I am still confident of this:
I will see the goodness of the Lord in the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord
Psalm 27: 13-14

Sunday, March 29, 2009

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!

Thursday, March 26, 2009

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!!!!!

Wednesday, March 25, 2009

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.

Monday, March 23, 2009

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.

Sunday, March 22, 2009

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!!

Saturday, March 21, 2009

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!!

Friday, March 20, 2009

Evan's big day

Yesterdays snuggle time. What a feeling.
Evan loves to "hug" himself. I love this pose. But then the stinker cuts off his air and I have to move his hands to remind him to take a deep breath! Loves to keep me on my toes!!
Holding mommies finger. He has a pretty good grip for such a teenie guy!
Well Evan had a big day. He was taken off his pressure air nose prong thingies (nice description, hey?!) and is back to breathing strictly on his own. His feeds were increased a tiny bit again. We are working on getting him to gain weight. Tonight we found out he gained 9 grams since last nights weigh-in. GOOD BOY EVAN!!! Keep it going!!!! Evan is still also maintaining his own body temperature without having the isolette to be told to warm up or cool down from his skin probe. The isolette is just set at a temperature, and Evan is holding his own!
So he had a big day!! And I couldn't be more proud of him.
We tried to do kangaroo care today during his feed, but it didn't last long. He got too comfy and started to forget to breath and his oxygen dipped right down. That was a first!! BUT, like I say, he had a really big day with lots of changes so it was probably just too much for him for another outing. The nurse put him back in the isolette and had to wave some oxygen under his nose to help him out. My heart was racing!! I didn't like that at all. So I'm TOTALLY fine with letting him be chilled for a day or two until he gets used to all the big steps he took today.
OH MY GOODNESS, today's nurse had him in newborn diapers instead of the itty bitty preemie diapers. It is HILARIOUS!! They look HUGE on him! But maybe it will encourage him to fill them in quicker.
Tonight Brett and I headed back after the night shift change. Evan had a bath and didn't like it at all. Typical boy! :) hee hee. Then Brett did his feed and did his mouth care. And then he read Evan his bedtime story book. It was so awesome to just sit and watch and listen! And Evan's vitals were beautiful the whole time. He knows his daddy was there, and he was so calm when hearing his voice.
This is the strange thing of what Brett and I have to deal with. The pure joy of Evan, and the unbelievable love we have for him. Yet...the pain and sorrow and how much we miss Zac. The hole is there. The emotions are so high and low. This morning I honestly thought I was going to lose my mind. While sitting alone in my living room I was completely overcome with sorrow and pain with the agonizing sadness in my heart for Zac. We are to carry forward, and I know that Zac does not want us to live in pain and sadness...but it just seems to wrong to have such high times without Zac here with us. He was meant to be here...and now how does a person deal with what is now our reality?!
I still hang on to God and trust that He is taking special care of Zac. I am trusting God that He will allow no bad thing to happen to Evan. I believe more than ever that we named our boys right. Zac will be forever remembered by God (and his mom and dad), and Evan truly is a gift of God's graciousness.
Yet the moments where my sorrow and confusion catch me and hit me hard...I feel so angry and so lost. Today I just felt on edge and was watching Evan like a hawk. I know that the tiredness and exhaustion of everything is catching up with me and causing me to react in strange ways. I know that my hormones are completely out of wack. But I feel like I don't know what to trust right now. I don't want to be mad at God. I don't want to allow thoughts that He failed us to enter my mind. I will never understand why this has happened, but I will fight to keep my relationship with Him on track, and will continue to trust Him where Evan is concerned. The fear in me won't allow me to believe in the day that Evan will be coming home...yet I trust that God will allow this. Evan has a great purpose in this world, and I will do my best to help him find that purpose.
Our story is no where near over. There is so much more ahead. There will be days of joys and fears while Evan is growing in the NICU. Evan will now have a chapter of his own. We are blessed by our son. We feel truly blessed.
I pray that you will all continue on with me on this journey. To learn what I am learning through Evan, and through what Zac taught me. Zac taught me to fight even when things seem hopeless and no one gives much hope. He taught me to love with all my heart even though the time was far too short. He gave me such joy and such pride.
Now Evan continues on with such a fighting spirit. He is a champion. He is making leaps and bounds. I couldn't be more proud. I truly believe that his life has such a great purpose and destiny too!
My boys are teaching me many things...even Zac from heaven.
Please continue to pray for us as we grieve, and rejoice. Please continue on this journey with me, and allow Evan to show you the next chapter and to show that miracles continue on! And please continue to walk by my side. There will be days where my words may be raw...but I believe in being real. And there will be days where I'm just a babbling proud mommy.
Please continue to cover Evan with your prayers. Pray that God's hand of protection will never leave him and that he will endure NO set backs!! I know that Zac and Evan have touched many lives in the NICU, and I believe they will never be forget. I know that the staff look forward to seeing Evan continue to grow once he comes home. I've already been told I better send pictures of him as he keeps growing! And we will make visits.
We dream of the day where we are told we can take him home, and for the final picture being taken of the three of us walking out those doors. And you know...Zac will be right there with us all too...coming home! I believe that he is his little brothers guardian angel. Always has been, always will be!

Thursday, March 19, 2009

Snuggle time

Just had to share this picture. It was from yesterday. I got to hold Evan twice during his feeds. The first time as I held him and just stared at him I just started to cry quietly to myself. Thank goodness I was angled away from everyone. I just looked at him and I couldn't believe that I was looking on the face of our son. OUR SON!! My heart once again bounced between sorrow and immense joy. Evan and Zac would have looked a lot alike. They looked so much the same in so many ways.
We have waited so long for this to hold a child of our own. So many frustrations and sorrows. Now loss of a child and the pure joy of a child. There are moments when I am sick with anger and sadness over Zac. It just feels so unfair. Yet Evan is so precious to us. We both just watch him in pure awe! His name is so true..."God is gracious". I will never deny that.
Yesterday was tough for me. I tried to make myself stick around home for a bit of the morning, and then my mom came with me on an errand. I had to call the NICU twice to see how Evan was doing...and only after hearing that he was doing wonderfully was I able to semi-breathe. When I am not with him I feel total anxiety and urgency to get to him. I did get a loving lecture by Evan's night nurse that I have HAVE to take time for myself and rest! That so many c-section mom's in NICU get sick and just don't rest. It's just SOOO hard!! I can't stand being apart from him for a second.
So I called again this morning at my usual 6am time to get his night report. He only had one Brady episode...so that's decent! And he is tolerating his feeds. They are trying to slowly increase his feeds because we want him to start gaining more weight. But the little stinker is SO unbelievably active and squirms all over the place that in my mind he isn't giving himself the chance to keep on the weight before he is burning it off! He is going to keep me on my toes, that's for sure!!
So...for those who wonder what I'm talking about when I say Brady or Apnea...these are two of the most common things for preemies. Since preemies aren't meant to be breathing air yet sometimes they struggle or "forget" to take breathes.
Brady's (Bradycardia) are when the heart rate slows below their normal rate. Usually they can correct it themselves, other times they just need a bit of encouragement. When I see Evan sleeping really deep and notice his chest slowing, I just give his toes a rub and he kicks back in to gear. Brady's are usually the result of apnea.
Apnea is just that the baby brain forgets to send a signal to breathe. This can happen when they are in a deep sleep, or can be from a stressful situation. There are other causes of apnea too.
But Evan's doctor believes that Evan will just outgrow these. He isn't in to a zone where he is having them frequently or severely. So that's good news. He is treated with caffeine!! No kidding!! My son already gets caffeine! I haven't even been drinking caffeine!
We are grateful that these episodes are not severe. If they were he would go to CPAP. More positive pressure air to his lungs. But that involves a breathing mask. My son HATES things on his face! Right now he is on a low dose positive pressure air just through the nose prong breathing tube and he is constantly trying to pull that out! So I pray that his episodes will soon begin to become a thing of the past, and that once again he will have that nasal prong thing out.
So my request is for prayer for Evan that the Brady's and Apnea will become non-existant.
We feel quite blessed with how well Evan has been doing. He is a very lucky baby. Maybe blessed would be a better word than luck. Which in a sense is kind of scary, because we know that even though we are told to prepare for a setback...we just won't be. He has done so well his first 2 weeks of life...that any setback, even if it were the tinniest thing...would set me off.
Please pray for protection and health, and that Evan will just continue to please all his nurses and his doctor, and that when we leave that NICU unit we will hear..."he was a very fortunate baby!"
Man oh man...it's only 8:15am...but I'm just dying to get to the hospital. I'm once again going to try to stretch myself to stick it out until lunch time. Last night I even came home for supper! Normally supper is just brought to me, but I'm going to try to start coming home and then Brett and I come back after 8pm after the nurses shift change. We spend time together, and I read Evan his bedtime story.
I feel like I'm running a mile a second but getting absolutely no where!! I HAVE to do some paper work for Brett's company stuff, but my mind just isn't in it! I have to force myself to focus. Oh what a day when Evan can be peacefully sleeping in his own bed and I feel like our life together is really beginning.
Well, I better get going. The more I avoid what needs to be done, the more grief I create for myself! And I just want to get things organized so I can get to my boy!
Please keep up the prayers everyone! Our Evan needs each and every one of them!! Please pray for me also that I will feel some sense of peace and that I will be able to take time for myself so that I do not become ill. Please pray for wisdom for Evan's nurses and his doctor, and that Evan's "setbacks" will be minimal to none!! I need to witness these continued miracles and through Evan. I need to believe that Zac's passing wasn't for nothing. Please also pray for continued healing to our hearts as we continue to miss our little fighter boy! There are moments where I am just completely overcome by sadness. Pray that this sadness will one day turn to tender thoughts and memories of the son taken from us all too soon.
Thanks everyone!!
Apnea is just like adult apnea...

Wednesday, March 18, 2009

Our Little Evan!!

The nurses made Evan a 1 week old birthday card for us on Friday. Can't believe he'll be 2 weeks old this Friday!!!
Had to resort to mitties because he thinks it's funny to pull out his nose tube! Turkey!!
Waving hello to everyone!! This one was from last night!
This is just going to be some updated pictures and I will do an official update either tonight or tomorrow morning. Sorry...my days are literally morning to night at the hospital, so I don't have much time for updating!

Zac's burial

Well, on Monday morning we laid to rest for a final time our first born son. As we drove to the cemetery I couldn't believe we were doing this. Couldn't believe this was the ending for Zac's beautiful life. So angry that it couldn't have been different. And I just couldn't breathe. The thought that kept going through my mind was "this is so sick!" No parent should have to go through this. After waiting almost 8 years for these precious boys...to have been granted too few hours with Zac...it's just not fair. But...what part of life is? We got to Zac's burial site and when all the family had gathered Brett and I once again lifted our son's tiny casket and carried him to lay him to rest. I just wanted to scoop him up one last time and just cling to him...but I know he is not there. I know it is just the shell of his precious body. I know he is running around and playing with his siblings in heaven. I know he is not alone, and I know that he is healthy and happy. I just wish ...ah, you know...what's the point of wishing. It will never change things. But I guess that's just a parents heart. Wanting to be with their child again. And we will be one day. Our family rallied around us once more. Wow...what would we do without such amazing family? Thank you to each of you for standing in support with us. It has been many days of heart ache and sorrow and total confusion. The confusion is really hard. I am broken beyond broken over Zac, but I'm so full of love and joy with Evan. I know it is one step at a time and one day at a time. The aching will never leave...the memory of Zac will never depart. Well, I better sign off for now. My mom has come over to help me with a few things and then run a couple errands before we head to the hospital to see my precious beautiful Evan. I have lots to update you all on our little bean. He is carrying on his brothers fighting spirit!! I am so proud of him!! I just sit and stare at him literally all day! He is amazing!! Continue to pray for Evan. He still has weeks to go in NICU, and we continually pray that he will not experience any major set backs!!! Please pray protection, and health over our little miracle!! Stand with us in support in prayer. We thank you all, and stay tuned for updates on Evan!!

Sunday, March 15, 2009

Zac's funeral...

First off, Brett and I were so unbelievably touched by the amount of people who came to honor Zac's precious short life, and who showed us their love and support. I woke up yesterday wanting to just go back to sleep and pretend the day wasn't about to happen. With each minute that approached to us having to leave...my heart broke more and more in disbelief. This wasn't why we were supposed to be going to our church. We were supposed to one day be preparing to have both our boys be baptized together and share in the glory of the day with friends and family. Not be going to see our precious little ones casket! We just kept saying how wrong this was...IS. When I walked through the doors of the church, my heart just couldn't take it. I couldn't breathe. I didn't want to have my feet move one in front of the other. I wanted to rewind everything and make everything better, to fix it all and end it right. Yet, there was not a thing I could do. This is our reality...we had to say goodbye again. And as we walked down the aisle with friends and family standing in love and support with us, I saw Zac's precious white casket. It is so engrained in my mind. I wanted to run to it and just pick him up and hold his tiny precious body one more time. I wanted to smell him again and see his eyes again. But as Pastor Shawn so wonderfully put it...I can not bring him back, but one day he will indeed greet me in heaven and we will be together again. I got to spend 7 precious months with him and his brother in my tummy. I got to know his little personality. We got to know and love him in his short life. We got to see him look for us and know that he knew our voices. I am so tired. But when I close my eyes all I see is our Zac staring at me. I see his beautiful, healed body now. I see every dream I ever had for him. I can't stop the tears. I can't make the pain better. I am so confused and so sad. And then I feel so guilty. Guilty because I need to be strong for Evan. And then I feel so frustrated because I want our precious Evan home. I want the doctor's to put in writing a guarantee that Evan will be just fine and will be home as soon as he can. I want someone to promise me that nothing will go wrong for this amazing son of ours. And I know that people say that God will protect him and he will be just fine...but that was said about Zac too. So what do I believe? HOW do I believe? I too believed that Zac would make it. I know that I have the added issue of hormones raging through my body. But while I sit alone in my house in the rocking chair that was meant to snuggle both my boys, and as I sit and pump to be able to nourish beautiful Evan...I feel so strange. Not only are the boys no longer inside of me...but neither of them is home. And here I am pumping food for Evan with no baby in my arms or home. I try to stay focused on Evan and make sure I am in a good place so that I can relax...but my heart aches. I just want him home with us so bad, but I know he is where he has to be. Yesterday was a very long day. And again, the support of all our family and friends was just so precious. I had done a tribute to Zac, and Brett had created the most precious and beautiful slide presentation. We cried and held on to each other as we heard someone else reading my words and thoughts, and then watched the precious moments we had with Zac...able to at least share that much with people so that they too could know our little fighter. Then close to the end of the service I leaned over to Brett and told him I wanted to help him carry out Zac's casket. Brett was going to do this himself and I was just going to walk beside...but in that instant I knew...I had to be a part of this...I had to hold on to our son with my husband once last time. And I am so glad that I did that. It is a moment I will never forget, and one last thing I could do for Zac. I also initially hadn't wanted to stay and greet and thank people after the service. I thought "how can I possibly hear over and over how sorry people are for us?" And again, with only a strength that God could provide, I stayed with Brett. And again, I am glad that I did. It was a small bit of healing to hear the words of people and to hear the "I'm sorry's". I didn't think it would be something I could handle hearing, but it was very much appreciated. My mind reals as I look ahead to the future. I will always miss Zac and there will always be a hole...and I just don't know how to face that. I know I don't need to do that now, but it's even as "simple" as the day we bring Evan home...Zac will not be there...physically anyhow. I know he will be in spirit. It killed me to be away from Evan for so long yesterday!!!!!!!!!!! I just wanted and NEEDED to be with him!!!!!! Once I was able to sit by his bed and talk with him and read him his bedtime story...my heart again was overflowing with love for this amazing little boy we are blessed to call son. But I could feel the terror of my thoughts trying to rip in to the joy. I do not want to be terrified the whole time Evan is getting stronger. I need to find a way to feel the peace and joy of each day with our little one. But again...I am so terrified at the thought of the "what if's". God has given us the strength to face letting Zac go, for getting us through yesterday, and all I can pray now is that He will continue to give us the strength as we face each new day. Even though I am overflowing with love for Evan, I am praying that I will not be overcome with bitterness for having Zac taken so soon. Can anyone tell me how to deal with such bitter-sweet emotions? I don't actually want an answer...I just need to ask that question to myself. Because right now no answer will be the one I want. Everyone...PLEASE continue to pray for little Evan. Our son still needs everyones prayers and thoughts and support. He IS doing amazing, but there is still so much that could go wrong. And please pray for me, that I would not allow the beauty of each day with my son to be ruined by my thoughts and fears. That I would continue to feel the peace that I feel when I am with him. That I would be able to find balance between home and the hospital. I want to be at the hospital from morning to night, but I still have my husband and our dogs and the daily stuff of life to be here for too. I try to hold off going to the hospital until after noon...but then I stay until quite late at night because all I want to do is watch him. Last night they were having trouble with is one IV line. It just didn't want to stay in place and would shut off his antibiotic each time the line would become occluded. I held his leg as they tried all the tricks they could think of. We know there will be a new line when we see him today, I just pray it isn't in his poor little head again. That breaks my heart when I see that. I know how much those IV's hurt, and I just pray that each time he has the IV moved to a new sight that he won't feel the pain. I was so touched yesterday by Evan's nurses. Friday night we had been visiting with him and I told the nurses as we left to please pass on a message to yesterday's day nurse to please give Evan some extra love as this was the day we had to say goodbye to his brother. I also asked them to say happy birthday to him because he turned a week old at 10:52pm on Friday night. Yesterday morning when I finally got to the hospital, those precious nurses from Friday night had made Evan a 1 week old birthday card!! It touched my heart so much! Please keep checking in to the blog. The journey is not over. There is still much to share. But most of all, please continue to keep Evan and Brett and I in your prayers. Our little family will be going through many things in the days and weeks...years ahead, and prayer is what we need to carry on and figure out our beautiful life with our precious son. It is so strange for me to say that...our SON! We never thought that after all these years we would finally be granted the honor of having children...beautiful children. That we'd ever get to say we have sons! It fills my heart with such pride and joy. Please pray that as I deal with the loss of little Zac and also deal with the raging post hormones of pregnancy that I will be able to keep it together for our miracle baby Evan! Finally, please pray for us tomorrow. Zac's burial is tomorrow morning for family only. I can't believe we have to go through yet another day. But as Brett so lovingly realized...tomorrow marks one week since we lost our Zac. The time of the burial is the time we had made the decision to let his body rest in peace and healing. So in some twisted way...the day is somehow symbolic.

Saturday, March 14, 2009

Hours till Zac's funeral...

Oh wow, I just don't know how to even face this day. Up until last night I was able to "pretend" it still wasn't real. Somehow trying to guard myself from the painful reality of today. But last night it hit...today we say our final goodbye to our little one. And I ache beyond any human emotion of pain. We know today will be the hardest day of our lives, but we feel confident that Zac's precious little life will be appreciated by many. He touched many people without ever speaking a word. God used this little fighter boy to spread goodness and hope and faith. And I will cling to that. I cling to God for the strength I will need to enter that church. To face that tiny casket. I want to be angry at God...but I'm not. I can't. He is the one entrusted to loving and caring for Zac now until we can be together again...so I will try to accept that. I spent 10 hours by Evan's side yesterday. I just couldn't be away from him for a moment. The fears of what we have experienced with Zac are starting to over take me with fears that something could happen to Evan. I found myself so on edge yesterday. Normally I don't obsess about watching his monitors, but yesterday I couldn't stop. I would just sit there and stare and this amazing little boy of ours. Begging and pleading for God's protection over his little life. Please pray for me that I will not become paralyzed in fear, but will be able to enjoy watching Evan grow stronger each day. I don't think I will be settled until the day we bring him home. To everyone who has supported me...I thank you. My blogging days are not over...they are yet to continue. The story and the journey are not yet over...just a new chapter. Well, I must go and force myself to prepare for the service. Part of me just wants to remain in this chair and just pretend that this hasn't happened. Pretend that when I go to see Evan today I will see Zac too. Oh how cruel the mind can be. But I will honor Zac today, and I will find the strength to carry on. I have two amazing purposes...my husband, and our son Evan!!

Thursday, March 12, 2009

Please meet our son Evan...

The above is of Brett holding his son for the first time! This was last night!!
On Tuesday I was able to hold Evan for the first time...Kangaroo care! What a moment that was!
Our little angel Evan...boy, does he LOVE to pose!!
This picture was of Evan's first day in the world! He was on a ventilator and oxygen for about 3 days and then was taken off because he was able to breathe all on his own! WOW!!!!
The wonderful nurses enjoy decorating the isolette for the boys! This was Evan's welcome

Allow me to introduce you to our son Zac...

The above is where Zac took his last breath. In my arms and in to heavens hands.
Brett holding his first born son as Zac slowly and peacefully continued to slip away
Removing tubes so that we could be alone with Zac to hold him, love him and be with him
Zac's first day
Mommy and daddy with our little Zac
Hi everyone. The above pictures are of Zac. They aren't going in the proper order...the joy of modern technology, but the explanations are under each. I will post separately pictures of Evan as this won't allow me to post things in order.
The pain of our reality in the loss of Zac is more than I can express. Yet, the love and joy we live in watching Evan growing daily fills our hearts.
This Saturday we are having Zac's funeral. Brett has been unbelievable. Again...my rock. He faced the funeral home and mediated decisions for me keeping me at a safe distance from all that I am sick to face. While he has dealt with most arrangements it has allowed me to be at the hospital with Evan. I just can't leave him alone. I need to be with him, to see and watch with my own eyes how well he is doing.
Brett has created the most precious slide show of Zac's short but full life through our eyes. Each time I watch it...the sobs just can not be controlled.
We welcome you to be a part of Zac's celebration of life. The funeral is at Elim Tabernacle at 11am. A day I never imagined I would be facing.
I believe that God has touched many through our journey, and through the strength that Zac had. I choose to believe that Zac's legacy will be that I have been able to share my faith and my feelings through what we were experiencing together. I choose to believe that God has used Zac's precious life for such amazing purpose. And I pray with all my heart that this will not be forgotten.
The journey is not over. The miracles are not yet closed. We still have our precious Evan in NICU. Our precious Evan that continues the witness of miracles. Today one of my son's amazing nurses confided how Zac and Evan entered her heart. She bought them a bedtime story that she would read to her own children. With tears in her eyes she handed it to me. And we hugged and shed some tears. She was one of Zac's nurses too. And we know how deeply she cared for him! And how much she cares for Evan. It's too sweet...the pride she shows in telling me how absolutely perfect Evan is and how amazingly well he is doing. This precious woman is an angel watching over my Evan, and who watched diligently over our Zac.
I can not thank these precious nurses for their love and care over Zac, and now continuing over our precious Evan! We are blessed, as is our little Evan. I know that Evan is in good hands. Admittedly I'm jealous that I can't be the one pouring all myself out in his care. But that time will come when we finally bring him home!
Our boys have been a witness to many, and Evan continues the legacy of miracles and God's goodness.

Wednesday, March 11, 2009

With great joy...and unbelievable sorrow...

Well, on Friday March 6th at 10:51pm Zac Michael Johnson was born weighing 2lbs 5.5ou and Evan Brett Johnson arrived at 10:52pm weighing 2lbs 9ou. After a sudden turn of events the night of the 6th I began to bleed, and the events of the night spiraled out of our control. Zac was in distress...he knew he had fought as hard as he could...but he needed out. It was an emergency c-section, and I was put completely out. I woke up in agony and terror wondering about our boys. Brett was by my side with pictures to show me our boys alive. But as joyful as the moment was...we knew that Zac was in grave danger. I never stopped hoping and believing that both our boys would come out with flying colors, but sadly this was not meant to be. Zac had to be resusitated and was put on major ventilators and meds of all sorts. His poor body just got worse each day. His blood pressure was a constant concern, his lung development was poor therefore requiring the highest care the medical team could offer. He was put on major medications that with each day instead of helping created his poor little body to become more and more toxic. His poor little veins just couldn't hold liquid they way they should. He wasn't able to pee and when he did it was just proof that his poor body was hurting. To us, he looked perfect in every way. He was so beautiful. So precious. I couldn't stop hoping that somehow the miracles weren't done for him. That somehow he would be the story the NICU would never stop talking about. Sunday morning at 2am Brett and I were awoken by my nurse saying the NICU needed us there immediately...Zac was crashing. It was the second most horrifying moment. When we got to the NICU Zac had restabalized, and I thought...there, you see, it's going to be okay. They had done a chest and stomach xray to see if there had been damage to his lungs or bowels that caused the instant crash...and the xray was fine. So then I thought even more that we would be okay. Their concern though was that maybe he had suffered a brain bleed. We knew if that was the case...we didn't have much hope for the miracle we so desperately desired. The next morning Zac's doctor came to inform us that our worst nightmare had come true. Zac had suffered a catastrophic brain bleed, not only on one side, but both. That it was the most extreme bleed a baby could have. That from that day forward Zac would never be okay or have any type of quality of life. And we had to make a decision...do we keep him hanging on with all these machines and meds that were slowly toxifying him...or do we loving allow him the peace and rest he deserved after 5 weeks of such strength and fight that he provided for his mommy and his brother. We went to see him...and we knew. Yet our hearts broke as his eyes searched for us when he heard our voices. For a split second when I saw his eyes look at me I thought, are you telling me that I need to fight for you...or are you telling your mommy that you did what you could and it was time to let him go be with his brothers in heaven? The answer was clear...yet the most devastating thing imaginable. How do we let our first born son go??? How do we watch his last breaths? But we felt honored in the fact that we were finally able to make a choice for one of our sons...that we could be there with him, together as a family as he left for heaven. We were taken to a private room. They kept one of his ventilators in for a few minutes as we held him together. I was able to dress him and wrap him in a precious blue knit blanket. We were able to hold him together. Then we told them to remove the final tube. And we got to see our son completely. He lost his coloring quickly...but he hung on for about another 1/2 hour. I asked to have him undressed so that he could lay on the skin of my chest. And this is where our precious little fighter boy Zac drew his last breaths. In my arms, on my chest as I thanked him for the amazing fight he put up, and thanked him for what he did for his brother. I told him that not only is he my first born, my fighter boy...but he is my hero and that I would always remember the way that he fought for us, and now I am to honor him by fighting to keep Evan healthy and strong. I can never dishonor what Zac sacrificed. But man, are we angry and hurting. I still believe that God provided amazing miracles. Zac hung on healthy and strong for those crutial 5 weeks. He protected us against infection. He didn't cause me to go in to labor right off the bat, where I could have lost both my boys. He allowed his brother life through his own. And when people congratulate me on Evan...I will say, he's a twin and his brother is a hero. My Zac will never be forgotten. We are struggling as we deal with the intense grief of the loss of Zac, and then we walk back in to that NICU past Zac's area and toward Evan...and our hearts are flooded with love and gratitude. Our son still lives, and is doing amazingly well to the surprise of everyone in the NICU. The very day his brothers ventilator was removed to let him go home, Evan's ventilator and oxygen tubes were removed because he was doing so well that he no longer needs them. He can breath on his own. And I truly believe that Zac gave him what breath he had left. In the worst, yet best day of our lives...our babies did something so entirely different, yet vastly as important. Words can not describe what we are going through. We were to be going home this week to set up both cribs and wash the boys clothes and continue to prepare to have them home. But instead we are faced with packing away one crib, one car seat, one bouncy chair. And we are faced with something we never thought we would...planning Zac's funeral. And it is breaking our hearts. We have shared so many tears together. My husband is a man of pure love and honor and dignity...the way he has carried himself through. Yet we have our many moments of clinging to each other and sobbing in our sorrow. We just don't know what to think. And the hardest part is one moment we are in such sorrow and then the next we are looking at Evan and smiling and feeling such joy and pride. You guys...Evan is truly perfect. I'm not just being a biased mother...he really is. He is so tiny, yet every inch of him is perfect. And honestly, I was actually shocked at how long both he and Zac were! And the feet and hands our boys have is unbelievable! There are so many things that I remain grateful for. And at first I thought God had failed me. That He had played the cruelest trick of all. That there was no way He possibly cared after doing this to us again. After taking a third son from us. We are tired of packing up memories of our sons in boxes. And then I realized...even though I want to blame Him...He hurts with me too. I realized that long ago I had said that I knew our boys were on loan to us...that these precious children were gifts from HIM. I just wish so badly that Zac could have been on loan to us so much longer. But Zac put up such a fight. He was and is a witness to all who knew of him, and he always will be. So many of my doctors and nurses admitted that they were so shocked that he had hung in for so long. And even after his birth he fought for 2 1/2 days. We were given the opportunity to see his eyes, smell him, touch him, love him. And love him we do. We have many pictures of us with him, and we were granted the peace of being with him as he passed. He wasn't with strangers, he was in the arms of the two people who loved him most. I just pray with all my heart that the angels that were there to guide him home were his brothers. And now I chose to believe that my three boys are creating nothing but havoc and commotion in heaven. I often find myself wondering "I wonder what my boys are doing now? I wonder what Zac is telling them? I wonder if they are all cheering on their little brother Evan?" I don't understand why this had to be the ending. I know that one day we will be together with our sons...we will have a full house in heaven. But all that we have to face now. I will one day tell Evan what his brother did for him. I will let him know that this was how much his big brother loved him. That even within me he was watching out for Evan. And from here on he watches us all from heaven. I wonder if Evan will ever feel something different...someone missing. If that twin connection will remain? I agonize at the thought of each birthday and milestone. Being so full of pride and joy for Evan, yet always seeing that missing piece. That precious little boy who gave his life. I see Zac's precious beautiful face whom I saw so much of his daddy in. Then there is the joy of Evan. This little boy who is just going leaps and bounds. Yet there is this terrifying fear that we will get a call saying that Evan has had a bad day. We know it is inevitable. All preemies do hit a bad day. Yet compacted by what we experienced with Zac and all the news we were told...how does ones mind not go balistic? I pray with everything in me that Evan will be spared from any bad days. But as of now, he is doing so well. Not only are the breathing tubes out and the oxygen, but he has been taken off precautionary IV antibiotics. He is being given just all the nutrients, trace minerals, lipids and vitamins that he needs. He is now being fed my breast milk. He is fed through a gavage tube (straight to his tummy). Last night I just HAD to see him. Brett and I have been working on Zac's funeral arrangements and I just had to see Evan to know he was okay. We went up around 11:30 pm and I was able to change his diaper (you'd drop when you saw how itty bitty these diapers are!) and do mouth care (wet q-tip that runs over his lips, gums, cheeks) and Brett was able to hold the tube for his feeding!! Before each feeding they withdraw any remaining milk from his previous feed to see how well he is digesting things...tonight not a drop was withdrawn!! It was really a very special night for us. It is now 2:30am and neither of us can sleep. Nights are once again the enemy. I never knew I'd miss being pregnant as much as I have. As my tummy begins to deflate and get soft again, I ache. I miss feeling the boys moving inside. I miss the dreaming of the weeks ahead. I'm angry that this was stolen from me. Yet I watch Evan and I see that he is just how he was inside of me...very active...loves to stretch and punch and kick. And boy oh boy, does our son have attitude! He gets SO mad at the nurses when they disturb his sleep, or change his diaper, or have to do an IV. The other night I actually heard him crying in anger!! It was the most precious sound ever. I feel amazing love and pride for him. I feel at peace when I am with him. I know that he needs all of me right now...and I have that to give. I have to honor his brother by keeping it together to be the mommy Evan needs. Life will never be the same. There will always be a son missing...but we will pour ourselves in to Evan. We will never forget the gift we have been given. I really should sign this off now. In part of being there for Evan it requires that I actually sleep. I've been exhausted. Tomorrow...I mean later this morning...we will be meeting with the funeral home to make arrangements for this weekend. I don't know how we are going to do this. I am being released tomorrow from the hospital. Almost 6 weeks later. A part of me is absolutely paralyzed by fear to go home. I don't want to face it. And I don't want to be apart from Evan. I know that my days will be lived out here. Not a day or moment will go by where I am not here. So my blogs my not be quit so often...but now I have to focus on Evan. I will continue to share Evan's journey while in NICU, and anxiously await the day he will be coming home with us. I thank each of you for your thoughts and prayers as you have journied through this with me. The journey isn't over, and I look forward to posting a picture of our precious sons. But that might be a few days. Please continue to pray ferverently for Evan. That he will be protected from germs that would cause a set back or illness. That he will be the exception to the rule and NOT have any set backs. For those of you who question faith and who may have been touched through all the good you have witnessed...don't ever forget that. God is still a good God. We didn't get the answer that WE wanted...but there is a reason...somehow. God is not a mean God (even though that's how we feel right now in all honesty), but He and I have been through too much for me to give up now. And I still have a precious little boy to raise knowing about God and His love for us all. God is no stranger to pain. He watched His own son be nailed upon a cross to sacrifice His love for our freedom...and He has given us all new life and new hope through that. His death and then resurrection allows me to know without a doubt that we will be together with our children for all of eternity one day. That Monday was not a day where Zac just died with no reason, but a day where we knew that we would hold him again. And I don't doubt that for a moment. I know that he is in a better place. That had we been so selfish as to try to get him to hold out longer we would have just caused him more pain. We chose to give his short precious life dignity. And we will continue to do so in how we raise our little Evan. I wish this ending could have been picture perfect, but in it's own sad way...it has. We will never forget our Zac. He will always be our first born son. And we couldn't be prouder of him for all he did so that his precious brother could at least have a chance! Rest well my little fighter boy. I loved you more than I ever thought possible...and always will. Zac...remembered by God. March 6/09 to March 9/09. Your mommy and daddy are so proud of you, and you are always with us.

Saturday, March 7, 2009

Our miracles have arrived...

Well everyone, here is the big announcement...our sons were born Friday, March 6. Zac was born first at 10:51pm, and Evan was born at 10:52pm. Zac is 2lb 5ou and 15 3/4 inches long and Evan 2lb 9ou and 15 inches long. How it all happened was very scary... I had gone home on a day pass Friday. I slept for hours, and then finally decided to get up and have a shower before heading back to the hospital. Well, I went to the bathroom and found I was bleeding rather badly. We got in the car in record time and I had called ahead first to my nurses to let them know what was happening and to be ready for me. When we got to the hospital I was immediately hooked up to the fetal monitor. Heart rates were good. I was checked and found to be 1-2 cm dialated and contracting pretty regularly. The res OB did an ultra sound and things seemed ok. But then when we got down to the assessment ward things changed quickly and rapidly. Zac's heart rate went really high and then just as quickly dropped way too low. The OB on call instantly had the OR open and prepare for me...we were going in. There was no time to really prep me. It turned in to an emergency c-section and our little Zac was in trouble. I've never been so terrified in my life. I was put right out as there was no time to do the epidural. So I went to sleep scared beyond belief and then waking up just bawling and bawling. I was in quite a bit of pain too! I had been given Oxytocin to contract my uterus so each time I'd get a contraction I felt like I was being torn apart. So the wonderful Morphine began. It took a while to feel managaged. I did not get to see our sons last night. Brett did though. So we have lots of pictures. This morning my parents had come to help clear out my room and prepare to move me. I slept for a few hours throughout the night but was still exhausted. This morning my nurse came in to the room and told Brett and I that the NICU dept said we should get down there. I lost it immediately. I knew this was not good news. And was beyond terrified. I figured we were going to be told that we needed to say goodbye. But as we got down there, yes, Zac was struggling, but eventually pulled up a bit. Evan has been doing great. Our boys have stolen the show with the NICU nurses!! Brett and I were just down in NICU and Evan is doing really well. We went over to visit with Zac and were told that he is struggling with his blood pressure. He was trying to open his eyes as we talked with him!! Amazing!! But for the most part he just pretty much lays there. He has been through SOOOOO much!! He is truly a fighter. I ask everyone to PLEASE pray for our little guys!!!!! Zac especially!! He is fighting so hard, and I will not let him go without the biggest fight of my life ever!! We are exhausted...me especially. It feels so wierd to be laying here in bed and knowing that my boys are no longer within me, but upstairs. The NICU staff is amazing! I've really appreciated that!! I am beyond tired through. But fight sleep. Although tonight I don't think it will happen!! Anyhow, it may be quiet here for a little while as I try to regain some strength and spend time with our little ones. God, you have provided such amazing and precious miracles for up up to this point. And I pray with everything in me to spare both our sons any complications. I pray for little Zac and his precious little lungs, I pray that his blood pressure will not be an issue tomorrow. I pray for continued miracles to happen though this little boys life...our son. I pray that he will just really fight hard to pull through and that through all of this the NICU nurses and doctors will just be blown away. I thank you for the people whom you have in charge of them! Help Brett and I to rest...me especially. I pray that my incision will become tolerable without pain. That I won't have to rely on the morphine. Well everyone, I am absolutely beat...so I am going to sign off. We will try to post a couple of pictures of the boys. They are toooooo cute!!!

Thursday, March 5, 2009

Thur, Mar 5 - Another miracle milestone!

Well here we are at 28 weeks!!! Tomorrow being 5 weeks since being admitted. 5 weeks of wondering if we'd ever make it to this point and if our boys would hang in. And here we are...witnessing a miracle that we never thought. I've questioned miracles for a long time. Wondered if they really still existed and why it seemed so hard to see them. You hear stories of miracles in others lives and wonder will you ever witness one in your own. I've seen miracles in others lives. No matter what...how can I dismiss miracles now?! I'm carrying two of them. I admit that in my weak moments I begin to feel bits of wonder and fear...I guess that's normal. With every day and week that passes we are that much closer to delivering these little ones and then yes, a whole other world of wonder and nerves will (and are) enter in to our minds and lives. We know whom we are to rely on...God has provided in ways our human minds never thought imaginable...so He will provide when these little angels enter our lives and we see them for the first time. I still pray diligently that their delivery will bring about new and wonderful miracles to us as parents and to our medical team. I know that my heart prays for more time safely carrying these little ones, but I also know that when God knows these little ones are to appear He will let us know. And then the human part of me gets nervous...what to expect, and how will that sign appear. The human part of me is nervous about heading in to delivery with these little ones...in a variety of ways. So in the mean time I'm praying for peace of mind and just to continue to trust that the outcome will be a positive one. I'm grateful that we got to this point to be able to do the second and final round of steroid shots. We know that this will help the boys all the more. I'm looking forward to hearing their little heart beats again today. I guess the one upside to being here...I get to hear them 3 times a day. And it's the best sound ever. Yesterday I had gone home for a while later in the day. It is so nice to get home and to hang out...but man oh man was I tired by the time I got back to the hospital. It was an early night...and it was nice to just lay in bed. Even though it wasn't my own. I've become an early riser...between 4-5am. This morning I was up by 5:15am and no luck of getting back to sleep. It's okay though...practicing for nights/mornings to come when these little ones can finally come home with us. Well, please continue to pray for the safety of these precious little boys...and for mine during the c-section whenever that will happen. For a speedy recovery for all three of us and that the boys will shock the socks off us all! Please pray that I will feel peace of mind and the most unbelievable sense of calm. For those of you who know me well...we know that I am a worrier. And I just don't want that to be the focus of my emotions. Pray for Brett and I as we prepare for the next portion of our journey. That we will just really have the strength and wisdom for the bumps that MAY appear. It has been a long road for us...and I couldn't want to walk it with anyone other than Brett. The constant strength in my life. I am truly blessed by this man in my life, and will never take all that he is for granted. I am a very lucky and blessed person and so grateful that God knew we'd be the right fit for each other! He has been so strong with carrying on with his business, keeping up with our home, bouncing back and forth from here and home, and continually giving me the support and love and encouragement that he knows I need. He is amazingly awesome!! Well, I'm going to sign off for a while and hopefully drift off to sleep for a bit. I continue to thank you all for your support and prayers through this journey. I pray that we will one day soon be announcing wonderful news that is laced with more positive news than bumpy news. I'm sure there will be a lag in my communication after delivery...so know that I will update as soon as I have the strength and time!

Tuesday, March 3, 2009

Mar 3'09 - Oh what a day!!!

Today was looooooong! Let me walk you through step by step...get ready...it's long winded! Hmmmm, aren't all my posts! hee hee hee. Well, the day started with me waking up at 4am as usual. I tried to go back to sleep to extend when I'd get my first of my second steroid shots. I now know that I get a second shot 24 hours after the first...so I TRIED not to wake up too early in case I could actually sleep a bit longer tomorrow morning. Well...I think I dozed off until about 4:45 and then just watched TV until 5:30 and thought OH HECK, forget it! So I buzzed for my nurse. One came in and asked if I was ok and I just said "I'm fine...but I'm ready for my shot!" She just started laughing and said "you are too cute!" My other nurse came in and she was laughing!! I told her I was actually up at 4am but decided to hold off. She just said "oh my dear...you could have buzzed!" They know how pumped I get for that shot knowing it is helping my boys even more!! So, we did the shot. My nurse is always impressed that I don't even flinch because it is a bit of a stinger...but I just don't care! So....that was a good start to an early morning. THEN Dr. D came in for rounds and said "how's my favorite early morning rising patient!" I think that I had the beginnings of Roid Rage (NO JOKE) because I was instantly annoyed with him! Then he said "I have to admit that I'm REALLY surprised that you are have made it this long and still hanging in! All this time is especially good for the baby whose membranes aren't ruptured." And there is was...the infamous just HAS to ruin a good thing!!!! I instantly switched off and got SOOOOO angry and wanted to just kick his butt! WHY does he have to say something like that. WHY did he have to discredit how amazing this time has been for my little fighter boy too!! He is still here, he is still fighting, he is still growing strong...so that comment just put me in to mama bear mode!! I was ready to attack!! I just shut down and didn't say anything further. And then I sat there reminding myself to brush it off...that MY OB would be the one to give me the real deal and she is the one that I rely on!! And in true wonderful Dr. Martel style...when she came in and how positive she was and happy about the steroid shots and my ultra sound that was scheduled for today...my heart started to feel a little less stomped on. She was really looking forward to seeing how much the boys have gained in the past two weeks. And that was it!!! No doom and gloom! No "Oh your poor twin...we just don't know". This is a truly classy OB. I am sooooooooooooooooooooooooo blessed to have her as my doctor, and she has been such an amazing angel and support to me. OK, on to next. THEN I had a nursing student come in and do my vitals. Turns out today is her first day. She had just been in my neighbors room (who is also expecting twins). OK, temperature and blood pressure no problem. I warned her that my boys don't particularly like the doppler and are infamous for dodging after a second or two. I showed her exactly where she would find little fighter boys heart rate and showed her a general area that our content boy tends to hang out at...but warned her that it's not always the case...he has been known to flip sides of move upwards. She decided to start with him thinking it would be easiest. Well...she searched and searched...and I kept telling her she was searching too low (by his HEAD) and to far to my side. So then she figured she'd go to fighter boy...and I pointed to exactly where she would find him...and she did. So she went back to content boy. She searched for about 20 minutes (I was not concerned at all because I knew she wasn't going in the right spots). I felt bad for her because she admitted she was nervous, and I was annoyed that my nurse would have just left her on her own with TWINS! And this nurse knows my boys can be escape artists and a run for their money some times. So the student went to find my nurse for help and couldn't find her, so came back and searched for about another 10 minutes and FINALLY got him! It was kinda funny...but again...the roid rage was occuring and I was slowly losing my patients. Anyhow, she left. I had my "breakfast" which is a JOKE for a pregnant twin mommy!!! But side note aside, lets carry on. I then went for my ultra sound. Another very annoying appointment. One of the OB residents is now on a month learning the ultra sounds and today was HER first day doing this. The radiologist left her on her own to do a "couple things"...I was laying there on my back for 1/2 an hour with the OB just basically playing around. Do they not realize how hard it is for a pregnant woman to be laying on her back for that long! Then the radiologist came in and took over. Well...my ultra sound was a good 45 minutes from start to finish. I was NOT happy! My poor back was in agony and she had to really REEF on a few areas to try to get measurements from fighter boy (because he is squished in there, so it made it a bit tricky, PLUS she was teaching the res as she went too! UGH!). At one point fighter boy was sleeping so he wasn't moving too much. NOW, because fighter boy has so little room due to fluid his movements don't get to be as spastic as his brothers. The lady had to use this insturment that sends a little vibration and annoying noice to the baby to try to get him to move...and he did...but they couldn't include the initial movement because it was a "caused" movement. So then she had me flip to my left side in a very uncomfortably contorted way. And THEN she got me to move to my back again and lowered the head portion of the bed in the MOST uncomfortable way. I could barely breathe!!!! FINALLY she got the movements she wanted. I had SOOOOOOOOOOOOOOO much gel on me it was DISGUSTING!!! By the time I was done it was down my pants and down my legs!!!! So I went for a shower instantly. Then shortly after that I went for my NST test. I don't mind those at all. At least I can relax. A couple small and short braxton hicks, but nothing major. The boys did wonderfully once again! My NST nurse said after "I wonder what his fluid level was today from last ultra sound!" So she let me look at the report (I love her for that because I was concerned). His fluid has dropped again...so my heart kind of dropped. The radiologist hadn't mentioned anything but said that someone would stop by to give me the full report. My mom had been here with me from about 8:30 am and I am SOOOOOOO thankful that she was. I just wouldn't have been able to get through today without her and her support!! So this whole day I just felt really disconnected, guarded, and even angry. Lets just say at lunch time my mom and I looked at what I was served and I was so annoyed that I threw one of the vegetables (dry gross celery) at the wall. I was just annoyed by the disgusting food they serve us!! So we went up to the 5th floor cafeteria for lunch when my dad arrived. It was just a really long, emotional day. And then to wait to hear the results of my ultra sound was agonizing. But I was more than thrilled to hear that Dr. Martel had come back to the hospital and would be stopping in to go over things with me!!!!! PHEW!!!!!!! I'm soooooooo glad to have heard from her, because tomorrow morning all I'll say to Dr. D is that Dr. Martel was in and told me everything and is more than happy where things are at...so therefore I am happy and don't want to hear anything more about it!! HA HA on him!! So the good news of the report... Fighter boy is 2lb 1ou now...he has gained 6ou in the past 2 weeks. AND she said that that is the minimum he weighs...because it was trickier to get some of his measurements he could be a bit more. BUT she said that him being smaller is to be expected and she is really not concerned because he IS gaining. I mentioned I knew that his fluid level had dropped and she said "yes, it's lower, but that can change from minute to minute...so really, I'm not terribly concerned about his fluid level either!! You could move your arm and it would allow the pockets of fluid to change and look larger too...so it's not an exact science." I was SOOOOOO relieved to hear that, and so thrilled to hear how positive and happy she was with things!!! She feels like we are really in a good place!! Content boy is now 2lbs 9ou...he has gained 9ou in 2 weeks. Again, she was thrilled! So bottom line...the report was positive and the outlook remains good!! Finally the roid rage symptoms seemed to lessen and I felt my guard and disconnectedness slowly melting away. It really was a tough day emotionally...and physically. But God has once again carried us through and has proven His love and support to us. Honestly...I could never get through a day of this without Him. I'm once again blown away and humbled to receive another good report and another good day with our boys growing strong. I am continually humbled and grateful for the continuous prayers from friends and family...for the strength they have provided to us. Thank you all!! Well, to end the day with some cheesy humor I am watching the 2nd special of the Bachelor Finale. Good grief!!!! But it has given some much needed relief. Brett was at the Blades game tonight, so my dad brought Vern's pizza for us to share (the LIGHT ones...I can't stand the regular!) since Brett got to have a night out. And now Brett is on his way for a visit. He gave me a surprise visit this afternoon...and that meant the world to me!! But I always look forward to the evening visit! Can't sleep if I don't see him (well...don't really sleep anyhow, but it's better having been able to have spent some time with him!). Well...that's my update for the day. "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41: 10 "God's voice thunders in marvelous ways; he does great things beyond our understanding." Job 37:5