We did not know there was anything going on with Scarlett when we took her to her appointment. Now that we have more information, there were a few signs that we see now and would not have known to look for.
1. Bruise: This is the only thing we knew about. A small bruise on her forehead that stayed purple and red for a few weeks. We were concerned, but had no idea what it meant.
2. Veins: Everyone always mentioned how her head always was very veiny. All of the blood vessels are very visible, especially on the left side where the tumor is. We always thought, and were even told by doctors early on, that it was just her thin, fair skin. It is actually caused by the pressure exerted on her skull by the tumor, as is the bruising.
3. Head control: The week before this all began, we were at an infant massage class (highly recommended, by the way). The nurse who led it mentioned that Scarlett was not turning her head equally, so we needed to do more tummy time exercises. When she was born and in the early weeks, Scarlett moved her head a lot and we were always warning people when they held her that she looked wherever she wanted. Her ability to move her head has dwindled, and now she usually turns to one side and can no longer lift her head when on her stomach. Her head lolls to the side of the tumor because it is heavier than it should be. A physical therapist is already consulting and has given us positions and tips to help.
4. Eyes: We just started to notice yesterday that one eye is not centered anymore (good catch, Daddy!). The surgeon looked today and said that is seems there might be some pressure on the nerves to her eyes, causing the off-center eye.
5. Fontanel: The soft spot on the top of Scarlett's head was "full" at her appointment. I had no idea what it should look or feel like, but it was enough that the first doctor noticed right away.
We are hoping that most of this will be fixed by the release of pressure after the tumor is removed. I try not to feel too guilty for not knowing to check these things; there was no way to know.
Hospital life is not settling well with Scarlett this time. She is very fussy, and the nurses and doctors keep trying to give her different things to ease it. We are trying to take turns going home to sleep, since only one of us can be comfortable in the hospital room. It will be hard once Chris has to go back to work; luckily my family is coming to give us breaks. Mostly, we're just anxious about what comes next, and watching for any signs of problems before surgery.
How would anyone be able to notice such subtle signs? You are new parents, not pediatricians. Fortunately the 2 month check-up was due. We are still praying for her and for you and Chris to stay strong.
I hope she becomes comfortable very soon. I feel like I scrutinize my LO all the time now for anything out of the ordinary. I know Scarlett's story is touching many lives all around the world. My thoughts and prayers are always with her and your family. I am following your blog from the June 2010 Mommies BBC group. Scarlett is a little blessing and will get her miracle.
No guilt! You are not an oncologist, and there was no way for either of you to know. Instead of looking at what was missed, look at all that you are doing for your baby girl. You deserve an award for "Mother of the Year" in my opinion. Try to stay positive and strong for your little butterfly, and know that so many of us from BBC are sending positive vibes and endless prayers her way.
I found your blog through BBC and will be praying my hardest for you! Althought I do not know exactly what you are going through, being a mom of a special needs little girl I can relate. We have spent a total of 120 days in the hospital (she is 13 months old). I can completely relate to the financial aspect. I had to quit my job to take care of her. We live in PA and I'm not sure how things work in CA, but look into state insurance. Ours here is called ACCESS and although she is covered under my husband's insurance, it picks up what his doesn't. Also look into SSI (Supplemental Security Income). This is based on your income but even pays when she is in the hospital so much each day. We also get reimbursed for our mileage to appointments. And I'm sure there are other charities out there that will help. Ask your social worker- she should know. And take whatever you can get, don't feel bad about it, you need it! If you have any questions or just need someone to talk to who kind of know what you are going through you can email me- firstname.lastname@example.org
Praying for a miracle!
Don't feel guilty - you didn't know. If we all went around looking for symptoms we would always be in the hospital. Continued prayers for you and your family. I look forward to reading about Scarletts succesful and happy recovery!
Brandi, I found your blog through BBC, and I want you to know that I am praying for a FULL recovery for sweet Scarlett. I am praying for the surgeons and medical staff who are caring for your precious baby. I am praying for you and your family as you tread through this extremely difficult journey. Please, know that you are doing such a wonderful job, and Scarlett is lucky to have you as a mom.
I too found your blog through BBC and I will be praying for you and sweet little Scarlett. My daughter is 4 months old and I can only imagine what you are going through right now.
We as parents don't always see anything but what we have, a perfect baby. You should not feel bad nor blame yourself. I read your blog everyday and I pray for Scarlett each and everyday. I have a baby girl who is 1 month older than Scarlett and I can't imagine what you are going through. You both are all so strong and she is lucky to have you as parents. I will keep praying for you all. Hugs!
Hugs. You could not have known. You were blessed to have a great pediatrician who knew that something was not right. Having a great team of doctors is key to getting the best outcome. It sounds like you have assembled a great team. You may look at Scarlett with different eyes now, knowing what you know, but behind the eyes is the same heart brimming over with love. I look at my post brain surgery child differently. I look at every movement. Every subtlety of eye or mouth or every shiver. I will always worry about her in a different way than I would have if she had a typical journey. But I have more love for her than I could ever imagine having for any little human being cause her fight has bonded us in so many ways. As I sit hear watching her breathe via video monitor I cannot imagine a better TV channel to watch. Hugs. You will notice lots more stuff. Tell your medical team everything. Some of it will be important to the doctors and some may just be a sign that she needs to poop. Don't filter. Let the doctors decide what is important. Speaking of poop, anaesthesia, pain meds and lying around a hospital is really bad for elimination. Watch her poops very carefully after surgery as she might easily get constipated. The can give her suppositories to keep everything moving. Constipation causes unnecessary pain to her and the additional stress can trigger post surgical seizures.
Your family has been on my mind so much lately. Lots of positive thoughts and light your way. Thank you so much for being so brave and sharing your story. You are very admiral.
I know that you don't know me, or my husband. But my friend, Katie, read your blog and suggested I read it, too.
My heart breaks for your baby girl. I'm sure you've heard this, but God has a plan. His plan is always The plan. Proverbs 3:5-6 says, "Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge Him, and He shall direct your paths."
My husband and I will pray for your family, and that comfort and peace can be found - if nowhere else, than for Scarlett - and we'll continue to pray for you every day.
Thank you for sharing your story. I can't imagine how hard this is for you. "Mom up!" :)
Just wanted you to know I am out here reading, thinking of Scarlett and sending positive thoughts and love her way.
There's no way you would have known. Don't be too hard on yourself.
My prayers are with you.
When our baby girl was 20 months old, she had to have surgery. The surgery went well, but complications with systemic staph infection quickly set in. It was a life and death fight.
To make a very long story short, I fought long and hard with God, that he would heal her. She had many set backs. She had a month long fight for her life. The turn around came when I finally surrendered her to God (who had gifted her to us to start with). I thanked him for the time we had had and gave him permission to take her back if that was his will. Her situation turned around that very day.
She is alive and well. Her scar is a constant reminder of God's grace. I know the outcome could have been losing her. I learned a hard lesson and continue to keep an attitude of "she was God's first".
There is unfathomable peace in releasing her to God. Heloves her more than I can imagine. And his plan for her is a good one.
Praying that you will feel God's peace and praying for baby Scarlett.
A few times a day I check your posts to see the news on baby Scarlett. I found your blog from a friend's facebook page praying for her. As you know, your blog has touched many many hearts. Not just the moms that read this, but their children who are loved on more because this can happen to anyone.
My daughter is 3 weeks old now, and for the first 2 weeks of her life, we were visiting doctor after doctor, who would consult other doctors. Her white cell count was extremely high at birth and they worried it was a type of leukemia. Her appt a few days ago, everything was normal, and I finally exhaled. Our prayers were answered. I pray for the day that you get to breathe that relaxing sigh soon. My family's thoughts and prayers are with you.
Another stranger just letting you know we are thinking and praying for Scarlett and your whole family! Don't be so hard on yourself, there is no way you could have known what to look for!
Don't feel guilty you did and are doing EVERYTHING that GREAT parents should be doing...you all are so amazing are truly in my hearts. Scarlett has had a huge impact on many lives...i will coutinue to follow this and pray for you all with all my might.
Praying so hard for you and your beautiful baby girl! Blessings and Prayers your way!
I have found my way from BBC & my most sincere,heartfelt thoughts are with you. You and your family have my prayers coming your way. Your beautiful baby Scarlett has nothing but the most positive thoughts in her favor. I wish you the best of luck in your future & hope that love & peace of mind stays with you all. Nothing but love to you..
First I would like to say good luck to your baby during the surgery. I hope she gets well soon. Second my best friend went through all you and your husband are going through now 14 years ago. Her daughter had a tumor on the back of her head that was the size of a gulf ball at 4 months old. Sammy who is now 14 went through several surgeries and years of chemo. One thing my friend told me was that the chemo destroyed all of Sam's eggs so she will never have a child of her own. If its at all possible try to have them remove And save some of her eggs. I'm not sure if that's possible to do to an infant. Good luck to your family and I will be praying for your little one.
I am a soldier.. super tuff chick right? I thought so.. then I read your blog.. I am in my office sobbing, I had to close the door and take a second to regain some composure... my son is seven months, right now I want to hold him so bad my heart hurts.
God bless you perfect precious angel and her loving parents.
My prayers are with you and you pretty Scarlett.
(I found your link on Baby center)
*hugs* to you and your family! I found your blog link on Facebook.
I just want you to know, that I know where you are coming from! Please, don't beat yourself up. There is nothing you could have done, and no way you could have known.
We went through something very similar when my son was dx with Neuroblastoma. We thought he was just gassy at a month and 2 months, and we noticed he had a hernia and his pedi wasn't concerned. About 2 weeks after my sons 2 month check up I could take it no longer and took him to the ER where they did an xray and CT and saw he had an enarlged liver and sent us straight to a Children's hospital via ambulance. There were a lot of signs, and we didn't understand or catch them, and neither did his pedi (he didn't listen to us at all anyway and we now have a new one).
Nearly 18 months after diagnosis...Keegan is 20 months old and doing great, he's No Evidence of Disease and nearing his one year off treatment mark, which is a blessing and a huge mile stone.
Hang in there! We're thinking about you and your beautiful little girl. http://www.caringbridge.org/visit/SuperKeeganRay
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