Thursday, December 25, 2008
Thank you to Jason Tucker Photography for coming to the hospital to photograph our boys. He did such a good job that several people have asked if Reed is home with us. A little bit of Photoshop helped in erasing some of Reed's connections:-) He also did the pictures of Reed to make a 'body parts' panel for us. It turned out so cute!! Thank you Jason!
Tuesday, December 23, 2008
Reed was moved up on the list today for what size heart he can receive. He can now accept a heart that that is from a child weighing 10 kilos which is about 22 pounds. This is great because it just widens the group that he can receive a heart from. The doctors are very encouraged by Reed's health and they are waiting for a healthy heart. Please continue to pray that Reed will remain healthy while he waits and that his heart will come soon!!!!
Thursday, December 18, 2008
Little Reed still does not have a new heart but he is doing great! This is his new breathing mechanism for this week. It changes all the time. This is called Vapotherm which looks a whole lot better than the CPAP. He may get a little tired on this so they may rotate between this and the CPAP.
The crazy thing on his head measures the amount of oxygen going to his brain. This is to just make sure that everything keeps functioning like it should.
Braden is already tired of Reed getting all the attention. It is still a toss up for who is going to be more spoiled when this is all said and done. Sweet Brothers! Thanks to nurse Jessie for the boys' WubbaNubs which are the pacifiers attached to the stuffed animals. These are great because the boys can hold on to the animal which helps keep the paci in their mouths.
Happy One Month Birthday on December 12, 2008!
Braden's first snow. I know, I am a terrible mom for having him out without socks on and no blanket. We were only outside for a minute! Hopefully Reed will get home soon so he can experience his first snow if we get another one!! Crazy hats that I will only be able to get away with putting on my boys while they are little. If you know me, you know that I absolutely love Christmas, so I couldn't resist these outfits! This Christmas tree hat is one that someone made for children in the NICU. The ladies at the front desk at Vanderbilt always let me get one for Reed and Braden. We have been able to hold Reed just about every day this week. I LOVE being able to do this. We had him out of his bed the other day for about 6 hours and he tolerated it very well. My dad, a.k.a Paw Paw, holding Reed for the first time. He even held him for over an hour this past Sunday.Specific Prayer Requests:
1) Reed will stay healthy as he waits for a heart. It is very important for Reed to not get any type of infection. If he were to get an infection, then he would have to be pulled off of the transplant list until the infection is clear. Please pray for him to reamin healthy!!!
2) That a healthy heart will come SOON.
3) Pray for the family that will be making such a selfless decision to give their child's organs to help another child like Reed.
4) That Ryan and I will maintain a balance between watching over Reed, caring for Braden, Ryan 's work, and just going through each day with a positive and grateful attitude!
We owe a huge thank you to friends and family for the food provided, babysitting for Braden, calls of concern, and most importantly the prayers! God is Good!!
Wednesday, December 10, 2008
Ryan is determined for his boys to be Kansas Jayhawk fans but their mom is still hoping they will be Kentucky Wildcat fans!
We get sleep wherever we can these days:-)
Braden's expression below is priceless. He is thinking "what in the world are they doing to my brother!"
I love this picture of Reed without his CPAP on his face. He is so beautiful and such a fighter!! Plesae pray that he continues to have good days and that all of his other organs continue to work like they should. Each day that he hangs on, we are just that much closer to him getting a new heart!
The hat is a little big right now!
Look how huge Braden's pacifier looks on his little face:-) I cannot wait to show Reed and Braden these pictures when they get older. We are so proud of our boys and how good they both are. Just please continue to pray for Reed's heart to come soon and in the meantime for him to rest comfortably and have no complications. We cherish your prayers so much!!!
Saturday, December 06, 2008
Reed is still hanging in there and doing well. He is still on CPAP, which blows some air into his lungs to help take some of the work off for him. All of his sats have been where they want them to be and he is resting pretty well.
Here are some questions that we get pretty often and here is my best explanation.
Have you all heard anything about a heart and how long will it be?
We are just patiently waiting for the phone call telling us that they have a heart for Reed. They will not tell us anything until they know they have a heart available for him. We do not know how long it will be for that phone call. All we know are the statistics which say that the average waiting time at VU is approximately 3 weeks. Reed will have been on the transplant list for 3 weeks this coming Tuesday. Ryan and I look at it that each day we get through, we are one day closer to that phone call.
Do you get to hold Reed every day?
Ryan and I could hold him every day but it is not worth it to us. Don't get me wrong, I would love to hold him every day!! Reed gets so comfortable in his little bed that we do not want to disturb him. We do hold him occasionaly but not every day.
Can we come visit Reed?
Vanderbilt is pretty strict about who comes in and out of the ICU. However anyone can come to visit Reed as long as one of us are there. Ryan usually goes to the hospital each morning from around 7-10 and we both visit at night around 6:30-9. I will start going up in the afternoons now that I am getting Braden out of the house. If you would like to visit, then just give one of us a call.
What can we do to help?
Thursday, November 27, 2008
On Tuesday, November 11th I was admitted into Vanderbilt Hospital because my blood pressure was 140 over 100. Ryan went home to get our bags and my nurse hooked me up to pitocin. Well, twenty minutes into being hooked up to the pitosin, about 10 doctors and nurses come rushing into my room. The next thing I know I am being hooked up to an oxygen mask and being given a shot in my arm. Keep in mind that Ryan is at home getting our bags so I am kind of freaking out! The doctors were talking about doing an emergency C-section but things eventually calmed down.
Come to find out, my nurse hooked my pitocin line up to my IV line. The pitocin was suppossed to be set at 2 cc's but she hooked it to the IV line which was set at 125 cc's!!!! She left me on this outrageous level for 5 minutes before she realized what she had done. Needless to say, I was not a big fan of hers the rest of her shift!
Tuesday night, I decided it was time for an epidural. To make a long story short, they poked my back 7 times before they got the epidural line in right.
I stayed on the pitocin from noon on Tuesday to 3 pm on the following Wednesday before they decided to do a C-section. I was so drugged up that I barely remember anything from the operating room.
When I woke up, I was in a dark room by myself. Come to find out, I had a seizure after the boys were born so they admitted me to the surgical intensive care unit. I had not even seen my boys and my family could only come during visiting hours. I stayed there overnight and was readmitted into the labor and delivery room where I continued to receive medication for seizures. That Thursday I had to have 3 brain scans done to make sure that there wasn't anything wrong from the seizure. I personally think it was from the overdose and being on too many drugs but who knows!!! At approximately 5 pm Thursday, I was transferred to a regular post pardom room where I stayed until Sunday November 17th. Here is the picture when I first got to meet Braden
Here is Reed before he was hooked up to a million things!
Little Braden that weighed as much as a sack of sugar!
This was taken the Sunday when we were released from the hospital About Reed:
Reed is doing well. He is hooked up to a lot of monitors to make sure that everything is functioning like it should. He has good days and bad days but here lately he has been doing really well. It is a lot of trial and error to figure out what works best to keep the least amount of work for his heart.
Tuesday, November 18, 2008
I am holding Reed and Ryan is holding Braden.
Brothers! As you can see below, Reed is the fatter one of the two! Braden weighed 5.08 lbs and Reed weighed 5.9 lbs. Reed's hair is also darker than Bradens and his head is bigger:-)
Reed is waiting for a whole heart! The team of doctors has decided that a heart transplant will be a better option for him that the 3 stage Norwood procedure. We have been praying this whole time that Reed will be able to do all things like his brother and we believe that God is answering our prayer just a little different than we had planned. When Reed receives a heart, he will have a whole heart instead of half of a functioning heart! PLEASE pray that a heart will become available soon for our little fighter. He is on the top of the list at Vanderbilt!!!!
Thank you for all of the prayers on our behalf. We know that God has a great plan in store for our new family of four! God is good!