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

Wednesday, April 8, 2009

Evan's first set back...

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!


  1. hi heather hearing about the "set back" i remember hearing that all the time. I just want to tell you that they happen but God is looking after Evan. he is your miracle just like Jesse is my miracle. and when this is all said and done you can look at him when he is nine and tell yourself when he is making you mad that he is your little miracle. i hope all is well and that you don't have any more set backs

  2. ((((((Heather)))))) Praise God that Even was back to his normal self & that he held his head up!

    Praying that he just got too much to eat and that he will continue to do amazingly well!

  3. Hi Heather,

    You don't know me, but I am a friend of Kelli Fredlund's. I lost my 2nd daughter, Delaina, last June at 26 weeks. It has definitely been the toughest year of our life. I can relate to the pain you are going through regarding Zac. You will never forget Zac, but over time the pain doesn't hit you so intensly everytime you think of your precious angel.

    Also, our 1st daughter, Calla, was born at 28 weeks (2 lbs. 5 oz). The NICU is definitely a roller coaster ride. At one month Calla too developed a UTI and had to go back on the ventilator, get hooked up to IV and have a blood transfusion. I was so scared. After she came out of that, she did really well and came home 3 weeks later.

    I just want you to know that you are in our thoughts and prayers. If you ever need someone to talk to who has walked a similiar path, please let me know.

    Hang in there.

    Vicki Gross

  4. Still praying for you, Brett and Evan.
    kendall manz