update #2 for today

Okay, in last two hours Carson peed out 10 cc each hour!!! YEAH!!! Celebrating over the little things in life : ) All I can say is it is a rollercoaster with babies in the NICU. Now, the surgeon is wanting another test, he says he can't do it until Monday and then surgery on Tuesday. I really just don't see how Carson can make it that long. And all of us that work in hospitals know, things get bumped... for emergencies. THIS IS AN EMERGENCY in my mind! Working on being a slightly squeaky wheel (but kind at the same time) to get this study completed faster and Carson on his way to recovery. Kellen, by the way, is doing marvelously!!! Getting 10 cc of real formula every 3 hours and doing fantastic on his nasal cannula.

Posted by Sarah

update #1 for today

Here is the situation. They have a wonderful staff of multidisciplinary doctors working on the best way to have a successful surgery and not result in life-threatening loss of blood or injury to nerves. The mass is more extensive than really anyone expected and not something that has really ever been seen before. There is not a lot of precedence so they are all working together to help Carson. As a result, Dr. Yang, the main surgeon is ready to perform surgery. However, several of the cardiologists feel it would be very beneficial to get an angiogram and consider clotting off certain arteries about 1 day before surgery to prevent major blood loss. As a result, they need special catheters to do this procedure and can only do it one day before surgery. It is not optimal to do any of the surgeries on the weekend, so we are left with waiting for Monday for the study an the surgery on Tuesday. Carson has held his own today but continues to struggle a great deal with swelling which results in increased fluid in his lungs, more work for his heart, and skin breakdown. Dr. Yang, Dr. Naguchi (the neonatologist), ENT doctors, plastic surgeons, cardiologists, and other surgeons consulted feel it is best to wait since he has stabilized. They are all keeping a very close eye on how he is doing and Dr. Yang says he is ready to go at any time if he makes a turn for the worse. Each surgeon has come by and talked to us and I am very impressed with their compassion, caring attitudes, and willingness to pitch in. I feel much more confident after talking to them than before when we were not sure why we were waiting.

Kellen is doing AMAZING!!! He is getting 10 ml of formula/breast milk (what Liz has been able to pump) every 3 hours and doing quite well. He is off oxygen and just has a little pressure through a nasal cannula to help him remember to breathe. Actually, they feel by morning he will not have any respiratory support he is doing so well. He also is off antibiotics and no signs of any infections. He opened his eyes and smiled and Mom and Dad today. We also got to put Kellen in Carson's bed with him for about 1 hour today and it was beautiful. I was completely impressed that they both had better oxygen saturations than they had all day when they were together. It was their first sleepover : )

Elizabeth is truly one of the strongest and bravest women I know and I couldn't be anymore proud. She has a huge incision but hasn't complained once and none of the surgeons can believe she is up walking let alone visiting her boys. She amazes me.

PRAYER REQUESTS:
1. Guidance for the surgeons to know when they need to do the surgery, God's skill and wisdom directing them in their procedures and ability to work as a group
2. Peace for Liz and Preston and continued healing
3. LOTS OF PEE from Carson
4. No infections and stable lung/heart function in Carson
5. Ability to make it to Tuesday for Carson
6. For the mass to not die anymore creating toxins circulating in Carson's blood
7. No serious nerve/muscle/brain injury from the surgery
8. MIRACLES

Posted by Sarah

update #3 for today

We just got back from the NICU at Cardinal Glennon a while ago. First we verified Carson's weight and he weighs approx. 3 something without the mass. Kellen is 16 in. long and Carson is 15 and a half in. We had a beautiful time with the babies. I got to sing to both, talk to them, and Elizabeth and I both got to hold Kellen. Doug and Preston's parents were there as well. The team of surgeons for the mass came in while we were there and spent considerable time discussing what they found out from the MRI and other tests and then they discussed it with all of us. As Elizabeth said, Carson is deteriorating. His kidneys and 1 lung are not doing well... so much stress from the mass. They need to do the surgery as soon as possible. If they can get all the surgeons together, they hope to do it Friday.
The mass is much more devastating than what was previously thought. They are not sure they will be able to save the branches of the facial nerves. In infants these nerves are the size of a pencil lead... in preemies, much smaller... and they don't know if his heart will be able to handle the surgery. It will be an all day surgery. Some specific things to pray for
that they will be able to find and save the nerves that control the eye... so the eye will be able to close
to find and save the nerves that control the mouth... so it is not droopy
to have enough facial tissue to cover the face once the mass is off.
naturally for our Great Divine Physician to direct every move of the surgeon's hands and to direct their thoughts
for continued strength and grace for Preston and Elizabeth... and our family... We did share a fair amount of tears this afternoon. Preston Eizabeth and I have had some good time back in her room... just talking through the information and our emotions.
When I was processing this all... Mark 10:27 'With man things may not be possible,but with God all things are possible" and I don't know the verse number but the verse is Jesus' words "Do not fear, only believe" came to my mind

Thank you thank you thank you

Posted by Francie

update #2 for today

Elizabeth is doing great... has all the IV's out, is walking, eating solid food, and has pumped 4 times now.  She asked me to french braid her hair ... as she has not been able to wash it for many days... I was absolutely thrilled...She is still moving slow... but so much better.
Another blessing is that I got to do Preston's laundry...
Doug got to spend the night in the NICU.
Preston's parents and Doug have spent today with the babies.
They have done the CT scan and MRI on Carson this afternoon. We are anxiously awaiting the results and when they decide to do the surgery. Kellen loves the pacifier... they say he has a temper when he loses his pacifier. Preston, Elizabeth and I are heading her over to Cardinal Glennon now. They said Elizabeth and Preston may get to hold Kellen.

Thank you so very very much for the continued prayers.... for miracles concerning the removal of this mass on our dear baby.

Posted by Francie

update #1 for today

Hello to all, I got to spend the entire afternoon with my nephews in the NICU b/c Liz was at the other hospital. James and I heard Baby B cry for the first time after he was extubated. I cannot tell you how much I already love those two precious babies. I have included a picture of Baby B. It isn't the best but we haven't gotten others downloaded. Please be praying b/c they are doing a lot of imaging and discussing today and tomorrow about surgery for Baby A, Carson David is his name. I really want him to have surgery on Friday but they are thinking about waiting until Tuesday. We are not going to circulate pics of Baby A, Carson, yet but he is truly beautiful and already a little fighter. Liz is doing MUCH better and I am so incredibly thankful. I think we will have a name today for Baby B b/c Liz will actually get to spend some time with them. The mass on Carson is large, but we know God is bigger and will help the surgeons do a fantastic job.

Posted by Sarah

update #2 for today

A last update for today-

Elizabeth continues to improve... tis a slow process, but I am loving every minute I get to spend with her, helping her turn from side to side, feeding her orange jello:), and adjusting whatever.
Sarah and James got to spend most of the afternoon with the babies in NICU and were there when they took the breathing tube out of BAby B, which allowed our lil guy to cry for the first time. James recorded it on his phone and brought it over to all of us so we all got to hear his first cry.
Doug is planning to spend the night in the NICU with his grandbabies.
Testing will continue tomorrow to assess the mass. Dr. Vlastos came in and explained sooo much. They are really not sure what is all involved with the mass... so I continue to pray for miracles for our lil angel. The mass is really massive.

Thank you from the bottom of my heart and toes!

Posted by Francie

update #1 for today

Some of you may already know all or most of this. The babies were born this morning at 9:48 and 9:49. They were able to establish an airway on Baby A - which they named Carson David. They plan to do an MRI soon, maybe tomorrow, to view the mass and strategically plan a surgical removal as the mass is very complex and very large. Baby B's weight is 3 lbs, 13 oz. and they won't know an actual weight on Baby A until the mass is removed which they are tentatively talking about Friday to maybe next Tuesday. Elizabeth was quite nauseated and is on clear liquids - and is pretty sore. She has been transferred back to St. Marys and will begin pumping milk for the babies. She will be able to get a 'pass' to go see the babies daily. All heart and other major organ functions look good on both babies from what they can tell. I think that's all we know for now. As we hear more I will pass on more info. Please email me if you don't hear from me.  

They have not named Baby B yet as Elizabeth has not even gotten to see him yet. She will tomorrow and we may have a name by then. Baby B even had to be intubated becase of being born early and lower birthweight but has already been extubated and is doing well. James and Sarah spent most of the day with the babies. The were on 'baby duty' and were there when the baby was extubated. James recorded the baby's first cries and took it to the rest of the family to hear... :) Please continue praying for miracles for the removal of the mass and not complications! The doctor came in the evening to really explain alot to the family. The doctors really aren't even sure what all is involved with the mass at this time so the imaging that is planned will really help them

Posted by Alice