So much has happened....

Last weekend Pastor Rick said that he has learned so much from his daughter, and it really got me thinking. I can honestly say that I have learned more from my children in 2 years then I have probably learned in a lifetime. They have taught me so much more about what life is really about than I ever imagined. I watch (then reprimand) Isaac attack Christopher with full force and as long as Isaac hugs or kisses him after, he forgives and forgets. Isaac has been through so much physically, emotionally and spiritually, and yet he still tries his hardest in every situation and is unwilling to just give up. I am so encouraged every day after spending it with my two little munchkins.

Wow how do I even recap all hat has gone on? Our family has been put through a lot, and yet blessed 100 times even more. I am so thankful for so many wonderful family members, friends and new acquaintances. I'm healing quite well. My right wrist is doing amazing! So much for all the supposed pain I'd be going through :) My left wrist still has quite a bit of pain. It feels as if someone keeps poking it with a screwdriver all day, but totally doable. My knee is doing so much better. I can finally climb stairs. It doesn't look so pretty, but I can do it. I forget that I can't do certain things, like getting up off the floor or squatting. But all in all, I can't complain at all!

Christopher is doing great. He is a champ! He is trying so hard to be a big boy. He can count to 10, knows about half of his ABC's and if he keeps up with his doctor skills, wants to be a doctor. Many days I find the two of them in the bathroom with just their diapers, their small couch and Christopher telling Isaac to lay down so that he can listen to his belly and chest. It is so precious!

Isaac is a tough boy. I am so proud of him! The last two months he had lost weight. His Short-Gut Docs were getting a little worried. Also we have been doing monthly testing of his vitamin B12. When they did the test in November, after giving 1,000mg (an adult dose), his numbers should have been over 200. Yet they were below 150. Vitamin B12 is what helps you grow and most importantly it provides nutrition to the brain. If someone to have a B12 deficiency, it would eventually lead to brain damage. So Isaac's doctors referred us to a new doctor who we saw today. He is a great guy! He's also incredibly knowledgeable. I consider us so lucky to be close to Boston, and even luckier to have such a wonderful team of doctors who all talk about Isaac together. Every one of his doctors is on the 'in' about Isaac. This helps us so much!

Dr. Barry (the new doctor) drew me a beautiful picture of the entire body. He showed me how/where things get processed, what we are missing and what we need. So here's the deal to the best of my knowledge as to what Dr. Barry tried to explain to me. We did a urine test last month to see how much Isaac was excreting of his B12. The test is very sensitive and it came back normal. Yet every blood test shows that his B12 is very low. Thus this leads us to one very probable cause; his Transcobalamin I (TC1) is low. This is the binding agent that breaks down the B12 in the gut. Isaac is missing the valve in the intestine that not only slows down food, but breaks down the B12 with the TC1. This is a very new thing for the US to learn about. Until recently, no one really studied it. If in fact Isaac does have this, he will be one in less than 50 people in the world would be diagnosed with this. If this is true, then we have to figure out how to up the TC1 so that Isaac does not get brain damage.

What I haven't spoken of lately is that Isaac is doing so well. He's walking and talking, but we do still have brain issues to deal with. Some of the things that could happen from lack of B12 have already happened. So we really do not have any room to play with. We need to get this healed ASAP! Today they took a blood test from both Isaac and I to get a sample of our DNA. They are sending it to a cancer institute in Ohio that is studying this right now. These are the most up-to-date people in the US on this right now. They took Isaac's to see if his TC1 is low, and they took mine to see if this might be something that I have and passed onto him. If by some chance Isaac doesn't have this, then unfortunately the poor guy will endure lots more testing because they have no idea what else it might be. We won't get the results back until after Christmas, so until then we are going to keep going as planned. Isaac gets his B12 shots twice a month now. Our pediatrician is looking into seeing if the insurance company will allow me to give them to him, rather than bringing him in. Who would have thought that in in two years, ten months, all my business skills would go out the door and I'd take many lessons in biology.

I'm annoyed by this, frustrated that once again I have to say, "UGH! I'm tired of it being my child!" But at the same time I actually have peace in my heart. I understand all the complications, I 'get' everything that can happen, but I'm not willing to accept it. A few days ago I wrote a status that I just wanted to understand how Isaac's body. Now I understand it, so I can move to the next step of fighting for it. Please join Brian and I in fighting the fight for Isaac. We are not going to accept that our little man will get brain damage from this. We know that a full healing is going to happen and that our little man will one day grow up to have a wife and children :)

Oh and also, please if you decide to google anything....please do not ask me any questions about it or try to give ideas. We have the best specialists in the world working on this right now and we trust God 100%. We couldn't ask for anything more.

All our love,
Brian and Jenn

Stress or Joy??

"Our worry will not change the future; it will only rob us of joy in the present." What a great quote for me! I don't think I could count on 40 hands the amount of times I have worried about the future in the last 2 months. All my worrying will not change a thing...it will only stress me out more and make me miss the blessings that are happening around me every day. But oh so hard to think about when it seems to be one thing after another. I honestly do not know how we'd survive without God!

My rehab is going okay. I have to keep reminding myself...with a little help from great friends and family, that I am not just rehabbing one part of my body...but many. My cast came off on October 6th, and I'm finally starting to get use out of my right hand. Yesterday I started OT for it, and it helped a lot. This being said, I am in quite a bit of pain today from it and my left wrist is still very sore. I was told that it could possibly take up to 3-4 months before the pain begins to go away....however since we are going into the cold season that will make my joints hurt more. I never understood when people said they could feel the weather change, however I now do. When my body is cold it is in absolute pain! I will be seeing OT two times a week for two months and will be seeing the wrist doctor in 2 or 3 weeks for a follow up. We are still praying for full use of my wrists and no arthritis!

My knee is going a bit slower. I saw the doctor on the 12th and he was expecting me to walk out of his office without any brace. However when I showed him what I couldn't do, he realized that a large part of why my knee is weeks behind is because my body had so much to recover from. So today I will be getting a new brace that will help me with strength, but not keep me locked in straight position. Hopefully it will allow me to wear more clothes too :) When I started PT I could only bed my leg to 20 degrees. Now I can bend it to 130 degrees! I have an MRI next Tuesday because there is a loop that showed in one of my x-rays as well as some debris. There could possibly be tendon and ligament damage. When I try to bring my leg forward it feels as if there is a jack hammer in my knee. Not so fun! Then I see the doctor on Thursday to find out what it showed. I'm still unable to drive. The unofficial rule is that when I can walk up and down the stairs by stepping one leg and then the other, then I am able to drive. I tried this the other day, and let's just say I am no where close to driving! Right now my leg is in tremendous pain. Quite honestly, the most pain I have been in since the beginning. I even took some strong pain meds last night...which by the way do not allow for any sleeping! Bitter sweet :) But at least I am on my way to recovery!!!!

Now about my sweet Isaac. Oh how I love this boy!!! He is so special to me in so many ways. I understand him so much better now. The brace on the right leg, the lack of mobility in the right hand. I get him. Walking really is hard! But more so than that right now, other things are hard too. Brian took Isaac to Boston on Thursday and it was a tough day. Tough because it's hard to hear the things that I pray against. They did an x-ray on Isaac's belly and it showed that his intestines are a little blocked up. Not horrible, but bad enough that the poor thing is in quite a bit of pain. He started his laxative again, but it causes gas so he's still in some pain. Not fun! He also lost a pound and did not grow at all. So now we have to figure out why he isn't growing. Is it from his B12 being off? I personally think so, but our specimen from the lab here got a little messed up so we have to wait a month. Is it a hormone in balance, a chemical in balance in the brain or crazy glucose level? Not sure. We go back to Boston on November 4th and will probably do more tests. Also we may be meeting with some more doctors. The worry can and sometimes does consume me, but after I get it all out and give it to God, I feel free as a bird!!!

We are so thankful to all of our friends and family! Since I fell on August 28th, I have not had one day where there wasn't someone here helping me with the boys or making us meals or driving me to appointments. Thank you so much for all the amazing support! Quite honestly the last 2 months have been so hard and I'm finally able to start seeing the light at the end of the tunnel :) Thank you for all of your love!!!!

A month of trials

Wow has the last month been a mix of emotions! Four weeks ago, Brian and I packed up our 2nd floor apartment to move us to a wonderful condo. The move was amazing! A HUGE thank you to each and every person that helped us! It was so smooth, pretty quick and so helpful for getting the boys settled in. That first night was so special for us. We felt joy, peace and happiness for the first time in over a year. It felt amazing! Then on Monday morning at 3AM, Isaac and I headed to Boston for what we pray was his final surgery. He did so well. He was pretty sore and out of it for about a full 24 hours, but then he ate like a champ and they sent us home. His belly looks amazing! He's doing so great now with his walking, all because he isn't afraid of pulling on it. It's amazing how something can hold him back, even though he was so used to it.

Our big struggle right now is the fact that he isn't maintaining vitamin B12 at all. He's getting a mega dose every month, and just barely staying above the safety line. Please pray for his body to absorb it. B12 is VERY important for the brain! And everyone knows how much we have had to worry about his brain already. Next month we go for short-gut clinic again, and I'm pretty sure they will check his blood levels again. Please pray that they are up.

So we moved into our new place on Saturday August 21. On Saturday August 28th, I had a nasty fall. I was beyond exhausted from only 3-4 hours of sleep a night. So that night when I turned the lights off, I walked over to the stairs, which I thought were the stairs to go up. But little did I know that I was standing a foot to the right, and when I put my right leg out to step up, it never found a stair. I screamed, tumbled, slid on my face, felt my right wrist break, hit the bottom and felt my right knee break as it took all of my body weight on it. I laid in a heap at the bottom of the stairs in the dark, home alone with my sleeping babies. Thank goodness I fell with my cell phone which I could see glowing. I hit send to the last person, who was thankfully Brian...and called him screaming that I needed him to come home, I couldn't walk, I had broken bones, but I was okay. Thank goodness he was smarter than me, who was going into shock, and he called 911. Brian and the ambulance arrived at the same time...then my mom, then  Brian's mom. What a  night. Pain, fear, anxiety, guilt...I went through every emotion.

Brian's Mom said it best when she said that when I came home Sunday morning at 6:15, I looked like a horror movie because both of my arms were casted straight up, past my elbow, my right leg was in a full brace, I had a black eye that was surrounded by blood and puss all the way down my face. I couldn't even cry because the tears on my broken skinned face hurt so bad. Brian somehow carried me up the stairs where I laid all day, in and out of pain until 8PM when I had a mini seizure from the pain meds, dehydration and the pain from the ER putting my leg brace on all wrong. So as I laid in Brian's Mom's lap weeping...thinking at nothing could ever hurt this much, Brian on the phone with 911, and some sweet friends taking care of my boys...it was time to take another ambulance ride to UCONN.

The doctor that was on was the same doctor as the night before. His first words to me were, "I'm not surprised you are back. I should have done a CAT Scan on your face, checked your brace and given you medicine to help the nausea before you left." Well that was encouraging! Sheesh! Luckily there was an amazing PA on who took care of me. She fixed my leg brace, which was on all wrong, gave me much better medicine and fixed everything. After being there from 9PM-2:30AM, it was time to go home. I didn't break my face which was good, but it did take a beating from the trauma.

Another day of laying in bed in pain...and then on Tuesday I went to the wrist doctor who said that my left wrist was fractured,  but not as bad as the right, so given the situation, I was allowed to use it. Then he said my right wrist was bad. There is a 1mm gap between the bone and my joints. He anticipates that I will only have 80-85% use of it after it is all healed, and there is a very good chance for arthritis to impact it severely. We are praying against  both of these things! Right now it is casted, and will be taken off October 6th. Once they do an x-ray, it will determine if it healed correctly, or if surgery is needed. We are praying for a full healing! I have about another 12 weeks before I will be able to lift my kids! UGH!!!

The wrist doctor then sent me to the knee doctor because he thought my patella tendon had ruptured. After the knee doctor drained 60 cc's of fluid out of my knee, he said that I fractured my knee cap right where the muscle attaches. So our big struggle is that if we push my knee like we should, then we risk breaking the muscle from the bone will will mean immediate surgery. But we have to push the knee somewhat in order for the bone to grow back properly. FRUSTRATION!! So I have at least another 8 weeks if not 12 weeks before I can drive or bend my knee. Right now I can bend it about 3% on my good days. I do all my PT exercises, but it's healing much slower than expected...according to my PT.

Now is the tricky time. Brian's Mom was here taking care of us all for 3 weeks, and my Mom was here helping her after school and on the weekends...but now my mom still has to work and  Brian's Mom had to go back to PA. Now we are relaying on friends to come during the week to help care for the boys and I while Brian is at work. It is so hard. I just want to be 100%, but I have months before that happens. Just this morning, I tried to sit down with Isaac on the couch, and when I did, I somehow managed to turn my knee...more screams, more pain and hopefully no set backs. No being able to change diapers, feed my children, pick them up when they fall down, hug them when they need it, give myself a shower, hold a glass without it hurting....these are the things I want. I don't want material things...I don't even want money, although that would help with all the bills my accident created, I just want to be a Mom, Wife and Person again. I can't believe all the things I took for grated before this. It took me days just to be able to hold a fork by myself, or go to the bathroom or get up off the couch.

I am so thankful that I didn't hurt my back or neck and that I will heal. I just need the patience to give my body the time to heal. You'd think I would take time to sit by myself and pray about things. But instead I feel terrible that my poor husband, who has barely slept in 3 weeks, now has to do everything for the boys and I while I sit with ice all over my body. I thought our marriage was put to the ultimate test each time we were told horrible news about the boys. But this is a whole new test because there isn't any fighting we can do to fix me. Please 2011, be a year with only joy!

Thank you all for your prayers, your friendship, all the gifts, cards, meals, phone calls, emails, text messages, surprise visits...we are so thankful that during our time of need we have so many great friends and family!!!

So much joy to come

When trials are going on all around, it's so easy to get caught up in it and not see the whole picture. However when the trails are much less and there is more joy, it's so easy to forget some of the hardship that has occurred. In the past month, Brian and I have been reminded so many times of what we have gone through. Just today I was speaking with a woman who had tears in her eyes as she looked at the boys. She is an ex-nurse, so for her, watching us walk through the boys lives was more than just a story, it was real life. It was really sweet. Then she said the most amazing words to me, "How does it feel to know that you have encouraged so many people?" I laughed it off at that moment, but I've been thinking about it all day. I am so honored to have been able to share our story, and if people are encouraged by it, then I am so thankful! There is no one to blame for what our family has endured. It took me a long time to get rid of the Mother's guilt, but I know that I did everything I could to keep my babies safe. We don't blame any of our doctors or nurses in any of our four hospitals. Each person did the absolute best that they could and we are so thankful for that because neither boy would be here if they hadn't. We are so honored to have had so many friends and family who were praying for us. I don't even know how many times prayer gatherings were happening that we didn't even know about. Or when people showed up at our house to pray for Isaac because he was so sick. We really hope that our family has encouraged perseverance when there is a trial and for any family that is enduring preemie life, we really hope that we can speak hope into your family.

This coming week is the biggest week that we have ever gone through in the sense of joy. I can't even begin to tell you how excited I am! On August 21st, we are moving....Yes I know, again. Currently we live in Berlin and love being so close to friends and family, however it is really just not a 'safe' place for us. Emotionally, spiritually and in a sense, physically. I don't think Brian and I have ever been so excited for a new home as we are for this one. We are going to be renting a condo in Avon. It has so much to offer our family. Not only is it in a great school system, and close to some of my friends from home, but my Mom is the only grandparent living in CT and we want the boys to have experiences with her that I had with my grandparents. Some of my greatest memories are with my grandparents. But we are still praying for both my Dad and Step-Mom and Brian's Parents to move back here soon :)

On August 23rd at 2AM, I will get up and get ready to leave, because at 3AM Isaac and I have to be on the road and heading up to Boston for his 7th and final surgery!!! This is the most amazing news that I could be sharing!!! For 2.5 full years, he has had tubes and iv's in so many places. Now for the first time in his entire 2.5 years, we will be able to hold him in any position, not have to change dressings, put tubes back in when he pulls them out and not have to freak people out when they are trying to play with him. Isaac and I will have to stay over night, and I'm pretty confident when I say he's going to be cranky because they won't let him eat before or after surgery. I remember what it was like for CJ....boy was he loud!

I'm so thankful that this is the last scheduled surgery where I will have to hold the gas mask over one of my sons as he drifts off to sleep. If you've never had to do this before, then I am so thankful. It doesn't sound like much, but when your baby is looking up at you with scared pleading eyes and then they roll back in their head and they are as limp as I would expect someone who is lifeless to be...it's pretty sad. But Isaac's surgeon is amazing! We love this man and would have him do surgery on anyone in our family. And this is a pretty routine surgery...the only real issues are making sure that Isaac doesn't catch anything while he's in the hospital, that no abnormal bleeding occurs and that he doesn't get an infection after.

Now the tricky thing that we are going through right now, is that Isaac gets monthly shots of vitamin B12. He had blood work done in July just before his dose, and his numbers were off. So after they did his shot, we got more blood work. They were still low. So then Isaac got a mega dose and they were up, but not that great. So we just had more done, and then another shot. When we go to Boston on Thursday for pre-op and a Neurology behavioral study, they are going to do more blood work. Needless to say the poor thing has had 3 shots and 4 blood tests done in just over a month. We need to figure this out because B12 is very important. Possibly something is keeping him from absorbing, but we aren't sure what.

Christopher is doing so well! He's had some wicked sinus infections lately...for 2 full weeks. He's on another round of antibiotics that are not making his intestines so happy. But at least he is getting back to himself. We are praying against any asthma or eczema break outs going into the fall. They both tend to get worse, but we are praying for them to be gone.

If anyone is free around 8AM next Saturday, we'd love some help moving so that we can be all settled in by Sunday afternoon so I can get some sleep before surgery. Once we are settled in and home from surgery, we will let you know how everything went. Thank you all for your continued love and support!

A little bit of everything for the last month

It's amazing how the majority of my days are spent in a fog based upon the fact that I've gone almost 2.5 full years of not sleeping more than 3 hours at a time. And while last night was that way for sure...2 hours at a time, the fact that I had an hour to myself this morning gave me such a new perspective. Thank you so much God for giving me some alone time.

The last month has been crazy. June had so many ups and downs. We entered into a new stage with Isaac. We like to call it the stage that has to go so we can have our child back. Isaac now screams at the top of his lungs when he wants something. Now you may think, "Yes Jenn, every child does this." But I mean that it sounds as if we are beating him with a stick. It's so embarrassing! And he'll do it anywhere, but specifically when it's bed time. Thank goodness Brian is home this month at night so I think I'd have to move into the garage just to keep the street from being angry with us. He did it the other day when I took the boys for a run. As if pushing 60lbs of child isn't hard enough. I now had to talk, while running and pushing the 60lbs. We even managed to wake up the set of triplets that had been peacefully sleeping. Yep that's our boy :)

We had a 2 week period where we started with illnesses again. It was not fun at all. First CJ got croup again. Then it turned into an ear infection. Then we took him back to the doctor because we couldn't get his wheezing to stop. Now he has a new sick plan that seems to be working great. At the same time we took Isaac because he was getting a runny nose and starting down the same path. Turns out that he has a form of Rosacea that most kids can not get until they are between 6-12 years old. Our doctor turned and started laughing. She said nothing with your children surprises me any more. Yep it's official. The Campbell Twins are not normal :)

We went to our first Build-A-Bear Birthday Party. It has so much potential of being an amazing experience. We were worried about Isaac because he was a bit cranky, but as it turned out, Isaac loved EVERY minute of it. He had so much fun and LOVES his karate bear. But poor CJ who was a little over-whelmed from the beginning from lack of sleep, did not have such a great time. He was about to. He was heading over to sit next to his friend Jenna when all of a sudden he got sat on. Not by a child, but by a rather large woman. She not only sat on him, but smacked his head and body into the wall. Needless to say, he cried for the next 45 minutes and didn't want to take part in any of it until the very end. Now when he looks at his puppy he always says, "Momma Owe! Sit on head."  I think we may need to redo this experience so he can see why every other child in the world loves it.

Yesterday I took Isaac to Boston. It was a very long day without much sleep. Nothing exciting happened though. Now that Isaac is doing so well, they don't need to monitor as much. Hopefully next week when Isaac's Surgeon comes back from Japan they can set up his OR date to have his g-tube removed. This would make his life so much easier for many reasons. Plus it would save us hundreds of dollars on the dressings that we use. Now the stinky thing is that he has not gained any weight. In 4 months he only gained 4 oz. So we need to figure this out. He's now going to start drinking 1.5 containers of Pediasure. Hopefully this will help him get chunkier. He hasn't gotten taller in about 8 months. So it's very important that we help him get bigger so he can grow in all areas. Other than that, nothing happened. Although I did see a very sweet woman who I met on Isaac first day there.

It's amazing how God places the sweetest people in our lives. In every hospital we have not only had amazing nurses and doctors, but I have met amazing mothers. At UCONN I met this wonderful woman named Julie who inspired me so much! Then at CCMC I met sweet Meredith who met us during one of Isaac's worst moments. She still gives me so much encouragement and I am so thankful that God blessed me with such a great friend! Then at Boston when I was so over-whelmed having one child in the NICU at CCMC and another in Boston, Holly was there to help me through life as a Mother of a short-gut kid. Something I had never ever thought I would have to endure. Staying in another state, away from one of babies, away from my husband, my job, my regular life, my bed....I began a new life and Holly was there to help me. Seeing Holly yesterday in the waiting room gave me so much peace. To see her there, all the way from North Carolina, smiling and enjoying her daughter was wonderful. God blessed us by bringing us both to the greatest Intestinal Rehabilitation Center in the world. Now our munchkins are doing so great!!!

We are still looking for a place to live. We really aren't sure what God is doing. Brian and I are still waiting for Him to show us where to go. It's a little frustrating because things here are a little tense. But we know that He is in control and He will provide everything we need as it arises. Brian and I do have some specific towns that we are interested in, only because the boys start pre-school in February and we want the best for them. Especially for Isaac has PT, OT and Speech will still be key for his development. We'd really like to get into a town that we can find ourselves staying in forever. Moving every year really does stink. But again, it all depends upon God and where He brings us to.

So this is a little of everything that has gone on in the last month. Life has been crazy, and we haven't had much down time. But the boys are doing pretty well, Brian and I are doing okay and hopefully July and August will start a new stage for us as a family.

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.