The waiting game...

After two full years, there is nothing worse than the waiting game. Do we have to go back to Boston? Do we have to have more testing done? Do we have to be readmitted? How much will insurance cover? How much will this add to our already crazy list of medical bills? How long will Isaac and I be away from Brian and Christopher? Who will watch him while Brian works. Oh my goodness is it ever frustrating. There are so many days that I wish I went to school to be a pediatrician as well as a GI doc, a surgeon, a nutritionist and an IV tech. Life really would be so much easier, except I'd still be in school :)  It's been a waiting game to see if we had to go back to Boston because of malnutrition. Isaac is having a hard time getting bigger. His weight is only 26.13lbs and he's only 33.5 inches. He's been the same length for a very long time and his weight keeps going back and forth because of sicknesses and becoming more mobile. Thank goodness we are getting better, but it's still frustrating to think of living out of a hospital again. I did it before and didn't think twice, but to think of it now can be overwhelming. Luckily I haven't heard back from Isaac's Nurse Practitioner, so I'm thinking we are in the clear. If we weren't, I know for sure she would have called me the second she got his totals. But we really need to pray for this little guy to grow!

Now for the fun stuff. These boys rock my world! There is no other way to put it. They are so much fun, so much joy and all at the very same moment, they can drive me crazy! CJ totally has my personality. He's independent and free spirited. Everything his doctors said from day one about him being a fighter and that was getting him through it all was totally true. He's such a fighter. Just ask Isaac's head as he got hit over the head 7 times this morning! Yes CJ has exhausted time out. It means nothing to him now. Looks like I need to get creative, again. CJ loves to do his own thing. He also loves to take everything that is mine and bring it to another room. I never know where my purses will be :) He loves Isaac so much though. It's a love like no other. He always looks out for Isaac first, them himself. I love twins!!!!!

Isaac is doing so great with his walking! It was a rough 2 weeks, but he's back stronger than ever! He loves his Physical Therapist! I don't want him to turn 3 because then we move on from her. He's willing to do anything she asks. She came yesterday afternoon and he walked all over. She left and he kept walking. He stood all over this morning and tried so many new things. We had a play date this afternoon and he played with the other 3 little boys like he was totally normal. It was such a precious thing for us to see. He stood all over and even climbed on top of the kiddie picnic table. He has such a strong desire to do everything set before him. He really wants to make us proud every day, but honestly I don't think he could ever not make me proud. They are the best little guys around!

I can honestly say that for the first time in 2 years, Brian and I feel like we are starting to live. Until April 1st, we were in and out of hospitals or doctors offices every week. From October 18th until Jan 16th, we were at a doctor's every single week. I can't even tell you how hard that was, and even if I could, if you haven't lived it yourself, I don't think it could be understood. I worked with a woman who's daughter had many, many open heart surgeries. I never grasped the level of pain, grief, trauma and joy (when the surgery was over), until I went through it every day of my life.

Have you ever had to regain your life after watching it pass you by for 2 years? It's hard. It's hard to pick up in friendships and family relationships where you left off. Some understand and totally support you because they know you did what you had to do in order to help keep your children alive and moving forward. Others may not be so forgiving. For that I am so sorry that I was not been a great friend or family member. But I had, and at times still have to have one focus. Isaac and Christopher. We were newlyweds, married less than a year (thanks to our kids being born 15 weeks early) and going through hurt. Talk about putting our marriage to the test. There were many weeks and months when Brian and I co-existed without even saying anything because the emotional roller coaster we went through was too great. But God is so great that He not only saved our marriage, He made it amazing! Never in my life did I think marriage could be this wonderful. For all our friends, uncles and cousins who are getting married this year, there really is not another greater gift that we could be given than the love of our husband or wife :) But God has done so many things in our life, Christopher never had another episode with his esophagus. He was suppose to have all these issues because it was so short, but he hasn't. I know that he can have issues for another few years, but I know he won't :) God has been so amazing with Isaac. He wasn't suppose to crawl, walk or talk. He is sooooo smart! He can crawl all over like a crazy boy, he's learning pretty quickly how to walk and he's trying so hard to talk. God is so good!

Coffee really is a Mom's best friend...

Except for about a month total, I have not slept straight through the night since the boys were born. Wow was last night rough! I don't think I could even tell you how many times I was up with the boys....they were having night terrors, and I had a terrible nightmare myself. It was a bad night of sleep. Only to have our day start at 4:30 when Isaac woke Christopher up with his yelling. But Isaac didn't really want CJ to get up, he just wanted me to get up so that he could have some alone time with Mommy. Well boy did that backfire! He was then so mad that he yelled for the next 2 hours straight. I'm sure our neighbors just loved us this morning. Finally around 7AM I got him to be happy for a little bit, only to break down again.

At 9:15 they finally wanted to snuggle, and at 9:30 they went down for a nap. Talk about throwing off our day when they were suppose to meet our Occupational Therapist at the library. Of course I tried to nap while they did, but after 3 cups of coffee just to be able to function for them, there was no napping for me. So what do I do, but decide I'm going to organize all the things that don't need to be organized. By 5PM when our Speech Therapist left I just wanted to curl up in a ball and go to sleep. But of course that wasn't about to happen because Brian then had to leave for work. So now it's back to tonight. Will they sleep? Will I sleep? Well now they have black sheets hanging from their windows to keep the sun out in the morning, I have 2 fans on medium to try to drown out the birds that begin chirping at 4AM and the door is shut tight in hopes of keeping the cats from going in and crying to wake up the boys (they seem to enjoy this on the nights when I am exhausted)

I'm really hoping that the meltdowns from Isaac yesterday and today are from being over-tired and not having an ear infection. The poor thing has had many, many diapers today, has refused to walk the entire day and just yells at me. It's hard to tell with him, it could be the pineapple I gave him for breakfast and lunch or it could be an infection. Since it's now quarter of seven, I'm really hoping it's just being tired because there is nothing worse than having to go to the doctors on a weekend. We've done it far too much!

I just looked at pictures of the boys on our first Mother's Day. Wow. The words aren't even there to really express it. The tears are flowing and the joy I have is amazing. There were so many times that doctors tried to rib us of the joy of Isaac. They had no hope of him surviving and had pretty much written him off. They told us that there was nothing more they could do for him at CCMC and it was just a waiting game to see how long his liver could hold off before he really went into liver failure from not being able to eat. I didn't realize until this moment just how bad his color was. I saw it, and it was real to me, but I wasn't willing to accept it then. Not my Isaac. God told me I was pregnant with twins before the doctor ever told me, and He gave them each a name without us ever finding out if they were going to be girls or boys. There was no way I was going to give up on my sweet Isaac, the little guy who smiled at me just a few days after being born. He was loved so much by so many people. Sure there were tons of ups and downs where our faith was tried. Actually to be honest there were more times during Isaac's 8 months in the hospital than I ever imagined in a lifetime. But because we had such an amazing support system, we were able to stay strong even when we didn't have it in us. Thank you all so much for being there for us!!!!!

This is a picture from our first Mother's Day. Brian is holding Isaac, and I am holding Christopher. The first time in four months that the boys got to touch. The first time Brian and I were able to stand next to each other with a child in each of our arms. This was also the last time that Isaac would be in CT for four months because he was being transferred to Boston the next day. This was also the first time I got to take Christopher outside. For the first time he was able to experience what fresh air felt like, even though he was hooked up to a monitor and oxygen. For the first time I got to push my child in a stroller.....but the pain of not being able to push them both in the stroller was hard. The pain of not being able to bring both of my children home was hard. Life was so hard back then.

Even when things are hard now, and we don't sleep...or the boys scream for hours.....or we have to go back and forth to the doctors...nothing compares to what things were like 2 years ago. God has been so amazing to us. He has answered all of our prayers and more. I know for a fact that there is no way that Brian and I ever could have gotten through the last 2 years without Him and without all our family and friends. Thank you all!!!!!

2 year old doctors

Wow has a lot changed since this post in January of 2009. Thank goodness! To sum it up, because my husband has taught me that you always summarize everything :) Isaac had central iv line taken out just after his birthday in February. Both boys ended up in the hospital many times in 2009 for infections and dehydration. The longest one was actually one year ago today. Brian and I spent our anniversary in Boston and thanks to amazing nurses who wanted us to be normal, they were able to keep Christopher an extra night so that we could go out to celebrate our 2nd anniversary. Isaac and I spent the rest of the week as well as Mother's Day in Boston. It's been a very long two years with so many ups and downs. When I look back, I honestly don't know how we did it. I don't know how we drove to Boston so much, how I lived with my suitcase packed all the time because I didn't know when we'd get readmitted to the hospital, and I don't know how I managed to go from having a career in Business to a career in medicine. The 'ologys just were not my thing....but it looks like they have become them :)

We just celebrated our 3 year anniversary at home, we are getting ready to celebrate Mother's Day at home and we are hoping to celebrate Isaac walking...all in this month! Isaac rec'd his walker this week and did great with it the first night. Since they he's decided that he doesn't really like it all that much. So now we have to try to encourage him in a new way. He's doing so well though! He wants to walk, he just wants to be lazy and have his Mommy help him. Oh how this little man knows how to have his Mommy wrapped around his finger.

Christopher is doing so well. He's running and climbing all the time. He's the sneakiest little man I know. I took them to an Easter Egg hunt and put all the candy on our center island. I was busy with Isaac and when I came into the room I couldn't find CJ. But I did find a bunch of containers piled on top of each other at the island. I didn't think anything of it, but went to find him. I found him in his room, hiding behind some furniture with chocolate all over his face and smashed candy in his hands. Sometimes I really wish he wasn't like his Momma :)

I'm not sure how many families have doctor kits for their two year olds, but the boys got one from their Aunt Jenny. They love it! It came with a stethoscope, the ear thing, a thermometer, a band aide and a needle that moves for shots. Well my boys have no idea what the band aide is for, but they love to use the rest of the kit. They know exactly how to use the stethoscope to listen to your lungs, belly (for belly sounds in GI kids) and the back. They also know how to give shots in the thigh and that you can take your temperature under your arm you in your pants. Oh my goodness is it funny to watch them. I'm hoping for two pediatric doctors who want to give back you children after all that they have rec'd.