Monday, October 27, 2008
----------------------Fall is Here!!-----------------
I love this time of year, cool but not cold leaves changing. I love living so close to the mountains, they are just beautiful. Last Thursday I packed up Ella and Alex and went to Mom and Dad's house. Ella had Friday off from school and it was Dad's birthday. I hated that Stephen had to work and couldn't come but I think, well I know he enjoyed having a night in the house by himself who wouldn't??? We went to a pumpkin patch and got pumpkins Ella loved running down the rows and picking out ones for all of us. Alex just wanted milk. Alex is doing great, eating and sleeping like a champ. Friday night and last night he went down around 10pm and slept until 5am and then back to sleep after a bottle!!! Other nights aren't that bad either, he sometimes wakes around 3am for a quick bottle and then goes back down. I have to give God the big high five for giving me such a good sleeper. I have not once felt sleep deprived. And actually Ella was like that too. On the very rare occasion she would be awake for a couple hours at night but not much. Now she was fussy every night from 5pm-9pm. I wouldn't call it full on colic as I am sure parents of a full blown colicky baby would have loved to have her fussy spells. But she just got fussy. She had a hard time eating too, she was a spitter, almost every bottle that milk would come flying out of her mouth....I was just waiting for her head to start spinning around. I think everyone in the family got it at one time or another. But all in all she was a great baby and Alex is just as laid back as they come.....he takes after his daddy and I can't complain about that one bit! Health-wise Alex is doing well. Growing in length and weight, he loves to eat that's for sure. I am just trying to relax bewteen noe and his next appointment with the surgeon in December.
Holly
Friday, October 17, 2008
Alex's Dr. Appointment Update
We made it through the day! I never thought this day would get here...it's been a long week. We went to Children's Hospital and met with Dr. Chandler with Pediatric Surgery. He looked Alex over and right away was able to confirm that it was a Cystic Hygroma or Lymphatic Malformation. I thought for sure he would say that they would plan for surgery in the next couple of months but he actually said that he would like to see Alex every couple of months and hopefully they could wait until he is around 1 to try a new treatment. It will be an injection that will hopefully disintegrate it completely. Of course things could change between now and then. He said that he would keep a close watch on it and if he needed surgery because of infection or because it may continue to grow then he could always go that route. But he would prefer to wait as long as he can and would prefer the treatment over surgery. He also said that Alex has the type of CH that is the better kind to have. I can't remember the types but one is multiple cysts that is harder to treat and Alex has the type that is just one.
So, how do I feel??? I feel good about the Dr. he seemed to know a lot about CH even though he said that they only see about 1 case a year. That's hard to imagine, at a big hospital only 1 case a year. I knew that this was very rare but that really put that less that 1% into perspective. I feel relieved that we know for sure what it is and that the Dr. is confident that it is treatable, although with CH there is always the chance of it coming back no matter what treatment you have. I feel somewhat frustrated that we will still just have to do the wait and see what happens potentially for a year. I am worried about what the medical bills are going to look like. I feel mentally and physically exhausted, all the wondering and waiting plus still trying to deal with the complications I have had from the c-section, I am tired but functioning! However, I feel blessed that I have a savior that already knows the outcome and carries me...even when I don't know it or how much I fight it and try to carry it all myself. I know that God will provide all of our needs: from calming me from the stress, taking care of Alex, meeting our financial, mental, physical and emotional needs. I am thankful for the most wonderful husband, what a gift he is to me and our children. I am also thankful for family and friends who uplift me. One day I might even be thankful that we had to endure this, there is a reason and a purpose. I don't know what that is right now and frankly I wish we didn't have to go through it, but I have faith enough to know that God's plan is divine and this is just a part of His plan.
Thank you all for your continued prayers for Alex and all of us!!!
Holly
So, how do I feel??? I feel good about the Dr. he seemed to know a lot about CH even though he said that they only see about 1 case a year. That's hard to imagine, at a big hospital only 1 case a year. I knew that this was very rare but that really put that less that 1% into perspective. I feel relieved that we know for sure what it is and that the Dr. is confident that it is treatable, although with CH there is always the chance of it coming back no matter what treatment you have. I feel somewhat frustrated that we will still just have to do the wait and see what happens potentially for a year. I am worried about what the medical bills are going to look like. I feel mentally and physically exhausted, all the wondering and waiting plus still trying to deal with the complications I have had from the c-section, I am tired but functioning! However, I feel blessed that I have a savior that already knows the outcome and carries me...even when I don't know it or how much I fight it and try to carry it all myself. I know that God will provide all of our needs: from calming me from the stress, taking care of Alex, meeting our financial, mental, physical and emotional needs. I am thankful for the most wonderful husband, what a gift he is to me and our children. I am also thankful for family and friends who uplift me. One day I might even be thankful that we had to endure this, there is a reason and a purpose. I don't know what that is right now and frankly I wish we didn't have to go through it, but I have faith enough to know that God's plan is divine and this is just a part of His plan.
Thank you all for your continued prayers for Alex and all of us!!!
Holly
Sunday, October 12, 2008
Only Two Weeks!!!???!!!
Wow, it's hard to believe that Alex is only 2 weeks old. Well 2 weeks and 4 days to be exact. It seems like he should be much older by now. I mean it really seems like ages ago that we set off at 7am to the hospital and 4 1/2 hours later he was born. I guess a lot has to do with the fact that we have already had to deal with so much. With my complications, which are still ongoing, and then finding the lumps and not knowing what was going on with him. I am sure that it will take forever for next Friday to arrive. We go to the pediatric surgeon to find out more about Cystic Hygroma, and what they will do for Alex. I am just anxious. It's the unknown that is so hard. At least when I know, no matter how hard it is to hear the news at least I know what it is I have to deal with. I need patience and a lot more faith! I think right now I am just so numb, it's hard to even comprehend what is happening. Plus, there is Ella. She is still adjusting to having a baby brother in the house. It must have just turned her little world upside down when he came home. She is calming down and adjusting. The first week or so she was good but a little more hyper than normal and acting out more. She is settling in ok. She is just my sweet girl. We try really hard to make sure she understands that while we now have Alex in our lives she is just as special and loved. She does love her brother. She wants to give him hugs and kisses all the time. I am just so blessed with this family, I have been entrusted with. I hope I serve the Lord well by being the kind of wife and mother He has called me to be.
Holly
Wednesday, October 08, 2008
Cystic Hygroma
Here are some photos of Alex's neck and back and what we think is a Cystic Hygroma. Never did I think that my first weeks of having this baby would be spent going to so many Dr's and so much uncertainty. I guess no one does, no one sees things like this coming. I have my good moments just full of faith and trust in God that this is just a bump in the road. Then I have those dark moments.....fear takes over and I only think of the worst things it could be, if it's not CH and even if it is in fact CH, many many complications can arise. I don't like those dark moments, it's the most horrible feeling right in your heart. I guess it's all a part of being a parent, just living life for that matter. We never know what will come our way. I am so blessed to have a God that knows my heart, comforts me when I am in the darkest of places. He loves Alex more than I do.....it's so hard to even comprehend how that can be. I am also so blessed to have Stephen. He is just so amazing as a husband,father and a follower of Christ. There is no one I would rather walk this road with than him and Christ one on each side of me.
Holly
Monday, October 06, 2008
Update on Alex
As you know, from the previous post Alex has a mass on his neck and shoulder. We went to our family Dr. who ordered an ultrasound. Alex had the u/s this morning but they really didn't know what it was, so they sent us over to the pediatrician at the hospital where Alex was born. We saw the same Dr. that looked over Alex when he was born and discharged him from the hospital so that was good that we were able to see the same Dr. The pediatrician feels like he is 90% sure that Alex has a Cystic Hygroma, which is not life threatening or cancerous….thank you Jesus!!! He will have to have surgery though. The Dr. talked to the pediatric specialist at Greenville Children’s Hospital and sent over the images from the ultrasound as well. The Dr. in G’ville agreed with the preliminary diagnosis but will see him next Friday Oct. 17th to confirm. He said Alex will likely have to have surgery but that they would prefer to wait until he is 3-4 months old before doing the surgery depending on the confirmation and severity. I thank you all for your prayers. I feel so much more at peace and calm but the past few days and especially the hours and hours spent going from one Dr. to another with most of them saying, “I really don’t know what this is” today has had my nerves shot! I ask that you continue to pray as the diagnosis still has to be confirmed and no one likes to see their baby have to have surgery! I did some research and the fact that we found it after birth is actually a good thing and not associated with a chromosome issue. Many are found while still a fetus and if that is the case it's usually Turner's syndrome or other abnormalitis like Trisomies. But his was found after birth meaning that it probably developed in the last month or so before birth, which means it's not associated with a chromosome abnormality. So anyway, I feel much better but will be anxious to get a confirmation and will be glad when the surgery is over. The research does say that even wiht surgery it can come back. So we will just have to wait and keep praying. Thanks you guys for your prayers and support. It means the world to me!
Holly
Holly
Sunday, October 05, 2008
Prayers Needed for Baby Alex
Last week we found a lump on Alex's neck. We went to the Dr. and she ordered an ultrasound for Monday at 9:30. She thinks that it is probably nothing to worry about but wants to be sure. He is only 11 days old and I just keep praying over and over that it's nothing. I don't know how I would handle something serious. Please lift him up in prayer. Overall I am dealing with this ok, but I have my moments where I just totally breakdown too. I will just be glad when it's over and we know what it is and can deal with it.
I attached a photo of Alex and Ella both at one week....can you tell who is who???
Holly
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