Friday, June 5, 2009

Slow and steady wins the race...

One of the blessings of Trisomy 18... beautiful eyelashes!!!

I am becoming very anxious and wanting her to wake up and give me one of those priceless smiles..I continue to be very grateful for the epidural. I think it was after 1:30 a.m. when we requested some pain medicine. When you have an epidural, you are assigned a pain management team. They are the anesthesiologist that make up this team. Annabel doesn't cry very much and she endures much pain. You can tell by how she grimaces and furrows her eyebrows. So I would wait for this to happen, then she would cry out in pain and then the nurse would come in to check on her. We then would call the doctor to request pain medicine. Each time it took a bit for him to come up to the PCU unit. By this time Annabel had cried and was exhausted and I was able to snuggle with her in the bed and she would fall asleep. He would arrive and say "Well she doesn't appear to be in pain." The nurse and I would both verify that we had waited a while prior to calling him and then it took him a bit to arrive. He would refuse and be on his way. They have said with a child it is harder to know if the epidural is actually working because she can't respond and tell us. I do believe it is definitely working but I do think sometimes she becomes very uncomfortable that she needs just something to take the edge off. Well the doctor was not having any of this. So when pedi surgery made their rounds they notice her not being comfortable and ordered the morphine. The team came behind and cut the dose in half. That is just how it works here! We didn't give her the dose until around 3 p.m. today. It did really wipe her out and she did have some slight desats due to her sleeping much deeper. She then became nauseated and with the tube down her nose into her stomach she began to vomit. So we have let her lay and rest most of the afternoon. She is still in la la land...zzzzzzz...

We again are so lucky with great nurses. They are supportive and very informative in helping me understand what is going on. No only are they really good at their jobs but it is obvious that they have a huge heart for nursing.

Tara was the first one that got to hold Annabel today. I was a little nervous but the nurses encouraged me that she would be fine. Carly and Colette are also here for several days with Tara staying in the hotel across the street. They have been a huge help getting us food and snacks. Tara brings me Starbucks each morning for breakfast. I think I am becoming quite spoiled. Also, Colette has been standing by to give me neck rubs on several occasions to relieve my stress. Ahhhhhhhh....They have also been great company for me and keep things light. I know when Annabel is feeling better they will be a great source of entertainment.

We had a surprise visit from some friends of ours from home. Laura and Larry came to Houston to pick up furniture and stopped by with a Big Bird for Annabel and a bag of snacks for me. I can't imagine how much I will weigh when we are released.

Tara holding Annabel for the first time today and one of our

sweet nurses, Mary Ann

Sleeping or wakey???

Surprise visitors, Laura and Larry


Anonymous said...

What a great picture of those beautiful lashes!!!!

How I wish I was closer and could be there for you. Tell Tara that I think she is the greatest big sister and daughter ever...just like my Laura.

When do you think you will be home? I hope that the worst is over now.

Hugs and love to you all.

Annie's mom

Michelle said...

I have been delighted to read how well Annabel is doing and I can't wait to see that precious smile again too! Prayers for a good night for you both! Love, Michelle

Kathy said...

Oh Cathy! Wonderful to see your post tonight! You are so good to us out here in the blogosphere! Thank you!

So glad to hear your nurses are terrific but the "pain team" I would like to sting up! There is plenty of research that healing is faster when the patient isn't in pain. HER MOTHER would know when her child is in pain, not the team doctor who doesn't know the beautiful, brave child. Good grief!

Your patience is God-given Cathy. I would have been furious.

As Barb said "...hope that the worst is over now." Amen!!!

Cathy, thanks for the great shot of her amazingly thick and long eyelashes. So beautiful.

Loved all the pics. Annabel looks amazingly well for all she has been through and I know her radiant smile is going to be quick to return.

Praying for Annabel, you and your incredible loving "Team Annabel!" Not only does Annabel have her Heavenly angels ministering to her she also has her earthly ones. :)

It's good to know they are taking care of you as well. Sleep well friend! xo

Tamara said...

So good to see her... Pictures are so good for the soul, feel a bit like I'm there. How you doing? I'm think of you all the time! Wish I were there to share in a coffee and to gaze at God little miracle! Love you friend, keep us up to date and don't forget those butterfly kisses from me and Abb!

Laurie in Ca. said...

Slow and steady is right Cathy. I am so sorry for the pain she has been feeling and shame on the attitude of the "pain team". Where is their heart? Praying for sweet Annabel and want you to know that all of your girls are just the best!!:) You definitely have raised them right and it comes back to reward you now when you need it most. I love you and prayers continue for full recovery for our girl.:)

Love and Hugs, Laurie

connie said...

I was so moved by what Kathy wrote. YES, being in pain interferes with healing, and YES, her mommy would be the best one to ask if she is in pain.

I was so upset when I read that part of your post last night, but didn't have words to respond. Kathy said it perfectly. Well, we all know to be praying for sensitivity of those expected to treat her pain, courage on the part of her nurses to advocate fiercely for her, and no need for you to feel like you have to fight. I know you are always so full of gratitude for even small kindnesses - I am praying you are overwhelmed with kindnesses daily directed toward Annabel , and also toward you. I am also praying that you keep well-rested and strong.

I love you. Give all your sweet girls hugs for me. I am so glad they are there for you. Nothing like a female to know how to be a great caretaker. Esp since they learned from the best!!

Kathy said...


I am praying in agreement with Connie for extreme sensitivity of all who are caring for our sweet Annabel. Excellent prayer points.

Also praying for the little princess to wake up and be a bit more alert today. Thankful that she got her rest and storming the gates of heaven for a quick recovery. We all need to see her beautiful smiling face!!! I swear it makes my day! Praising the Great Physician for all that He has done and will do.

Love you girls! GO "TEAM ANNABEL"!!!

Elena said...

She is a beautiful little girl! Thank you for sharing her story with the blogosophere!

Kelly Thatcher said...

She's lovely. You're blessed -- but you already know that!

ANewKindOfPerfect said...

Thank goodness for friends and family! I am glad that the doctors finally gave her pain meds. It's not fair for these kids who can't tell us what hurts and how much.

I hope that she continues to do well and you guys are home soon!

Anonymous said...

Dear Cathy,
She looks like an angel, even when she does not feel 100 percent!

Can you video tape her when she is in pain, and then show the doctor what she experieced before she exhausted herself waiting for relief? Maybe if you can educate him about what her facial indicators are, and then show him the progression from that to crying, to exhaustion, and finally to sleep, he will actually do his job. But unless he can see it, he won't be convinced. I bet if he sits through a taped piece he will learn to respond faster, or decide that working with special needs children is beyond his calling and pay grade.

Then again, maybe Dr. B and her staff have just spoiled us all rotten, and we are assuming we will get her level of care everywhere.

Praying for everyone! So proud of the girls taking care of Mom!

Love you all!