Saturday, April 24, 2010

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.

Thursday, April 15, 2010

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!

Monday, April 12, 2010

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!