Monday, April 27, 2009
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!
Friday, April 24, 2009
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!!
Thursday, April 23, 2009
My latest "digs". Looking pretty sweet in navy blue!!!!
My nightly story time with mom and dad.
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!!!!!
Monday, April 20, 2009
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!
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.
Saturday, April 18, 2009
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!!!!!
Wednesday, April 15, 2009
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!
Monday, April 13, 2009
Snuggles with daddy! Ohhhhhh so cozy!!
Evan was LOVING his daddy time!!!!!
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!!!!
Saturday, April 11, 2009
This one is for you Adam and Krista! Evan heard his first Easter story yesterday!!
A tubeless moment after bath time and snuggles with dad. Ahhhh, it's so nice to catch a glimpse of a tubeless Evan!!! He's blowing kissing to everyone! :)
This one is bitter-sweet....our family. It's hard not having Zac in our arms.
Me and my mommy!
EVAN IS 5 WEEKS OLD as of last night!! Wow...time is flying!!
Well, I don't really have much to talk about today...yet. I'm trying to finish a GST remittance for Brett's company, and I'm TOTALLY procrastinating!!!!! Stupid thing is, it's all organized...I just have to type it all in to my spreadsheet. Why can some things be so hard to motivate yourself for?!
Yesterday Brett hung out at the hospital with me and Evan. We were there for about 4 hours. Evan heard his first Easter story. One of the nurses told me about these pillow speakers/ear phones that I could put in Evan's isolette with a little tape recorder with our voices for him to listen to!!! I totally want to track that down!!! I love reading to Evan. And yesterday was the first day where he was really focusing on me and my voice...it was AWESOME!
Evan seemed much better yesterday. But during a snuggle with me he got super mad and kept holding his breath...poor little guy hasn't had a poop for a while since being off his feeds. And his tummy was really bothering him. So he got the ol' suppository. Lets just say once that thing kicked in our boy was MUCH more happy and content!! Poor kid!!!!
Brett gave him his sponge bath last night...and I got the explosive diaper :) Too funny! Brett got to snuggle with Evan too, which is so awesome to watch! The pictures of us I took myself. It's fun to try to get a decent picture when you are doing it yourself.
Evan's potassium levels were back to normal and so far he hasn't needed a blood transfusion for what they thought may have been a bit of anemia. Thank God for that! But if he had needed that, it's ok. We understand these little guys aren't able to replenish blood that easily, so this would have been just for a "pick-me-up." Evan is getting another xray today to check his tummy/bowels once more to see if things are still on the mend. We are praying for a perfect xray so that he can soon start up his feeds again. He is starting to realize that something is missing! Earlier in the day Evan was quite mucousy and when he would cough he sounded like a baby seal! It was sad!! I thought maybe he was getting a cold, but when the nurse listened to his chest everything was clear. Another nurse said he sounded like there was something caught in his throat. Maybe all the mucous was building up. They suctioned him out a couple of times, mouth/throat and nose, and that seemed to help. Or maybe he'll just have an odd cough like his mommy can get! I'm just praying that it was just from his phlem build up!
It's strange to have it be Easter and not be pregnant, or have Evan...and Zac with us. Life is hard to understand. I pictured Easter so much differently before this all happened. I'm sooooo happy to have Evan with us...but I miss Zac so much and feel so cheated out of a life with Zac, and cheated for Evan...his partner is no longer here with him. I was thinking yesterday of watching Evan playing alone, going to school alone, playing sports without his brother. It breaks my heart seeing that gap for Evan. It's hard to face these things. Yet it's hard not to be over-flowing with joy with Evan. And we should be overflowing. Evan is a true miracle and gift. Knowing that we could have lost him too...now having him in our lives...we couldn't picture life without him! The joy of Evan will never replace or fix the sorrow of Zac, but the joy of Evan is what we live in now. Zac will never come back to us...but one day we will go to Zac, and we will be together again. All of us!
Well, I suppose I should get back to my GST remittance and just get it out of my hair already! And then we will be heading up to see our boy! My favorite time of day!! I got the report from Evan's night nurse that he had a really good night and was very settled. I like those reports. But it's always even better when I get to see him!!
Happy Easter everyone!
Thursday, April 9, 2009
April 8th - after my bath snuggling with dad...loving my soother!!
April 8th - loving my snuggle with my daddy!!!!
Well, Evan seems to be doing MUCH better!! Yesterday was "ify". He was having apnea's and eratic heart rate episodes, but the resident realized he wasn't getting his caffeine, so she ordered another med that is similar to what he was getting but gets administered through his IV. She seemed shocked that he hadn't been put on this when he was taken off his regular caffeine.
After he got that, he seemed to do better!! Ah yes...my boy is a caffeine junky already!
We were pleased with how well he looked last night. He got his sponge bath and after Brett was able to hold him for a while. And Evan was just LOVING his snuggle with daddy! And loving his soother!! It is SO funny listening to him suck his soother...it's so loud! And adorable!
I spoke with Evan's night nurse this morning and she said he had an awesome night! No apnea's since early evening and no brady's and things were looking good. PHEW...I love those reports!!
Today Evan is having a repeat xray and blood work. He is also scheduled to have his eye exam this afternoon (which kinda makes me nervous because apparently it is rather stressful for preemies and they tend to brady more often afterwards...).
Please pray that Evan's tummy is MUCH better than from the first xray, and that his platelette levels are back to normal. Also pray that the eye exam (if they do proceed today) will not be terribly stressful for Evan and that he will not experience an increase in brady's from it. Also pray that his exam would come out normal!
Thank you all for your prayers! You are helping Evan get through this part of his life in the NICU, and we appreciate knowing he is so loved by so many!!!!
Wow...it's hard to believe it has been a month since Zac passed away. I know the pain will never go away, and yes, I know that one day the pain will become a different type. But today...the pain is as real as it was one month ago. I know our boy is alive and well in a place that one can only imagine...but I still wish that God would have allowed our little fighter boy to stay with us. He will forever be in our hearts, but we just wish that he was in our arms instead. We love you our precious Zac. And we miss you so very much. Your brother is doing well, and we thank you for watching over him all those weeks. You truly are our hero! "He shall cover thee with his feathers and under his wings shalt thou trust." Psalm 91:4
Wednesday, April 8, 2009
Well, over the weekend Evan was doing GREAT! Things were as they have been these past 4+ weeks. On Monday I took my mom with me to visit Evan and when I called in to "ask" to see him the nurse said Evan's nurse was tied up at the moment and she would come and get me when she was free. Blissfully and jokingly I said to my mom "so long as it isn't my Evan being the stinker!" Well, wasn't I in for the biggest shock of my life...it was Evan. His nurse came out with this look on her face that made me want to vomit and said "Evan has been having a bad morning." I thought I was being whipped right back to the moment we were told about Zac. I HATE the word "bad". I instantly burst in to tears and just started shaking. And here I KNEW this was one of those moments where we had been told over and over to expect a set back, but just like I had said to the nurse...I wasn't prepared to hear he WAS having a set back! It was the worst moment. We went in and there was my little boy, lethargic, IV's hooked up again, totally NOT how he had been. And what made everything so much worse was that I had called his night nurse at 3:45am to see how he was doing and she said he was having a really good night. It happened so quickly! The nurse told me to try not to worry...that she had done all the worrying for me that morning. She said that he was doing better since his episode began...but that didn't help me. Here I was expecting to see my healthy happy boy, so to see him just laying there not wiggling around like he usually does...it sucked the life out of me. And I caught myself thinking "so help me God...if You dare take him from me..." The nurse explained that he just wasn't himself. They know that Evan is active and likes to squirm around and have awake time...but he just wasn't doing those things. Plus his respiratory was eratic, his heart rate would dip often and he had trouble keeping his oxygen up. His body temperature was cooler than it should have been (classic sign that something is up for preemies. We get fevers and get hot...preemies/babies get cooler). All the tests were ordered. They did a chest xray, blood work, another head ultra sound, urine and stool testings. Well the chest xray showed his intestines tight and puffier which corelated with the look of his tummy. It was puffy and looked ropey. His blood work all came back normal. FORTUNATELY the person who did his head ultra sound was a girl I went to highschool with so bless her precious soul when she was done she whispered to me that everything looked fine. We are still waiting on his urine/stool results. They are looking to see if maybe he developed a urinary tract infection. BUT, the other thing that could have happened is that they may have just pushed him to hard too fast. Because he was doing amazing and tolerating the changes they would keep trying out things. He was up to full feeds (26 mls of milk from 17 mls) stretched every 3 hours. They said that even though he was tolerating them it could have just been too much for him too soon. His tummy also showed air in it from the xray...but that didn't shock me. He doesn't get burped after feeds, and even though he isn't sucking the milk in to create air, wouldn't it seem possible that he would still get air in the tummy from being full from his feeds? I dunno! Anyhow, so they have him on IV antibiotics (a 4-5 day course) and have stopped his gavage feeds until the antibiotics have been completed. He is being given IV fluids, lipids, calories, vitamins/minerals. So he is still getting what he needs but through IV instead of his tummy. One of his other nurses said "I wonder how many days until he realizes his tummy isn't full and he starts to get ticked off!" That made me laugh. ANYHOW, the whole time I was there I was just a mess. It was too close to Zac's death date, too much to see my active baby just laying there. Too much to face a typical set back. And these little babies...when something is wrong, it hits FAST! Brett came after one of his meetings and by the time he had gotten there Evan was doing much better. Starting to wake up more and squirm around, his vitals were looking good. So I took my mom home and went home and had a bite to eat. And when I got back to the hospital Evan was doing even that much better. Yesterday when I saw Evan he was back to his normal self! PHEW! Much more awake and wiggly and spunky. And his stats were great! I had gone early to be there for rounds. And things were good. Still waiting on a couple of test results. BUT, Evan had NO brady's/apnea's/dsats all night and morning so the doctor doing rounds switched him to low flow air instead of his high flow. I had spent a couple hours with Evan but then felt like I was asleep on my feet. I was actually fighting to stay awake. So I came home and had a sleep before heading back. And Evan just keeps looking better. Praying it STAYS this way!!!!!!!!!! I don't want another set back for him! When I got back I asked his nurse how Evan was doing on his low flow air and she said that he was doing so well she took him off the air. Even though I had been staring at Evan...I didn't notice it...his nose prongs were OUT!!!!! The nurse laughed at me because I hadn't even noticed and she had to ask me "do you notice anything different?" And Evan did AWESOME all day, evening and night without the extra air flow. Thank you God! I called his night nurse at my usual insanely early time and she said that he had a really good night and was doing great! They had to move his IV from his hand to his head last night. Let me tell you...the sound of your baby crying that way is heart breaking! BUT at least now he isn't smacking himself in the face with the board and cup that protects the IV! I guess he had been sucking on his soother like crazy to try to soothe him. So between the IV change and the soother sucking he had totally tuckered himself out. He slept most of the night but when I was talking to his nurse she said he was awake and back to his wiggly self! OK, this is how much fight my kid has...yesterday in front on my eyes and my mom's eyes he lifted his head! It was hilarious! I did get to hold him for about 10 minutes yesterday. At first I was nervous wondering if it would set him back again, but his nurse was encouraging and while we had our snuggle (not kangaroo...just normal bundle up) his vitals were perfect. So it was nice to have him in my arms for a little while. It made me feel like for at least a few minutes I could soothe him the way I wanted to! Sooooo, in a nut shell, please continue to pray for Evan that whatever went wrong will never go wrong again! It's hard to remember that he is just like anyone else and will catch a bug or virus. It's just hard when you actually have to experience it! He has had 4+ weeks of "perfection" that this dip was just really hard on me. But it's nice to see him back to Evan! And he is in good care and they ran all the tests. So now we just trust that he keeps picking up up up. Pray that his tummy won't be too growly missing his feeds for the next couple of days, and pray that he will be able to rest well and continue to gain weight. Pray for Brett and I for strength to endure these hiccups without losing our minds. And PLEASE pray for us as we face Zac's one month date since his death (tomorrow the 9th). I've really been struggling the past couple of days with the intense pain of missing him. Feeling very confused and very hurt by his loss. But thankful for Brett and his loving hugs and support. He picks me up every time! Well, better run and get ready. Soon time to head up for my time with Evan. Keep the prayers strong everyone! Thanks!
Saturday, April 4, 2009
My substitute "womb". This is my current home.
These are my machines that watch my heart rate, respiratory and oxygen...and they go "beep and bing". Drive mom and dad crazy sometimes when they are all over the room.
Yup, I was being a stinker again and trying to pull my tube out. The nurses got smart to me and put on these cow mitties. Mom loved the mits!!
Lemme hear 'ya say heyyyyaaaaaaa!
Well, yesterday was a good day. The morning Evan was struggling a bit with his breathing and having quite a few brady's/apnea's and d-sats, so while I was pumping and came back they had put his nose prongs back on and were giving him just a tiny bit of high flow air. No oxygen added, just the air. And he was doing great! So I'm happy about that. Needs some more time. It's all trial and "error" right now. He has been great since then. No brady's or apnea's since just before 3pm yesterday!! So the extra air is a good thing right now.
I talked to Evan's nurse this morning and she said now that he has hit the weight he is at (3lbs 8.5ou as of last night) they are going to start increasing his milk again AND start pushing him to every 3 hours for his feeds. Right now he has been every 2 hours. And then once they establish the 3 hr feeds and he gains some more weight then they will switch him to demand feeding. And hopefully soon we will start being able to introduce ME! They figure maybe in the next week they'll start trying to introduce a bottle once a day to figure out the suck/swallow/breathe.
Leaps and bounds in baby steps!
Brett and his dad just put the baseboards on in Evan's room. It made me very happy and excited at the thought of him coming home. I'm sloooooowly starting to want to get in gear with finishing his room.
I cleaned out our bedroom and I found some ooooold audio cassette tapes (TOO funny!) and there was one tape with a song on it that I knew I liked years ago. I read the words, and it made me think of Zac and what his little life did for so many.
The song is called "When I am Gone", and it is by an old group called 4Him...
Life is a vapor
So quickly fading
It only lasts a season then it's gone
And I have chosen
To live each moment
Depending on a strength beyond my own
For even through my weakness
I am learning to believe
That through my silent faith
Somebody will see
When I am gone
What will they say
When I am gone
Will I leave behind a witness
That will carry on
when all the works and deeds that I have done
Dissolve into the past
Lord, let Your fire burn steadfast
When I am gone
I look around me
And see the darkness
Within a world where few are set apart
And then I wonder
Have I been faithful
To share the hope that lives within me heart
For when I tell another
What the Savior's love can do
They just might be the one
To reach out to You
It just made me think of all that I learned through the fight Zac had, that we had together. How I believed so strongly that God was in control. And of course, when I didn't get the final answer I had hoped for I felt so betrayed and crushed that Zac had to be taken to heaven. I think a part of me will always feel a bit of that, and a huge part of me will always be missing my little fighter boy...but Evan is alive and well. He is here. He is going to get to come home with us one of these weeks. Zac's fight and life can not be forgotten, and I have to keep moving forward and remembering that just as Evan's name means...God IS gracious.
Faith does not mean you are always going to get the answer you want. And it doesn't mean that when you don't get that answer that you just throw up your hands and give up. No...it means that even though it hurts like crazy...God is still God. He still loves just as much as He did before if not more. At least I have the comfort and security knowing that Zac is safely with God and that I WILL indeed be with my son again one day. I want Evan to come to know this faith and to make the decision to follow God on his own. I want Evan to know that with that faith and acceptance of God that we will always be together in life, or death. Death is not the end. Death is only the beginning. The ending of this short, temporary life on this earth. But it is the beginning of eternal life. And that is what I have to remember.
Yesterday I had a rough day. I just ached so bad. I always ache, and always will. How do you not ache for your child?! When I got to the hospital I ran in to the social worker and she asked how Evan was doing, and then how I was doing. It was then that I lost it right in front of her. I just needed to let it out. She understands. She lost IVF triplets in 2007...so she understands the pain of loss. It's so easy to talk to her...it feels like talking to a friend. Anyhow, I just needed the release and for once I was okay with showing those emotions to an outside source!
Anyhow, just needed to get all this off my mind. Now I am going to get ready and head up to see my son!! :) I have pushed myself another hour later! I'm going at 2pm. His nurse told me this morning not to feel guilty for needing some time for myself, and that I NEED to have some time for me. They are so good at reminding you not to feel bad for being human and needing to spend some time at home to organize life for the new arrival of your child! But it's really hard for me to be away from him!! I hate it!! So...on that note, I am off to get ready!!
Friday, April 3, 2009
Wow...I can't believe that 4 weeks have already passed. And yet here we are...back at another bitter-sweet day. 4 weeks since the joy of giving birth to two precious sons...and now 4 weeks later with life so very different. I am thrilled for Evan and how well he has done this past month. He hasn't dealt with any major set backs or infections, and that is amazing. A miracle in itself. Evan is the reason I can still see miracles. My heart remains forever aching and broken missing Zac. But when I'm with Evan I feel strong for him. And I feel very very blessed. Evan WAS going to have his eye exam today that all preemies have done. BUT, because he has his apnea and brady episodes they have decided to delay the exam for a week. I had requested being present at his exam so I could hear the results, but his nurse just called me and told me that because even in babies with no history of brady's or apnea episodes tend to experience these after the eye exam because of the stress, they decided against Evan having it done because he DOES experience these things and they are concerned that it would just put him under too much stress and he would have more frequent episodes throughout the day. I'm glad that they have decided to wait. The nurse said there really is no real rush to have the exam done so they will keep monitoring Evan and watching his episodes. Once they become fewer then they will do the exam. Evan had three apnea episodes last night. Please pray that these episodes will become few and far between. I know that he will outgrow them...but it's not fun being present when he is experiencing one of these. He loses his pink color and turns blue...and not only does it stress me out for HIS sake, but it puts me right back to the vision of Zac in my arms as he took his final breaths. And I have moments where I just can not handle it. It terrifies me seeing Evan like that. It only lasts momentarily until he is stimulated and reminded to breath, but still...who wants to see their baby with blue coloring. Pray that he will soon outgrow his brady and apnea episodes. Pray for his strength and health to continue on the path that his health has been on. He really has been fortunate. Yesterday as my mom and I were leaving the NICU, the NICU liason was leaving at the same time and we said "can you believe that he is already 4 weeks old!" And she said 4 more weeks and they'll start talking about timeframes for him to come home. That idea seems to foreign and so far away to me. I almost won't allow myself to go there because I fear disappointment. Yet a part of me wants to allow myself to feel some excitement and to really focus on preparing for him coming home. Anyhow, please also pray for continued strength for me. I have been go go go and won't miss a day with Evan...but the exhuastion is starting to take a toll. I can feel it. Yet when I'm with him, then I feel good. But I am tired. And I know that the pain of missing Zac is really adding up too. We rely on others prayers for us right now because we feel tired and weak. We continue to make our requests known to God, but we are really counting on the prayers of you all to help us through and to help us find renewed strength. Anyhow, I better go. Things to get done before I head up to the hospital. Praying everyone has a blessed day!
Wednesday, April 1, 2009
Well on Sunday night I did Evan's bath...and I was terrified!!! OK, I've always been confident with babies...but big babies...not my itty bitty baby! It was just nerve-wracking because I was scared I wouldn't hold him correctly. Thank goodness for the encouragement from the nurse! She guided me through. It was just awkward bathing him in the basin while still in the isolette. I would have felt more confident outside the isolette, but it's too cool out there for little Evan. And once again he LOVED the water! It must be such a familiar feeling for him. THAT'S what he is still supposed to be in within my tummy! He is continuing to gain weight steadily which is great, and he is 2cm longer too. To people who haven't seen him he is soooooooooooo tiny...yet to us we see the changes and the weight and length he is putting on and he isn't AS tiny to us anymore! Once he hits 5lbs he is going to look huge to us, but still so tiny to everyone else! It's funny! I went to the hospital early yesterday morning to be a part of rounds. I wanted to hear straight from Evan's doctor his perseption of things. OH...and on Monday Evan was taken off his highflo air...so no more nasal prongs!! Monday he had quite a few brady's, but they just kept testing him through the day. A few of the brady's he was able to pull himself out of, which is GREAT! That's what we want to see. The others he just needed gentle stimulation. Yesterday he had no brady's up until later last night and then he had one. So that's still good. His caffeine has been increased because his weight has increased. Lucky kid!! He is getting the caffeine and I am drinking decaf if anything! ANYHOW, jumping around here. SO, I went on rounds and his doctor said that he is more than happy with how Evan is doing and said there are no major medical concerns. He said that Evan will outgrow the Brady's/Apnea's, and that they just want to continue to see a steady weight and growth gain...which he is doing "wonderfully". It was so nice to hear his doctor share such encouraging news when the same doctor had to deliver the life changing news to us about Zac. It must be hard on the doctors too. Like in our situation...you deliver the worst case scenario news to new parents on one of their children, and take part in this child's last breaths...then you continue to watch the other child thrive and fight and grow. It has to be odd no matter how many years or how desensitized a doctor might try to make themselves with their patients. These little patients aren't your typical patients. I spoke with Evan's nurse at 5:30 this morning and Evan had a really good night. Just one brady/apnea, so that's awesome! She said that he was awake for a few hours too just looking around and squirming around. He had awake time while Brett and I were there last night too. It's so fun watching him when he is awake! He is trying to hard to focus on things and just goes cross-eyed and then puckers his lips. He makes me laugh when he does that!! I'm still finding it hard to balance home and hospital. I know there is so much to do here, but I have no drive! We started a project yesterday and my mom was a MASSIVE help!! So that was step one. I need to start scheduling my time now so that I am not racing all over the place when I want to be at the hospital. This is where we thank those of you who have been preparing meals for us!!!!!!! This amazing gift has been WONDERFUL!!!!! And SOOOO appreciated!!!!!!! I just have NO time/drive to prepare meals. I'm literally at the hospital from 1-5:30 and then back from 8-about 10pm with Brett. The mornings are rushed with trying to tidy up and do company paperwork. Yesterday I finally dusted and swept and mopped my floor and cleaned out my bathroom. Anyhow, I'm going to cut this off here as I need to start getting myself organized. Please continue to pray that Evan will do well without his air so that his nose gets a break from those prongs!! Pray that his lungs will continue to strengthen, and that his mind will remember to signal his body to breathe through these brady's and apnea's so that they are no longer a situation!! And pray that he continues to gain weight the way he should. He is actually being increased with his feeds from 16mls to 17mls. And please continue to pray for strength and wisdom for Brett and I. The daily struggle with dealing with the pain of the loss of Zac, yet the joy of Evan...it really messes with the mind and emotions.