Todays weigh-in and some mommy and Evan pics

Tummy time with my favorite toy

Smooches with mommy

Floor time with mommy

Me and my mommy

In my "I'm a really big deal" onesie. How true how true!!!

So we went and weighed Evan today and he is 7lbs 4.7ou! He is still gaining a textbook ounce a day. Hard to believe when he spits up as much as he does!! I honestly wonder HOW he gains weight at all! But he is, so that's all that matters.

He enjoys his floor time, and we are working on tummy time. He has a strong neck and likes to look around. It's pretty cool to watch!

Today I took some "self portraits" of me and Evan, and some pics of Evan.

It's hard to look at Evan and see how well he is doing, yet have the constant reminder of how careful we still have to be with him!! His immune system is still that of a preemie, and a simple cold can turn to RSV...and to a preemie that can be deadly. I'm constantly washing my hands when handling him, and nervous at the thought of him out and about. I will constantly have hand sanitizer with me, because no one can know what germs are on their hands...and we have been through too much with Evan to risk something as simple as not having clean hands.

I've been reading a really good book on parenting a preemie and it has really helped to validate some of my concerns and fears, and help me put other fears in check. But Evan is too priceless to worry about offending anyone by asking them to wash their hands. I guess when you've lived the NICU experience and have such a fragile life in your hands, nothing is too trivial.

I feel sad in some ways because this hinders me on being able to be at bigger family gatherings and I miss seeing my own niece and nephew when they are dealing with a cold.

Nothing has been typical with Evan and will continue to be that way...for a year or two. And I guess it is just another sense of loss in not being able to enjoy the pleasures of a healthy full term baby. I am so grateful that not many people have to deal what we deal with. I am SOOOOOOOOOOO grateful for my newest nephew due any day now...that he will be born healthy and strong!

But being confinde to home is a small price to pay for such a precious gift as Evan. I might be going stir crazy, but it's all about this little person who is relying on me to be his advocate to keep him safe and healthy. And I know I won't be able to protect him from everything all the time, but for now I can do the best that I can.

Anyhow, enjoy the pictures!!! I know I enjoyed taking them!!! OH, at one point Evan ALMOST spat up right in my mouth!!!!!!! It hit my cheek instead, thank goodness! That would have been NAAAAASTY!!!!

By popular demand...

Me and my girlfriend Marley!! Marley's mom made us these matching shirts!!

June 12, 2009 - rolling around playing with mom and my toys!

Crashing with mommy. I make her pretty tired :)

Chillin' in my vibrating bouncy chair. What a strange sensation!!

Chillin' with mommy and one of my doggies Bailey.

OK, so it's a bit trickier blogging these days! Little bean keeps me jumping and when he is sleeping I'm TRYING to sleep too, but tend to end up doing everything else that needs to be done. Ya...I can see why people use no sleep as a form of torture...you just can't function and think straight! But, it's a good tiredness. I don't feel like I should ever have "bad" days or frustrating or tired days. I always feel like I should be go go go and never feel sad or confused with the emotion of it all. Needless to say this has been catching up with me and I have been struggling greatly these past few days. I am in heaven watching Evan growing leaps and bounds and watching him become more vocal (loves to coo when playing on the floor) and just seeing the little guy he is turning in to. Yet my heart has been aching so deeply with missing my little Zac. And I just don't know how to process it all. I feel angry at times that God would take him away...yet these children have never truly been MINE. They are God's gift to us for whatever time He has planned. These are children created by God and WE are the ones who have been blessed to have them in our lives. I didn't "earn" or "deserve" them. We've been blessed. And even though our time with Zac was unbelievably too short...I do cherish that I had time with this precious little boy.

You know, I was thinking the other day...I hear about all these people who have followed my blog religiously and how it has touched lives...and I'd really like to hear from those who would like to share HOW it has impacted you. Maybe it would help in the healing process of my grief and sorrow. I'd love if people would email me and just share how you have been affected by our journey and by Zac's life and Evan's life. My email address is heather_johnson@shaw.ca (heather underscore johnson at shaw dot ca)

So...the picture of Evan with his girlfriend Marley. This precious little girl was one of Evan's NICU pals. They were in the same bays for the longest time and we were blessed to get to know Marley and her parents, who have become special people in our lives. I just wish they lived in Saskatoon so we could be closer to each other! Anyhow, Leah became a source of strength and encouragement to me, and continues to do this. It is something else to have someone share the journey and fears of being a preemie/NICU mom. Little Marley went through a lot. She was born at 27 weeks and had setbacks that would have rocked my world. Pneumonia and an infection and on ventilators and CPAP...yet this precious little angle soldiered forward. I tell you...these NICU babies put us adults to shame!! They have such determination and fight in them!! Anyhow, as time went on we started calling Evan and Marley boyfriend and girlfriend, and Leah and I have already determined they are going to get married some day!! hee hee hee.

Leah and Mitch had given us this t-shirt for Evan that matched Marley's that says "Hello, my name is Evan. I'm new here." Our goal is to get together as often as we can and watch as these two little angels grow in to their t-shirts!! So this is photo one! Mitch, Leah and Marley were in town for Marley's appointment so they were able to come over to our house for a visit. Man, was that ever the best. It felt so good to be together with them and share time OUTSIDE of the NICU!

I've been having Evan playing on the floor more and he loves to roll back and forth and has really started cooing away and watching his toys. I just need one of those floor jungle gyms with the hanging toys! He'd LOVE that!!

Poor little guy has had a stuffy nose the past few days so his sleep has been interupted and he gets frustrated. Thank heavens for saline drops. But I feel so bad for him. His temperature is normal so that is good. But I'm constantly picking boogers from his nose. Sorry, I know that's gross. TRUST ME...kid boogers have always been a point of queeziness for me...but now I have to do what I have to do...and then GAG later!! :)

Mom and I are taking Evan to get weighed this afternoon. I'm hoping it is a good increase again! He generally does really well at an ounce a day. 1/2 an ounce to an ounce is what is liked to be seen...so he is pretty good with the weight gains. I still haven't tried him back on a full feed of formula. He's still just on 2 feeds with 1/2 teaspoon of formula in 100mls of my milk for his caloric intake. I try to add just a touch more formula to see if he can stomach it. I'm scared to try the full on bottle of forumla though because I HATE that gagging issue! Maybe I'll try on a weekend when Brett is here, and I'll give Evan the Oval before his feed. But if he could take the full feed, he'd be gaining weight even quicker!

I'm sitting in my living room staring longingly out my front window at how GORGEOUS it looks outside!! Maybe I'll try taking Evan for a walk a little later. I'd LOVE to catch some sun and get some color on my pasty skin! UGH!!

Well, I suppose I should get going. We will be leaving soon for the big weigh, and Evan is still napping so I better take this opportunity to make myself look presentable to the public!!

Keep the prayers going for Evan. Please pray that his nose will no longer be bothered with stuffiness, and that he will soon be able to digest the full formula feeds. And just for general health and protection.

For myself, please pray that I will no longer be over taken with unreal fears of the "what ifs". I find that my fears are overtaking me and stealing my peace and joy. I guess I just feel like I couldn't protect three of my previous children, and I'm scared that something would go wrong now with Evan. Stupid dumb attacks from the enemy, I know...but it's what I'm dealing with. And I could really use the prayer and support. Pray that my sorrow and grief in missing Zac would not overtake me either and that I will continue to focus my strength on Evan and Brett in the joy of each new day.

Thanks everyone!

Our boy has passed the 6 pound mark!!

"Whacha lookin' at?!"

"Ahhhh, sleep!"

Our little angel!

Well, we went to weigh Evan today and he has passed the 6 pound mark! 6 pounds 2.6 ounces! NICE! It's crazy to watch him growing and growing! What's even crazier is knowing he has been with us for 12 weeks now, but it technically only 4 days old (corrected)! Insane!

He is the joy of our lives, and we are loving every moment with him!

His new favorite thing is laying on the floor and rolling from side to side. He doesn't even mind tummy time!! It's wild to watch him!!!!!

Everyones prayers have been so instrumental in his life, and I only ask that these prayers continue on and on!

May 28th...my due date

Wow, strange to think that yesterday was my actual due date. Evan hit his 40th gestational week yesterday...yet he is almost 3 months old! Messes with ones head! Yesterday I took Evan with me to the cemetery to visit Zac's gravesite. Evan was fussy the whole way there...and he is never fussy in the vehicle. I let myself think that maybe he somehow sensed something. Who knows. But I wanted Evan with me on this day to visit his brothers site. Even though I know that Zac is not there...I know he is in a much better place where he has not suffered one day. I know he is with his other brothers. I know he is with family and friends who have passed on, and I know they are watching over him for me. And I know that Zac is with me every day in my heart. I've been struggling. Most of the time I am filled with joy with Evan...but the sadness of missing Zac has just been overwhelming. Yet I carry on with a strength that is beyond me for the sake of my husband and my son. I love my men dearly! Ah, the sadness will always be a part of me. But I can't allow it to BECOME me! The wildest thing happened. I got in to see my hair dresser yesterday on short notice and phew...good because my hair was becoming a nightmare. My mom came and babysat Evan and I actually went and did something for myself. Well, as I was walking to my stylists chair I heard someone say my name. In the seat next to where I was going to be was my absolute most special NICU nurse. She was with Zac a LOT in his three days of life, and after his passing she and I would talk about him often. One day she told me how she was getting ready for work one day and suddenly all she could think about was Zac, and the way he would look at her while they were together, and how this little guy is deeply tucked in her heart. Like I say, this nurse is VERY special to me. She was also with Evan from time to time. She was the only one who would really explain things to me, and I knew how much she truly cared for Zac, and cares for Evan. Well, all I can think is that God knew I needed to see her yesterday on such a bitter-sweet day. It was sooooooooooooooo good to see her!! She was exactly what I needed. To be with someone who was/is connected to my little fighter boy. Some days I really miss my NICU community! Evan is doing really good! Content, growing, bringing us much joy! Although this morning he was a stinker...he was wide awake from 1-4:50am!!!!! By the time I finally got to lay down the sky was already becoming light. Yup, the sleepless nights are real! He is just shy of 6lbs. That's so cool! Now all we need is his poor hair to grow back in from the spots that were shaved for IV's! Poor kid has a wierd Frier Tuck hairdo! He has the most amazing eyelashes. They are so long! He truly is a beautiful baby! Takes after his daddy!! Even though life did not turn out the way we expected...it is still good, and God is still good. He blesses us each day we have Evan in our lives. And He holds Zac in His arms until Zac can be in our arms once more.

Evan's favorite spots...

Tummy time

Working with dad

Most favorite spot of all...mommy's arms!

So just a few pictures of Evan's favorite spots...wherever there are arms, Evan is happy! :) hee hee hee.

Evan is doing really well from his surgery. He has done really well and puts us to shame with how well he dealt with his pain management. And he has been eating like a horse since the surgery. That's good though...he can afford to pack on the pounds!!

It's strange to think that as the 28th approaches, that was my due date with the boys. And here Evan is quickly approaching 3 months old! Wow, it's crazy to wrap my head around that.

Well, this is short but sweet, but Evan is beginning to stir. The eating machine is waking!

We are back home!!

Hello everyone. We are home once again. The surgery went well, and now it's time to heal and recouperate! Yesterday morning when we handed our baby to the OR nurse I lost it. It was so hard to do. Once the surgery was over the doctor came and talked to us and said that Evan did perfect with his anesthetic, and with the surgery. By the time I got to go to the recovery room Evan's breathing tube was already out, and man oh man was he screaming. It broke my heart. We were both wheeled up in a wheelchair...me holding and comforting Evan. He did really well, and then just after lunch he was having trouble with his breathing and his respiratory numbers were low and sporadic. So he was watched closely. And that's where my mental breakdown began. It was so hard to have him back on monitors and listening to the beeps again. My wonderful mother came and hung out with me once more throughout the night. I finally got a few hours of sleep...but I don't think my mom got any! We knew there could be some breathing issues with Evan due to his history of apneas and brady's...so we we should have been mentally prepared, but I had had NO sleep the night before the surgery so as the day had progressed I broke down more and more. Everything was hitting me, and I was beyond overwhelmed. Through the later day and evening Evan's breathing got much better. By this morning we were ignoring the monitor completely. I stopped by the NICU to say hello to some of the nurses and a couple of the moms that I have come to care about. I had a nice chat with everyone, and a few of the nurses came to Evan's room to see him!! It was so sweet!! I wanted to smuggle Evan out of little Ped's and take him back to the NICU. It is SUCH a different atmosphere, and little ped's is so much more independent. At one point I didn't see Evan's nurse for a couple of HOURS!! It was a good thing I didn't leave his side or I don't know WHO would have been paying attention to him!! It was just frustrating after having such care in the NICU. But we managed. Anyhow, just after 2pm we got the word that Evan had been cleared for discharge. It was GREAT!! Before we left we stopped by the NICU one more time and saw some of the nurses, one of Evan's neonatologists and the resident neonatologist. Everyone was so happy to see how well he was doing. The ride home was nice! Nice to know we were heading home and nice to know that for the most part, we are done with the hospital. I will be happy when Evan is right back to his old self and not dealing with healing. His surgery was done laprascopically, so it was less invasive and the incisions are so hard to even see! Pretty cool! Today Evan's appetite has been huge! But yesterday he hadn't eaten anything for 11 hours. He had an IV, but no milk for 11 hours. So he is making up for it today! Right now he is sound asleep in his bed with the occassional grunt and squirm. He is on Tylenol for pain control, but he doesn't seem to be too uncomfortable so that's good. We met a young mother last night who just blew us away. Her daughter was born with a spinal disease, and with this disease children aren't expected to live past the age of 2. She had come in JUST to have her daughter's nasal prongs changed, but in receiving saline, the fluid entered her lungs and began a spiral of downward events. We watched as this young (and I mean young) mother doted over her daughter, patting her back, adjusting her positions (she can't move on her own), suctioned her daughter's mouth and throat and rocked with her daughter in her arms. Today something big happened and they were whisked away to PICU and then brought back to the isolation area of little ped's. She saw my mom and told her that she was told that her daughter had maybe hours, days or weeks left to live. She signed a DNR because she no longer wants her daughter to suffer. She and my mom had a good talk last night while I slept. My mom shared my story with her, and she said to my mom that of all the animals lambs are the only ones to sacrifice themselves in the place of another member or their herd...and that Zac sacrificed himself like a little lamb for the life of his brother Evan. As my mom shared this story with me (while we were drinking our starbucks in the main mall), we both broke down in to tears. I miss my Zac. I prayed the whole time Evan was in surgery that Zac was looking over his brother once more. I truly believe that Evan has his brother right by his side every minute of every day. Evan has an angel that knows his name. I am still so broken that Zac is not right here with us. That we don't get to look in his crib and see those beautiful searching eyes looking up at us. That Evan will never get to be with his brother again until heaven. And as we watch others with their sets of twins and see the joy the get...it hurts knowing that our little boy is missing from the picture or our family. We only get to hold him in our hearts. And then I get angry. Angry that God gets to enjoy him while we continue to mourn for him. I'm angry that such a big sacrifice had to be made by my first born son in order to protect his brother and his mommy. And I don't understand why such a huge thing would be asked of such a little angel. I know he doesn't want me to be sad or to be angry. And for the most part I do my best not to be. I am grateful for such a special little boy who saved our lives. I am grateful that one day we will all be together again. I was blessed with 28 precious weeks with him, and then 3 days to love him and to be able to say goodbye to our amazing little boy. I am such a mix of emotions right now. I know that I will continue to feel like this. All the confusion, all the changes in our lives and adaptions we've made. I have spent the past 3+ months of my life in the hospital, and now that we are done with it...I feel almost lost. I miss the wonderful people I met in NICU, and miss the friendships that were formed even through the circumstances. I feel like I have to readjust to life from today on. Like today is the beginning of the rest of our lives. And I almost don't know how to deal with it. I am excited from this point on to be focused on Brett and Evan and all that life has for us. I am excited for Evan to be completely healed and just getting to enjoy our healthy, strong little boy. I guess right now I am just tired for all that has gone on. And realizing that from today on we have a "fresh start" so to speak. I am realizing just how exhausted I am!! I think I could sleep for a week!! Thank goodness Evan bottle feeds too...I think Brett will be on feed-duty tonight!! 2 nights of no sleep is no good!! I'm excited for June 22nd!! That marks 6 weeks of Evan being home, and the time that we are "freed" to be out in public with Evan!!! I've had lots of people ask what they can do to help us out...and I'd like to throw something out there. The NICU has become a very special part of our lives. The babies in there are special children and people who have never experienced the NICU will never understand what goes on in there. I would like to ask that if any of you feel led, the NICU desperately needs sleepers of small sizes (ESPECIALLY preemie). If people feel led I would love to ask that if you have the means to purchase a sleeper (either yourself or as a group) and then get them to me, I am planning to gather as many sleepers as I can and they will be donated to the NICU in memory of Zac! I want Zac to be an angel to carry on something special to others in need in the NICU. This will also be a request made once Evan's baby shower is organized...that for every gift Evan receives that a sleeper will also be brought for donation to the NICU in memory of Zac. The anit-scratch mitties would be a good item as well! I will take the donated sleepers/mitties to the NICU at the end of June or beginning of July. Anyhow, I suppose I should go. Evan is beginning to stir so I should be ready for him! Thank you so much for all your prayers before, during and continuing on for Evan regarding his surgery...well...his life in general! You are all angels to him!!

Surgery day tomorrow morning, May 21st @ 8am

OK people, need some prayer for our little guy!! His surgery is on for tomorrow morning. We have to be at the hospital by 6:30am and his surgery is scheduled for 8am. It's going to be tough because he can only nurse up to 4am, and then from 4-5am he can only have pedialyte or water, and then after that nothing. It's going to be interesting because I don't think it can be perfectly timed to nurse him so I might have to just wake him up and try to feed him at 3:30am. And I'm not sure how he'll do with pedialyte or water. And it will break my heart to see him hungry! There had been talk of moving his surgery to 11am, but thank goodness that didn't pan out. We just want it done with. And then he will have ALL day to recoup and will stay at the hospital over night. I have moments where chills of pure fear overtake me. I know everyone says it's "routine" and simple and non-invasive...but I'm still frustrated that this little fighter has to experience yet another thing. And everyone keeps saying he'll be fine...but I heard that through the whole experience with Zac, that Zac was going to be fine...and look what happened. So it's hard to trust the whole "he'll be fine" statement. And logically I know that Evan WILL be fine, but I won't be able to rest until it is over and we are sent home with confidence that he IS fine! Please pray for the surgeon, the anesthesiologist, the nurses and his after care nurses that God's hand will be guiding them every moment and that things will go just perfect. Please pray that Evan will recover from the anesthesia with no issues. The hope is to have a local anesthetic, and that is what we will be requesting, but that may change once they get in to the OR if it can't be done. Then he will have to have general anesthesia and will be intubated...ugh. Please pray for Brett and I that we will be able to rest well tonight. I know Brett won't have trouble sleeping, but I know that I will be struggling. I don't like stuff like this, and to have to watch as someone takes my baby from my arms to do this procedure...the trust that I have to force on to myself is huge. I just want it over with and I want to be able to rest well and watch my son recovering with little to no pain. I am looking forward to life after all this! I am looking forward to the hernias being repaired so there are no concerns for other complications, and I'm looking forward to life being "normal". Thank You for your prayers. I will update on things in a few days once Evan is settled in. Pray hard!!