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!