Happy 3 Months, Isaac

Jason reminded me this morning that today is Isaac's three month birthday. My little buddy. I am heartbroken at times when I think about how his life is beginning...

Isaac did not have the biopsy today. He's too sick. During rounds his care team put in orders for a full work-up--all the tests needed to figure out what illness/disease he has now. He received platelets this afternoon and is currently undergoing a blood transfusion. They did a lumbar puncture for spinal fluid to see if he has Meningitis. All the while he still cannot eat. Meaning, he does not even have a feeding tube. He has had formula a total of about 4 weeks of his life.

Another morning of unmet expectations and tears. I think we just keep hoping for a light at the end of the tunnel. We feel trapped in this dual life. There was mention yesterday that we could potentially be in Cleveland until February.

Have you ever listened to a song 100 times and on the 101 time you "got it?" I mean, like a light bulb went off and it finally made sense? I love the artist, Sara Groves. Her music just really gets to me. Anyway, there is this song on her album, Conversations, that I totally "got" on my last trip back to Ohio. I played it over and over and over again.

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Painting Pictures of Egypt
-- Sara Groves --

I don’t want to leave here
I don’t want to stay
It feels like pinching to me either way
The places I long for the most
Are the places where I’ve been
They are calling after me like a long lost friend

It’s not about losing faith
It’s not about trust
It’s all about comfortable
When you move so much
The place I was wasn’t perfect
But I had found a way to live
It wasn’t milk or honey
But then neither is this

CHORUS:
I’ve been painting pictures of Egypt
Leaving out what it lacked
The future seems so hard
And I want to go back
But the places that used to fit me
Cannot hold the things I've learned
And those roads closed off to me
While my back was turned

The past is so tangible
I know it by heart
Familiar things are never easy to discard
I was dying for some freedom
But now I hesitate to go
Caught between the promise
And the things I know

BRIDGE:
If it comes too quick
I may not appreciate it
Is that the reason behind all this time and sand?
If it comes too quick
I may not recognize it
Is that the reason behind all this time and sand?

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Our family is no doubt in the desert. We may have a lot of water (and an abundance of pasta), but we're out here. It's very tangible. It's also for a reason. I think I'm going to focus some energy on Exodus and see if I can't learn a thing or two from my Israelite brothers and sisters.

Love to all of you.

Below we are asking for help. Read at your own risk!

Ok, so if you're still reading, thanks a ton. I've told you I'll be honest about our needs. I don't really like asking, but I need to. If you're reading along and don't comment on the blog--TOTALLY FINE. Would you mind dropping us a card in the mail? We haven't received anything in Ohio in about 6 weeks. Hannah loves notes and stickers and I love cards, too. Maybe a funny article from the newspaper, a coupon or a word search maybe a picture of your family or a pet. I don't know. But we don't have visitors and we don't get mail. And it would really help since now we're talking February?! Geesh. I might be celebrating my 30th birthday with Ronald McDonald.

Another need is meals for Jason. Specifically, Tuesdays and Thursdays after 6:15pm or leave it on the front porch. You don't have to call or make plans with us. You can just drop it off. Maybe you don't have time but you're a millionaire. You could send him a giftcard for dinner. Well, you know what I mean.

We are running on empty. These things would mean a great deal to us. We appreciate every email, blog comment, phone call and most importantly, prayer. All of you have been our support since July and we are so thankful. I wish we were going home soon, but it appears we'll be here until Hannah graduates from high school. Thanks for hanging in there with us.

The day started out horrible but ended great.

Hannah and I had a disagreement at 7:30 this morning in the main hallway that brought her to a raging temper tantrum while everyone else was peacefully sleeping. I was embarassed and angry and she was screaming her head off. When we finally got to the hospital, we found both of the activity rooms closed--no show volunteers. I was supposed to Kangaroo with Isaac (hold him skin-to-skin) so I stared crying. We got down to the NICU and I was bawling. Since I can't take Hannah to see Isaac (other babies in the same room), I asked for his nurse to step out so I could tell her why I couldn't come back. She immediately came out along with the charge nurse and they took both Hannah and I back to see our little buddy buddy. It was SO nice to be with both the kids at once. Hannah was thrilled to see her brother and hold his little hand. Isaac's nurse took a picture of the three of us but it's a polariod so I can't show all of you. My eyes were all red from crying but the kids looked so sweet. Isaac's nurses are so helpful and kind. It meant a great deal to me that Hannah could see her baby brother. After a very short visit at the NICU, Hannah and I came back to the RMDH and she played with her best friend, Mateo. It was a beautiful day and the kids ran around outside, yelling and screaming. I was so glad for this because I'm always telling Hannah no running or yelling inside and that's all they want to do together!!! After a quick lunch and nap, Hannah and I headed to the mall. She played in the play area twice, we ate and I checked out a few stores. No angry mommy, no Hannah temper tantrums. It was wonderful. We came back to Cleveland and stopped at Rainbow Babies. The activity room was open so I finally got to Kangaroo with Isaac! He was a good boy and slept almost the entire hour. We did get some not so great news--his white blood cell and platelet counts are down--this is usually a precursor to an INFECTION. I will pray tonight that this does not happen. His biopsy is scheduled for the morning and we'll hopefully have an answer within a week. After loving on Isaac, Hannah and I went to the ever- famous McDonalds and then back to the RMDH to bed. A late night for us but the day ended on a high note with lots of tickling and giggles which is good for both of us.

I try to remind myself that God is good all the time. And all the time He is good. Even when I don't feel like God is good, He is. And always will be.

Blessings.

Isaac's eye surgery went well. When the doctor was finished, he came out and said had they waited any longer, it may have been too late. Within the last week and then the last few days, his eyes had gotten considerably worse--almost unrepairable. The doctor will re-evaluate his eyes again in a week. I pray his eyes will be completely healed and that he will make a full recovery.

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I know to some people, what we're doing doesn't make sense. It seems strange that we would knowingly adopt a child who may have significant disabilities. Who may die. Because that is still a very real possibility. Jason and I talk often, and talked again tonight, about whether we were both still in agreement that Isaac is our son. We both know without a shadow of a doubt, that he is ours. There is nothing that anyone can say or do that will change our minds. Because it's not really a mind decision it's a faith decision. As a couple, we have one main goal. That goal is to live a life that glorifies Christ. To us, that means listening to what the Holy Spirit speaks to our hearts and then following through. God very clearly spoke to us about each of our children--just like he speaks to us about our family and friends and neighbors--about where we can help and how to love. I do not know what our lives will look like in 2 days, 2 weeks or 2 months. But I know right now, we're doing exactly what God wants us to be doing. It isn't always easy and it isn't always difficult. It just is. And we both believe that God is using our circumstances to bring us nearer to Him and to share His love with others. If a Christian steps out in faith and believes that is what they're doing, there really isn't a choice to make. Because if you trust God, he's leading you. You're not choosing, your choice was to follow and He will direct your paths. Here's what I'm saying. We did not choose Isaac. Or Hannah. Or Moriah. We chose to trust God in the area of children and he placed them in our lives. And because He chose them for us, He placed in our hearts the love for them. We trust God's plan for Isaac's life and ours--whatever that means. No matter what.

Blessings to each of you.

Ok, so I still haven't picked up my camera. Sorry, folks.

Isaac will have his eye procedure tomorrow at noon. He will have a biopsy on Monday at 1pm. Other than that, he's doing about the same.

Hannah and I and another mom and her son went to a nearby mall today for a couple of hours. The kids played in the play area and then we went to the food court for dinner. It's nice to just get away from the hospitals and the RMDH. I asked my "mom friend" who is from Ecuador, if she'd ever had a massage and she said no. I think I'm going to contact some local massage places and see if I buy one or two if they will give us a couple free ones. I'd like to treat my new friends to a massage. I know they would love it. She's so appreciative when I invite her to go places with me--the grocery store yesterday and the mall today. This evening, after we arrived back at the RMDH, she gave me a scarf from Ecuador and a clay nativity scene that her mother crafted. I thought that was so nice. So now we have a wooden nativity scene from Germany (from our exchange student, Maxi) and a clay nativity scene from Ecuador from my new friend. I just love it.

Jason is busy with work and things to do around the house this weekend. If Isaac has surgery next week, Jason will come down for the surgery.

I think I'm kind of in denial about "all of this" right now. I think tomorrow I will just go to the hospital for rounds and baby kisses and then take a couple hours for myself in the hospital cafeteria while Hannah is in the activity room. I think if I had a massage right now I would cry the entire hour. Just letting go of stress, expectations, thoughts of failure...a bunch of junk. I feel like I've had very few moments of clarity in the last few months and that's overwhelming to me. I just need to catch that third wind, like I mentioned a few days ago. I think once Isaac is eating again and there is hope for going home, I'll feel better.

Well, Hannah finally fell asleep (it's 8:53) and I'm going to take the monitor downstairs and watch CSI. I know, I know, Grey's Anatomy. I love that show, too, but I've been a CSI (Las Vegas) fan from season one. Plus, then it gives me something to talk to the nurses about in the morning. They'll give me the rundown about Meredith and McDreamy.

Maybe I'll remember to pick up the camera tomorrow?!

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Isaac had his weekly eye exam this morning and we found out he needs eye surgery ASAP. If he does not receive this laser procedure, he will go blind. As of now, his surgery is scheduled for Friday at noon. While this is a fairly normal procedure for extreme preemies, it's scary nonetheless.

The doctor also believes Isaac has a disease that will require surgery within the next week. He has to undergo a biopsy (probably tomorrow) to confirm their suspicions. Once we have a definite diagnosis we will share with all of you.

Hannah and I had a rough day today. Some really great times and some really bad times.

This is all really frustrating and draining right now. I just want to be alone. I don't want to talk to anyone or be responsible for anyone. I just want to go away for awhile. This is all very selfish, I know. Well, honestly, that's how I feel right now.

Until tomorrow.

PS...I forgot the camera at the NICU again--I'll try to remember to pick it up tomorrow.

And Back Again

I don't know how many more titles I can come up with to signify our trips back and forth between MI and OH!

Hannah and I just arrived back in Cleveland. As I've said before, it's easier to drive at night when Hannah will sleep than in the morning after she's just slept all night. She immediately went back to sleep as soon as I put her in her pack and play. Little sweetie.

We had a play date this morning with friends and then Papa was over this afternoon. I was able to run out and mail packages and pick up prescriptions before the four of us went out to dinner. Hannah and I said goodbye to Daddy and Papa and hit the road a little after 7pm. We had a stop off in East Lansing to drop off a little care package to a neighbor friend who is a freshman at MSU. It felt a little weird walking in the dorm with a toddler. It was nice to be on campus for a few minutes, though.

Jason will not be down this weekend as we are getting the air ducts cleaned out and the basement carpet cleaned on Saturday. But! Next weekend, Daddy AND Papa are coming down. Hannah was thrilled to learn that her Papa was coming to the RMDH. So, in about a week and a half, we'll have 2 visitors--how exciting!

Again, Isaac is the same. Some test results have come back--all negative. This is good, but we're all still wondering exactly what's going on. He still has a couple more tests and then we'll see. I hope to make it to rounds tomorrow to hear what his care team is thinking. Perhaps we'll never have an answer and he'll be on the road to health and healing. That would be fantastic! I can't wait to see my little buddy. I wanted to see him tonight, but, I have another little one that is sleeping and obviously can't be left alone.

My papa returned home this evening. He called and left a messsage saying he was calling from heaven. HA HA. I was happy to hear he was joking and called him back as soon as I heard he'd called. We chatted for a few minutes...I was glad to hear his voice. I was going to tell him to eat some of our favorite dessert for me (vanilla ice cream, chocolate sauce and peanuts), but I don't think his cardiologist would appreciate that too much. I think he needs to stick to his fruits and vegis. Right Gram?!

All right, I better get to bed. Given the last two mornings, I expect Hannah to be awake between 5 and 6. I can't wait until she's like 15, and then I'll wake her up at 5 or 6 on a SATURDAY.

Blessings.

Screaming 2-year-old

Up early again. Hannah just can't seem to sleep those last couple of hours without a major uproar. There is NO WAY she's ready to get up at 5 or 6...usually 6:45 and on I let her stay up, but not earlier. So, I'm typing to keep my mind off of the yelling and screaming. She almost falls asleep and then starts up again. Until the big girl bed, she'd always been a pretty good sleeper. Now she can get out, etc. And the stress of OH/MI is a lot for her. She's quiet now. Maybe asleep?!

Hannah and I ran a few errands yesterday and had lunch at one of our favorite restaurants--Rose's (on Reed's Lake in East Grand Rapids). Our neighbor is a server there and we always request to sit in her section. It's nice.

Papa (Jason's dad) is coming for a visit this afternoon. Hannah adores her Papa and is excited to see him and play with him. Then the four of us will have dinner together. I'm not sure if Hannah and I will head out tonight or tomorrow. I'll probably decide later today.

I just blew my nose and she heard me. I guess she's not asleep. Yelling again.

We had a nice dinner last night--pork roast, asparagus and brown rice. We sat at the table (like we used to do) and talked about our day. It was great.

Isaac is the same. His antibiotics finished in the middle of the night. So, now we're waiting for some test results in the next two days and then (hopefully) they'll start feeding him again Thursday or Friday and prayerfully he will not get NEC or any other illness that will set him back again.

She's calming down again. The cat is desperate for me to hold him. He's all rubbing on the computer. Crazy cat. I'm surprised the dog isn't whining to get out of her kennel. All right, well, I need to blow my nose again. Love to all!

Change of Plans

Well, yesterday (Sunday) was a stressful day for me at the NICU so I decided to come home--we all left Cleveland around 1:30pm. I'll be headed back Tuesday night or Wednesday morning as we can only be away from the RMDH for 2 days or we lose our room. I would've stayed home longer, but...we'll do what we have to.

Isaac is up on his oxygen today which is not good. They'll begin testing today to find out what the underlying causes are of his NEC. I'll be calling the NICU again around 11:30, after rounds, to find out what the rest of his day is going to look like.

I accidentally left my camera at the NICU so no pics until I return. And I was going to get some fall pics of Hannah, here. Argh.

It's really nice to be home. We went for a walk around the block last night and after we put Hannah to bed I ran out to Meijer to get some basic items. I loved being at my grocery store again. I just kept walking around wishing I needed more so I could continue shopping. Jason nor I slept well last night. It was sooo hot and I think I was anticipating Hannah waking up which she did at 5:15. I did get her back to bed and asleep but since Jason was up for work, I decided to just get up.

We'll be low key for a few days and then head back to Cleveland. I told Isaac's nurse yesterday I need a third wind. I'm starting to drag and have a hard time with all of this. I want to be done down there. I want to bring him home. I want him to be better.

My Papa went back to the hospital on Saturday. He has an infection and they are doing some other tests, as well. Pray for strength for him and Gram.

Thanks so much for hanging in there with us. I don't know what I'm going to do when we do finally come home...I don't want to lose our Internet family! You all have really been fantastic.

Blessings.

Doughnuts!

Jason and Hannah left around 7 this morning to run out and get doughnuts for the house. We don't have breakfast provided very often (which is totally fine) so we thought everyone would like some good ol' fashioned doughnuts for breakfast!

Jason and I watched Kid Rock on Larry King Live last night. He really seemed like a nice guy. Sounds like he takes his single-parenthood very seriously--I like that. He is a bit of a womanizer, which I don't like, but other than that, I think I gained a new respect for the guy.

Yesterday was a VERY exciting day for Hannah. While she was in the activity room, a pony came to visit. A real pony. And it didn't even have a poop bag! So we have a Polaroid pic of Hannah petting a pony. Adorable. And then, when I arrived to pick her up, the volunteer informed me that BARNEY was coming to the hospital. Hannah isn't a huge fan, but she was excited to see him. She barely ate any of her lunch and then I had an idea. One of the little boys from Ecuador, Mateo, absolutely LOVES Barney. I quickly called the RMDH and tracked down Mateo's mom and told her how to get the bus and get to the hospital quickly! The kids were so excited. And Mateo's mom said it was the best gift he could've ever received. I was glad they were so happy.

Jason arrived mid-afternoon to tell me he'd gotten a flat tire about 60 miles back. We knew his car needed new tires but hadn't gotten around to it. So, we spent about 2 hours at the tire place yesterday evening getting all of Jason's tires replaced.

Isaac is the same. They believe Isaac may have some kind of underlying illness/disease that is causing him to get the NEC multiple times. They are running a series of tests to see what they can find. Some of their ideas are pretty serious, others are not. We are confident that God is in control of Isaac's life and ours. Whatever they find, God will keep us all in His hands.

My Papa came home yesterday. He does have some serious heart issues but he and my Gram love the Lord and trust in Him.

Have a great Saturday!

Yesterday and Today

Yesterday, I forgot to report that Hannah and I went to the Cleveland Children's Museum. We received some free passes while we were there so I think Daddy will be taking Hannah again this weekend. It was a bit of an off day for both Hannah and I yesterday--we weren't there long. It was fun, though.

Isaac is the same. I met his physical therapist today and she showed me how to massage him. It's actually pretty involved. So, I bought him some gel oil today at Target and might try it tomorrow. He will meet with his physical therapist more and more as he continues to grow. We'll also have a physical therapist and occupational therapist once we go home. This extreme preemie stuff is pretty involved. I had no idea back in July when I made that initial phone call. Little buddy. He's turned our world upside down and I'm so glad he did.

Jason will be here late tomorrow afternoon. Hannah and I are very excited.

My Papa is still in the hospital. Some other complications have come up so we'll see how he's doing tomorrow.

Hannah and I ventured out to a different Target today. Target is like an excursion for us. She always gets her smoothie and I usually pick out a few things from the dollar section. Today, I found a pair of pumpkin socks for Isaac for Halloween. He's needing clothes, now, but I can't find preemie stuff anywhere! And he's still way too small for anything else. I'll keep looking.

Thank you for praying for my family and friends. What a joy to have a virtual community to support us. Really, I lean on all of you for love and support. Being here alone can get very lonely and I always look forward to hearing from those of you who comment.

Isaac is a Rainbow Baby!

I had this DONE, and I lost it. I hit the delete button on accident. Argh. It was a long one, too.

Ok, well. Hmmm.

Please pray for:

--Isaac. That he can come off his oxygen completely.

--Papa. That his heart and health would be restored (we received word today that his heart condition is much worse than anticipated). That God would give he and my Gram strength and peace (and the rest of our family).

--My NICU mom friend. That she would lean on God for her strength as she received sad news about one of her twins today.

--My friend, Shelly. That God would strengthen her and give her peace of mind. That he would provide more opportunities for rest for her.

Short and Sweet

Isaac, that is. He smiled a bit more for me today but didn't really wake up. I'm still hoping he's just catching up on some much needed rest rather than getting sick again. He'll be finished with his antibiotics next Tuesday, then they'll do some testing and if he's up for it, they'll slowly begin feeds again. So, just waiting it out. He is in a big boy crib again, as of this morning. Hopefully, that's where he'll stay!

Hannah had a good day in the activity room with Carol and Betty--very nice ladies. I always feel good leaving her with them. I can count on the activity room for Tuesdays. Thank goodness! I posted a sign in the College of Nursing today for a sitter. We'll see what happens. I called one other church today--I have 4 churches looking for ladies in their congregation to help us. It's important to me to find people who can come here--to the Ronald McDonald House. This is why I'm looking for people in the immediate area. I trust that God will send the ladies I need exactly when I need them (it would not be like Him to send them any earlier, would it?!).

My dear Papa will be headed to the hospital tomorrow for an angioplasty. Please pray the procedure goes well, opens up the blockage and he recovers quickly. I love and adore my Gram and Papa to the ends of the earth. Thankfully, my mom will be with Gram while Papa is undergoing his procedure. They are the dearest people in the whole world to me. But you know that, don't you Gram?! :-) My love to you and Papa. Forever and always.

Good night!

October 1, 2007

Well, it's officially October. Can you believe it? It's my favorite time of year. In my heaven, it would be fall all the time.

Jason went home today. He arrived this evening. Of course, I miss him already. I'm thinking about making another trip home. Since we'll most likely be here until December, I'd like to get some rest at home for a little while again. We'll see.

One of the other NICU moms stayed with Hannah for 2 hours this evening so I could see Isaac. He didn't wake up for me tonight. Little stinker.

I called 8 local churches today looking for some "Grandmas" who'd like to come help take care of Hannah a few hours a day for me. 3 of the churches said they'd see if they could find someone. Hopefully I'll hear back soon.

I'm a little run down tonight so I'm going to sign off. Thank you for your prayers and support. Always needed and appreciated.

Blessings.

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Another routine day for the Evans Family. Well, routine as in living in the Ronald McDonald House with a baby in the hospital. It's strange how life changes, isn't it?! This is our new normal. We really do have a lot of laughs about all of this. I think I'd go crazy if we didn't.

Someone provided a great buffet for dinner tonight: goulash (which I did not eat), sauerkraut and sausage, cheesy potatoes, chicken strips, green bean casserole, salad and tons of desserts. Of course, Hannah wanted the cupcakes, but I managed to get her to eat some dinner, first.

Bath time tonight. Isn't she the sweetest thing you've ever seen?! She lights up my life, for sure.

We had to get a few things for Isaac today. Once he's finished with this NEC infection, he'll be ready for some clothes so I got him some tshirts and socks. I haven't bought him anything but an MSU outfit for basketball season so it was fun for me to buy my little boy some clothes. We also got a few groceries for the week: yogurt, apples, creamer for my coffee, ice cream sandwiches...you know, the staples!

Isaac had a good day. He's still on his cannula for breathing, but it's slowly being turned down--that's the easiest way to explain it. I held him this morning and was going to go back tonight but bath time was running late and I wanted to stay with Jason and spend some time with him. We'll be back in the morning to visit with Isaac before Jason heads back to MI.

Hannah is singing in her pack and play and Jason and I are sitting here in the dark waiting for her to fall asleep so we can turn the lights on. It's all very silly, but whatever works, right?

I'll get some more pics of Isaac tomorrow. Much love!

Saturday's Activities

Well, our day was pretty routine. Hannah did sleep in until almost 7 so that was nice. Jason took her down to breakfast while I stayed in bed for a few extra minutes. I do appreciate the little things!

We visited Isaac this morning and then I went again myself this evening. Jason held him this morning and I got to hold him tonight, too. One of the nurses said she held him today, too. He's had a lot of lovin' today! He's doing about the same and smiling more and more.

Jason watched MSU vs. WI today and sadly, we lost.

We just ordered Chinese takeout and will start a movie in the next few minutes.

Love to all!

Thank Goodness it's Friday!

Hannah had another early morning--6:30. sleep has been a constant struggle for her yet she still manages to have pretty good days. I think when this is all over, she's going to sleep for like 2 weeks straight.

We visited Isaac this morning. Since the activity room doesn't open until 10am, I stayed with Hannah while Jason got to sit in on rounds with Isaac's care team. It's interesting to hear them strategizing about his care. Once I dropped Hannah off, I joined Jason in time for our supervision meeting with our Ohio adoption agency social worker. When adopting, every family must be supervised for a set period of time. In our case, 6 months, and it started on August 31st(our date of temporary placement). Isaac's adoption will be finalized after this supervision period. Therefore, his finalization hearing should happen sometime in March.

Isaac is about the same. He'll be on his antibiotics for his NEC for about 14 days and then the'll do a work-up on him to ensure the NEC is gone and try to slowly begin feeding him again. So, it's a waiting game for the next 2 weeks. Everyday we get to see him and hold him and kiss him is a blessing. I just adore seeing him smile. I can't get enough! I told the nurse yesterday I just with I could lay on a bed with him and hold him close and kiss his little face.

Jason is officially laid off on Monday due to Michigan's budget crisis. He'll likely return to work Tuesday. This is sooo ridiculous. We'll take the family time, though!

Love to all and to all a good night!

Thursday's News

The RMDH received free tickets to the Cleveland Zoo so Jason, Hannah and I headed out for a fun, family day. Jason and I agree that the Cleveland Zoo is the best zoo we've been to. They had a lot of great animals, nice surroundings a train ride. Hannah had a great time. We even had meal tickets for a free McDonald's lunch. Can you say nuggets and fries?! Hannah was in heaven.

Isaac was extubated and put back on his cannula. That's good news. Jason held him for just a little bit. The activity room was not open very long this afternoon so we couldn't stay long. According to his nurse, Isaac slept most of the day. This could be a good thing or a bad thing, I'm hoping he's just sleeping off his illness.

Jason brought down the monitor so we're downstairs in the sun room watching Survivor and then Grey's Anatomy or CSI...we haven't agreed, yet.

We had Spaghetti for dinner last night and tonight at the RMDH and Lasagna is scheduled for tomorrow so I think Jason is taking us out for Friday night dinner. I'm excited!

Thank goodness it's almost Friday!

Waiting it Out

Jason arrived around 11pm on Tuesday night. One of the other NICU moms who is staying at the RMDH stayed with Hannah while Jason and I ran up to see him for an hour. Jason hadn't seen Isaac in almost a month and I think it was good and difficult for him at the same time.

Yesterday we did our normal routine except Jason was with us and that was really nice. There were a few times Jason was playing with Hannah or changing her diaper that I realized how relieved I was that he was here with us. And not just to do things, but to just be a family, together.

Last night, Jason put Hannah to bed and did some work while I went up to the hospital. It was nice to go alone and it was nice to sit and hold Isaac and chat with the nurses. I felt like I didn't have any responsibilities and that was heavenly.

Isaac is about the same. Really, no changes. He has had a surgery consult everyday and so far, no surgery is necessary. We're waiting for this morning's x-rays to come back. BTW, the x-rays are of his gut--they're looking to see if there is air in between his intestines and to see if there are any perforations in his intestines. These are signs of surgery. He had a bit of a breathing episode last night but the nurse said it was probably a result of some other things going on, not because he was just having breathing problems. Every day is critical. I am thankful for every day we have Isaac. Many, many parents in our situation do not have this long.

Done with breakfast, off to get dressed!

Every Mountain Top has its Valley

This morning, when Jason and I called in to check on Isaac before 7am, he was doing great. By 12:30 this afternoon he was diagnosed with NEC again, is off all feedings, has been re-intubated (is back on the ventilator) and is back in a bed with a warmer (no more big boy crib). We are waiting for his next x-ray and a surgery consult to see what' next. This illess is SERIOUS BUSINESS. There is very little known about it. Isaac is actually part of a study to learn more about the illness.

He had reached full feeds last night for the first time, ever (deep sigh).

Please pray for complete healing and that no surgery would be necessary.

Jason is trying to get his work cleared up so he can come down here ASAP.

Please keep praying for us. Please. Thank you for the comment about remembering the light during the darkness. I needed that.

I'll keep you posted.

34 Weeks and 1 Day

We never thought Isaac would actually begin bottle feeding "on time"--34 weeks--but he did! He was one day late but that doesn't count in Mommy's mind! When I arrived this morning, his nurse told me the occupational therapist had been in and fed him 3ml of formula by bottle. I was soooo excited. Keep in mind this is less than one teaspoon, but, it is something, folks! And then, tonight when I went in to see him for just an hour, he got a big boy bed (a crib). We're hoping he can continue to hold his own temperature so he can stay in it. These are two HUGE advances that bring him closer to coming home. I am so proud of my little buddy. It is difficult to be too hopeful as many things can still happen, but tonight I am pleased with his progress.

Hannah and some of the other kids at the RMDH were photographed today for marketing purposes. The guy told us he would give each of us a CD of the photos. I think there will be some pretty good pics--I'll share some when I get them.

Jason is supposed to come this weekend and I am SOOOO excited. He hasn't been to the RMDH, yet, and won't have seen Isaac in almost a month. I can't wait for him to see his bigger little boy. Michigan's economy is in the toilet and the government can't seem to balance the budget--stupid politics. Jason is in the direct line of fire and may face a job loss. This has been in the making for quite some time and we don't have an answer yet, but, that's fine. I know God is in control and I think it would be a great opportunity for Jason to have some new choices. We'll see. At the very least, he has some unpaid time off coming due to budget problems. Let's see, baby in the NICU that costs hundreds of thousands of dollars, job on the line, bills to pay...let go and let God....isn't that what I've been saying to myself all along?! I'm excited to see what God has up His sleeve.

On a very sad note, one of the little boys (I think he was 4) who was was staying here passed away on Sunday. It is a reality to check to me that not all of our kids survive. Just last week Hannah was playing with him. My heart and prayers go out to his mom and family. Please petition God on his moms behalf that He would cover her with peace in this time of mourning.

Hug and kiss your family tonight and tell them you love them.