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

31.5 week update

Sending greetings from St. Louis (Let's go Cards!). Preston and I made the temporary move up to St. Louis last Sunday and are so appreciative for the couple that are letting us stay at their home. We had two appointments this week. I had an appointment to establish prenatal care in St. Louis with Dr. Vlastos Monday. Good news the beginning of this week was that my cervix remained unchanged (compared to last week). Then we had another ultrasound and MRI (which should give more detailed imaging of the mass - including where the blood supply is coming from, what other structures are involved, and if there is any airway compromise due to the mass). I was waiting to send out my update because I was hoping to get results back from the MRI. But seeing that it is 4:30 on a Friday. I think we will have to wait until next week. I guess, no news is good news at this point. Otherwise, we did find out that the fluid levels continue to remain stable. And there aren't any extreme markers showing anemia or heart enlargement which would lead you to believe that the mass is stealing too much blood from Baby A. This week, it didn't appear that the mass had grown as much so again that is good news. The babies will get 'weighed' again next week and hopefully we will get some more information from the MRI. 

Thank you for your continued prayers and support. You all are AMAZING!!

Love,
Liz

30.5 week update

Hello to all! Well Preston and I will be heading up to St. Louis to stay. Yep...with this world series going on, we couldn't stay away : ) JK, actually the pregnancy is advancing (some cervical changes were noted this week - it is starting to shorten) so our doctor felt like it would be best for us to be closer to St. Louis in the event I went into labor (as it is VERY important that we are in St. Louis to deliver). So one of mom's friends has been gracious enough to let us stay with her. We will head up Sunday. Luckily, I am not yet on complete bedrest. Dr. Vlastos called it 'modified bedrest.' Today was my last day at work.

The babies were still trucking along...just getting a little anxious to get out apparently : ) The baby's fluid levels are remaining stable (meaning Baby A is still able to swallow). Baby A was 3 lb 9 oz and Baby B was 3 lb 7 oz - which are both about average size at this point. We also had an echocardiogram, which showed normal heart function for both. Baby A's heart walls were slightly thickened (due to having to work extra hard supplying blood for the mass and his own self) however they weren't too concerned with this. They thought that this should resolve after birth.

So, as the time draws nearer, we just asked for continued prayers for the delivery process. First, the best case scenario is that the whole procedure is planned and secondly, that they are able to secure an airway on Baby A (before Baby B starts showing any signs of stress) otherwise Baby A's health and life is placed in jeporady.

We so appreciate the support and prayers!

Love,
~Liz