Little Evan moving forward!!

Well yesterday was pretty fun! I got to the hospital and was informed of three new changes!! 1) Evan is able to try to start nursing! 2) Evan is ready to have his isolette top removed! 3) Evan is ready to start demand feeding! WOWZERS! You know these things are eventually going to happen, but when you hear those beautiful words of moving forward...it's crazy! I find that I'm so "used" to where we are at right now that these new developments threw me for a loop...even though it was a wonderful loop! I was so excited and so proud of Evan!! Evan has been bottle feeding exclusively for a few days now and does amazing. So yesterday we attempted nursing a couple of times which was kind of funny for both of us. He was tired out at the two feeds we tried at, so he didn't have the greatest of "oomph". But it was still an amazing bonding experience! And I think once we get the hang of it and Evan figures out the new feeding method...I will love it. Because Evan is ready for so many new changes they decided to introduce the changes slowly so it didn't stress him out by doing all three at once. I chose to start with nursing. And this morning when I spoke to his night nurse she said she was going to let the doctor know on rounds that she thinks he's ready to demand feed. That means his current schedule gets thrown out the window, and I am on call for when he is ready to eat. They will call me when he begins to wake up and stir and while I'm on my way to the hospital they will begin doing his vitals. This won't be a problem during the day since I'm always there, but it will be interesting during the night! But I'm pumped! I'm kinda hoping that when I arrive at the hospital today that I see his isolette top off too :) But we'll see. I won't be disappointed as everything is about what Evan is ready for. Not me! :) I'm feeling much better from my infection. Still a bit tender, but I think now it's that my stomach is trying to relearn what it was before being pregnant. I admit that I feel frustrated because I want to be able to start working out more so I can begin to look a bit more my old self. Keep praying for Evan as he begins his new changes!! Brett was away over the weekend and I have to admit that I kinda enjoyed the alone nights with just me and Evan! The nights are just so much more calm and quiet in the unit, and our snuggle times were precious. I would feed Evan his bottle, the rest him on my chest as he slept peacefully and would read him one of our night time books. Ahhhhhh, it was great. But is was also WONDERFUL to have Brett back home! And even Evan perked up when he heard Brett's voice. It was cool! On Saturday night I had a couple of the nurses tell me "it won't be much longer!" One nurse in particular said "Heather, it's not as far away as you might think! But I'm going to miss you!" I thought that was sweet. You definitely form relationships and friendships with these amazing people. And I really will miss seeing some of these angels on a daily basis. But I won't miss the hospital! This morning I was sitting in my glider chair and I suddenly I felt nervous about Evan coming home! With these new changes we know we are headed in the right direction. But at the hospital Evan has the very best care and is watched day and night...and if anything should occur they are right there ready for it. I don't think I'll sleep a wink for...oooooooh, until he's at least 5 years old! hee hee hee. And I've suddenly realized just how much I need to get in gear for Evan's home coming!! If I keep living as we have been living, nothing will be ready! So it's soon time to book the cleaner for our furnace and vents, and clean the carpet in Evan's room and our room! And then begins the big clean! WOW!!!!!! Is this really happening?! Is it okay to start feeling excited?! It feels strange to feel excitement. Well, I should go. Soon time to go see my little man!

Even little hearts can be sensitive and hurt...

I am blown away beyond words, and tears have just been flowing! I was talking to my mom this morning. She and my dad had been babysitting my niece and nephew last night. For those of you who don't know my nephew...he is one smart kid at the age of 3! He has always been a very smart boy. And I could brag about him and my niece for hours...but my mom said that she had put on the instrumental music chanel on the TV. Finley had been playing in a room with my dad and my mom said he came out and asked why there was sad music on the TV. My mom tried to explain that it's not sad, it's just relaxing. He then proceeded to tell her "I don't like sad music. I don't like that Zac died." Ummmm, the tears are spilling all over again. My nephew, at the tender age of three knows that his cousin died. My sweet nephew holds that in his heart! My heart aches for him because who ever knew a young child would understand the depth of what happened. Yesterday I felt so angry for Evan...for what and who Evan lost. His brother. His partner. His friend. And I can never fix it. But now I feel angry for my precious nephew who knows what has happened and feels sad for that too! He associates that style of music as sad music, and associates it to Zac. And it makes my heart ache...yet touches my heart too knowing that even this small boy remembers a cousin he never got to meet. I am so grateful for Evan. We are truly blessed by him. But I am also so angry for the three children we have lost. I wanted to believe that God would spare Zac's life...and honestly my head has been spinning a lot lately trying to "understand" why He wouldn't do it. And ya, I guess I hold anger inside. Not bitterness...just understandable anger. Yet knowing I could have lost my precious Evan through this too...how can I not also feel gratitude? I hate this tug-of-war. On a more positive note... Evan is still making strides. He is bottling almost all his feeds now. He regained some weight last night so that was good news! His nurse also started to lower the temperature of his isolette. She was very impressed and said that normally babies his size need to be bundled in order to maintain their body temperature when they start lowering the isolette...but Evan hasn't flinched! He is holding his temp without having to be bundled!!! So last night they lowered it a bit more!! This is in an attempt to get him in to an open basinet in the next few days!!!!! What a day that will be to see him in an open basinet! It excites me! It's tons of fun now that he is bottling because we get to hold him more, and snuggle with him more too!! It has really made me REALLY start to feel like more of his mom!! It's wonderful! Well, I'm going to go get ready. I'm off to get some more of Evan's things before I head to the hospital for another precious day with my son! Please continue to pray that Evan will make forward strides and that no set backs will occur!!! Pray that he will continue to do well with his feeds, and with the new change to get him in to a basinet. And please pray for continued strength and energy for me! I would appreciate that! And to my precious nephew Fin...your auntie loves you bunches and bunches and bunches! Bless your precious sweet sensitive heart my boy!!

More pics and updates

My latest "digs". Looking pretty sweet in navy blue!!!!

My nightly story time with mom and dad.

Contemplative Evan

Me and my daddy!!

Daddy's turn to feed me!

Just a few more pics from the past couple days. Evan has been doing really really good with his bottle feeds. He generally drinks the full amount...unless he's absolutely exhausted, then they will gavage the rest. And some of the feeds throughout the night they will gavage if he is sound asleep to give him a break. It's hard work for little guys!!

It's getting to be so much fun though because now with bottling he is out of the isolette with us and then we get more snuggle time after his feed!!! So yesterday I went earlier so I was there for his noon feed, and then his 3pm feed...so we got lots of good snuggle time.

Then last night after we got home I forgot to get containers for storing my milk so I haaaaad to go back to the hospital. I got there just before midnight which happens to be one of his feed times, so I stayed and did his feed and got another 1/2 hour snuggle!!! It was the perfect way to end the night!

Evan lost a little weight yesterday (he's still in the 4lb 6ou range), but I guess that's common when they start bottling because it takes so much energy and some inevitably spurts from their mouths. So I just pray that he gets a good gain here soon! Don't want him backsliding!!

But otherwise he is doing really well!!

My infection seems to be easing up. I'm still on antibiotics until tomorrow, but I'm feeling much better.

Well I should run. Soon time to start getting ready to head to see the little man!

Thank you for your continued prayers!!!!!

OH WHAT A DAY!!!!!

Just after lunch today! My first day in a sleeper!!! My isolette temperature is down! I was enjoying a nice big yawn!!!

My first bottle feed with mom today!!!! But second bottle feed of the day!

Mommy giving me my bottle!!!

OK, so as you can see, we had a BIG day today!!!!!!!!!!!!!! I went this morning for rounds and got there early so I could hang out with Evan...but these changes hadn't occured yet!

When they got to Evan it was after 9am and his nurse was giving the breakdown of where things were at with Evan. Then she said "I bottle fed him this morning at 9am and he took 17mls of the 25mls with no problems". My mouth DROPPED and tears ran down my face...GOOD tears, and goose bumps sprang up. That meant that Evan had his first ever bottle while I was there, but I didn't get to see it. That's okay...I was just SO HAPPY to hear that this was happening!

They all laughed at me because I was all weepy. But they get it!

THEN after I returned after lunch I walked in to Evan's isolette and just about dropped once again! Evan was in a sleeper for the first time ever!!!!!!!!!!!!!!!!!!!!!! His nurse started laughing and said "get some kleenex for Heather". I was almost out of my skin with joy!!!! This means Evan's isolette temperature is down now and the sleeper is step towards him getting in to an open isolette!! WOW, when things happen they happen pretty fast!! I couldn't believe all that was happening!

Then for Evan's 3pm feed I got to give him his bottle!!!!!! I had been holding him since about 1:30pm and by 2:40pm he was rooting around and fussing because he was hungry. Of course when it was finally time to eat he was out of it again! But we tried. He took 10mls of the 25mls. This is apparently a normal situation with them beginning to bottle feed. He is still given the remainder of his feeds by gavage, and not every feed will be bottle right off the bat. They can tire out. So they will alternate for the first while. This is all a beginning step to getting him to exclusive bottle and then breast feeding. CRAZY!!!!!

I'm looking forward to Brett coming tonight to see his son!!! I THINK he might be able to try bottle feed him for his 9pm feed. I believe that was mine and the nurses goal.

Again...another bitter-sweet day. As much as I was soaring from the joy...there was the now familiar twinge of sorrow missing our little Zac and what his milestones SHOULD have been! It breaks my heart. It will always break my heart.

"The Lord is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18

I appreciate this verse, but I struggle with why we had to be so crushed in the loss of Zac. What was the purpose? OK, I get that my blog has been a witness...and I hope it will continue to be. And Zac's fight was a witness. But why couldn't he have proven to be so much more of a miracle than he already was/is?! Why did his witness have to include his life being cut so short so soon? I just don't get it. But, I just pray with all my heart that his life truly WAS and that our story will CONTINUE to be a witness. I am bruised and weak in faith/spirit right now...but I am not shutting God out. No matter what...He is good.

Sat. Apr 18 - Update

Sorry I've been away for a few days. I've been pretty run down and as it turns out I have developed an infection from my surgery!! Yesterday I was at my 6 week postpartum appointment and yuppers...it is figured that there is an infection. Fortunately my OB didn't think it was severe enough to be admitted for IV antibiotics, so I was put on a weeks worth of oral antibiotics. So here's hoping it takes care of whatever was brewing! I KNEW something was up this past week. I was feeling fine, but the the past week my tummy was in a lot of agony and I was having to get up from sitting the way I did after my c-section...and I was just feeling really "off". Yesterday before I went to my appointment I called my mom in tears asking her to go be with Evan while I was at the doctors, and that I wasn't sure if I was going to come/stay at the hospital. That's how icky I was feeling. I did stop by briefly, and was over-joyed to hear how well Evan was doing, and to see him even for a little while. Then I came home and slept and slept. It was great. But before I fell asleep I cried and cried and cried. I was so sad not to be with Evan as I usually am. Plus...I had my first awkward moment about Zac. My doctor's nurse congratulated me on my two sons...not knowing that Zac had passed away. So as I was standing on the scale telling her Zac had passed three days after his birth...I burst in to tears. And it was just down hill from there. And when I got home I just felt so overwhelmed, and so sad and angry again. Don't get me wrong...every minute of my days aren't filled with those emotions, but it's hard not to miss my son. I need my moments of grieving so that I can pull myself together again to feel the joy that I feel with Evan and Brett. Now, update with Evan. On the 16th we had a wonderful hour of snuggling...the BEST birthday present I could have gotten that day!! We had such a nice time together, and my heart was overflowing! Evan's tummy is MUCH better!!!! I think we are on our way up! He is now up to 17mls of Neocate formula, and they keep adding another ml every 6 hours. They've also lowered the temp. in his isolette again today and he is doing great for maintaining his body temp!! AND...the doctor has recommended stopping his caffeine and seeing how he does with that!!!! His brady's and apnea's are becoming less and less...so the hope now is that he will begin to sort things out without needing the caffeine or intervention from the nurses or me! He's still little, and it still may take time with the brady's/apnea's...so we won't be devastated if he needs his caffeine longer or continues to have the odd brady/apnea...we expect that. Last night I took another one of Evan's preemie onesies just to lay it on him...and sure enough...he would fit these already!! I hope he gets SOME use out of the preemie outfits he has received!! I'm sure he will for a little while. AND, as of last night Evan weighed 4lbs 6ou!!! He is aaaaalmost double his birth weight!! COOL!!! I have to admit that I haven't listened to my praise and worship music since the boys were born. I felt betrayed, hurt and bruised, and I know that the praise and worship music moves my soul in a way that I didn't want to feel just yet. But I received a wonderful gift the other day...a praise and worship CD that I hadn't heart before. My heart was pounding as I put it in my car CD player. And then as I listened...I felt soooooo many emotions, but I also felt some healing beginning in my soul. All the songs have special meaning to them, but one in particular hit home to me personally and I want to share these words with you all... Whole World In His Hands - Christy Nockels When all around is fading / And nothing seems to last / When each day is filled with sorrow / Still I know with all my heart // He's got the whole world in His hands / He's got the whole world in His hands / I fear no evil / For You are with me / Strong to deliver / Mighty to save / He's got the whole world in HIs hands // When I walk through fire / I will not be burned / When the waves come crashing around me / Still I know with all my heart // He's got the whole world in His hands / He's got the whole world in His hands / I fear no evil / For You are with me / Strong to deliver / Mighty to save / He's got the whole world in His hands This reminded me of a verse that I had been led to when I learned I was pregnant with Zac and Evan. Psalm 66:12 ...we went through fire and water, but You brought us to a place of abundance. I kept thinking this was a guarantee that NOTHING would go wrong. That our boys would be safe and that we would have abundant joy. After losing Zac...I've questioned MANY of the verses I was led to during the weeks Zac fought to hang on. But I am slowly coming back to the truth that nothing is a guarantee. Zac was God's child first...God blessed us by loaning him to us. That's the was I see it. Zac will always be treasured in my heart as my first born son...a miracle beyond miracles. A fighter that didn't give up! Again I was reminded that I need to remember his fighting spirit and continue that spirit within myself. And now as I watch Evan continue to grow in leaps and bounds, and as I awe over the amazing beauty of this precious child who is OUR SON...I am blown away by such a feeling of blessing. Zac was not a lone fighter...Evan fought along side his big brother. They worked together to keep each other and me safe. And I owe it to both my sons to continue to live strong in life and in faith! Evan will learn of God and all His goodness and will learn that one day he too will meet his brother in heaven. I am forever grateful for Evan, and so blessed beyond blessed by his precious life. I look forward to the day he comes HOME WITH us!! We anticipate that day with eagerness. Please pray that my infection will clear completely and quickly, and that I will not have any adverse reactions to the medication. Please continue to pray for Evan as they test him out on taking him off his caffeine. That he will accept this new change and that he will not have an increase in Brady's or Apnea's. Continue to pray that his tummy continues to do well with his feeds and we don't experience another set back. That he will do well as they continue to decrease his isolette temperature and inch our way to seeing our son in an actual sleeper and then to an open isolette!!!! Well, I should get going. Things to do before we head back to the hospital. I am going tonight with Brett. Brett had an AWESOME hour and a half snuggle with his little boy...and Evan LOVED it!!!!!!!! He loves snuggling with daddy!!!!!

April 15th - prayer request for Evan...and me

OK, so Evan had a really good day yesterday, which is always nice. And last night he had some awake time while we were there again. And that's always nice for Brett too! I spoke to Evan's nurse this morning and she said that he is still aspirating half his feeds, so they push that back down and just give him half of the new feed to make up the 7mls. But he also had 3 brady's last night too. She said he was quiet this morning. Now...he's not generally a screamer...just when he's really ticked off. But he does like to wiggle around quite a bit. This nurse has never been with Evan before, so it could just be that she isn't familiar with him. But our favorite nurse Lori was on last night too, so I'm sure she would have checked up on him time to time. Of course, this gets me all uptight about his feeds. He is on a gentle formula for sensitive tummies, so I'm not sure what the next step will be. Brett is going to go on rounds this morning. We both have appointments at 10am, but I also have to fit in a pump session in there, otherwise I would be at the hospital....ooooooooh, about RIGHT NOW! I want to be with Evan and know that he is fine...just wanting to be a bit lazy with his feeds. Yesterday Evan's actual doctor checked him out, and the report was that Dr. Bingham was more than happy with how Evan was looking and said his tummy felt and sounded great. So we'll see what he says this morning. Hopefully it is just that Evan needs a bit more time. Please pray that everything will be just fine with today's report. Pray that Evan's tummy will begin to sort itself out with his feeds and that he will be able to continue to keep increasing and doing his awesome weight gain. Pray that his intestines will remain calm and healthy and no more issues with them! I know to some what I am about to say will sounds completely ridiculous...but to me it isn't. Last night Brett and I went and purchased Evan's new stroller and car seat, and the matress for his crib. When I heard this mornings report from Evan's nurse it made me feel that every time I finally get to a place where I feel really positive and "safe" to proceed with preparing for Evan, something bad always happens. That's how I felt when we finally began to prepare for Evan and Zac...excited...and then bad things happened. I feel like I "jinx" things. Like I will never get to truly feel excited and be able to prepare without feeling terrified of what might happen. And it makes me really angry and frustrated. The thing is...I don't even know if there even IS an issue with Evan...I'm going by the tone of a nurses voice who has never had Evan before. So I know I need to try to remain calm until I hear the report from Brett from the actual doctor. It could be nothing at all, but still...I can't help how I feel. We have felt so screwed over so many times that it's hard not to feel cautious and suspicious. And I hate that. The other night Brett and I went for dinner and watched as couples with young children or babies and we just looked at each other and said "when will WE ever experience NORMAL?!" We both felt really frustrated and cheated. I know that we all have our crosses to bare. No ones life is perfect, and any who says their life IS perfect is either in denial or lying! Life can't possibly be perfect. But I guess it's all in how a person deals with the crummy stuff that's dumped on them. We just feel that we have way too much crummy stuff to get past. We just want for ONCE something to happen normally without fear and frustration. I don't want Evan to have to struggle through his days...I want him to sail through the next weeks and begin to really enjoy life with his mommy and daddy. And I'm sick and tired of living with this underlying fear. I am just tired in general. Yesterday I felt SO "up" and happy because I had such a good day with Evan. Today I feel...tired. And I won't feel settled until after rounds and know that Brett has normal news to report. So, we've covered my prayer request for Evan: settled tummy, settled intestines and increased feeds. Now comes my prayer request for myself. As you see above, I'm struggling today. I'm sick and tired of the emotional roller coaster. Sick and tired of living life with trying to be positive, yet always the underlying fears...it is getting to me. Pray that I would stop feeling like I'm "jinxing" my son and our happiness by actually allowing myself to continue to prepare for Evan's homecoming. I've also been feeling a bit off physically around one area of where my incision from my c-section was. I noticed that there is still one knot from my stitches and it looks agitated, but I feel like I've pulled something inside. And to add insult to injury...it is in the area of where Zac's head was. I have my 6wk post op with my OB tomorrow, so we'll see what she says. Well, there it is. I'm having an off day in general this morning. And I want to be able to start having more good days like yesterday! Will that ever happen? I'm sure it will...but WHEN?? I read this verse after I posted this, and just had to add it... “Every valley shall be lifted and filled up, and every mountain and hill shall be made low; and the crooked and uneven shall be made straight and level, and the rough places a plain” Isaiah 40:4 This is my prayer...that I would believe what this verse is saying!

Can't get enough

Snuggles with daddy! Ohhhhhh so cozy!!

Evan was LOVING his daddy time!!!!!

Supper time!!! Daddy doing feed and snuggles!

Watching daddy while he talked with Evan!!!!

Sorry, I just had to post more pics. After 8 painful years...it's a dream come true to be able to post pictures of my own son!

I just did the wildest thing...I just put in a load of laundry of EVAN'S clothes!!!!! Just the preemie outfits that he has received. I have a feeling he won't be getting tons of use out of them by the time he can wear them. Hopefully when he can start wearing outfits we can at least dress him in them and take pictures! The NICU doesn't recommend having them in their own clothes because they can't gaurantee that they will not end up in the hospital laundry and never back to us! And I have a feeling that by the time Evan comes home he will easily be 5 pounds, which the outfits are for 3-5 pounds. I'm hoping he can fit them for a while because they are ADORABLE!!! Thank you to all who purchased such precious little outfits for him!!!!!!!

Last night Evan weighed just over 4lbs 1ou!! So he continues to gain!!! The other AMAZING news is that he has only had one apnea/brady yesterday at 5am in the past 2 days!!!! I called his nurse this morning and he hadn't had a single one all night!! I'm hoping that today has been the same. This is HUGE!! Praying he is outgrowing these!!

His xray yesterday was MUCH better than last Mondays! One of the wonderful nurses explained the xray to me and yes...Evan's poor intestines/bowels were not looking well last Monday, but his second xray looked better and his third looked much better! ALMOST back to normal! So we are praying that this forumla for sensitive tummies will do the trick. Not sure what that means for getting him back on to my milk...hoping that still happens!

Well, it's passing 1pm and I can't believe I haven't left for the hospital yet!!!! I better sign off and get going!

Thank you for the continued faithful prayers. We still have weeks ahead of us in the NICU, and I just ask that you continue to pray for this little miracle boy, and that the remaining weeks will be nothing but growing in positive leaps and bounds!!!!