As my daughter is about to turn 7 in a a few months, I can’t but shake my head in disbelief how far she has come!! Many of you know my story and why I am so passionate about life, about enjoying the little things in life and just live everyday with a grateful heart. Today I wanted to share with you my daughter’s story and just like her mama she is a survivor. I have heard it many times say that she looks wise beyond her years and I think you can see in her eyes that indeed she is wise beyond her years. When I was 5 months pregnant with her I was hospitalized first for a very bad sinus infection, then while pregnant with her I had to have my appendix removed and a few days after that I was hospitalized for over a month with an infection called C-Diff. This infection is caused by an imbalance of the intestinal flora and most of the times is caused by too many antibiotics. Usually C-Diff is cured with some very strong antibiotics and it usually lasts 3 to 4 days. I was not so lucky and neither was Isadora. The doctors said that my stomach sounded like a cemetery, I had a tube in my nose to drain all the gastric juice and everyday instead of getting better I was getting worse. My body started retaining water and no matter what the doctors tried I kept retaining more and more water and in less than 2 weeks I gained 100 lbs. The amount of pain I was in is hard, hard to describe as my whole body was so swollen and nobody could even tell that I was pregnant. All this time my little Isadora was trying to grow as I was just 5 months pregnant. Because the pain was so unbearable, the doctors gave me a morphine pump and very strong pain pills and nothing would work!!!
I remember a lady from pastoral care in the hospital would come everyday and bring me books that I could try to read to Isadora so despite the stress she was suffering because of all the pain I was in and all the medicine, that she would hear my voice and know that everything is ok. Since I was not able to eat anything for my stay in the hospital, I had a PIC line in my arm so that Isadora could at least keep on growing. All the ultrasounds where showing that she was not growing as much as she the doctors wanted to and that was mostly because of the fact that I was just lying in a bed, not being able to even have water, no food and a lot of pain pills. I had to have lots of x-rays and CT scans while pregnant and there was really no way to protect Isadora while they did all the x-rays because the doctors were very concern about my colon and they wanted to keep an eye on it so it would not burst open. Despite all the things that doctors tried to do to get my body to eliminate the water and start working again, nothing seemed to help and we finally sat down and the doctors told us that the only option left would be to transfer me to a new hospital, remove my colon and deliver Isadora at 5 months. They told us what to expect when a baby is delivered that early and it was a scary, scary thought to even think what it would mean to deliver her at 5 months. The night before the doctors said they will transfer me to a new hospital my body started eliminating some water and I believe I lost over 11 lbs one night. When the doctor walked in that morning he said well we gotta get ready for the transfer and I said but look my body has eliminated some water. He didn’t believe me thinking the nurses gave me a water pill and I remember him going outside the room to read the notes. I honestly to this day can’t explain how that happen but I can tell you that for me that was a miracle!!!
I got discharged a few weeks after that but I still had to take very strong pain pills as I was was in severe pain still. And all this time my sweet little Isadora was still trying to grow despite all the strong medicine that it was of course going to her too.
I went on with my pregnancy but I still had to see a high risk pregnancy specialist once a week to make sure everything looks ok. May 20th came and I had to have a C-section and all I remember is that I didn’t get to see Isadora as they rushed her to NICU. All I could hear is that she was born with a hole in her chest and they could see her heart beat. They didn’t keep her in the Nicu for long because she seemed to have been doing ok. My little girl that had already been through so much was born with most of her sternum missing. But she was healthy otherwise and of course my heart broke to see her little body not perfect but I was thankful she was alive. Everything seems fine up until she was 7 weeks old when she started having difficulty breathing. We didn’t think much of it but they she was gasping really hard for air. We took her to 2 different hospitals at the emergency room but after they would give her some steroids she would be better so they said that we shouldn’t worry about anything, she will be fine. We take her back home and she was getting worse and worse and starting turning blue and we kept thinking… well the doctors said not to worry. But after a few hours when nothing seemed to help we went to a different hospital and this time the doctor decided to put a camera and look in her little airway. The exam showed that inside her airway there was a hemangioma growing blocking 80% of her airway. Most of the time hemangiomas are left alone as they will grow for a while and then they will go away but in Isadora’s case she had to have it removed as that would have put her life in danger to have something growing inside her airway. The doctor was also part of a team of doctor researching a new syndrome PHACES and when she saw the missing sternum, the hemangioma in her airway and also a hemangioma on her bottom lip, she realized that Isadora had PHACES syndrome. While we were hospitalized, Isadora had to undergo lots of tests to see what parts of her body are being affected by this syndrome. Poor little girl was poked around and so many nights we could not even feed her and she was crying so so bad but because she had to have different procedures they didn’t want her to have anything to eat.
There is a 75% chance that children with PHACES syndrome will have brain malformation and only 5% that they will have a missing sternum so when the doctors did the brain test I was sure that she will have some malformations of her brain. And she did, when the doctors read me the finding I just looked at them and didn’t even know what to make of what they were saying. Even though it was not very severe what they found, they said that they can’t tell me if she will ever be able to walk, or talk or have a normal childhood. Her heart test came back as abnormal too. As much as I wanted to have at least some good news about my little girl, there was nothing I could hang on. At 7 months she had to have surgery to have her hemangioma removed and the pictures you see bellow is her recovering from that surgery!!! She would just have these big eyes and look at me like saying : “Mama save me” and I could not do anything about it.
Because of the hemangioma on her lip and also to make sure the one in her airway will not start growing, she was on steroids for the first year of her life. If you see her all chubby in the pictures it’s not that she was a chubby baby but because the steroids made her look puffy. She was such a good baby but I honestly don’t remember her smiling too much. She was behind with her gross motor skills and I was starting to get worried when at almost a year she was not able to roll over.
I tried to research doctors online to see if they can help Isadora with her missing sternum and if there was anyway that they could try to fix it. I called doctors around the country and finally I found a doctor at Boston’s Children Hospital that said he will try to do it even thought he has never done a surgery like this before. We flew from Washington state all the way to Boston and after a 9 hour surgery the doctor said we can go and see her. In the middle of the surgery one of the doctors said that the only way to fix that would be to take some bone from her scalp but the doctor that I was in contact with said: ” I am not going to go out and tell the mom that I will take bone from her scalp!” They took a bone from a cadaver and he explained to me how they tried to put the bone in there in the hopes that it will grow as Isadora grows. Again, no guarantees, just wait and see. Well, the surgery was about 7 years ago and so far the bone they put in there has grown with her. Does it look perfect?? Not at all. In fact when I see kids and look at their sternum it looks so very different to me as Isadora’s still looks like something is missing there. I tell her that an angel came and kissed her there. Will she have to have more surgeries in the future? Honestly, I don’t know!! I was worried that as she started doing sports and mostly gymnastics since her collarbones are shorter that somehow it will hurt her or stop her from doing certain things. But so far nothing seems to stop her from being a normal kid.
She had a few other things that the doctors could not figure out what was going on but all that is behind her now. She has been through so much and I know that everything happens for a reason and she will do great things in life. Why am I sharing her story with you? Well, because I know that each one of us has struggles in this life, some more than others maybe, but if we do the best we can despite our circumstances, if we are patient and never give up, miracles CAN happen!!! I was the biggest skeptic when it came about miracles but I can tell you that I witnessed way to many miracles in my life to still remain a skeptic.
Isadora is my little miracle!! I do worry at times about her since this syndrome is fairly new and they don’t have any adults to know how long they lived or how the syndrome might affect kids as they grow older. But despite the worry I make sure I let my daughter know each day how amazing, beautiful, kind and talented she is. I don’t take any day for granted and each day with her is a miracle!!! She is so smart and even though she is not even 7 yet, she reads big chapter books, she is so funny and silly and had I given up 7 years ago and be bitter about why she is not perfect like other kids, I might not have been able to enjoy her as much today!!!
Bellow is a little slideshow with some pictures from when she was born and then I am ending the video with pictures of her today!!! I am in tears every time I look at those pictures when she was in the hospital and my heart will always, always be so so very grateful for the girl I have today!!!