Sorry for such a long explanation!

On a lighter note, here are some pictures of the boys this weekend sporting their favorite teams! I promise that Braden wears more than just polo outfits but it seems that every picture he wears polo. I however cannot say the same for Reed's outfits....he loves to be shirtless!
Braden has really started to develop more of a personality this past week. He also loves to chew on his hands.

He also loves Baby Einstein videos. I thought I would try one the other day and he sat there for 30 minutes watching it.
My mom gave him this ugly tye-dyed bunny and he loves that too. Can't you tell by the expression on his face below:-)
Braden loves to see the world. He cannot stand it if he thinks that he is missing out on something. I think that he is going to be a little like his mom...a talker and always wanting to know what is going on!
Ryan was singing a song to Reed and this was the response that he was getting out of him. The lyrics said something like "So guys don't bring your girl to meet me, cause I'm a flirt. And baby don't bring your girlfriend to eat, cause I'm a flirt. Please believe it unless your game is tight and you trust her then don't bring her 'round me because I'm a flirt!" If you know Reed then you would understand that he really is a flirt with all the ladies at Vanderbilt!
Please continue to pray for us. Who knows when we will get to go home but it will happen when the time is right. Reed is in the best care at Vandy and they will send him home when the time is right. It is a little hard to keep waiting but what are a few more days or weeks added onto 97 days at the hospital!!!!