The babies are 4 months! And in one month, Gavin goes to 1st grade. WTF??? Where did the time go? He was as small as the babies one minute ago. Life is moving so fast and I feel like I am the only one dragging my heels. I don't want my babies to get big yet. I need more time.
The biggest news of late... Caleb is sleeping through the night! Whoo hoo! But Owen is not. So while it feels like a big acheivement, its kind of bittersweet.
Owen went to the ENT and thankfully, we are all good. No hidden clefts or anything odd in this mouth, other than tightness due to the muscles in his face. He is currently being casted twice weekly and he has another tenotomy on Tuesday on his clubbed foot. He has been using his hands so much, its so amazing to see. He can move individual fingers and even reached for a toy hanging from the bouncy chair this week over and over. It was great. Such a proud moment for me! Owen is too sweet. Every time he looks at me he smiles. It melts my heart.
We had our 4 month appointment the other day and it turns out that Caleb has mild torticolis (meaning his neck is bent to one side because the muscles are too tight or short). Most likely this happened in the womb or because of his reflux. He found a relief position and he goes to it so often that the muscles tightened. Just what we needed. Lucky for us, this changes our schedule none and he will begin having PT on the same days Owen has PT. Hopefully this will be resolved soon because Caleb has no patience and is quite loud when screaming, so I forsee PT being a lot of fun.
Apparently, Owen is not gaining enough weight. Caleb is 13lbs, 6ozs and Owen is 9lbs 13.5ozs. So we have been cleared to start solids. We are on day three of rice cereal and we have tried pears and today sweet potatoes. They are so cute covered in baby food. I myself, don't enjoy being covered as much, but its a hazard of the job. I am not worried yet about his weight, because he eats a lot. 4ozs every 3-4 hours and sometimes a little more. I am not sure where the food is going, but I am just praying that its nothing more than him needing a little rice cereal in his life.
I am a few days away from going back to work. It was supposed to be Monday but then tenotomy was scheduled and so we have casting monday now and tenotomy on Tuesday. So Wednesday is my first day back. I am sad to be leaving the babies. I miss them already and their little smiley faces. I will enjoy adult conversation and an uninterrupted, hot cup of coffee, but still, they are my babies and I wish I could be with them.
Caleb is screaming and Owen is looking like he is on the edge, so I am off to feed them before bedtime (theirs and mine!). Hope everyone enjoys their weekend!
Friday, July 30, 2010
Monday, July 19, 2010
What a weekend!
Its been a while, but I can honestly say that I had a great weekend. They haven't been bad or anything, just different with the constant baby juggle. But this weekend we got a peak at what life might be like as these two get a little bigger. We were able to clean the house in 3 hours, which may not sound like a great time to anyone else, but its insanely important to me and it had been taking 6-7 hours to get it done. 3 hours felt like old times! We went to Miss Emma Anderson's 1st birthday party and it was adorable. Emma was gorgeous with her white dress and her smile that just makes you melt. The twins were enjoyable and even napped in their stroller. We managed a trip to Stew Leonards which is one of my favorite places to shop. Literally. The vegetable aisle makes me happy. The herb cart makes me happy. The chiquita banana dancing makes me happy. We then went home where Erika was throwing Andy and Madison a birthday party and people held the babies all night. We drank some wine and relaxed. And for me, the best part of the weekend was yet to come! Sunday I got to go to the beach alone. Erika, Alyson and I packed our beach bags, our cooler and headed for Robert Moses State Park. We were on the beach, in our chairs, passing magazines to each other by 9am. I miss the ocean so much when I am away from it for too long. I love it so much and its always been the center of my summers. Going away to the beach, weekend trips to the beach, bbqs at the beach. I feel thankful that its easily accessible to me. We tanned and attempted to get in the water but it was freezing and rough, so we stayed about thigh high and tried to cool off. I sat and imagined what it would be like next year with the babies being 15 months old and Gavin trying to convince me he should be allowed in alone because he can let go of daddy in grammys pool. After the beach, I cooked a lobster dinner. Lobster (thanks to a sale at Stew's- $3.99 a lb) and farm corn, tomatoes, garlic butter and pesto potato salad. The whole thing just felt like summer!
Tuesday, July 13, 2010
A mothers guilt...
I know you have all felt it (well those of you with kids). Its the bad, guilty feeling that sets in once the child or in my case children are born and you are worried all the time that you are not meeting their needs. It can be small too, something along the lines of whether or not they are sitting in the car for too long with a wet diaper to am I holding Caleb too much and leaving Owen neglected. Oh wait, thats reserved for me, but you get the picture.
I worry a lot about whether Owens constant crying during casts or therapy will affect him negatively later in life. At the risk of sounding nuts, which if you know me, you know it happens from time to time, I actually worry if at that moment some ability to cope or something along those lines are forming in him and because he cried for his first 3 months on this earth, he will have issues later in life. Now, I have spoken to some moms who have been through this process and they assure me that that is not the case, but I do worry.
Lately I realize that I spend my day worried or feeling guilty really about everything. I have tons of guilt about Gavin. My relationship with Gavin is different now. Its currently centered a lot less around quality time and a lot more around "please get off the babies Gavin". I put him in summer camp. I did this because I cannot deal with the three of them alone all day. I feel guilt. Its probably better that he is in summer camp, busy playing, doing crafts, going to the sprinklers. But I feel guilty. I feel guilty because I put him in front of cartoons as a way to get a break. I let him eat more chips, cookies and crap than usual. We have to schedule alone time together.
I feel guilty about the babies. I leave Caleb home whenever I can because its easier to handle appointments with one baby rather than two. I sometimes turn the radio up in the car to drown out the crying babies. I accidently gave Caleb Owens formula causing him gas for a day and lots of crying. I want to put them for naps a lot. I sometimes do not want to be around them. Caleb can go in the pool and Owen can't because of the casts. I feel guilty.
I want to stop breastfeeding. Ha, that one right there causes us tons of tears. Everyone I know has had an emotional battle with breastfeeding. Whether they did, didn't, couldn't, or wouldn't. There is emotion behind it.
It may seem like this is confessional. But really, I am tired of feeling guilty. And I think it sucks that moms are plagued with these feelings after giving birth. No ones needs are completely being met when you have a new baby. Not yours, your husbands or your other childrens. Its a huge adjustment. Despite the rumors, I am not superwoman. I am just doing the best I can. Sometimes I freak out and cry or scream or put the babies in the crib with the mobile on and take 10 minutes to calm myself. I am not getting what I need. (Mostly, that would be sleep, time to exercise, time to cook, time to read, time to shower...time.) So I am going to work on not feeling this guilt. There is only so much I can do or we can do as moms as we struggle to handle or juggle everything. Everything.
I feel better already.
I worry a lot about whether Owens constant crying during casts or therapy will affect him negatively later in life. At the risk of sounding nuts, which if you know me, you know it happens from time to time, I actually worry if at that moment some ability to cope or something along those lines are forming in him and because he cried for his first 3 months on this earth, he will have issues later in life. Now, I have spoken to some moms who have been through this process and they assure me that that is not the case, but I do worry.
Lately I realize that I spend my day worried or feeling guilty really about everything. I have tons of guilt about Gavin. My relationship with Gavin is different now. Its currently centered a lot less around quality time and a lot more around "please get off the babies Gavin". I put him in summer camp. I did this because I cannot deal with the three of them alone all day. I feel guilt. Its probably better that he is in summer camp, busy playing, doing crafts, going to the sprinklers. But I feel guilty. I feel guilty because I put him in front of cartoons as a way to get a break. I let him eat more chips, cookies and crap than usual. We have to schedule alone time together.
I feel guilty about the babies. I leave Caleb home whenever I can because its easier to handle appointments with one baby rather than two. I sometimes turn the radio up in the car to drown out the crying babies. I accidently gave Caleb Owens formula causing him gas for a day and lots of crying. I want to put them for naps a lot. I sometimes do not want to be around them. Caleb can go in the pool and Owen can't because of the casts. I feel guilty.
I want to stop breastfeeding. Ha, that one right there causes us tons of tears. Everyone I know has had an emotional battle with breastfeeding. Whether they did, didn't, couldn't, or wouldn't. There is emotion behind it.
It may seem like this is confessional. But really, I am tired of feeling guilty. And I think it sucks that moms are plagued with these feelings after giving birth. No ones needs are completely being met when you have a new baby. Not yours, your husbands or your other childrens. Its a huge adjustment. Despite the rumors, I am not superwoman. I am just doing the best I can. Sometimes I freak out and cry or scream or put the babies in the crib with the mobile on and take 10 minutes to calm myself. I am not getting what I need. (Mostly, that would be sleep, time to exercise, time to cook, time to read, time to shower...time.) So I am going to work on not feeling this guilt. There is only so much I can do or we can do as moms as we struggle to handle or juggle everything. Everything.
I feel better already.
Friday, July 2, 2010
Our meeting with the geneticist...
Nick and I both thought it was a little odd that they wanted to meet with us. We have been over Escobar and everyone previously agreed thats what he most likely had given the symptomology. We did not think we needed to go back over it, but they asked that we come in and have a meeting and they asked that we both be available for bloodwork. So we went.
We sat down with the doc and he basically explained that they found two mutations in Owens genes. One from each of us. However, something odd happened. The mutation is exactly the same in the gene from Nick and the gene from me. He explained it in laymans terms for us and basically each gene is a book. They read the book to find where the spelling errors are, i.e. mutations. Most people have spelling errors in their genes. Almost all do. However, its unlikely that two different people, with two different ethnic backgrounds have the same spelling error. Our results are saying that Nick and I both have the same exact spelling error.
This has a few implications and so we need to be tested to see if there has been a mistake. They think there has been a mistake. This result has told us that Owen has the fatal or lethal version of Escobar otherwise known as Multiple Pterygium Syndrome. Now, usually the lethal version causes late term miscarriages or stillborn death or presents you with a very sick baby, usually having respiratory issues and underdeveloped organs.
We have had ultrasounds and a full body MRI on Owen and one fetal echocardiogram and one after he was born. Owens organs are great. He is in no respiratory distress. He is thriving. He gains weight. He eats from a bottle.
So what could have happened? There are two scenarios that they are throwing out there now. Either one of us could have had an absent gene, meaning if either my egg or his sperm was missing a gene, which could happen, then the test would show the same book for each of us and of course the same spelling error. Or, Owen is one lucky boy that has lethal multiple pterygium syndrome and its not presenting that way, its presenting as just regular Escobar.
I am not thrilled with the results and when she handed me the genetics report I felt like I did not want to take it. If this is a mistake then I don't want a piece of paper that says the word lethal on it. I would prefer no one puts this in writing.
I spent a lot of time trying to make them convince me that things will not suddenly take a turn for the worst and the geneticist feels quite positive that Owen would be sick now and that its not the type of situation where things are going to go downhill. He feels confident that there was a mistake. He explained that there are two sides to people, the molecular and the clinical. Just because Owens genes say one thing, doesn't mean it is, especially since clinically, he is doing great. He is healthy. The doc seems to feel that the clinically is more important in this instance. For me it feels like a leap of faith. I was under the impression that once they read those genes, they pinpoint factually and exactly what is going on in your body. Now they are asking me to believe its different because it looks different.
It is different though. I am looking at him right now and he is big and cute and has spent the morning smiling at me. He ate his 4 ounces. He tried to shove his whole hand in his mouth for a half hour. He kicked his legs. He watched his mobile with big wide eyes.
I am trying not to feel bad about this result because as I have said repeatedly in this post, Owen is healthy. I am trying to put my stock in the idea that there was probably a missing gene and they will tell us and tell us all is fine. I am trying to be confident that Owen has no signs of any of the problems of lethal multiple pterygium syndrome. His symptoms are those of the other Escobar. I am trying to be calm, not freak out and operate as if yesterday meant nothing.
But just in case, say a prayer, think a good thought, do a spiritual dance or whatever it is you do that Owen remains healthy and thriving, no matter what the tests say. Thank you.
We sat down with the doc and he basically explained that they found two mutations in Owens genes. One from each of us. However, something odd happened. The mutation is exactly the same in the gene from Nick and the gene from me. He explained it in laymans terms for us and basically each gene is a book. They read the book to find where the spelling errors are, i.e. mutations. Most people have spelling errors in their genes. Almost all do. However, its unlikely that two different people, with two different ethnic backgrounds have the same spelling error. Our results are saying that Nick and I both have the same exact spelling error.
This has a few implications and so we need to be tested to see if there has been a mistake. They think there has been a mistake. This result has told us that Owen has the fatal or lethal version of Escobar otherwise known as Multiple Pterygium Syndrome. Now, usually the lethal version causes late term miscarriages or stillborn death or presents you with a very sick baby, usually having respiratory issues and underdeveloped organs.
We have had ultrasounds and a full body MRI on Owen and one fetal echocardiogram and one after he was born. Owens organs are great. He is in no respiratory distress. He is thriving. He gains weight. He eats from a bottle.
So what could have happened? There are two scenarios that they are throwing out there now. Either one of us could have had an absent gene, meaning if either my egg or his sperm was missing a gene, which could happen, then the test would show the same book for each of us and of course the same spelling error. Or, Owen is one lucky boy that has lethal multiple pterygium syndrome and its not presenting that way, its presenting as just regular Escobar.
I am not thrilled with the results and when she handed me the genetics report I felt like I did not want to take it. If this is a mistake then I don't want a piece of paper that says the word lethal on it. I would prefer no one puts this in writing.
I spent a lot of time trying to make them convince me that things will not suddenly take a turn for the worst and the geneticist feels quite positive that Owen would be sick now and that its not the type of situation where things are going to go downhill. He feels confident that there was a mistake. He explained that there are two sides to people, the molecular and the clinical. Just because Owens genes say one thing, doesn't mean it is, especially since clinically, he is doing great. He is healthy. The doc seems to feel that the clinically is more important in this instance. For me it feels like a leap of faith. I was under the impression that once they read those genes, they pinpoint factually and exactly what is going on in your body. Now they are asking me to believe its different because it looks different.
It is different though. I am looking at him right now and he is big and cute and has spent the morning smiling at me. He ate his 4 ounces. He tried to shove his whole hand in his mouth for a half hour. He kicked his legs. He watched his mobile with big wide eyes.
I am trying not to feel bad about this result because as I have said repeatedly in this post, Owen is healthy. I am trying to put my stock in the idea that there was probably a missing gene and they will tell us and tell us all is fine. I am trying to be confident that Owen has no signs of any of the problems of lethal multiple pterygium syndrome. His symptoms are those of the other Escobar. I am trying to be calm, not freak out and operate as if yesterday meant nothing.
But just in case, say a prayer, think a good thought, do a spiritual dance or whatever it is you do that Owen remains healthy and thriving, no matter what the tests say. Thank you.
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