Jinxed!

We have had a good week so far. I think that I jinxed Reed by bragging on how well he was doing with his bottles with no tube. He decided this past weekend that he was not going to drink 120 ml's every bottle which means that the tube has to go back in. He is still doing good with his bottles but is averaging around 80-90 ml's each bottle. I still think that the little guy is getting a TON of food and calories for his size. The doctor is trying to get him caught up to where he should be for his age. I do not think that he will get rid of the tube for good until he gets caught up. It definitely makes his medicine giving a whole lot easier with the tube:-)
Little Reed gets 720 calories a day from his milk whereas Braden gets at most 600 calories a day. I think that Reed gets pretty full on his bottles since his body cannot 'get rid' of all the intake that he gets. Reed even gained 10 ounces in a week getting him to 13 lbs. 8 oz!!!!! Both boys mesmerized by Baby Einstein!
We have seen improvement in Reed's eyes this week. Praise God! He is tracking some and seems more like "old" Reed to us. He still has room for improvement in his eyes but we are so very thankful for the progress that he has made in 3 weeks.
We LOVE the outside. Every day that it has been nice we have taken the boys outside. They both seem to love the outdoors as much as I do and will sit out there for hours. We, of course, make sure that they stay in the shade!
My granny feeding Braden and watching Reed swing.
Enjoying the pretty day with their pawpaw and great granny!
I hesitated putting this picture on here but it was too funny not to. Braden loves to kick his legs over and over until he gets in this position in his bouncy seat. Don't worry...I was sitting right there beside him making sure that he did not fall.
Braden is getting to be such a big boy. He absolutely loves to stand any chance that he gets...of course with some assistance.
Thanks Aunt Tina for the boys' chairs. I know that they will be getting a lot of use out of these in the future.
If you haven't seen one of these "Hoops and Yoyo" cards then you need to go buy one. I think that they are hilarious and Braden loves them too.
Reed playing on the Einstein mat
Look at Braden's legs compared to Reeds! You gotta love em'! Reed with his ugly tube back in...oh well there are much bigger things in life to care about than looks!!! I do have to say that it is hilarious how curious people are. We took the boys to the flea market Saturday and people cannot help but to stare and wonder about Reed's tube and places on his head. I sometimes think that we would be better off by putting a sign on Reed that says "I have had a heart transplant and brain surgery!" One lady said "Oh, did he fall on his head?"

Today, my dad and I went shopping at Sam's and this little boy came up to me and asked "What is that tube coming out of his nose for?" I told him that he gets a bottle and whatever he doesn't drink he gets through the tube. His response was "How cool!"

I think that adults need a lesson from children sometimes. I think that it is better to just ask instead of just stare! (This is just the way I feel and I am sure that everyone doesn't handle it the same way that I do) It doesn't bother me at all but I can totally see how important it is to be careful with how we stare or look at others that may be a little different!!!

Thanks again for all the prayers! I thank God every day for the incredible blessing that he has bestowed upon Ryan and me with Braden and Reed.

Braden and Reed hanging out on the couch last Saturday. They love to have the deer in headlights look for pictures!
Braden's serious look...look at that belly on him!
Reed's awesome haircut. The surgeon who did the bur holes even gave me the bag with his hair in it for his baby book. I couldn't tell him but I am not counting that as Reed's first haircut. If that was the case, Reed has had many "first haircuts" since he has been in the hospital for 109 days of his first five months!
I am just so glad that Reed is not a little girl who's hair got messed up and has a ton of scars. The ladies will love Reed's scars when he is older where a girl would probably care about the scars:-)

Our little Braden is definitely a people person. He is pretty easy to get a smile out of just by talking to him. I cannot believe how quickly they grow but I am loving every minute of it! Braden is a little chunker...I weighed him on our scale at home and I think he is getting close to 16 pounds. He doesn't have a lot of rolls on him but he is just solid. Who would have ever thought that our growth restricted Twin A that the doctors were worried about would be so healthy now!

My two little monkeys getting ready for bed....

....let's make that two little monkeys and one big monkey!!!

Braden with Ryan's KU hat on. Since Kentucky got Memphis' old coach hopefully we will have a fierce competition on our hands for March madness next year. Stay tuned to see who the boys end of cheering for...UK or KU!

Last Saturday night with Reed's tube still in.

Sunday morning with Reed's tube out! That's right, Reed is doing great with his bottles ever since he came home from the hospital. (once again the deer in headlights look)

Here is my mom's philosophy with the whole bleeding on the brain scenario since the doctors don't understand it all:Even since Reed came home from the hospital after his heart transplant, it was always a struggle to get Reed to take his bottle. We would have to trick him with his pacifier then stick the bottle in his mouth. Once he latched on, we could not take the bottle out of his mouth because the chances that he would take it again were pretty slim. He was averaging around 60 ml's a day the week before he went to the ER. We thought he was doing great.Ever since he has come home, he is taking every bottle with no fight at all!! He does not have to be tricked....we can burp him in the middle, change his diaper or whatever and he will still take it. Get this though, he will take 120 ml's every bottle. My mom's philosophy, which makes sense to all of us, is that he came home from the hospital the first time with pressure/blood on his brain. I do not think that it is just coincidence that he now takes his bottles with no problem.

Braden ready for church with his cute Feltman brother's train outfit on.

Bumbo time

Reed is still working on his neck strength. He is getting better holding it up but he still has a ways to go. Please continue to pray for Reed and for him to make a full recovery.

As far as his vision is concerned, we have seen improvement this week. He will actually look at us and smile now and even follow you, most of the time, when you move. His eyes also still have a ways to go to get back to normal but please continue to pray for this too! Ryan and I appreciate so much all of the prayers, and we know that is why Reed is doing as well as he is with all that he has been through. Thank you so much!

My dad getting the boys ready for bed!

Home Again!

Sorry that it has been so long since I last posted. Thank you all so much for all of your prayers offered on our behalf. Reed got to come home this past Monday and boy was it a stressful week at the hospital...that is a separate post for later:-)
A week before Easter, Reed was rushed to Vanderbilt Hospital because he went completely limp at his night feeding and non-responsive. Ryan and I rushed Reed over to our next door neighbor's house, who is a nurse at VU, and banged on their door. Reed never quit breathing but he was very lethargic and totally limp. I cannot explain to you the fear that Ryan and I felt at that moment. I really and truly thought that out little Reed was not going to make it. Of course our first thought was that his heart was failing. I do not know how many of you have ever experienced an emergency situation with your child but it is fear that I NEVER want to experience again!
To make a really long story shorter, Reed had chronic and acute bleeding on his brain and bleeding behind his eyes. We have no idea what caused this and neither do the doctors.
They decided to drain off the blood around his brain on Sunday night around 6 pm. Here are some more battle wounds to add to Reed's many other scars! I think I am going to get Aunt Tina to shave his hair completely except leave a mohawk down the middle! What do you think?!?
The following Monday and Tuesday were very scary for us. Reed was not himself at all. His eyes would go to one side and completely stop for several minutes. They hooked him up to an EEG to check for seizure activity and he was having seizures. The doctors think this may be due to the blood irritating his brain and they can also be caused from the bur holes that were done in his brain to remove the blood. He is now on a low dose of seizure medicine but this will probably be temporary.
Our big prayer request now is for Reed to regain his full sight back. With retinal hemorrhaging, it can take weeks to months for the body to reabsorb the blood back. We have faith that this too will heal itself but Reed needs all the prayers that he can get:-) He is normal Reed but he just does not fix and follow with his eyes so we do not know what all he can see. This is going to require a lot of patience on our part too to patiently wait for his vision to return!
Braden is exhausted too from his brother being in the hospital. I cannot express to you the joy that this little guy brings to us when going through these stressful times. He has made these past 5 months much more manageable for us. Braden has been such a flexible baby to be on the go for so much during his first five months. We are so thankful to have him in our lives with Reed.
Happy Late Easter! (which was spent at the hospital) Hopefully, next year's Easter will be much more enjoyable!Reed at home enjoying his bouncy seat. For some reason, he and Braden love to slide all the way down in their seats and hang onto the bird for dear life. I guess that is why these chairs come with straps! Where Reed gets to sit during dinner when he gets tired of the bouncy seat:-)
Even though Reed does not necessarily look right at us, we can still get that sweet smile out of him! My favorite picture of the week....Reed's skinny foot on the left and Braden's 'full' foot on the right!

Thank you again for all the comments left on our blog....they are such an encouragement to Ryan and me. Please pray for Reed's continued improvement and also for his eyes to regain full sight! God is good!!