Hi guys. I'm sorry I haven't posted anything in a while. You, parents of toddlers, know how crazy one's life can be with a little one in this age range. Hehehe
So, the post surgery was pretty good. Isabelli had her surgery in the morning and everything went great, thank God. As soon as she woke up, she was asking for water, my poor baby, was so thirsty and hungry! Besides the thirst, she was doing great and not complaining much. It is just amazing to see how kids do MUCH better than us adults with surgeries and being sick. They're so much stronger!
Little funny part of this whole thing, is to wonder what people think it happened to our child. People often look at us with horrible looks, probably thinking we let her brake her arm, for example. One nurse at the recovery room (not her nurse, but a nurse from the bed next to Isabelli's), came by, said Isabelli was beautiful, and then asked: "What was that? Dis she burn her arm?" Wow.. Never thought burn accident was even a possibility for casting.. interesting. I can only imagine what else goes through people's minds.
Ok, but regarding her hand now. She had that skin growth (you can see here) from the top of her finger taken off as well as some extra skin in the middle finger. Also, the doctor had to go back to the pinky, because it did not get separated completely during the first surgery. He used a little bit of the skin of the skin growth as graft on her little finger separation. The bad thing was that it didn't attach well. All her stitches came off naturally, but the part where he did the graft got hard and dark, but it dried out and it is falling off , not causing her any harm. The skin under the graft actually grew just fine.
Showing off her hand after the second surgery.
So, she is happy and well, using her hand perfectly. She is left-handed, so the fingers missing on the right hand don't affect her much!:)
First of all, thank you so much for your prayers ans support.
This last Thursday was Isabelli's second hand surgery (fourth surgery total). We got at the hospital at 5:30am and by 7am (or even before) we were prepping her for surgery with the nurses. She did great. Much better than we thought. She fought to have the medicine they give her so that she can be much more relaxed, but she was able to have enough to make her not freak out when she left us. And we are so thankful that the nurse and the anesthesiologist were such sweethearts. Isabelli loved them and went gladly to the nurse's arms.
This time, the nurse who took her was calling us every 1 1/2 hour to give us updates and tell us how good Isabelli was doing and how great her hand was looking. I am very thankful for this nurse. I will ask the doctor if she can be there to the Isabelli's next surgery as well.
The surgery last about 5 hours. Once we got to the recovery room, the nurses were on the top of Isabelli like flies, and started telling us how cute she was. Yep, she's a cutie! ;) We were so glad to see her and hold her. She was waking up and asking for water. It was the only thing she would ask. Water !! Poor baby! Was so thirsty and hungry.
We went to a room a couple hours later and the last time Isabelli had something for pain was that thursday night. By 1am, we were walking around the hospital hallways. She was getting back to her normal. Went to play at the Hospital's playroom and all.
I'm so proud of my little girl! She is a tough cookie. She is now totally back to her normal and she acts like nothing has happened at all. The cast does not bother her, not even a little bit. :) God is good !!!
Hew cast design! Could not do something more elaborated
because she does not stay still long enough! :D
First of all, thank you for keeping up with us, especially those who have been praying for Isabelli and her health. She is growing up so fast! She loves to talk and sing and she turned out to be a ball of energy most of the time! She keeps me busy!!
Even though she got her braces on, she tries to run all over the place. It's fun to watch, but she gets everyone pretty tired! :D
http://brendacphotography.wordpress.com
So, we went to her orthopedic doctor and her next surgery for her right foot will wait until she is about 3-5 years-old! YAY!
And we also went to see her hand surgeon and her next surgery will be next week, on the 19th. It will be just like the last one. It will take about 5 hours. It is always hard to wait that long to get to see my baby again. Oh well! But God is control. Her life is His.
The Dr. says her next surgery after this one will be in about 6-9 months. Not fun. But better sooner than later, right?
So, please, on the 19th, during the morning, would you take some time to say a prayer for her?
So, this past Tuesday we went to Isabelli's orthopedic doctor and he checked her feet, especially the right foot, which is a little stubborn. And for my surprise, he said she won't need surgery for right now. He wants to wait until she is between 3 and 5 years old. Thank, God!!
I was all anxious about the fact that she would have to pass through two surgeries this summer.. and It makes me immensely happy that one is out of the question for right now.
God is good!:) Here is a picture of her at the doctor's office, playing with some toys. It was the actual first time she didn't cry once she saw the doctor. My baby is all grown up. :)
The simple fact of walking barefooted. Everyone takes it for granted, as I did. But not anymore. Today was the first day Isabelli asked me to take her feet braces off. She looked at me, pointing at her feet and making complaining sounds. I was worried, thinking that something was hurting her. As I took them off, she smiled away saying "Pe!!" (Foot in Portuguese), and then she pointed to the floor, asking me to put her down to walk.
She just wanted to feel the carpet under her feet, and not the hard plastic of her braces. She walked proudly with me to the room, as I was getting clean socks to put on her along with the braces, once again. Unfortunately I cannot leave her one whole day without them... Oh.. The things we take for granted!! I never thought that walking barefooted would be such a rare and joyful moment for my beautiful baby.
Looking forward to when she turns 5 years old, and gets free from those braces. I am very thankful for them, don't get me wrong, for they are healing my baby's feet, but I sure look forward to the day she won't need them anymore.
Even before I was pregnant, I have always prayed for my future kids. I prayed for their health and their future in school, with friends, their marriages... Those prayers just intensified once I was pregnant, mainly because of all the things you learn about your baby, week by week. But as I watched lots of tv shows on the Discovery Health channel, I saw lots of kids, different kids. I remember watching a show about children with down syndrome, saying prayers at the same time, asking God for my baby not to have that syndrome... but then, a few seconds after I prayed for that, I stopped. I regretted my words and identified the feeling behind it. Fear. Pure fear. And I just asked myself: Why not? Why wouldn't God want me to have a unique baby like those on tv?
I understand that as a Christian, we ask and believe God will do something for us. But sometimes what we ask God is not really the best thing for us. I had always prayed for a healthy baby. All that mattered was that she would be healthy. Really? Is that all that matters? People tend to think like that. And it is SO WRONG.
That day, watching the tv, I realized that God might want to give me a special baby and that I should be really comfortable and happy about it. I should know that God's decisions for my life are the best ones.
I kept that thought of the possibility of having a special child just to myself. I did not comment anything with my husband, until the day we had Isabelli. I remember him telling me: "I was worried about how you would react once they told you everything Isabelli had, but I was very surprised with your reaction". He said that because my reaction was: "Ok, her right hand was affected, but the left hand is perfect. Ok. Good. Her feet are totally twisted, but the doctor assured me she will walk. Ok. We're good. That's fine". And I believe that even if the situation was worse, God would give me the same peace He gave me that day. Even if there were no hands or feet to my baby, God knows I would carry her in my arms until the day I died
I feel blessed, yes, blessed! God has given me the best daughter in the whole world. He has chosen my husband and I to be her parents and I am forever thankful to Him, for thinking that we are worth being her parents.
The day Isabelli was born, my husband was remembering something he once heard his father preach about: "Don't be thinking of WHY did something happen to you, think of WHAT FOR". That is exactly it. God is doing great things through our hardships, we just have to be open to learn from everything we are faced with.
Because Isabelli has to wear her braces 24/7 (we just take them off for her to take her bath), she doesn't get to wear all those different cute kinds of shoes. In fact, she will not be able to do that for a while, because she will wear those braces until she is 5 years-old.
So, I had to find alternatives to make her look cute and match her clothes. Before putting her braces, I put some comfy long socks underneath it, but then,on the top of it, I put another pair of socks, matching whatever she is wearing. I really like those colorful striped socks, because you match them with any color.
But the cutest thing to put on your baby are those socks that look like they are shoes! So, recently I found these websites full of those cuties... I would looove to get some for Isabelli.
Regarding the use of shoes, once your baby starts walking (like Isabelli has), the only pair I was able to find that actually fits the casts inside, was one from Garanimals. If you moms, have found any other brand that fits with the braces, please let me know!
I find it to be the hardest thing I can do as a parent. Just give her away into the care of other people and I can't be there with her. The first time we had to go through this, I couldn't stop thinking about the moment that she would be leaving my arms... I thought to myself that that moment would be a mess. In my mind, I imagined that the baby and I would be crying while we departed ways in the Hospital's corridor.
Well, Isabelli's first surgery (clubfeet - the releasing of her Achilles tendons) happened when she was just 3 months-old, and God worked in amazing ways throughout the day. They asked us not to feed her anything for about 12 hours (or 8, I don't remember), and thankfully, Isabelli slept throughout the whole night and did not complain about it at all. And when it was time to go to surgery, she was asleep, and there was no tantrum.
After her first surgery.
Ok, now, one very hard thing all parents are worried about is with the anesthesia. We have to trust that we are working with the best doctors. I trust my baby's doctors and their choices of anesthesiologists. But above all else, I trust God, and I am always in prayer for Isabelli's life and His protection over her.
For me, the real hard thing is seeing my baby so helpless on a hospital bed, full of IVs. It hurts my soul at first, but then I focus and remind myself that this is for her own good and that she won't even remember in the future (but us, moms, will, right?).
After her second surgery.
After her first hand surgery (3 surgeries total so far).
Regarding the casts after surgery and how she handled it, I can say it was very good. The only time she really didn't like for the first days, was the second foot surgery, because she was very active, crawling all over, and she loves to move around when she sleeps, so she got really mad because she was not able to stretch her right leg. But by the third day, she was fine with it, and was crawling around with no problems. As well as with the arm cast.. she also crawled with no problems. Just be aware that the arm casts are easy to slip off. She had to have it replaced in the first week, because she took it off!! We had to run to the ER with her hand in stitches. If that ever happen to you, cover your baby's hand with gaze or a clean cloth and tape it around the wrist loosely, just for it not to fall and to prevent bacteria from infecting the area.
On a lighter note, I like to make drawings on her casts.. to make it fun! On her right leg cast (2nd surgery), I drew Nemo (her lucky fin buddy) and some flowers and on the arm, I drew hearts. Here it is:
Hope you can see part of the Nemo on her tight.
She LOVED her arm cast. Would Hug it all the time!
Well, now you know in which circumstances Isabelli was born, and maybe your story is really similar to ours. So, for us, after finding out about all our baby's conditions, it was time to learn and understand them, so that we could raise our daughter to the best of our abilities. I sat myself in front of the computer and "googled" everything in the subject. So, here I'll give you a summary of each condition and provide you with links that will help you learn more.
AMNIOTIC BAND SYNDROME (ABS)
The process occurs very early into pregnancy (around the 14th week), when a rupture in the amniotic sac happens, releasing fibrous string-like bands that get attached to the baby. It is most common to affect the limbs (arms and legs), constricting their growth or amputating them. It can also affect the skull, cause cleft lip/palate, scoliosis and other abnormalities. In worse cases, causes miscarriages.
According to studies, and the doctors we have spoken to, studies haven't yet been able to link anything in particular that may cause this problem. I just happens. Of course that the use of drugs and exposure to chemicals may add to the risk. But, for example, in case of moms that had a healthy pregnancy with all the cares and vitamins (like me), there is just no explanation at all.
If your baby was born with this condition, he or she is 1 in approx. 1200 kids!
Here are the before and after surgery pictures of my daughter's hand. This first surgery was mainly to release the syndactyly (which is the webbing of fingers - you'll learn more about it next) between her fingers.
My daughter was born with 3 developed fingers and two that are undeveloped (little and don't have bones). The little ones were webbed to the fingers next to them. You can also notice the extra skin over her 4th finger, looking like a little ball. That and all the extra skin on her fingers will be removed on her next surgery, scheduled for the middle of the year.
SYNDACTYLY
As I have just mentioned, syndactyly and polydactyly is the webbing of fingers or toes. They can be connected by just skin, or be more complex, being joint by nerves, blood vessels, bones or nails. When it does not affect function or development, your child has great chances of living very well with it and he/she might have a cosmetic surgery if wanted. But for the complicated cases, the surgery will be corrective.
Some link on ABS, syndactyly and other hand differences that you might like can be found on the right hand menu o this blog, under the EDUCATE YOURSELF tab.
CLUBFOOT (CLUBFEET)
Let's now talk about my baby's little feet. They were totally twisted to the inside (the right foot even more so). Clubfoot is when the bones, joints, muscles or blood vessels of the foot are incorrectly formed. It can affect one or both feet. (You can learn more by checking out the links on Clubfoot here on the right hand menu on the blog)
The best process used to treat clubfoot is the Ponseti method. My daughter started treatment at 4 weeks old. The process consists of casts that are put on the baby's whole leg, that are changed every week, and every time they are changed, the doctor moves the baby's foot closer to the right position. The change is very noticeable and fast, once the baby's bones are cartilage-like and are much more flexible than our bones, for example. That's why treatment has to start in the first month of life of the baby.
Isabelli had the casts done for about 6 weeks and had her first surgery on the 7th. After surgery she stayed with casts until the 10th week. After that she started using removable braces (we take it out just to bathe her), but she still has to wear them 24/7. At night she has to use some extra braces that go on the top of the ones she already has, and those braces have a bar between them, forcing her feet to face outward, preventing the feet to come back to the inside.
Here are some before and after pictures:
And here are some pictures of her using the casts:
Now, Isabelli is 15 months-old and has just started walking!!! We are extremely happy and grateful to God and to her amazing doctor. Here is a video of her walking:
Well, I hope I have help you understand a little better these conditions. I'll keep on posting things regarding these subjects and I will share with you our trials and victories!
My pregnancy was completely calm with no worries at all. Got an ultrasound on the 9th and 18th week and everything seemed normal. I used to feel Isabelli stretching a lot inside my belly and used to say she was a gentle girl, that did not kick her mom harshly. The first surprise was on my 39th week checkup. My doctor said my blood pressure was a little high and told me to go to the hospital to have it monitored for a couple of hours. There, the doctors said my blood pressure was going up and down, and after an ultrasound, they gave me my second surprise of the day: the baby was breeched!
Oh well, there comes the third surprise... Because of both factors, the doctor decided I would deliver my baby six hours from that time, which would be around 8pm. Nice! I was not prepared at all.. I did not imagine when I was getting out of the house that by the time I would come back, it will be 4 days afterwards with my daughter in my arms.
So, I went through all the steps to go into surgery. Once I am strapped down on the surgery table after the epidural... here comes the forth surprise: when the doctors opened my belly, my husband and I heard them saying that they've never seen a baby so tangled (she had her umbilical cord wrapped three times around her neck and also three times around her body) in their lives. I'm glad I heard her cry afterwards, it took a while, but she did. Now I knew.. That's why she wouldn't kick me harshly... it was because she couldn't! She was sooo tangled.
They called my husband for him to go see her and then I asked the doctor that was in charge of the surgery if the baby was ok. And here comes the fifth surprise: He said: "She is fine! Oh, but there is something with her hand, but the doctor will explain you better later". Yes, I could not believe he just told me that like that , with me laying there strapped and cut open... But anyways... The nurse came by and showed me Isabelli, all wrapped in a blanket, making cute faces. I was so happy to see her!
As soon as I get out of the surgery, a ton of specialists started making their way into the room. Then there I learn about her right hand being malformed and that she had clubfeet. We met with a geneticist that guaranteed us that there was nothing to do with genetics. We also saw a orthopedic doctor that assured us her feet would be fixed to be in the normal position. I asked him if she was going to walk, and he said that for sure she would.. then I was relaxed. I knew she would be alright!
Once she was in my arms I saw how perfect she was. Perfectly beautiful! And health too, besides her outside birth defects, she was completely healthy inside. We were completely in love with her. So we came to the conclusion that if God had blessed us with her it was because He thought we were going to be the best parents for her.
Then, our process of understanding our daughter's conditions had just started. And we were ready to learn!
Hi There! My name is Brenda and I am mother to a beautiful 15 month-old girl called Isabelli. I am starting this blog to share all the amazing experiences that involves being her mother. She was born with ABS (Amniotic Band Syndrome), Syndactyly and Clubfeet, and in my next posts I'll explain what each of these mean and tell you all that we have been through during doctor visits and her development in general. I hope to help other parents that are passing through the same thing.
And remember, just because things are difficult, it does not mean that they are impossible.
