Mixed bag of emotions...

So on Friday night Evan had his first "for real" bath! AND I MISSED IT!!!! Again, busy pumping. But I love that Brett and his mom got to watch and witness. Evan normally throws a fit because usually it is just a sponge bath wipe down. But Friday night the nurse sat him in a basin of water...and they said that he didn't make a peep! Apparently he loved it!!! At least there was a picture of the big event! He looks so hilarious, but so chilled!

The nurse who had him that night is going to try to have him tonight and she is going to make sure I am there for the bath!

Yesterday was a rough day. Brett and I went and finalized/purchased Zac's grave memorial plaque for his site. We both felt sick being there, and I fought so hard to keep it together...until we walked out the doors. Then the tears and anger came. Yup...pure anger. I'm angry that our Zac is not and will not physically be here with us. I am so angry that our son was taken all too soon. I miss him so much my heart hurts. And I'm angry that his plaque won't be on his grave site for at least 6 weeks. It means his grave site is left unmarked...just a number. SO...I'm going to go find something in the meantime. I can't stand the thought of this bare site.

Then as I headed to the hospital to be with Evan my heart felt joy and love. I got to snuggle with Evan for about an hour yesterday, and I sure needed that! To feel him against me, and feel his breathing...it was perfect. And his vitals are always so good when either Brett or I am holding him. Brett did kangaroo care with him a couple days ago and Evan loved hanging with his daddy! My time with Evan fills my heart with love and a peace that can't come from just me.

Right now it's difficult because Evan is right beside the next bay to where Zac was. Yesterday looking at Zac's spot really broke my heart. Seeing that open isolette, all these painful memories came flooding in and I felt so sad and miss Zac so very very much.

This is where the mixed bag of emotions come in! How does a person deal with this?!

Evan is doing really well. He is still on just a small amount of his high flow air through his nasal prongs. I think they will try again to take him off it tomorrow. He has been doing well with not having many brady's or apnea's. So that's good! The past couple of nights he has had no brady's. Yesterday he tried to brady at shift change when the nurses were all busy getting ready to end/start shifts. I am convinced that he does this because the attention is no longer soley on him!!! My boy is an attention getter! hee hee hee. But other than that he has been doing well with the brady's. But...KEEP PRAYING about this! He still has weeks ahead of him to outgrow this.

He is gaining weight wonderfully! At least an ounce a day, which is what they want to see. His nurse showed us the chart they keep of his weight gain, and she said that it is the perfect incline! So also keep praying that he will continue on this track as well. We definitely don't want any dips! But as of last night Evan was 3lb 5.5ou!! He's my rockstar!!

One of my most favorite nurses was in yesterday AND was Evan's nurse for the day!!!!! I was SOOOO happy!!! She had been gone for about a week, and she couldn't believe how filled in Evan is getting and how he is looking like such a little boy! She was very happy with how he is looking! OK...the bath picture doesn't give him justice, but he really has been filling in!! :)

So I have to admit that my bible has been sitting way-side these days. Truly...I am not turning my back on God...I just feel a tad bruised right now. And I feel like it is once again going to take baby steps to get myself back solid with God. I know He is here, and I know that He has Zac in His arms. But I'm jealous. I'm jealous that Zac is not in our arms. I'm jealous that God has far too many of our children in His arms. But the other day a dear dear friend of mine gave me a bible verse...and it is one of my baby steps to bringing me back to my friendship/relationship with God...

Lamentations 3:32 ......." Though he brings grief, he will show compassion, so great is his unfailing love."

I know that He does not purposefully bring pain to our lives. I know this is not the world He intended. I know that we can thank sin for this. Part of me feels the verse should read "though the WORLD brings grief"...

And this verse seems to adequately wrap up my feelings. My grief in losing Zac...compassion in sparing our son Evan. And I know that His love is unfailing. I know that it is only by HIS grace that we are making it through each day. I do not carry this strength on my own. It is not by my own doing.

Just because I'm experiencing grief and sorrow...it does not mean that in those moments I give up on my faith and God. Just like marriage...just because there are some bumps along the way...you DON'T QUIT!!! You fight hard, you work on the relationship, and you do your best to keep it going! You don't rely on your own strength. You rely on a two-way street.

God knows I'm angry at Him and the situation...but He will lovingly wait with open arms until I can fully return to where we were at. But in the meantime I won't do anything to cause great pain to either of us.

Just as I am grateful for a God who loves, I am over the moon grateful for a husband who loves me as he does. I am grateful for a husband who is not afraid to talk to me about what he feels. I am grateful to a husband who doesn't get annoyed or tired of all my tears and sadness. I am grateful for a husband who is my best friend.

When we were at the cemetery yesterday and meeting with the person who helped up with Zac's funeral, he mentioned how when the loss of an infant happens it is the hardest thing he deals with, and they always worry about younger couples. This isn't the first time we've heard this. But after we left I asked Brett what he thought about that comment. And we both agree that it's so sad that something like loss would destroy a couple. Brett and I feel closer than ever. But I know it is because of our faith, and because we loving allow each other to be who we are in our pain. We don't minimize the way we cope, we allow and support the tough days. We talk about Zac, we talk about everything. I appreciate this so much in Brett. Because I am the one still crying daily...and he doesn't make me feel like I should "get over it". He just loves me and hugs me and tells me "I know". I am truly blessed to have such a wonderful husband and friend. I love you Brett...more than you will ever know!!

Well, I suppose I should sign off for now. Few things to do before heading to the hospital for my day with Evan!

Again, thank you for your continued prayers. Please continue to pray for stength and protection for Evan. That his weight gain and growth will continue on this awesome path. That he will be guarded from any germs/bugs floating around the NICU.

Please pray for health for Brett and I. That we will be protected from colds/flus. Pray for strength for both of us while Evan remains in NICU. Pray that we will not allow fears to enter our minds, and that we will be able to live each day in gratitude, joy and optimism!

Beeps, Bings, Buzzes...enough to drive a person insane!

Yesterday I had a tough time while visiting Evan. Normally I am able to tune out all the beeps, buzzes, bings from the machines around him...but yesterday they seemed so constant, and so very loud. It was enough to make me want to melt down...and a couple of times I almost did. The tears welled up on a few occassions. I couldn't stand it. I just couldn't tune it out and with every beep I felt like my heart was being kicked inside out. I found myself looking over to where Zac stayed, and seeing the empty open isolette. I looked at Evan's face and saw Zac's eyes looking at me. Then in the next breath...there was my precious Evan. Our precious miracle. Our gift from God. And then my heart just couldn't handle all the joy I felt. I was so tired yesterday. So overwhelmed. The nurses say "when Evan goes home..." and my heart and head just don't know how to grasp that idea. I am so excited...WE are so excited to one day hear "he can go home today", yet it feels like that day will never come fast enough. We have been UNBELIEVABLY blessed with 20 glorious low-concern days. Evan just keeps growing stronger and stronger. And has been doing so very well. I KNOW that his brother is cheering him on. I KNOW that he has given Evan the fight to do well. Yet I KNOW that there are still many days ahead where there is the potential of setbacks. It's hard to comprehend that as a typical situation...and we pray against any setbacks. I usually stay with Evan until 5:30 before heading home for supper and then returning after the nurses shift change at 8pm. But yesterday I just couldn't stand it one more minute. I couldn't take all the noise. I looked at my son and saw how wonderfully he was doing...his vitals were wonderful, he was sleeping peacefully. The doctors also did rounds a bit later and the NICU was out of pump kits which I needed. SO, with all the emotions and inner turmoil I decided to leave at 4:30. I got home and there were more condolence cards. I opened and read and cried and cried and cried. I just couldn't handle it anymore. Don't get me wrong...we have absolutley appreciated the outpouring of love and care through cards and words. It was just yesterday was so overwhelming to me. And I think I just needed a really good cry...again. Brett came in from the office and asked what he could do. I wish someone could do something...change things and bring my Zac back. But in the meantime...I just needed Brett to be beside me and let me cry. He is my rock. I don't know what I'd do without him!!!! Without everyones prayers and support. Then on top of it all, I felt like a HORRID mother for leaving Evan the hour earlier than usual. Ya ya I know...I'm not, I need to allow time to take care of myself...I know. But in the moment that is how I felt. Fast forward to today. I did my usual 6am phone call to see how Evan's night was. His nurse was on coffee so one of the other nurses read his chart. He had a good night, tolerated his feeds (as usual...he is a good eater!), and had NO brady's!!!!! That was GREAT news!!! His night nurse had done his bath and weight later than usual so Brett and I missed it. But Evan is now JUST BARELY under 3lbs 2ou!! He gained another 16 grams yesterday. What a kid!!! He is looking so much more like a baby with some meat on him! It's adorable!! I got there just after 1pm today. His day nurse (who I really like!) said they tried to take him off his high-flow air but brady'ed a couple of times so they put it back on. Just still not ready to do it completely on his own. And that's ok! He will soon enough, we know that! And with his air on he was great. This afternoon I got to do kangaroo care with him, and it was AWESOME!!!!!!! I LOVE it!!!!! There is no better feeling in the world!! I enjoyed my day with him today! And all the other noises didn't bother me as much. So that was good. Well, I should sign off. Brett and I are soon going to head back for our evening time together. Evenings are Daddy-time!! It's great!! OH...today Evan is 31 gestational weeks. Tomorrow he turns 3 weeks old!!!!!

NICU...a parents "understanding"...

Evan is 3 pounds as of last night!!

Well, last night we went back to visit with Evan after the nurses shift change as usual. This is Brett's time...daddy time. I get the joy of spending all day with Evan, so evenings are all about daddy!

Grandma and Grandpa J came to see their little grandson.

We didn't stay long because of some stuff going on with another little guy that has been in NICU along with Evan. A little guy who was in the first bay where Evan started out. And sadly things weren't sounding too good. The poor mom was crying and we knew there was a battle going on for this precious little boy. Both Brett and I looked at each other, and we knew we were both being ripped back to our days with Zac. When we are in the NICU it is common courtesy to TRY to stay as out of ears range as possible with others babies and situations, but the space is cramped and sometimes you can't avoid the conversations. I don't discuss what goes on in there out of a mutual NICU parent respect. If you've never experienced this ward...first of all, phew, but secondly...you can't even begin to try to understand the emotional rollercoaster NICU parents go through. There's no point in even trying to understand it. It just won't happen.

But seeing this mom in tears and in turmoil...all I wanted to do was go to her and give her a big hug. So instead I took her a box of kleenex. I know that for those parents in NICU who don't know we had our Zac and lost him, they just see us happily with Evan...but Brett and I get it when you see the look of pain on a parents face. We feel their agony. And yet, there is nothing you can do for another. To say "we understand" seems so rude almost. We understand OUR pain and sorrow, but can one ever truly say they "understand" another's pain and sorrow?!

Testings were going on, so we cut our visit short with Evan out of respect for this young couple. It was hard to leave Evan at that time because our emotions were raw again, and it's instinct to want to stay and protect him. Yet he's in the best hands and the best care.

I'm sending out a request for an unspoken prayer for this little boy. It is so hard when we see a little one who has been there the same time as Evan now struggling more. Please pray for peace, comfort, strength for this couple. Please pray for God's protection over this little one.

I find myself praying for the other little babies in NICU while I'm with Evan. They are general prayers because I will admit...I often wonder now what good my prayers actually do? I know it's because I didn't get the answer for our first born son...and I feel somewhat...angered, for lack of better explanation. I feel on guard with prayer. I won't stop, but I will admit that I feel my faith a bit weakened these days. Yet, when I look at Evan and the blessing we have been given...I know that my prayers, although not answered fully to what we would have hoped for, have served Evan well. My prayers were answered through pain in losing Zac. I don't understand that...I don't get the "why" of it all. I find that I am asking the "why" question a lot more lately.

I feel almost guilty admitting the rawness and truth of my feelings...but hey, I'm human! What human person hasn't felt weakened and angered. So what's the point in hiding the truth of how I feel. I haven't done that since starting this blog, so why start now. If I want to share the journey, then I have to be true and real.

Don't get me wrong...my faith is still in tact...it's just somewhat bruised. I won't walk away because I want to be together again with all my family gone before. And I know we can't get through the days ahead without the strength that God provides.

People tell me how strong I am. I don't feel strong. I feel like I walk around in a haze trying to sort out how and why things turned out this way. I feel almost like I'm not even present in my own body some times. Like I'm going on auto pilot. It's not ME that's strong...I can only credit God for giving me the strength that I need to keep putting one foot in front of the other, for taking one breath after the other. I feel soooooooooooo blessed to have Brett to get through these days together with. I feel even closer to him than ever...is that possible?!! When I think about him I feel so much love, admiration and pride. It saddens us when we hear how couples often split up after going through something like this. I feel truly fortunate that we can talk about this openly and candidly. We have been through sooooooooooooooo much on our journey to a family, and I just feel really blessed to have Brett as my partner through it all.

On a different note...yesterday was bizarre...in the mail we received Evan's health card! At first I was confused and it almost felt strange to open this piece of mail and see Evan Brett Johnson on something! I smiled. And then a tear escaped...Zac's card is not in there, and won't be. What should have been two health cards for our boys turned in to a single card with one name. And then it hit...here we go...the milestone moments that will always be bitter-sweet! And here come the tears once more just typing this.

Last night Evan hit a truly wonderful milestone...he is 3 POUNDS!!!! He's juuuuuuuust under 3lb 1ou. By tonight he will have passed that. It is CRAZY how quickly he has gained this weight, but I suppose that's what would happen naturally if he and Zac were still inside of me. The last trimester where they pack on all the weight.

I can't believe how much I miss being pregnant, and how gyped I feel for missing out on pretty much the whole 3rd trimester. I know that people would say I'm "lucky" to not have to go through the uncomfortable 3rd trimester...but that almost hurts to think someone would think that's "lucky". I get saddened, and honestly frustrated when I hear people complaining during their pregnancy. Yes...I do understand how uncomfortable it can be. I was very uncomfortable a lot while at the tail end of carrying the boys. I could barely sleep I was so uncomfortable...but I could never complain because I knew what and who I was carrying inside was so worth every second and every uncomfortable moment. To be pregnant...what a blessing and worth every moment of every pain, discomfort. I suppose this is coming from a person who fought for almost 8 years for such an honor as to ever HOPE to BECOME pregnant. So my view is possibly different from others who has never had to struggle.

Anyhow, we are so thrilled for our little Evan for reaching the 3 pound mark! Very proud parents indeed!!!

I spoke to Evan's night nurse and he had only one Brady, but it turned in to an Apnea so he needed stimulation to get out of it. But again the nurse assured that this will be something he will outgrow as he gets older. I was very happy to hear that he only had one episode last night! That's really good news.

I will continue to thank each of you, even those I don't know, for all your prayers for Evan. I can't stress enough how much it means to us...especially to Evan. You are witnessing the answers to your prayers. And we ask that these prayers do not miss a day. We still have weeks ahead where Evan will remain in NICU, but I also ask that you would pray for a hedge of protection around Evan's isolette so that he will be guarded from ANY germs/bugs/infections. That his lungs will remain protected against anything that would cause him to work harder or anything that would cause his lungs/body any stress.

We feel so blessed by the support and encouragement from family, friends and even people we don't know personally. We could not get through this without this support. For the prayers for our little Evan...I truly can't thank you enough. Please keep those prayers going!!

Well, I better go and eat some breakfast and get ready for my visit with our son this afternoon.

More brag pictures

Loving my soother tonight...and blocking out all the noise!!

This is one of my preemie onesies...and it's still huge. But if my mommy showed it to you, you'd be shocked at how little it is. But I AM little! But I'm growing!!

OK...just HAD to share some pictures from tonight!!! Evan has gained yet another ounce today! He is now up to 2lbs 14.75ou!!!! He is so quickly gaining to that 3lb mark! And we are excited. We can see changes in him since his arrival.

We had a nice time with him tonight before we said our good nights. It's soooooooo hard to leave at the night!! I can hardly wait for the next day to be with him again!

Another good day, with a prayer request

Well yesterday was another good day. No brady's or apnea's for our little guy!! I got to kangaroo care him again, which went awesome. His vitals stayed perfect. After I was done the nurse was trying to tell Brett to try and he kept saying "no, it's okay. We have lots of time." So I went to go pump (sorry...but it's a major part of my life now! hee hee hee), and while I sat there smiling about my snuggle with our son Brett came in and told me I was missing out...he was going to kangaroo care too!!! The nurses ganged up on him and he agreed! I couldn't BELIEVE that I was going to miss the first true snuggle with Brett and our son!!!! And then I was choked because how was I supposed to relax and continue my task! BUT, fortunately Evan did so well with his snuggles that they extended the length of time with Brett and I was able to catch the tail end of their time together. It was AWESOME!!!!!! And then when we went back after dinner Evan had his usual night weigh-in and he gained another ounce yesterday!!! THREE OUNCES in two days!! He is now at 2lbs 14.5ou. He is quickly approaching the 3lb mark!! Anyhow, I called (as usual) the night nurse at 6:30 this morning to see how Evan's night was. He had had 4 bradycardia's, but two he corrected on his own. He had one more before I got there, and then one while I was there...but that one didn't last long. His high flow air had been decreased yesterday, so it might just take a day or two for him to adjust to that. But I am asking that you continue to pray that the Brady's and Apnea's would be few and far between, and soon enough NONE! I can't believe that this thursday Evan will be 31 gestational weeks, and on Friday he will be THREE weeks old!! He is even looking more filled in. And we can see the changes taking place in his little body. He is such a trooper! He has such strength. I really admire him! He is quite the boy! We can't thank you enough for your prayers for Evan, and for us! Honestly, we see how the prayers are helping Evan! Continue to pray against the Brady's and Apnea's, that he will continue to gain weight, that he will soon not need the high-flow air, that he will soon figure out the whole sucking/breathing/swallowing thing so that he can start to eat without the feeding tube. We are so humbled by all the love and support that we probably even don't realize.

A good night for our little guy...

Well, yesterday was good with Evan. He is happy on his air so that's good. I did get to hold him Kangaroo care. But at the end of our snuggle he decided to give me a heart attack and try to Brady. A good rub on the back woke him from his deep sleep...but still...that's nerve wracking. I told the nurse to put him back in his isolette so that he could stretch out. Apparently his Brady was called a positional Brady. Sometimes he will get too comfy, or if his chin was too tilted down in to his neck then it can create a Brady. As soon as he was stretched out in his bed he was perfectly fine. What a turkey...keeping us on our toes! His feeds went really well yesterday too. After going for supper with my brother and sister-in-law, Brett and I went back to the hospital to spend some more time with Evan. We like to go back after 8pm when the nurses shift change happens. I like to be able to spend some more time with him before we head home for the night. Anyhow...we got there right as his nurse was weighing him. He gets weighed each night. She lifted him and placed him back down and said "that can't be right". So cleared the scale, lifted him again and placed him back down and said "well...I guess it is right! Quite the little porker today!" Our son gained 2 OUNCES yesterday!!! So far his gains have just been in grams, so to hear 2 ounces blew us away!!! He is now at 2lbs 12.5 ounces!!! That's GREAT! We thought maybe he needed to "relieve" himself and that contributed to his weight, but his nurse said that he had just had a good poop before she weighed him! Brett and I left while Evan's vitals were perfect and he was sleeping soundly. That makes it a BIT "easier" to leave. I HATE leaving him, but it helps when he is doing so well. Brett and I actually went and rented a movie!!! We haven't watched a movie and snuggled up on the couch together in over 8 weeks!! So it was nice to be able to sit there and enjoy each others company and do something as normal as watching a movie, and to be able to not be in a panic! I tried really hard not to fall asleep during the movie, but my head kept snapping...I was done!! Brett laughed at me, and I just said "I just have to close my eyes!" I called this morning at 5:30 to see how his night went. His nurse said that he just had a couple tiny spit-ups. I asked if he had any Brady's or apnea's. She thought he had a tiny Brady while she had been on break, but she checked his records and....no Brady's or Apnea's!! Thank you God!!!! I am so thankful to God for another good night, especially with no Brady's or Apnea's!! I think I'm going to go lay down for a bit more. We will be heading up to the hospital for my usual arrival time. By 1pm at the latest. I thank you all so very much for your prayers. PLEASE keep them coming!!! I can hardly wait for the day where I can post the picture of Brett, Evan and myself walking out of the NICU doors. Again...a bitter sweet day that will be...but we are so looking forward to it!!

March 21/09 - Prayer request for Evan...

Well, I did my usual call at 6:30am to speak with Evan's night nurse to see how he did through the night. I guess he had a couple of pretty bad Brady's and is back on his high pressure air with the nasal prongs. It's still a low dose and mainly room air that he is breathing and she said that he has been fine since. Just not quite ready to give it up completely. I admit that this breaks my heart. It's still not a massive set-back, and I'd rather this than him struggle. But please pray that Evan's little capillaries in his lungs will widen and open fully so that he does not have to struggle without the air. The only bummer with the air is that it can make his tummy more gassy and he can occassionally struggle with feeds. But his nurse said his feeds were fine through the night. Also, he doesn't really enjoy the stuff on his face and we find that he gets even more squirmy. He needs to try to be calm because he burns more calories than he saves when he does this. He is naturally a mover...so we don't want him to be more uncomfortable. I HATE not being with him!!! This is driving me insane. I should be able to care for him and protect him. And these little hiccups just remind me that my body failed my boys for some reason. I know I did nothing to cause my water to break with Zac...but it feels like I did. It feels like I should have been able to protect my boys better...and I couldn't. And Zac suffered for that. And now Evan has to fight even harder when he should have been carefree kicking and punching in my tummy still. They both should have been. Please pray that I will be able to forgive myself. I know it might sound irrational to you...but I feel so guilty. I know my hormones and grief and worry are making me a tad on edge...but I need prayers for peace of mind. thank you all for staying connected with this blog. I know there will be many prayer requests made! And many good times and bumps to share. And still oh so many thoughts!!