Kosair Childrens Hospital-Day 1

Today was our big day! Brian made it back from his overseas trip yesterday and today we are in the hospital. The above picture is of Rosie before she went back for surgery. They had a room full of fun toys that were very entertaining for my little two year old :) They gave her some silly juice and then took her off to the OR. We didn't see her from around 2:30 til around 6 p.m. They had the nurse call us every hour and give us details and let us know that everything was going ok. It was very comforting to have that contact with them! After the surgery her surgeon came in to chat with us about how everything went. She told us that things went well. They took out the left ovary, Tumor, sists and took care of a belly button hernia. She told us that they were able to keep her left tube which will be helpful when Rosie starts her own family. The Dr. showed us a picture of the tumor they took out of her tummy and it was shocking to see how huge it was! It looked to me to be about the size of a baseball. It ended up being 6 cm at its widest point. It was so sad to think that this huge thing has been hanging out in Rosies tummy for so long! The surgeon also told us that they only find children with these type of tumors every 4 to 6 years. I guess we were just the lucky ones! I guess the greatest news of all is that the tumor was not cancerous!!! We have been so worried! I don't know if I could emotionally handle that right now!
They wheeled Rose up to her hospital room where we were able to see her for the first time since surgery. She was so sad looking and kept grabbing her belly and crying and breaking mine and Brian's hearts. I really wish that I could just take all of that pain away and make her be healed!!! She seems to be doing really well though. She has been able to keep down juice, and jello and wanted more to eat so I think that her recovery will be pretty quick! They may send us home tomorrow, but I am kind of hoping that they will keep us until Thursday, only because I think that the first 24 hours are going to be rough and it would be nice to have a nurse around to help us out!!!
I am so tired! It is time for bed now. I will let you all know how tomorrow goes! Thank you so much for your thoughts and prayers for my family. I truly have felt strengthened and encouraged through this highly stressful time!

My Heartbreaking Memoir

Unfortunatly sometimes life throws you a curve ball, one or in our case two of them that are totally unexpected! So, I guess I will start with Rose...as mentioned in an earlier post on here she was diagnosed with precocious puberty earlier this year. We went ahead and had a surgery done on her earlier this month to help prevent any further issues and to regress her already present physical changes. We thought everything was good and great until a week ago when she started bleeding again. I assumed it was normal, but called her endocrynologist just to give him the heads up. He called me a few days later a little concerned that something else was going on and so he scheduled another hospital visit for an ultra sound and lab work. He also set up another visit with a Ped. OB, thinking that perhaps we addressed the wrong issue and that something really is going on with her ovarys. So, yesterday my Mother, Rose and I (Brian is in Russia for a trip for his MBA this week) went back to the hospital for these tests to be done. Rose had a great experience this time and the nurses that worked with her were excellent! We have our appointment on Thurs. with her OB and we will get the results then, except for that her endo called me today with not so great news from the reading on Rose's ultrasound. He said the the ultra sound doc found that where her left ovary should be there is a 4 cm tumor that the ob will be talking with me about on thurs...this also means surgery in the very near future, again, to get it taken out. We are praying that it is not cancerous. Just today Rosie started complaining about her left side hurting...I was going to wait to post anything about this but I figure we need prayers right now for us that Rosie will be able to be healed and that all of her doctors will be able to figure out everything that may be going on that shouldn't be in her body, and that they will know how to fix it! So, I thank you for your prayers for us right now!
As for curve ball #2 last thursday I went to a maternal fetal care office in the hospital because they said I may be having a baby with down syndrome and they wanted to investigate further. It turns out that I have a 1 in 6 % chance. Which after that office visit I am still not sure if the baby is downsyndrome or not because we didn't do an amniocentesis, but the specialist doctor thinks that something may be wrong with the baby's heart development and Iwill be going back in 3 weeks for a check-up. I went to my OB today and she was concerned about what the specialist had told her. Luckily the heart condition is fixable but it will be a long road. I will have to deliver downtown instead of at the hospital I was wanting to deliver at. The hospital down town is connected to the childrens hospital were the baby would be in the NICU and where pedo heart surgeons are readily available. Of course all of this is somewhat of a scientific guess right now because the baby's heart is so tiny the doctor couldn't get a great look at it. We will know for sure by the time I am 22 weeks along, until then I hold my breath! There is the optimistic approach that I am trying to take where I just believe that everything is ok with my baby and that it will be born healthy and strong on the due date...
So, this is my heartbreak right now. I will keep you updated on what is going on with Rose when I know more and also with the baby in my belly. I guess right now I just ask for prayers so we can be strong enough to handle all of this stress and worry that is now on my shoulders and on my husbands!!!

One Step Forward, Two Steps Back...

Yesterday we finally conquered the milestone dealing with Rose's health issues and you would think that we would be able to take a breath of fresh air and relax as one major stress can exit our lives...and then I got the call from my OBGYN giving me the news that I tested as a positive carrier for the Down-syndrome and Tri-somy 21 test. This does not mean that the baby I am currently trying to develop has this issue but that I for some reason have a higher chance of having a baby with this. I am trying not to freak out because a lot of times women are told they had a positive test result and everything was ok. Its just that there is a chance for something to be wrong. So, I set up an appointment today for May 19 to go to get some further ultrasounds done and possibly an amniocentesis, depending on what the doctor see's in the ultrasound. Have any of you ever tested positive for this or had experience with this? Should I be freaking out? I don't know. I do know that today was the first day in months that I actually haven't needed an afternoon nap and I made Oatmeal chocolate chip cookies-which is huge because I haven't cooked in months either. I am even considering making sloppy joes for dinner. So, there is my happy thought, today I have a little more energy to be just a little more me.
(I don't mean to sound like I am complaining or "woe is me" but the name of my blog is "Memoirs of Mothers" and right now my personal "Memoir" includes a lot of stressful medical issues...)

Long Road

Early in January this year my little girl was diagnosed with something called "Precocious Puberty" which is basically an early onset of puberty. In her case a very, very early onset sent she wasn't even two yet when we noticed her issues. Her pediatrician was great at helping us along with her diagnosis by referring us to a Pediatric OBGYN, and a Pediatric Endocrinologist. They were very cautious in the beginning because sometimes, very rarely this can occur because of systs on the ovaries or in extreme cases a tumor in the brain. Luckily we were able to rule both of those issues out early in February which was a huge relief to us and to our family/friends. Along with the various blood tests and ultrasound, and MRI we also got to get her hand x-rayed to see what age her bone structure was. Alot of time girls before puberty will hit a growth spurt and then once their periods hit they stop growing. So another issue we were having to deal with was making sure that she was the size that she should be and luckily that test came out normal also...so what caused or is causing my daughter to have "Precocious Puberty?" We don't know...after talking with the doctor we felt like time was on our side and that we could wait until Summer sometime to do the the small surgery where they insert a little capsule under her skin to help control her hormonal imbalance.
Then, in early April my Husband and I woke up on a Sunday morning to my baby's diaper being filled with blood. Aghhhh, it was terrible, and of course it was Sunday. Luckily we knew what was going on and didn't rush her to the hospital, it was just her first little period at age 2. Monday didn't come quick enough and we called her endo doctor first thing and of course it was the week of spring break so he was out of the office for the week, and the doctors that do the surgery were out of their office for the week. So we put her on a progesterone pill to stop the bleeding and we worked with another doctor in the office, who was very kind and great to work with. The whole week were were trying to get our insurance to allow us to start a shot called "Lupron Depot" which is used with this disorder to help control the issue...at least until we could get the surgery done. Of course insurance was a pain in the behind, which they have been throughout this whole experience for the most part. They denied us the drug and it took me calling and crying to them that my 2 year old is having her period, and getting our Endo doctor back to call the insurance and get them to get us the shot. We finally got that all taken care of and were able to go to the Doctors office and have them give it too her (so that we weren't the bad guys). As we were carrying our screaming child out of that office visit I was so much more set on getting the surgery as soon as possible so that we didn't have to go through that every month.
We were able to set the surgery date for May 17 and things were going along fine until 2 weeks after the shot, on a Sunday once again baby girl had blood in her diaper...erk!!!Luckily we had an appointment with the surgeon the next day and we were able to get him involved with the urgency of getting this surgery done and were able to schedule the surgery a week out from then.
And that brings us to today when we woke up at 6 a.m. and drug the little lady out of her crib around 6:30 and went to the hospital for her surgery. At this point she hates doctors, nurses, and hospital beds, so we were aware that it would be a bit rough, but I was not prepared for 3 of us to hold her down trying to get her to hold still while the nurse tried to get the IV needle in her. Of course the first time failed, so we had to do it twice. I thought baby girl was going to go into shock she was screaming and crying so much! Then they wheeled her out of the room screaming still at the top of her lungs, and then we could hear her screaming in the surgery room...all the while she is screaming I am sobbing buckets of tears and my Mom also because up to date I think that is the most traumatic experience we have been through with her. Finally she stops screaming and literally a few minutes later the surgeon is in our room talking with us telling us that everything went well and good. When the nurse rolled our now sleeping baby back into our room I asked her why she was screaming for so long and the nurse told us that she didn't want the blood pressure cuff on her leg. She told us that our little girl is a fighter...which we already knew:) The wonderful thing is that finally, finally, finally the surgery is behind us. Rose has the medicine she needs and we won't have to do this surgery again for 12 more months. I am so grateful for advanced medicine and that they were able to do this to help my baby girl, I just wish it didn't have to be so traumatic for her and for us!
So, you may be wondering what happens next, well for the next 10ish years we will be doing this surgery on every May 3rd, to hold off my little daughter puberty until it is time for it to really start. And that is why this is still a long road for us.