A quick update...

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!

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!

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.

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.

Escobar

Today I spoke with the geneticist and its been confirmed that Owen has Escobar. I also just was made aware that today is the first annual Arthrogryposis Awareness Day.

With respect to the Escobar, I just knew the tests would come back positive. After reading the symptoms of some of the kids I have come across with Escobar, Owen has just about every one of the symptoms.

Nick and I have an appointment with the geneticist on Friday to be tested to see about who is a carrier. We should also get some more information which I will report on here when I have a chance.

I am grateful to know what it is and at the same time, it doesn't really matter. It doesn't change what we are doing now or what we will do in the near future to help his body.

Early intervention has begun and we are doubling up on therapies now, both at HJD and at home. They are working on Owens neck and attempting to release his shoulders and ribs. Imagine your shoulders are hunched really high, that is what Owens feel like. Now imagine your ribs followed your shoulders and the opening of your ribs is up in your chest area and you will know what Owens feel like. The therapists feel like with muscle releasing or stretching and/or massaging those areas, we may be able to move these things down a bit.

Aside from all that, both babies are cooing like crazy and smiling. Owen has dimples when he smiles really big and Caleb does not stop trying to talk. I have a sneaking suspision that they are starting to teethe because they are eating their hands, whining and drooling a lot. We shall see if I am right soon enough.

Gavin is feeling better. This was a doozy of a virus! Poor baby. His tonsils were as big as golf balls. I imagine they will want to take his tonsils sooner than later and if it saves him a lifetime of strep (like I had) then hopefully it will be worth it.

Nick is home for the next 5 days! I am so happy. We are venturing out to the pool tomorrow and then to my parents for a couple of days. I am looking forward to having him around and for all of us to hang out.

I am also really looking forward to the farmers market this weekend. I really into trying to buy more locally grown food.

I will keep you posted about what the geneticist says!

Traveling with twins and one very active 5 year old...

This is a very long story and if you are wondering, yes, we are crazy. I thought it, the people at the airport thought it and its now been confirmed. We took the twins on a airplane. And not one airplane mind you, they have now officially been on 4. But allow me to begin at the beginning and not get too far ahead of myself.

After much thought and discussion (and a little convincing from Grandma Mary Anne) we decided to take a trip to St. Louis. It was hard for me to drop therapy for a few days and doctors appointments (yes, I am being serious) because I did not want Owen to miss treatment. I thought and thought and the idea of a break for all of us seemed like a good idea. Not to mention, we aren't going on vacation this year and Nick had not been home in 2 years and I knew Mary Anne and Joe would love showing off their new grand babies. So off we went.

Tuesday night of last week we arrive at LaGuardia Airport. We have a bag for me, a bag for G, a bag for Nick, two carriers, two car seats, two car seat bases, one double snap and go, one diaper bag, one breast pump bag, one cooler of milk and one bag for the the babies, Nicks book bag and my purse. And I packed light! Thank God for curbside check in. We check three bags at the bargain rate of $25 per bag and move into the security. We are a freak show. We literally have about 12 of those bins lined up with crap in them and we each have to hold a baby as we go through the metal detectors. Their car seats and stroller must go through on the coveyor. Its just nuts. But we make it through with a little sweat and some apologies to the waiting passengers and we move into the gate area. Its about 7pm and our flight leaves at 8:45pm. We grab dinner and find a corner we can take over. We unpack the babies and we wait to board our 3 hour direct flight to St. Louis. I stupidly think to myself, "wow, we are almost through this" and I begin to relax.

All of a sudden, the sign in front of the gate says we are delayed. First an hour, then two, then two and a half. People are grumbling and there is an announcement about delays in other states which caused our plane to be late coming into NY. A further announcement about a half hour later tells us that the flight has been cancelled. The crew has been on the plane for more hours than they are allowed so they cannot turn around and fly to St. Louis. Sorry for ya. The crowd goes wild.

We sit and watch and Nick sneaks off to speak to an AA rep at another desk. Its about 10:30 pm at this point. He is told by the woman to hang out because they are attemmpting to find another flight crew. In the meantime, they are announcing over and over that they cannot control weather and getting upset isn't helping anyone.

At approximately 11:30 they announce that they have found a crew and the flight is on! Yay. Everyone settles into their seats at the gate and I set off in search of a plug so that I may pump. Do you know that there is not one plug in the bathrooms that work? I eventually end up in the space behind the desk at a nearby gate where they keep things like the wheelchairs. I am informed that in 5 minutes a plane will be unloading and that everyone will be walking by me. Have you ever tried to pump breast milk under such pressure? Its not a slow process, nor is it one that you would like to share with a plane full of people, so I do the best I can. But its not much milk and I am starting to worry that I will run out of food for these two.

At 12:40, they announce that our flight has been cancelled. A flight attendant called in sick. I am sitting there thinking about how stupid the person is who just told this crowd that that is why we are not leaving. Lie. Say weather. Say anything. But don't tell a crowd that you have already angered that has been sitting in the airport all night that we cannot leave because a flight attendant called in sick. For the love of God, I will hand out the damn sodas.

We go home. They aren't giving tickets out or vouchers. They are telling you to call a number to complain. There is nothing they can do so they say. We are rebooked the following day for a flight that will layover in Chicago. We are due to leave at 9:55am and arrive in St. Louis via Chicago at 2:35pm.

The following morning, we all get up and get ready again. The few things we had to unload from the car are packed back up and we go back to LaGuardia. We have to go through security again. I want to cry. We make it to the gate and we should be boarding shortly, but no, of course not. We are delayed due to weather in Chicago. We both attempt to breathe and keep our heads about us, so we grab coffee and breakfast and settle in. And one hour later, they announce we will be boarding! We pack up all the crap and go board the plane. We undo the carriage, the car seats, while holding the babies and carrying 5 bags each. We get on the plane and get settled. Gavin has been great this whole time. He has been keeping himself busy and being such a trooper with all the delays. The flight attendant takes him up to meet the pilot. He gets an AA sticker and a card all about the plane we are on. We buckle our seat belts. The captain gets on the speaker and we have been delayed...two hours. Then five minutes later, our flight has been cancelled. Get your bags and get off.

I am wondering if this is the chain of events that will send me over the edge.

Now, I have had enough of American Airlines. I do not ever want to fly with them again. My stroller is stuck on the plane. Nick is on the line holding Owen to talk to one of these idiots and I am standing on the side of the desk holding Caleb. Gavin is talking to anyone and everyone. The gate is chaos again. I finally get someones attention to ask when I can have my car seats and stroller. The lady feels bad for me, so she gets the pilots to get them off the plane and she begins to try to put us on another flight. Shock and awe, there is no more until the following morning. I know if we go home, we will not be going to St. Louis. I cannot do this again. We beg her to find something. 25 minutes later she tells us she has us booked on US Air to St. Louis via Pittsburgh. We will have a layover and we will have to get our crap and get to another concourse, but I say lets do it or else we will have no vacation at all.

We wait an hour for our luggage, another 20 minutes for the shuttle and we finally make it over to US Air. We check in. There is only one seat reserved on the plane for us. Not three and they can't seem to find any more. The lady overrides the system though determined for it to not be her problem and sends us through security to the gate. Yes, security again. FML. We get to the gate and go to the desk. We are told to sit and wait, they need to solicit seats. If I could go back and choke the lady at AA who told us she got us on this flight, I would. I really, really would.

I go off to look for a plug because of course, I need to pump. I find one in the bathroom this time, but I have to stand in the corner, facing a wall, next to the paper towel holder and the garbage. I could not be more thrilled.

When I get back to the gate, they still have not found us seats. The plane has boarded and I just begin to cry and so does Gavin. Gavin cries loudly and miserably. And then the Gods smile on us. The flight attendant comes over and says they have found us seats. We finally get on a plane that is going to leave the airport. We are on and settled and moving. Off to Pittsburgh.

We land in Pittsburgh. We get off the plane and oh yes, we are met with the annoucement that due to impending thunderstorms, the airport is closed. I know that this would only happen to me in life. I ponder bringing the kids into the bar so I can have a drink.

We eventually do get to leave Pittsburgh and we arrive in St. Louis. Its 9:30 pm, but we made it.

We have a lovely few days where Gavin gets to go up in the arch, go the the stadium, go to the circus where he is pulled on stage and conducts the band, we go swimming at a friends pool and my mother-in-laws friends throw me a baby shower for the twins. We see friends and family and I get a massage. Nick does a little shopping. We eat great food, we visit, we drink some wine and we have a wonderful time. It feels like a vacation (except for the 3am feedings).

But my luck strikes again and Gavin gets a 104.4 fever and we end up at the childrens hospital for an afternoon because I cannot seem to get it down despite a family friend calling in a precription for him due to the raw red throat he has. I have decided that I am now going to begin rating hospitals and hospital food if we get admitted. My future brother in law mentioned I may be able to do like a hospital version of Zagats. I am going to think about it. Maybe I could make a few bucks.

It could be strep, it may be mono. We go home to pack up and get ready to come home.

Our flight home is relatively uneventful. Besides Caleb throwing up on me three times and leaking breastmilk which leaves a big wet circle on my left side, our flight leaves on time, it arrives in NY early and I only have to tell off one passenger for loudly mentioning as Caleb is crying that his failure to bring his ear plugs could be a fatal or life shortening event in his life. After I let off some steam on him, he is positively delightful, wishing us luck on his way out of the plane.

Luck huh? As the car overheats all the way home and we drive with the heat on high over the Whitestone in 90 degree weather with 90 percent humidity, I think about luck and how I am not sure I need any more luck wished upon me, it seems I may do better in this life without it.

The last two weeks...

Its been almost 2 weeks since I posted. Its just been really busy around here as usual. Nick came home and Mary Anne went home. We have had PT and OT every day and I suppose the most interesting news is that we were given 5 days a week PT through early intervention for 45 min a session. That was great. I was ready to battle for 3 days a week and after I said what I had to say, they said okay to 5 days a week. Aunt Kathy came to stay for this week and Gavin graduated from kindergarten! I cannot even believe that he is going to first grade. I remember when he was the size of the twins. He is growing up so fast but we are so proud of him. I will post pics of him in his cap and gown when I get a minute.

The babies are doing great. Both are smiling and cooing, which is adorable. Owen is moving his head more and more from side to side, which is something he could not do at all when born. He is wearing his bar between his braces and it is heavy and quite industrial looking, however, much to my surprise he is able to kick that thing. I imagine its a good workout for his thighs. I love to see him smiling. I have been so worried that with all of the crying, through his therapies and appointments that he may not be a happy, well-adjusted child. But I am assured by people who would know, that although this year will most likely stink, Owen will come out of this a happy boy. I am trying to just keep that in mind as we go through this process.

Caleb is so cute. He smiles so much at me. He almost looks shy right before he does it and you can see how happy he is. I love it. He also coos a lot. He will ooohhh and aaahhh with me as if we are having a conversation. I cannot explain how cute it is.

And G is off for the summer! We let him have a few friends over for a graduation bbq and we celebrated not only his moving on to 1st grade, but also to the school around the corner next year. We will miss St. Peter's but he will be great at Lincoln and its a great school and its a block and a half away. No more afterschool until 6pm, no more stress in the evenings while we try to squeeze in homework, dinner, bathtime, time with us, and scooby. I think this will be a good change.

I am looking forward to my last month off before I return to work. I have all three kids home (ha, I know I am crazy) and I hope we can figure out how to enjoy this summer around appointments and therapy.

Coming up next week is more OT, PT, meeting our early intervention therapists and a short trip to STL. Stay tuned.

Kate made it through unscathed...

And I think she will still want kids one day!

We have made it through week one of no daddy and thank God for Kate. She was awesome. I was worried not having Nick here and all those night feedings, but she did amazing. Nick and I have a rhythm to nighttime feedings. He brings the babies to the livingroom, while I heat bottles and make formula. He turns on the tv, I grab spitrags. We sit. We do not speak to each other or the babies unless one of us wants to watch something else. We feed, we burp, we change, we swaddle and we rock. We wait. The babies eyes begin to close and we put them in bed. If I am lucky, I pumped at the last feeding and don't have to do it until the morning feeding. The process lasts 30-40 minutes and we are back in bed. Kate mastered the nighttime baby dance. I am going to miss her dearly.

This week we had daily therapy, OT on Tuesday, appointment with ortho on Tuesday and the all important and somewhat dreaded MRI. We also had our orthotic appointment where Owen got the bar put between his braces that help keep his feet positioned and his hips a bit more open. But, back to the MRI. So Owens brain is normal. Yay! I was terrified that because he has not smiled at me that he wasn't in there. I would go back and forth in my head feeling confident he was fine and then terrified he was not. But he is and of course, approximately 20 minutes after I found out that Owens brain was normal, he proceeded to smile a huge smile for the assistant orthotist, a bald man with huge teeth. Of course. So mommy still has not received a smile, but that man has. Nice. Owens spine is borderline for a tether. My understand of a tethered spine is that when you are born your spinal cord is longer to accomodate for your growing. If its tethered, there is a pull in there somewhere where the spinal cord must be released. Owens spinal cord is at 2-3 and should be a little longer however its not conclusive. So we wait until he is bigger and see how things are developing. Great news. Big sigh of relief.

This week brings Grandma Mary Anne and daily PT and OT. We have our much anticipated meeting with Early Intervention to start home PT and OT (Yay!!! I cannot afford Manhattan parking any longer!). And of course, this week brings Nick home and I cannot wait. This year is so different than last year with respect to my 10 days home without Nick. I was blogging then and if I remember correctly, I was bored and awaiting Lolas shedding to have something to clean. Oh what a difference a year makes. Lola is still shedding and I am still vacuuming, but its so much different. There isn't much boredom or down time with two more kids. There is not much relaxing, napping or quality G (Gavin) time.

Anyway, its all almost over and I can't wait to see my husband.

The babies are 8 weeks!

We made it to two months! Caleb is smiling a lot more now and most recently, this morning, at the toys that hang from the bouncy chair. He has been staring at them and smiling all morning. Owen smiles too, but it tends to be in response to gas. I am confident that he will soon find us as amusing and will smile at us as well.

Last week was the normal run of appointments. We had therapy every day and OT on Tuesday. We had our hernia checkup appointment and all looks great. We also had our 2 month check up. Owen is 7lbs 10oz and Caleb is 10lbs 9oz (chunker). Owen is 18 and 3/4 inches but thats without being stretched. We think this is an increase of3 and 3/4 inches. Caleb is 23 inches (increase of 5 inches).

We saw lots of family in the last week. We had Peggy this week to help out. She took Gavin back to DC for the weekend. As he left our house he was yelling to his friends "I am going to meet Obama." When I asked him what he would say to the President if he met him, he told me "I am going to ask for a bigger car." I guess sitting between two car seats in a booster in the backseat is proving to be annoying for Gavin. Anyway, he did not meet the President nor did he acheive getting us a bigger car but he did make it to the zoo and to Aunt Meaghan's house. Peggers brought him home on the train, which he loved.

Yesterday, Markus and Maureen visited from Atlanta on the way to Vermont. It was so great to see them and they were awesome while they were here, helping us out and providing endless hours of entertainment for Gavin (poor Maureen!).

We also went to Alyson and Bri's for the first BBQ of the season. It was great to see Kristen and Andrew and Beckarine. Lots of hands to hold and feed the babies, not to mention an awesome spread. Al outdid herself with the food. It was a great day.

Kate Sedey has arrived for her week of torture! Just kidding. But Nick leaves for Utah today for 10 days and Kate and I are doing baby duty together. Nick and I are actually scared that between Calebs screaming (a touch of colic, for fun) and the nighttime feedings, our children will never have cousins.

Yes, I did say Nick is leaving for 10 days. I know, I am nuts. However, he will get to hike and camp Zion National Park with the 6th grade and I know he loves that. I am not sure if hanging with 40 6th graders night and day is relaxing, but I am hoping they let him sleep through the night.

I am nervous about the week. Lately, when we have people helping out, its a third set of hands and its often still hectic. I just keep quietly begging the babies to be good this week and not have any crazy issues. Lets keep the fevers, crying, and stomach issues to a minimum and the sleeping to a maximum. Wish us luck!

This week is an important week. We have PT every day, we go back into casts for a while and we have our big, full body MRI to see if Owens brain and spine are normal. I know they suspect his spine is not, but please dear God, let his brain be fine. Please say a prayer or wish for good karma for him and that everything is normal.

I hope you all are having a wonderful, relaxing Memorial Day weekend!

My husband is pretty amazing

I imagine he may be a bit embarrassed that I wrote this, but it needs to be said. He has always been a wonderful husband to me and he has always been a wonderful father. I could not have picked better. But to be able to maintain wonderful husband and father status over the last two months has been amazing. For instance, and there are a million instances I could write about, but take this weekend for example. He came straight to the hospital to help me juggle three kids (two of which are "well" children who could not be near the sick kids). He took two kids home and did dinner, a feeding, bath time, dishes, and then came back to bring me clothes and dinner. He did nightime duty alone and successfully woke to feed Owen. Not for nothing, Nick once slept through a Tool concert, so sleeping through Owens small cries was more of a probability than a possibility.He did breakfast duty with Gavin (it was leftover chinese, but it counts!) Did laundry, got everyone clean and ready and out the door to come relieve me for a while so I could go spend time with Owen and Gavin. I went back to the hospital for the night and again, he handled two kids and managed to fold laundry, clean the kitchen and bathroom and make it so that when I came home, the house was spotless and the kids were happy and waiting for Mommy. He is just amazing. I know, its his job to take care of his kids but lots of dads wouldn't do all of the things that Nick does in order to keep me and them happy. Lots of moms would come home to a disaster area and have to work to restore order. Instead, he took a stressful situation and did double the work. I am just so thankful that I have him.

For the birds...

The week was good. This weekend is for the birds! Aunt Beth was here and it just so happened that I did not have so many back to back marathon city days, but rather one hour appointments where I could leave Caleb home with AB and Owen and I could run. It was so easy with one baby! I remember how hard one baby was when I just had Gavin but now I have a whole new perspective!

Monday we had thyroid bloodwork. That's it! Not a bad way to start the week.

Tuesday we had OT, PT and Ortho. OT made Owen new hand braces and they are awesome! His hands are completely open in them and when I take them off, they stay pretty open. The splints also function to take his thumb out of his palm. I never saw Owen move some of his fingers until after wearing these braces for a few days and I am just amazed! He can move some of the tightest curled fingers and its just awesome to see. We also got braces to keep his arms straight since he can bring his hands to his mouth, but can't bring them to his hips. Once the ortho was done looking at him, she felt he needs more PT especially for his foot, so we were approved for and have been going to daily PT for 14 sessions.

Wednesday was PT. I love PT. Its so good for him. He doesn't love it, but it changes his body.

Thursday was our PT evaluation for early intervention and then PT in the city.

Friday started off ok. Caleb was terribly fussy from 2am on. He would not sleep well, was screaming his head off and was eating one ounce at a time. He is normally a piglet so it was odd. I had to take Owen at 7 am to PT, so I left AB with him and told her he is really fussy. I went to PT and met with the ortho for a quick foot check. Grabbed Gavin from field day and we all went up to mom and dads for a visit. I had been looking forward to visiting all week, when there would be so many hands to hold the babies!

We get out of the car at mom and dads and my dad takes the car seats inside. Caleb is awake and fussing so he takes him out of his seat. He holds him for one second and says to me "Sara, Caleb is burning up.". My mom used the ear thermometer on him and his temp was 101.6! I call the pediatrician and she says to get a rectal thermometer, take it 2 more times and call her. I do that and its 102.2! We pile back in the car and drive down to Westchester Medical Center, where I am sitting writing this entry.

Caleb was admitted because when you are this young, a fever that high could mean meningitis. So this poor child had to have a spinal tap. So far the initial results are good and they do not think meningitis, but we are waiting to see the results of everything because his ears and throat look fine. Please say a prayer that its a cold or something simple.

We will be here at the hospital for another 24 hours at least receiving antibiotics.

It doesn't seem to stop.

Westchester Medical Center is like the Ritz of hospitals. I have a double bed, a huge flat screen, a phone, a remote that turns off the lights, works the tv and calls the nurses, a glider chair. Honestly, if you have to go anywhere, you should come here.

I am just amazed and need to vent...

Let me begin by saying that I never once in my life have asked anyone what was wrong with their child, let alone themself. Even when some sort of difference was glaringly obvious, I am the type of person who ignores it and maybe even stupidly acts like I did not notice it if and when its brought up. So its blowing my mind how many people ask about Owen. In my mind, Owen looks pretty "normal" for lack of a better word. His chin is a little small, but other than than, he looks very much like Gavin when he was born. We looked at G's baby pics tonight and it was fun to see how in some pics Gavin and Owen are so much alike and in others Gavin and Caleb are the spitting image of each other. I am not delusional. I see the birth marks. I see his little chin. I see lower set ears. I also see my adorable and sweet boy with big brown eyes and perfect pink lips that I love. But the world sees Owens birth marks and his hands with curly fingers or his braces. They see the casts. And to my dismay they ask. What happened to his hands? What happened to his legs? What's on his face? These are not people I know. These are random strangers who are in the elevator as I leave the Hospital for Joint Diseases, where one might presume that the name of the facility itself may indicate why the hell I am there with my newborns. These are people on the street, who peak into my double stroller, thrilled to see twins and then feel the need to ask. Why? Its not your business. I don't know you and won't know you. Does it cross your mind that you are looking at the babies I grew inside of me and you asking what is wrong with one of them? Finding out there is something wrong with your child is nothing short of a nightmare and for some reason you feel I should expain it to you? I know I sound angry. I am. I am also tired. It feels rude to me to ask. And I am angry because I have yet to come up with a clever retort, something along the lines of "what's wrong with your manners?". Instead, I explain. I give far too much information to a complete stranger about my child. I don't know why. I am going to have to become more clever or just pretend to not speak english or something.

My boys

Another week under our belt

I have to say, I am thrilled this week is over. We had lots of appointments and the surgery of course and I am so glad its the weekend. Owens healing so well from surgery. His cut is thin and looks great. Owens testicles are undescended (I am sure one day he will thank me for putting that on the Internet), so they surgically brought one down when they did the hernia as well, so those stitches look great and he seems to have no discomfort.

This week we also had our neurology appointment. I was afraid of this appointment. The pediatric ortho had mentioned that due the fact that Owens feet are asymmetrical, one bending up and one bending down and under, that there may be a problem with his spine. After meeting with the neurologist, I think she thinks they will find something as well. Owen has some dimpling at his joint contractures. Dimpling may indicate that there is a deformity in the spine. So we are going to have a full body MRI to see what is going on. The neurologist was very happy with the sensations in his feet and legs, the fact that he can feel is good. He has good reflexes and he has strength in his legs and feet, as well as in his arms and his grip. All of these things are good for his chances at mobility later in life. I cannot wait to have the MRI and just know what is going on in there. It will also tell us if his brain looks normal. I think his brain is normal because of the way he looks at me and follows me and because I just do. I can't explain how or why I think a 6 week old has a normal brain, but I do. I guess I will definitively know after the MRI.

We had a really good hearing appointment. Owen can hear out of both ears. His nerve is perfectly normal. He has some fluid or possibly a smaller space in his right ear that may be making things a little muffled for him, but she said a little help from the ENT and he will be able to hear us perfectly. It felt great to have a good result.

By Thursday, I felt like we were finally checking things off the long list of things to be corrected. Hernia- check, hearing- check, right testicle-check.

Friday we had OT, PT, Ortho and Pediatrician appointment. PT and OT were great. Owen may not love being stretched, but when he is done, he is long, straight, loose and feels completely different to hold. He bends. I try to do what she does at home, but I just do not acheive the same result. Maybe its the amount of pressure or placement of her hands or just knowing what you are feeling for. Needless to say, I try and hopefully, he is getting something out of it. As for his feet, both are attempting to revert back to what they were, however, we have been trusted to continue to stretch them and wait to cast again. We will have another round of casting, another tenotomy and more braces. Its an ongoing process. Owen hates having his feet stretched and he cries the whole time. As you can imagine, this is not motivation to do it for a million hours a day. I wish there was a way we could explain to him. Instead, it feels like we are just hurting him. I need to toughen up or get thicker skin. If I did not do it and one day he could not use his feet, he would probably ask me why I didn't do it. So we keep on pushing.

We were told we just got approval for our genetic testing for Escobar Syndrome. If any of you have googled Escobar, you may find that what you read is really terrible. There are things about progression and respiratory problems and death. I have met with our genetisist and asked him about these things. I am told, by him, that the progression usually refers to the scoliosis. Some kids with Escobar are born without scoliosis, so it progresses and can cause respiratory issues. Owen was already born with the scoliosis. His lungs are used to breathing like this. Not to say that it could not get worse, however at this time, we are not worried and neither is anyone else. Sometimes the internet is not a friend. The one thing I can say is that with respect to the symptoms that come with Escobar, Owen has the majority of them. I would imagine that we will be told that is what he has. The genetist thinks so and so does the neurologist. We shall find out soon enough.

Caleb is good. The reflux is better sometimes now that he is on the Prilosec. But most importantly in Caleb news... he started smiling! Not smiling when he has gas either, but actual look you in the eye, smile. He smiled at my mom first, but today, he looked at me and gave me a big smile. It was so damn cute. It made me so happy.

Gavin is good too. We got his kindergarten graduation outfit this weekend and he has been riding his bike like a madman. Aunt Beth is in town helping us, so he is making her play all different types of games with him and she is indulging him for now.

Next week we will make appointments for the MRI and the eye doc and we have thyroid testing, OT, PT, ortho and our early intervention PT evaluation.

Hope everyone has a great week!

We are getting discharged soon...

Owens surgery is over and I am thrilled. I am sitting in the step-down room with Owen in my arms (multi-tasking) and just watching him breathe. Surgery went well. It took a lot longer than expected, but apparently due to his chin and mouth being small, its very hard to intubate him. The word intubate just seems too big for Owen. He shouldn't have to be intubated. Anyway, right at the time where I was getting seriously worried, Nick asked the nurses if everything was ok and they assured us it was. About 20 minutes later, we could see him in recovery. He looked good, had good coloring and although he was still asleep, he was moving his arms around. Soon after they gave him tylenol suppositories, he woke and understandably, he wasn't thrilled. I got the chance to hold him through the recovery room process and until we were transferred to the step-down unit where we still are. However, I had to leave him with Nick for his overnight stay and it killed me. How could I leave him? How could I not go home to Caleb when I had his dinner in my bag and needed to provide him with more for today? How could I not see Gavin for approximately 24 hours? Ahhh, the guilt. I had to go and I did. I was back early this morning in time for Nick to go work and heard all about how Owen had a good night. I am glad he got some sleep. His incision sites look good. He has trouble latching because of the intubation, but they assure me that will pass. Although NYU has been great and the staff great and they are really into patient (and parents) being happy and comfortable, I am ready to go home and have all my boys together.

We cannot thank you all enough for the thoughts and prayers.

I can't thank the people who have helped us over these last 6 weeks enough either. From driving Gavin to school everyday and home on some days to bringing food to us, sleeping over and taking a feeding, sending us cards and letters telling us that we are doing a great job, we really appreciate it. I feel like I say that a lot, but I am not sure how to express what we feel, except to say that we feel so lucky and blessed to have all of you in our lives. Thank you.

Mother's Day, this past week and tomorrow

I am going to attempt to be short and sweet here, since the babies just went down and if we don't sleep now, we might as well wait for them to get up in two short hours, or else the small amount of sleep we get doesn't feel like sleep, but rather a tease and we both end up cranky.

Mother's Day was great. I spent time with my family and had good food, laughs and got to take a break while everyone else fed and held the babies. I even got a nap in the big chair in the livingroom. I felt like I earned this Mother's Day. Not that I have not been entitled in the past, I am a mother, but lately, I have earned my stripes.

This past week was actually an easy week as compared to the last few. I had casting on Monday with the fitting for Owens new orthotic braces. The doc rushed the braces because of surgery tomorrow. It would have been hard to make or have a cut where his hernia is and thigh high casts. So he gets a casting vacation. Monday I was on my own with all three kids, so that was a little crazy. I really do not have enough hands for all three kids. While Owen is crying because he is being manipulated, Caleb is crying because he is hungry and hates his carseat and Gavin has to pee. I am not sure how to split myself. So the nurses take Gavin to the bathroom and I balance a bottle in Calebs mouth with pushing the pacifier in Owens. I find this combo frazzles me. So Tuesday, I enlisted the help of my mom. We went to OT and PT. We got new hand braces and I learned a few new ways to stretch Owen, some of which he liked. Wednesday I had nothing and so I finally took the babies to meet their great grandma and grandpa on my Moms side. I know they have been really worried and not understanding Owens condition, so I thought seeing him and holding him would help them. It did. They love both of the boys and think they look like little dolls. Thursday, we got the casts off and the new braces on. I called my Aunt Karen and asked if she would come with me and she did. It was great to have her help and I was happy for the company as well. Owens casts are a nice change. They are only from his knee down, so that is nice. We are able to work his knees and give him a bath, touch his legs and feet. It did not dawn on me until the doc said it, but Owens not used to touch on his legs and feet. So we have to not only stretch and manipulate the feet and legs, but also take the time to just touch and kiss and rub them, like we do to Caleb. As of right now, no matter what we do, Owen freaks a little and does not want to be touched. But we are working on it.

Friday, we did nothing. Ha. And by nothing I mean, I just took care of two babies all day at home. My parents stopped by for an hour. Picture this, I hear a car pull up with loud bass bumping. I look outside and yes, its my parents in their new bright red Mazda Miata convertible, pumping hot 97, reggae hour. It was quite the experience. Needless to say, I am happy that they like their new car, even if it is only a two seater and I have no idea where they might fit their grandsons.

And now, tomorrow is here. I am working on being strong, but its hard. My dads friend gave me holy water from Lourdes and I swear I am going to rub it on Owen and Caleb and probably Gavin tomorrow. I am just so nervous for his tiny little body to be put under. We have to be at the hospital for noon and surgery is at 1:30, so please keep us in your prayers and thoughts. I hope it goes quickly, smoothly, and is as pain free as possible. I wish it was me, not him. My mom used to say that to me every time I had surgery or went through something crappy. I used to think to myself that it was just something nice she said. But, no, I now know, she really did wish it was her instead of me and I feel the same way tonight.

And in other kid news, Gavin won his soccer game on Saturday. He also got a 100 on his spelling test. He recieved a new Yankee shirt from Brian's dad and his fiancee and insists on wearing a Yankee tee with a St. Louis hat, to be fair to all his teams. Too cute.

Caleb is doing much better on his new medication. Maybe 1 bottle a day is a hard bottle to get down, otherwise, he is sucking them down like a pro. He is up another half ounce. Such a chubster! He is also really trying to use his hands a lot, to take his pacifier out (at the most convenient times, I assure you) and to reach for the toy that hangs from his car seat. He is also learning how to grab a handful of my hair while I burp him, so when I go to put him back in my arms for feeding, he almost takes a clump with him. Despite that, I love watching him move them and grab for things. Both Caleb and Owen are interacting with us more and more. Its fun to watch!

Ok, so much for short posts. I am off to bed to attempt to get some rest for tomorrow. We will be at NYU all day and Nick will spend the night with Owen. Wish us luck!

Its been a long and eventful week...

Monday we had another set of casts. This was our 3rd set in a weeks time. But the hard work was paying off because his feet looked good. Very good. Good enough that the doc thought she could do the tenotomy the following day if I could commit to helping stretch the foot for 2 hours between the time we soaked the casts off and the time the tenotomy would be scheduled for. I said of course.

In the meantime, poor Grandma Mary Anne got the flu. She has a temp and had to fly home so that she did not get us or the babies ill.

Tuesday was insane. My mom came down to help me with the appointments. We had to be to casting by 11am so that we had time to soak the casts off and for me to manipulate the foot in time for 1-2pm. We soaked and then went for OT and PT. I spent an hour or more turning Owens little foot, while he was fitted for hand splints, an activity that he was less than thrilled with. He cried for as long as it took for them to cut the plastic, melt it, fit it, melt it, fit it, melt it, fit it and position his tiny curled up hands in their new open position. It was hard to listen to and it did not stop there. He cried through PT as well. Apparently, I had not been stretching his foot hard enough, so when the doc came down to see our progress, she stretched him hard and asked the the therapist really work it. He cried. I almost cried. It was hard. Then it was time. I was so nervous for him. I knew they would not let me stay in the room. I knew he would have no pain medication prior to. They topically numb the skin, but he would not receive a novicane type shot until it was over, this had something to do with not filling the area with fluid. I brought him in and luckily my favorit medical assistant was going to stay with him and our dr. and her fellow, who we love, was there. I knew he would be in good hands. I kissed him 30 times and left. Not more than ten minutes went by when they came to get me. He wasn't crying, he looked fine and it was over. They were casting his foot. I was relieved and finally, we were able to go home and get some rest.

Wednesday, mom and I went to the pediatric surgeon for Owen's hernia. I like the surgeon a lot. As suspected, she feels Owen's hernia must be repaired immediately. Surgery will be May 10th at 1:30pm. Coincidentally, this is the day that my grandfather died. I hope he is keeping an eye on Owen when they put him under. I am sure he will be. I wish I could say I am relieved that something will be taken care of and we won't have to worry about it any more, but honestly I am just scared for him. He is so tiny. If you read this and you pray, please keep Owen in your prayers on May 10.

Wednesday afternoon was our first Early Intervention interview. I do not have much positive to say about this experience. I felt the doctor, a physiatrist, just like the one we met with the week before, was uninformed as he did not know very much about Arthrogrypotic children. He mentioned that early intervention would try to limit my home visits and he looked at me like I was crazy when I mentioned that we had already met with a physiatrist and she suggested all these therapies for Owen and that his care be half home-based and half facility-based since Arthrogrypotic kids benefit from the use of equiptment. Needless to say, I am working on getting him reports from the docs we have met with so he can make accurate suggestions for Owens care. Otherwise, I am ready to argue with everyone. All anyone tells me is that the more these kids move, the better for their future, so in my humble opinion the word "limit" should not be a part of anyone's vocabulary when it comes to the physical and occupational therapy that we should be entitled to. This saga will be continued.

Thursday was a low key day, with only one appointment. My dad came down and helped me take the babies to the pediatrician. My goodness, they are gaining! Owen is 6lbs and 7.5ozs and he is getting little rolls by his thighs. Caleb is just my little fatty. He is 8lbs and 5oz. It is crazy to me that Gavin was 8lbs and 4oz when he was born. Caleb is huge to me! I forgot the diaper bag and of course it was feeding time. Thankfully, I had pampers in the trunk, however, the doc had to supply me with formula to feed them. They eat mostly breastmilk with a chaser of formula since I cannot seem to make enough milk for the both of them, but I was thankful she had something for them so that the hectic screaming would stop. I felt like mother of the year. Thank God we did not have any incidents of explosive poop!

Friday was my first day of appointments alone. I had presurgical testing in the morning in the City, came up to Yonkers to grab Gavin from school for 2:30 and then went back into the city for 4pm casting. I have to say, I am proud of myself for making it through. It was hard, but I managed to get all of us dressed, washed and out the door, with bags packed, lunch packed for me and an endless supply of things for Gavin to do. Nick met us in the City at 4:30 and in order to make it more fun for Gavin, we took him to the park after the appointment and we picked up our favorite tacos.

As an aside, New York City parks are an education for a child. At least Thompkins Square Park is. In the land of parks, this one is PG-13 and bordering on an R rating. Thankfully, Gavin was too pre-occupied riding his bike like a madman between all the people to pay attention.


Next week we have casting, bloodwork, pt and ot. It seems now, like a light week. I hope it stays that way.

Babies are wailing...time to eat!

The twins are three weeks already!

Three weeks has flown. I cannot believe how big they are getting! Caleb is a whopping 7lbs and 11 oz which is up one pound from two weeks ago. Owen is 6lbs 5oz and thats up a pound as well. They both have little double chins and their cheeks are full. Caleb has little rolls around his neck. Its too cute. Caleb loves to stretch like crazy, always trying to sleep with his hands over his head. Caleb is so much like Gavin as a baby, it amazes me. I feel like I am doing Gavin all over again with a little more patience and a lot more knowledge. Owen is working on trying to keep his pacifier in his mouth by holding his little fist to it and sometimes he hooks his thumb in and pulls it out. We have worked on stretching Owen all week and already see differences (which the therapist have noticed as well). His hands are much more loose, his arms can be raised over his head and brought down to his waist and he moves more. In addition, we nicknamed Owen "bean" when he was about a week old because he was shaped like a kidney bean. We called Caleb string bean because he is long and lean. But now Owen is a lot less like a kidney bean, and a lot more string bean like, which is great. He really is loosening up.

We had appointments all week. Tuesday was casting and therapy. I finally got to touch Owens legs and feet. Usually, once the casts are off, we wrap Owen up so he is not cold and the docs all touch his legs and feet, but Nick and I haven't really. So this week we made a point to touch him and rub his little legs and feet. He can move his legs and while his ankles and knees seem to be his tightest joints, we are hopeful that after the casting is done, we will be able to acheive more range of motion. The doctor wants to cast a few more times and then give Owen a "casting vacation" so we can do therapy and see if we can do just that. I am glad he will get a little break and I can't wait to give him a real bath.

After casting, we had an introduction to occupational therapy. Owen had these little molds made to open his hands. They are made of a rubber substance that is similar to silly putty but hardens. It seems remarkable, but already his hands are more open.

Last week, after Owens first PT appointment, Nick and I met a young lady with Arthrogryposis. I forgot to write or maybe I wasn't ready to write about it at the time because it was hard for us. It was also good for us. What hit us first and it was a sucker punch, was the wheelchair. She can walk but its for exercise. She can walk a hallway. Otherwise, she is in her wheelchair. She can use her hands to use the controls on the wheelchair and she can use her hands for things like doing her hair. She told me she cannot open her hands all the way on her own. She has scoliosis and is about to have her first back surgery to correct it. She had clubbed feet and went through the casting/surgery/brace process. She told me that she does not get scared anymore about surgery because she is used to it. In addition, and maybe more importantly, she is smart, she is looking at colleges, she goes to therapy on her own, she wanted to come meet us and Owen. All of those positive thoughts were thoughts we were able to have once we processed all of her limitations in our minds. We know that Owen may be in a wheelchair. We know there is a good chance. I don't want to discount that he also may be able to walk, but the wheelchair is the thing we will need to get used to. Anyway, we saw her again this week and she came to say hi and it was good. It was a normal conversation for us and I felt no emotions about what can, will or could be.

Wednesday brought on more appointments. Weight checks at the pediatrician followed by a very long, in depth appointment with the Physiatrist. She is a medical doctor that specializes in rehabilitation and she has worked with many children who have Arthrogryposis. She took a very detailed history and then made many suggestions for us. She will basically oversee his rehabilitative care. She made suggestions, we are to follow up with all of them and she will see us in 3-4 months to assess his needs. She currently feels the PT/OT schedule coupled with early interventions PT/OT is enough for now coupled with the casting and splinting of his hands. However, in a few months, we may need speech therapy, feeding therapy, more PT, and more OT. Now, Owen is not doing much, so the stretching and exercise is fine. But when Owen starts to make noise or needs tummy time, thats when he will require different and more creative therapy. We also have to see the eye doctor, ear nose and throat doctor and eventually, when he has his first foot surgery, will have to see if they can take a piece of muscle for testing. At the end of the appointment, we were tired and feeling overwhelmed, both by the new appointments we have to make and by the potential issues that each of these new doctors could present us with. We are just keeping our fingers crossed that there is nothing more to add to the laundry list of things wrong.

Friday was another casting appointment which was not scheduled but the pedi ortho called us at 9am and asked if we could come for another cast at 11:00am. I said yes. I was confused about why we were going for a second cast in a week but when we got there the doc said she spoke with her colleagues and they felt that Owen could benefit from casting as much as two times daily. I am sure when she said that, my face was priceless, because she was quick to say "don't worry, we won't do it twice a day...however, we will do it Friday, Monday, Tuesday and we will see if we need it Wednesday and Thursday." What can I say? As much as I don't want to have daily appointments in Manhattan, I want to do everything we possibly can for Owen, so if he needs casts everyday, we will do it.

Next week appointments consist of the above casting schedule, the hernia appointment with the surgeon, their one month pediatrician appointment, OT/PT and our early intervention evaluation with the physiatrist for early intervention at Blithedale Hospital. A busy week!

In other news, today is soccer for Gavin and last week he won his game and made a goal! He also helped a little girl up off the field during the game like the little gentleman he is. Grandma Mary Anne is here and has been since Tuesday being a great help and coming to appointments and hanging with these boys. Grandpa Joe came last night and has met and held his new grandsons today. Its been great to have them around. Nick and I are going to dinner tonight for the first time in a long time, alone and I can eat garlic again! I imagine Nick is going to order sauteed garlic with a side of steamed garlic and candied garlic for dessert. Tomorrow Gavin and I are having a date. I am taking him to a Lego exhibition and I think he will love it. I am looking forward to just spending time with him like we used to.

Last thing I want to say is that with this schedule and the twins being a handful to say the least, many people have text messaged us, emailed, wrote on facebook or called. In my head, I see or hear these things and say I will respond in an hour or when I get a minute and then by the time I get a chance to do something, I take a shower or vacuum. So if you have wrote or called and we have not gotten back to you, I am so sorry. We love you and appreciate the messages. We know you are thinking of us and don't think we are not thinking of you. Its just crazy right now. Thank you for all of the support. We need it, we want it and we appreciate it.

The end of a long week of appointments....

Our second week of appointments is complete. We finally have 3 days of uninterrupted staying home. No trips into Manhattan, no traffic, no waiting rooms and no anxiety. I find myself really looking forward to this point in the week.

This week we had a hip ultrasound for Caleb on Tuesday. They wanted to check him to make sure his hips were not dislocated as well because they are twins and because Caleb was breech as well. Caleb was so good during the ultrasound (and mostly because he was pooping, but I will take it where I can get it) and thank God, his hips are fine.

The hip ultrasound for Caleb was followed by Owens third round of casts. We thought Owen would be getting his first real bath and we brought the camera and were all ready, but due to his belly button (a tiny piece had not fallen off) he had to have it buzzed off. He is such a good baby. He gets a little upset at the noise, but if we touch his face and head and give him the pacifier, he calms immediately. They buzzed off his casts and we were able to get a good look at his feet. Both Nick and I felt that there was good progress. I think the doctors are used to more progress, because they debated casting him again or waiting two weeks to allow us to do physical therapy to help stretch him. Because Nick and I saw a real difference, they casted him again. The foot that is called a vertical tallus or rockerbottom, was so different. When he was born, Nick described Owens foot as looking like his leg met his foot in the middle of his foot. Imagine an upside down T. Then picture his little round heel being in the middle of that upside down T. Now, his heel was far more towards the back of his foot and it looked like there was more foot in the front where it belongs. His clubbed foot is really severe. We saw some improvement where his toes were, with his toe nails up on the top of his foot instead of his foot being completely upside down. I felt like the docs were a little disappointed with the stiffness of his feet, but we feel like any improvement is good. We are not disillusioned, he will eventually need surgery, but the more conservative we can be with the treatment, the better we feel.

During the clubfoot appointment, we had our first hour of PT. Efi, our physical therapist seems great. She came down and moved Owen. One of the biggest challenges (so far) as his parents, is that we are a little afraid to move him. On the one hand they tell us, not to be afraid and on the other they tell us that he has not moved his bones in 7-8 months and that he is fragile. So we don't want to hurt him. But to see Efi moving his arms and stretching his knees a little, opening his hands up and turning his head, was great. He liked moving. He would cry a little but as soon as he was a little stretched, he looked at peace. I did some exercises with him today and Nick will do more tonight and we both feel good because we feel like we are helping him.

The only downfall about Tuesday is that we were at appointments from 9am and we got home at 7pm. It was a crazy day and it makes it hard to stick to the pumping, feeding schedule we are working on with the lactation consultant.

Wednesday brought more appointments. First, we had Owens hearing test. I am not thrilled to say that he did not pass. He then was given an inner ear test and he did not pass that either. So we have to go to a specialist and have another test done. I know he can hear out of the left ear and I know he can hear me. When I would walk into the the NICU and talk, he would immediately look for me. Now, when I speak to him, he looks for me. So, I am not sure if this is something that will resolve itself or not, but I hope it does. All we hear from the docs, as kind of a consolation prize is how smart "these" kids are. I don't need to start worrying about whether he will be able to communicate or have speech problems. We have the next hearing test on May 10.

Later that day, we had a hip ultrasound for Owen. As they told us from the beginning, his hips are dislocated. His left hip is completely out of the socket and his right is partially in and partially out. The radiologist kept saying "his hip is out of the socket for now" as if this could or would change. I asked him if that was possible and he told me it would be one of the goals. I am not sure how its possible since no one has mentioned it as of yet, but I will ask at next weeks cast appointment.

I had my own appointment today and I have to say, I love my OB/GYN, Dr. Amy Huang. She is just amazing. Throughout my hospital stay, she would come to my room when she was on rounds, sometimes at 3am to check on me. She would sit with me and talk about Owen and everything and hold my hand. She is amazing and I really appreciate all she did for us and her bedside manor during this whole experience.

Next weeks appointments include: early intervention, casting, physical therapy, occupational therapy for night splints for Owens hands, pediatrician and an appointment with the head of rehabilitation for the Children's Center at the Hospital for Joint Diseases who will oversee Owens OT and PT.

Besides the schedule of appointments, we are good. We look at Owen and he is so cute and so sweet and we look at Caleb and he is so cute and sweet and we are happy. We have good and bad days, crying, anger and the whole spectrum of emotions, but its OK. Gavin is great. Back to school and that is a great thing. Structure is Gavin's friend. He started playing soccer last week and he likes it. He is going to see How to Train a Dragon tomorrow with Nick and he is excited about that. He loves his brothers and kisses them 100 times a day. All in all, we feel we are doing everything we can for all of the boys.

I will update again next week! For now, we are just going to enjoy the weekend!

Welcome to the world Owen and Caleb! Their birth story.

What a crazy week and a half! We had our twins! Owen made his entrance to the world- via c-section on March 31, 2010 at 2:11pm weighing in at 5lbs and 0oz. Caleb came one minute behind at 2:12, weighing in at 6lbs 14oz. First, I want to say, I could not be more in love. I thought I loved Gavin to capacity. I even worried I would not be able to love these two as much as I love him, because I did not know it was possible to have so much love. But then they arrived and I think my heart tripled in size.

Things did not exactly go as planned though. When we delivered Owen, he wasn't crying. I knew immediately that something was wrong. I actually knew months ago, without really knowing. I told Nick one night before we fell asleep that I thought something was wrong with Owen beyond one clubbed foot. It was just a feeling, but I knew and said to Nick that I would probably be worried until he was delivered and the pediatrician alleviated my fears. That did not happen. He came out and I kept asking why I could not hear my baby. Caleb was screaming his head off. Eventually I heard these tiny cries, comparable to mews from a kitten. I asked that someone tell me what was going on. Nick had a worried look on his face and all he could say, as he watched the pediatricians look at Owen, that something was wrong, but he could not tell what. Eventually the news came in dribbles. His neck is too thick. He cannot bend his joints. His hands are curled. He has marks on his face. He has difficulty breathing. He has two clubbed feet. He has a very curved spine. I felt like I was in the twilight zone. Caleb was fine. I just wanted to see my babies. They would not let me see Owen. He was whisked away to the NICU. They brought Caleb over and let me kiss his face. I looked at my beautiful baby and I felt scared. Scared for his brother, scared for what was happening. I wanted to be happy but felt like the joy of giving birth to two babies had been taken from me.

I went to recovery and we were able to hold and I was able to nurse Caleb which made all of us feel a little better. News regarding Owen again started to come. The neonatologist came in and explained a few things- he was on a breathing tube and breathing ok finally. The geneticist was looking at him. The pediatric orthopedist was going to look at him. My Ob/Gyn said what he has is so rare that most of them did not know what it was. The geneticist soon came. He said Owen has Arthrogryposis which can be genetic or not. He said his joints are contracted and cannot really bend. He wanted to run tests. We consented. Now we had to wait for everyone to finish with Owen to get a better picture of what was going on. I got to hold him that night after I delivered at 10pm. They wheeled me down and I took one look at my crunched up baby holding his hands closed and all limbs bent and I cried on his head. I kissed him and hugged him and told him mommy loves him, but I could not wrap my mind around all of it. I felt terrible he was alone in the NICU and I had Caleb in the room, that he was not nursing, that he had all these issues. I felt like it was my fault. My bad genes. My lack of space in my womb for him.

The following day was better. Owen was taken off the breathing tube and feeding tube and was breathing on his own and eating via bottle. I could visit him more and more often and soon enough I had a schedule down where I would feed Caleb, put him in the nursery if someone wasn't around or even if Nick was, so we could both visit, go attempt to nurse Owen and hang out with him, then leave, pick up Caleb and go back to the room for a while. I did that every three hours for all Owens feedings except one a night so I could get one small chunk of sleep.

Over the last week we have learned a ton about Owen and at the same time, still feel completely in the dark. They think our son has Escobar Syndrome. A rare genetic disorder that causes scoliosis and arthrogryposis which causes clubfoot and rockerbottom foot, and dislocated hips, all of which Owen has. Arthrogryposis is basically a description of symptoms. The symptoms being joint contractures. Owens knees, elbows and fingers are all tightly contracted. He has good range of motion in some areas like his shoulders and bad in others, like his elbows. For the clubfoot and rockerbottom foot which is also refered to as a vertical tallus, he has been casted twice now. He has casts which cover his feet, with the exception of the tips of his toes all the way up to the top of his thigh. His feet are severe so we are casting for approximately one month to see if we get results and if we don't we have to discuss other options. I am keeping my fingers crossed, as I would like to avoid surgery as much as possible. In the interim, we have contacted early intervention for OT and PT for his upper extremeties, met with his new geneticist for testing and to help us manage his care, are calling for an appointment PT doc who has dedicated her life to the rehabilitation of kids with disorders like this who won't treat him but will give him the necessary prescriptions for the course of PT he should get and for the necessary splints and braces he should have to help open his little hands. We have appointments for MRIs this week to get a better look at his hips and Calebs hips too just to make sure his are not dislocated because he was breech, an appointment for new casts for the week, and will get an apppintment for the spine center to talk about what we can be doing for the scoliosis. It looks as though we will be spending lots of time at appointments and with doctors. We are assembling our "team" of docs now and attempting to get a schedule for the therapies and various things we need to do. And at this time, Caleb is just along for the ride with his brother. Lucky for us, he seems to love his car seat, the stroller and sleeping while we are out and about, so its been easy carting them both around.

The GOOD NEWS is that none of this has affected his major organs. His echo, brain scan, kidneys, liver etc... are all normal so far. So we are very hopeful that this is all orthopedic and will require tons of work on our part and Owens but that with therapies, braces, casts, exercises, hopefully minimal surgery, and lots of determination on all of our parts, we will overcome or at least improve the majority of these conditions. We hope. Which is all we can do right now, in addition to all of the abovementioned appointments.

We are so thankful for the support and help that we have gotten thus far from our families and friends. Not only have people come to stay, come to visit, come to give us a break, cooked food, watched Gavin and helped clean, we have gotten tons of emails and calls of support and offers and well wishes. So thank you to everyone. You are really helping to keep Nick and I sane and we cannot tell you how much we appreciate it all!