Good morning!

Well it is Sunday morning and we have a happy baby up

 here at Texas

 Children's Hospital.  Yesterday was a very hard day when it comes to drawing blood.  After many nurses, a blood specialist, and a transport team they were still unable to get blood from James Thomas.  They said we are so lucky the ER was able to get the IV in him.  Thank you Lord for that!  Without he wouldn't have been able to do any transfusions.  They have decided that tomorrow morning they will put a port in his neck to draw blood from.  This will require us to stay an extra day or two so it looks like we will be here until Wednesday or Thursday of next week.  I am just glad they aren't trying to draw anymore blood.  We have gone back to heel prick only!  

On a happy note, James Thomas hemoglobin was at 8.7 last night!  We have gone from a 3.0 to an 8.7!  I am so proud of him and thank God for the donors of his B positive blood.  I have a whole new appreciation for people who give blood.  They just drew blood to test his levels.  This will be the longest stretch he has gone without blood so we are really anxious to see what his body does.  If the number goes up it means his bone marrow is making some red blood cells.  That is our prayer!  UPDATE:  As I finished that sentence we got a knock at the door.  The doctor came in and said James Thomas' hemoglobin is still at 8.7.  This is good because his body is holding on to the transfusion but did not generate any red blood cells on his own.  He will not need a transfusion today which is great!  They will test again in the morning and if his level drops they will do a quick transfusion before his bone marrow biopsy.  

James went home last night to get some rest!  Nancy stayed with me in the room.  The nurses are amazing and take great care of us!  I have tried to decorate his room with a few pumpkins, pictures, and some stuffed animals people have brought by.  We are so thankful for the prayers, visitors, food, cards, books, and gifts.  God has really showed us compassion and love through our family and friends!  

I am going to upload some pictures of our stay here.  I still can't believe I am on the 9th floor at Texas Children's.  I have truly been brought to my knees.

Love you,

Lindsay

Day 3 at Texas Children's

Good Morning!  We tried to upload this video last night and the internet was so slow so we will try to do it again this morning.  Things are going well at the hospital.  The nurses all love sweet James Thomas and our tech said he was the most popular baby on the floor.  He is happy which is great and they think he is starting to pink up.  We will post new pictures later for you to decide yourself.

We do have a prayer request.  They are having an AWFUL time drawing blood.  They have tried four different times with four different nurses and they keep blowing his veins.  My heart breaks with each scream and wale.  They are calling down a specialty unit to come try again later but they want to take it from his head so I am little sick about that.  PLEASE pray that they get some blood quickly.  We are still on track for our bone marrow biopsy Monday.  They are going to test his levels today to see how many more blood transfusions he needs today.   We still have no prognosis but FINALLY today a resident told us they really think it is a condition called Diamond Blackfan Anemia.  It said that about 5-7 babies out of a million are born with this condition!  I don't see how it could be this form of anemia but they don't have any other leads right now.  We will pray for God's grace as James Thomas' perfect path unfolds.  I really don't know what to ask you to specifically pray for when it comes to diagnosis so we are shooting for miraculous reproduction of his red blood cells.  I will post more later but we won't know anything until next week.

James Thomas is amazing and so happy even in the hospital.  We love you and thank you for your support.

Hemoglobin score of 4.8

The nurse just came in and told us that after two blood transfusions James Thomas' hemoglobin level is at 4.8.  We are so thankful they are going up but he really needs to be at an 8.0 before they will do the bone marrow biopsy.  I learned this morning that the levels must be high because they are afraid to put him under anesthesia when his body is not getting enough oxygen from his blood.  Another concern is that they don't do these biopsies on the weekends so if he doesn't get it today he can't have it until Monday.  After the biopsy is done it takes one to two weeks to get any results so we will get to come home!!!!!  We would like to get the ball moving so please pray that his next transfusion will shoot up his levels.  

He is amazing and so brave.  He has cried only a few times.  They let us dip his pacifier in sugar water and let me tell you, James Thomas LOVES it!!  Right now I have him propped on his boppy watching his favorite baby einstein video.  I on the other hand have been crying off and on since we have been here.  PLEASE PLEASE pray for God to give me the strength to not wear all my emotions on my sleeve.  I want to be happy and smile for my baby boy.  He is probably thinking, "Who is this red eyed, blotchy faced woman?????"  I don't want to be like that for him.  

We are on the 9th floor and it is the hematology/oncology department.  Let me tell you it is so nice.  However, the niceness of it makes me sad (silly I know).  The rooms are set up for kids who are here awhile which is scary.  There is a beautiful family room but get this it is the Ronald McDonald House sponsored room.  I broke into tears when I read that.  How am I at the hospital with my 4 month old son getting water from a Ronald McDonald sponsored area????  This is what I am talking about, pray for peace please!!!  I am thankful for all the wonderful organizations out there because let me tell you it is nice!

O.k. I better close.  We will keep you posted on what is to come later today.  I promise this will soon be the HAPPY blog and not a sad one!  I do believe in that.  

Love you all,

Linday

PS I got a great text that quoted scripture, "  Be strong and courageous.  Do not be terrified; do not be discouraged, for the Lord your God will be with you where ever you go!"   

PSS  The doctor just walked in and we are not doing the test till Monday.  He will probably need 6-8 more transfusions over the course of the weekend before his levels are high enough.  We will be here through at least Tuesday of next week.

James Thomas @ TCH (Video #1)

James Thomas just woke up from a good nap ...

James Thomas @ Texas Children's

Dear Friends,

We have zero cell phone reception so we will update our blog and facebook when we have time. So far, all we know is that James Thomas's hemoglobin is very low and he is most likely anemic. The hospital staff drew more blood a little over an hour ago. We are waiting for the results. We also know James Thomas will be receiving a blood transfusion this evening. Depending on results of the blood tests and transfusion, he might have his bone marrow tested tomorrow. We are being admitted for sure this evening.

Please continue to pray for James Thomas and for us. Also, please pray that his anemia is non-life threatening.

The boys!!!!

I still don't know how to add captions under pictures.  Melissa says it is easy so hopefully I can learn soon.  The first picture is my favorite of sweet Luke!!!  The second picture the boys are thinking, "What do these women keep doing to us????"  We are determined to get a picture of the two of them smiling.  Stay tuned for some matching outfit pics!!!!!  The third is our sweet boy with his new pumpkin hat.  I think we are going to have to get a big group shot of all the Baylor boys and their pumpkin hats.  I am so glad Elizabeth posted the picture with John Marshall wearing his.

We want to ask all our friends to keep praying for Luke.  He has a lot of doctor's appointments coming up .  I know the Jones family is anxious to know what is going on inside their precious baby boy.  We love them so much and are praying for some good results.  God does have a beautiful plan for Luke's life!!!!    

Thank you to my sweet friend Autumn for helping me set up this blog! I LOVE LOVE LOVE it. James Thomas is four months old. Hopefully, I am ready to be a full time blogger. Below are some pictures from the past four months. We have enjoyed this time together as a family. James starts his job in a few short weeks so we are soaking up this last month of quality family time!



Lindsay
***Not quite sure how to label pictures yet but hopefully I will figure that out soon!