Tuesday, March 31, 2009

Baby J's Therapy Session #1

Today our case manager and the OT (occupational therapist) came today for the first time. We have done some paper work with another lady, but today was the 'real' deal.
I will first confess that I was hoping they would say "he's fine" and "we don't really need to work with you guys". In fact I think I had my heart set on that.

They two women who came out (from 4 Oaks for those of you who live around here) were very nice and easy to talk to. They watched Baby J take a bottle, and then spit up 1/4c. of it (we have this problem quite a bit). They gave me some suggestions to help with that problem too, although not really their 'area' of expertise. *for the record he spit up maybe a tablespoon twice a week before he started PediaSure

After his food had had a chance to settle, they did some activities with him that mostly he thought, and looked like play. They made lots of notes, and they also asked tons of questions.

Baby J has almost no upper body strength or diaphragm muscles needed to crawl, and is significantly behind in his speech area (speech therapist and physical therapist will come next week). The OT is here to work on his fine motor skills (holding a bottle, reaching for a toy, etc.) but also works with large motor skills (sitting up, being able to lay on your belly and push up) that help with the finer skills. He is at least at the 4-6 month area in all motor areas, but they are not sure about speech, the therapist will give us a better idea about that next week.

Here's our homework:

1. No standing. Baby J loves to be held on his legs and 'stand' with us holding him. This is developing some muscles, but not the ones he needs. Right now he is going in the direction of walking/standing before crawling. Babies NEED to crawl to help with reading skills, tracking skills, and overall muscle development.
-this also includes exersaucers...if he is in one he has to have pillows under him to make him "sit" instead of stand. When we hold him he needs at least one of his legs at a 90deg angle at all times.

2. Exercising his arm/upperbody/shoulder muscles. We have a few positions to put him in, and he will need this exercise for 81 (not sure the significance of 81) minutes a day...not consecutively, but all together.

3. Getting him to hold his own bottle without help...this will happen gradually. He already grasps it, but without support of the bottle itself or his arms, he can't lift it. It is too heavy for him.

They saw good things too like smiling at himself in a mirror and reaching/looking for a dropped object. He got pretty cranky towards the end of the session, but hey, he was working hard!

The bad news for me was that he does indeed need services. The GREAT news for me is that in this case I can actually DO something to help him!

*If you didn't get to read my last post of congratulations to my dad, scroll down :o)

Congratulations Pop Pop!

Dear Pop Pop,

We just want to say congratulations on your retirement today! You have worked very hard for a very long time, and you deserve a break. Only we KNOW you won't be taking a break. You never do! However, when you get the time we'd love to have you...

...read us stories in the big chair...
...give piggy back rides and horsey rides...

...Oooh and Ahhh over the pictures we make you...

...hold us snuggly tight...

...and help us make things and fix things. Because spending time with you is the best!
Snug and Baby J (and Jenney and #1)
We love you dad, congratulations!

Monday, March 30, 2009

I Heart Faces-Pets

Who wouldn't love this face? This is our dog Chester and I am entering him in the I Heart Faces contest for this week. (I hope I am following the rules correctly...) All the black that is missing on his nose? It is spotted on his tongue. Chester has been our dog for almost four years. We got him the Saturday before Easter...before we even had our house yet. He stayed with #1's parents until we moved in. We got Lucy (his littermate) about four months later. He is very loyal, patient, energetic, and I couldn't ask for anything more in a dog...except that maybe he didn't eat cat feces...

Not Me! Monday, Stellan Style

If you have not heard about Stellan or heard his story you are either very new to blogging or have not read my blog in over a week or are living under a rock. Today's Not Me! Monday is being posted in honor of little Stellan, and the entire MckFamily. Emily is hosting Not Me! Monday, Stellan Style and you may too if you click here.

So I was actually thinking of doing something along these lines yesterday. I first though of just not doing Not Me! Monday and making sure people clicked over to My Charming Kids to pray for Stellan as Not Me! Monday was started by MckMama.

Then I thought about doing a Not Me! Monday post telling all the things that I of course would not do, that I am pretty sure MckMama would never do either.

Then I read Mama Bear's blog and discovered that Not Me! Monday was being done Stellan style and decided to join in. So without further adieu...

Not Me! Monday, Stellan Style
I did not keep my phone ever so close this week to make sure that I didn't miss a tweet about Stellan's condition....I did not even keep it on during church just in case.

I did not almost choke on my drink when I saw the new button (see below) because the angle it was taken at or something made me think that they had a picture of Baby J when he was in the hospital. For the record, he and Stellan look nothing alike 99.9% of the time except that they are both white, male, babies and probably weigh about the same.
I do not let Snug do what he is clearly not doing in the picture below after I am done pumping. This does not gross my husband out to no end. He (Snug) does not say "Mmmm, Momma milk!"
My son did not have a "dying hissy llama fit" about having to get out of the recycling truck at the museum when his turn was over. He is always well-behaved and mild mannered.
I did not take 3 children under the age of 3 to the museum by myself for a few hours this morning. God gave me a brain and I use it to its fullest. I would never attempt something like that by myself.
I am not elated that my diapers are all hanging on the line right now getting some good old fashioned sunshine. I did not have to step over 5 doggie doodles to get to the clothesline to hang them.
So please, please continue to pray for and check up on Stellan. In fact, run right over to his mama's site now...we are!

Friday, March 27, 2009

9 Months Old

This cute boy is 9 months old today! Hip Hip Hurray! Do you like how he sports his bink these days? It cracks me up. We got the scale in the mail today (it came super fast!) and it quivered between 15 and 15.1 lbs. Now, I know I can't get my hopes up too high because it may just be a few (2-3) ounces off from the GI doctors...but it also could be that this nine month old is getting bigger!
Oh, and do you see these two tablespoons of rice cereal made with PediaSure? It doesn't look like much but...

...it made this little guy's day. I mentioned that when we were at the GI doctor Wednesday we also got set up with a nutritionist. She wants Baby J to try eating 2 TBS of rice cereal made with PediaSure because he can't forget how to eat. I know that sounds goofy, but when he is only getting liquids he could have trouble going back to solids I guess. The only downside is that if when he gets them he doesn't take his goal of liquid, he can't have it again for a couple of days. Well, he had it yesterday, was 4 oz shy on his intake so didn't get anymore. Well little guy, it was good while it lasted, huh? We'll try again Sunday.
Oh, I haven't forgotten about Snug...he just hasn't gotten much blog time lately. When we get back to Not Me! Mondays, I will have TONS about him, trust me. He keeps life interesting. He even started saying "I wuv you too" when I tell him I love him. Melts my heart. Meanwhile, please remember to pray for Stellan.

Thursday, March 26, 2009

Alphabitty Moments

Please join Mama Bear and record the little moments that slip by unnoticed, so quickly. Next week I will put the correct button up!

Thoughtful Thursdays

Thoughtful Thursdays is new to me, but I was reading about it on Kaleigh's blog. I think you are supposed to tell about something you did nice for someone else. But I am going to break the rules a bit and tell you what someone else did for us. Ok, many many people have been more than kind to us lately, but here is one of them.
I got my cousin Melissa's permission to share with you all that she is the one who donated her milk supply to me and is continuing to pump daily. I know that Milk Sharing isn't acceptable in many circles, or is 'weird', or whatever you want to think. The point is, Baby J needs more milk than I can produce right now, and she has been so generous to donate hers. Along with the HUGE generosity of family to pay for our first shipment, we have been blessed. (From now on we will make a "milk chain" to get it from Michigan to Ohio without mailing it)
Here's another thing that just kills me. A few months ago our pediatrician told me I wasn't "allowed" to continue breastfeeding. We later (when desperatly trying to get more calories in him) tried multiple formulas and only one didn't make him ill...but he wouldn't drink it. (THANK YOU to Katie and her husband for letting us try theirs though...it is so expensive and to only use 3 scoops of it would have been a waste). PediaSure isn't technically a formula, it is a toddler supplement, but he will take it. However, he needs another source of milk along with it. The formulas we tried made Baby J so sick that if we had indeed continued our GI doctor thinks he would be worse off.
The long and short of it is this: Without donated breastmilk we'd be in a heap of trouble/still trying to figure out how to use a Milk Bank. THANK YOU MELISSA. You are my thoughtful Thursday.

Wednesday, March 25, 2009


You will want to read my last post if you haven't already but...
this picture...
reminded me so much of...

this picture that I had to post them and ask you again to pray for Stellan.

Dr. Appointment

Please stop right here and take a few minutes to pray for baby Stellan. As we were leaving Dr. K's office I started getting the Tweets that he was doing very poorly, and is in was in V-Tach (just got the tweet that he is now out). I am sorry to anyone who gets my tweets and got them in reverse order like my sister-in-law did...because the last one I sent said "he may die" which was referring to Stellan NOT Baby J. However, even though most of us do not know him, he still needs prayers.

But you know what? Baby J will die. All of us will, and we don't know when or how...but we will all die. We know why we will die. We will die because sin separates us from God, and because of sin in the world our bodies are not perfect, they deteriorate and we pass away or accidents happen etc. But sin is the reason we die. We can't control or change or know when we will die...but we know what happens to us after we die. God has made a way for us to spend eternity with him. Each of us has a choice. We either choose to accept His free gift of salvation, through Jesus, or we can choose to ignore Him and thus go to Hell.

I believe Hell is a very real place. It isn't where a cute little devil with a pointy red tail runs around with a pitchfork. You don't got meet 'your buddies' there and have a good ol' time because heaven would just be boring. The Bible says in Revelation 20:10, 15 "And the devil, who deceived them, was thrown into the lake of burning sulfur, where the beast and the false prophet had been thrown. They will be tormented day and night forever and ever. vs 15 If anyone's name was not found written in the book of life, he was thrown into the lake of fire."

Anyone who has not made a personal decision to follow Christ (Romans 3:23-all have sinned), will die and go to Hell, but anyone who believes in Jesus (Romans 6:23), can have eternal life (John 3:16). How can you do that? Romans 10:9-11 "That if you confess with your mouth, 'Jesus is Lord' and believe in your heart that God raised him from the dead , you will be saved. For it is with your heart that you believe and are justified and it is with your mouth that you confess and are saved."

I almost wrote "I'm sorry I got off topic and went on that tangent" but I deleted it. I'm not sorry. It is the truth, and I felt the Holy Spirit prompting me to put it in. Because it is true...no matter what doctors can do for Baby J, or Stellan, or you or me...we are all going to die. We of course must live healthy and be responsible (ex, taking my sick baby to the specialist) but in the end, God gives us the time here on earth, and we don't know when it ends...but we can know how it ends. And Hell is forever, but so is Heaven...an eternal life spent in God's presence. No fear, no pain, no crying. Have you made that choice? Please think long and hard about it if you are not sure, and PLEASE feel free to ask me questions if you have any. You can leave a comment, or contact me personally.

Today we went back to Dr. K for Baby J's checkup. My friend Mindy graciously watched Snug for me so I didn't have 100 distractions with me in the office, and Mother Hen went with me. She is a great entertainer for Baby J in waiting rooms, etc.

Baby J weighs 14 lbs, 14 oz...the same as the day we left the hospital almost a week ago so no growth since then. However, he was 13 lbs, 12 oz when we were at our initial appointment almost 2 weeks ago...so he's had over a pound of gain! PRAISE GOD he has grown at all! We hadn't seen any significant weight gain since November...in fact he was smaller than he was in November (14 lbs 13 oz). Right now he is an ounce over that. He is the exact size they expect to see in a 4 month old, both length and weight. He will be 9 months old on Friday. That is just heartbreaking to hear. In truth, all of this has been extremely hard. I hate it.

Back to the positive! They think he has grown almost 1/4 centimeter. It is really really hard to tell because it so depends on how they wiggle...but based on the fact we see him tippy toeing the exersaucer...they are racking it up as growth. That puts him in the 4.5th percentile for height on a 8 month old. He still counts as 8 months until Friday...at which point he goes dropping back off the scale, but we're looking at the positive, remember? Still not close to being on the growth scale for weight.

SO, because he hasn't lost any weight he gets to start solids again! YEAH! During our visit we had our first appointment with the nutritionist. I was just praising God we were seeing her on how to introduce more foods rather than how to deal with Celiac disease. That in itself is a HUGE miracle. He will get 2Tbs of rice cereal made with PediaSure twice a day. I get to make baby food again! HURRAY! The nutritionist and the doctor are totally fine with Baby J getting donated milk. They still agree he needs breasmilk for all the benefits...but is at a 75/25 ratio (75 being PediaSure). Another praise, my milk supply seems to be going up about 1/8 oz a day. Not much, but I will SO TAKE IT :o)

THANK YOU FOR PRAYING. We are not out of the dark yet...our next appointment is in 3 weeks. The doctor is going out of town for that period, but says as long as he continues to eat drink as much as he has been and I watch for signs of something being wrong, he can be home and be normal. There is backup there should I need it.

Now if you will excuse me, I am going to look at E-bay for a baby scale...because 3 weeks would be torturous!

Tuesday, March 24, 2009

I Think You'll Agree...

I think you'll agree...

That no matter what we find out tomorrow at the Dr...

This is one...

Cute baby!

I got a call today from Children's hospital saying that they needed to talk to me about scheduling. Of course it was while I was doing laundry and couldn't hear the phone and of course they also called my cell phone which happened to be charging and not in my pocket where it normally is. *sigh*
SO I played phone tag with the lady there for about an hour and finally talked to her. She said Dr. K (the woman one) asked when we were coming in and when she heard it was Friday asked that we be moved up to Wednesday because she wants to make sure he is growing.
**Remember, he wasn't supposed to originally be seen until April 4...can you imagine?
I personally noticed his backbone (which had almost disappeared) in the tub again this morning, and his face looks thinner. I am just praying it is because he is getting longer.
HOWEVER. No matter what I know he is in God's hands and I can't do anything other than what I am currently. Perhaps he will be 16 lbs and 27 inches! Wouldn't that be great? Thanks for praying, our appt. is at 11:15 tomorrow morning.
PLEASE also be praying for Baby Stellan...no improvement.

Monday, March 23, 2009

No Not Me! Monday

I am not doing "Not me! Monday" today. Instead I spent the time I would normally blog praying for Stellan. In case you don't know who MckMama is, she is the creator of "Not Me! Monday" and due to the fact that her baby boy is in the hospital and in grave danger, she of course didn't post a Not Me today either. As I spent the time this afternoon praying for Stellan, and for Abby and Kaleigh, and all the families today who are in hospitals all over the world with sick little ones, I knew how to pray. Because we know how hard it is to see your baby sick and have no answers...because we've been there.
I was going to just leave it at that and not blog at all...but then I remembered what a powerful tool blogging can be, and with the large "reading group" I have accumulated over the past few days...and felt that I needed to at least post and ask you all to pray too. Because what a mighty God we serve.
-The donated breastmilk came today, safe and sound, and Baby J took it easily.
-Some family members, who know who they are, paid for the shipment (VERY costly) for us. THANK YOU to everyone who was involved with this. It is literally keeping him alive and his organs healthy.
-We went and picked up the 576oz of free PediaSure tonight.

Sunday, March 22, 2009

Oh Me of Little Faith

Being out and about again people are asking "How is Baby J?" I never know exactly what to answer. He did gain 1 lb 2 oz from what he had been since December (He is back to what he was in November right now) when we left the hospital...but I must admit that I am still struggling a little bit quite a bit with whether or not Baby J is growing now that he is at home. He shows great signs, but yet I know I am a doubter. We have noticed he has gone from not touching to tippy-toeing in his exersaucer! He is very energetic and giggly...and he screams like a pterodactyl when he gets excited.

However, his face looks thinner again today...and I can see his backbone again. I am just so afraid to miss something I think I am focusing on everything.

However, GOD IS SO GOOD. Oh the things he has done for us today. Not that he doesn't everyday, but I think he is saying "Hey, pay attention! I am so taking care of you!" (not that God talks like that...but you know what I mean).

Three things have emerged in the last 24 hours that are such blessings.
1. As I've written about before my milk supply is not where it should be pathetic right now. Although I did pump more today than I have been. I have a generous donor who's breastmilk is as we speak in the US Mail on its way to my doorstep. I will not disclose this person's identity at this time because I haven't asked permission, and I do realize that Milk Sharing is kind of controversial. In fact, until I was in desperate need of it, I thought it a bit...weird. I was open to other people doing it, but it was probably not for me. Well. Thanks to this person, Baby J will be getting the appropriate breastmilk to PediaSure ratio. I was debating not even mentioning this on my blog because it is very personal...but God is so good.

2. My friend Cindi (pretty sure she won't mind me mentioning her here since this is not a sensitive matter) called me tonight and said there was a lady a few towns over who had FREE PediaSure listed on Craigslist. FREE. Wait let me say it again Free. I quickly called the person offering, a little scared to have this be either too good to be true, or outdated, or a little fishy. It was NONE of the above. She is a home visiting nurse who has a patient who was switched from PediaSure to a different feed. They have a few cases sitting around and simply need to make room for the new feed (what Baby J is on can be fed through a G tube or a NG tube as well as drunk). This is the exact same stuff he was on in the hospital. We had a prescription for it from our doctor, but our insurance won't cover it so we have to buy it straight off the shelf in the stores. We will be getting 3 cases (24 cans a case) tomorrow evening. God is so good.

3. Speaking of Craigslist we got Snug his birthday gift tonight. Free. Yep, you read right, FREE. Want to know what it was? An Imaginarium train table. Retail $159.99. I was just searching Craigslist today for this lady who was having people test her cloth diapers for free (never was able to iron it all out) and up popped the free train table. It was even IN our town...and I caught the posting about 5 minutes after it was posted. So I woke #1 up out of a lovely nap and had him rush over and get it (sitting next to their trash at the side of the road). The 'picture' side is a bit scuffed up, but I think you'll agree that the 'green' side is lovely.

Oh, and did I mention it came with all this track and little bridge? No? Neither did the "free" ad. But it was in the table (by the side of the road) nonetheless.

Although I so wish that I had a baby scale so I could check every 30 minutes one or two times a week* just to make sure he is indeed gaining and I'm not missing something, I do need to see all the great things around me and be so thankful for the way God provides.
*I know that you can't weigh anyone everyday and get accurate growth. We learned that at our former pediatrician when they made us go in every 3 days and freaked out if he had lost an ounce or only gained an ounce. It isn't a healthy way to live, nor is it accurate. However, once a week wouldn't be so bad, right?

Saturday, March 21, 2009

Random Picture Challenge

4 Little Men and Girly Twins has a picture challenge today. Here is the challenge for all of you out there, like me, who clearly don't have enough going on in life to write what is actually happening at your house. Third folder, first picture with brown in it.

There is brown ALL OVER in this picture. It was taken in August at #1's grandmother's house. Baby J is sporting a favorite outfit that is certainly brown, along with the chair they are sitting in...and the afghan. Snug's foot made the picture also, but it was not brown at that moment. He must have been clean in that particular shot...he was mostly covered in dirt all summer.
Random blog fact of the day...we actually call Snug, Snug in real life. When I changed our names to protect identities calling him Snug just made sense. Baby J isn't called that, but we do call him Baby J*** quite often. I never ever call #1, #1. That would be weird. He is #68 at work, but that would also be weird to call him on a blog unless we were polygamists...which we are NOT. Actually I don't think in polygamist circles the wife has multiple husbands...perhaps they would if there was a femanist polygamist sect...

Friday, March 20, 2009

The Drays, Today

My blog is called "The Drays Today". It is about the everyday things that we do as a family of four. My husband is a police officer, and together we run a home daycare that we call Draycare...because we are just so witty like that crazy. Most of you know that, but my counter on the sidebar shows that in the last week we've had about 2,000 people visit...and many of you may not actually know those things.

A few months back I wrote a compare/contrast blog entry in answer to my cousin Melissa's blog entry. It was simply showing how different we are, but how we are still good friends. Some people say friends are the family you choose...I am very blessed to have family that are friends. In that entry I had commented that though she (Melissa) loves having lots of readers and "secretly wished she had as many readers as MckMama or CF Husband," I was super ok with a small following of close family and friends. I would feel very odd writing for an 'audience' because my blog was started to record the day to day activities of our family for my own amusement/stress relief, and for my side of the family who lives mostly in Michigan.

I also share random things about babywearing, cloth diapering, having a home daycare, trying to eat healthy, breastfeeding, and being on a budget/Financial Peace. If I had tons of people reading, I didn't think I would feel comfortable sharing those things.

However God used my love of writing my thoughts down and taking photos for more than just my own amusement. I do not know what I would have done in the past week without blogging. It was a way to inform many people prayer warriors about what was going on with Baby J without having to think; Who have I talked to? How much info did I remember to share? Plus I was having trouble relaying information without getting too emotional. Obviously more than just a few family and friends have been reading. THANK YOU to everyone who was reading and praying.

Now that Baby J is doing well most of you will not continue to read the rambly thoughts on life I have, because I am neither witty nor interesting enough for a grand audience...but if you do choose to stay, welcome. This is just the Drays, today.

What? You wanted to know what we did today? Oh, of course you did. Well, Draycare was up and running had Mother Hen here today, while I caught up on housework slept 4.5 hours (my mom** is still here and she played with the kids). #1 got back to working out and was very glad to work his muscles after days of sitting in the hospital. Snug developed a nasty cough due to his allergies (he is highly allergic to trees *they are budding like crazy* like his mommy) and went to bed early. Baby J was happy happy all day, and not a lot of crying. I am sure having 3 adults around to meet his every whim helped, but it was nice anyway. He is eating like crazy, and because he is supposed to be having breastmilk along with the PediaSure and my milk supply continues to be inadequate, I am looking into alternatives...more to come on that I am sure.

**THANK YOU to my mom who watched Snug, was a big encouragement, got lots of people praying, and even ran Draycare a few times. I'd love to post a picture of her right here for you to see, but seems how she doesn't like to have her picture taken/featured on our blog or flickr account, I will refrain. She does appear from time to time...but tonight it would probably be a bigger "thank you" not to put one up :O)

Thursday, March 19, 2009

Alphabitty Moments

If you would like to record the little moments that slip by
so easy, join Mama Bear and do your own Alphabitty Moments.

We Have Don't Have an Answer *Update

Wow, so much in one week. This is day 7, and our final day in the hospital. We feel more settled about no dignosis after talking with Dr. M. According to him it is not at all odd to have a failure to thrive baby come into the hospital, have tons of tests run, and then find absolutly nothing...and them grow. 60% of the babies admitted for "failure to thrive" or low weight gain are never explained...and that was their explanation from him today. I am ok with that. Baby J is on a prescription for PediaSure that he will continue to use until discontinued by the GI doctors. He will also continue to take the medication he has been on here, at home. They are explaining his fussiness and gassiness to having so many bottles after he has been exclusively breastfed, except for our unsucessful formula trials. He is not used to all the air from a nipple.
I am going to say that it is a MIRACLE. They were just sure he had Celiac, and he doensn't. I would just like to think that God chose to heal his body. Thank you for your prayers. PRAISE GOD for this.

This post may not be very put together, and if I seem upset, I am just really tired. Baby J slept form 8:30pm-10:00pm....and then from about 5:00am-8:30am. The rest of the night he cried, no matter what we did. The nurses finally gave him some "gas drops" and he settled down a little after 5, only to be awoken by the cleaning lady who walked in and started swishing open trash bags right next to his bed before I could ask her not to. He woke up really cranky, and has been crying all morning. We're not crying, we're just cranky.

He does NOT HAVE Celiac disease. That is such an answer to prayer. We were so scared he did, and he was a "classic case" according to two of our GI doctors. His EGD test also pointed to Celiac from the way his intestines looked, but the biopsies were negative. What a relief that he does not have to live with that condition. We could have dealt with it, but SO are happy not to.

*the hospital is having a fire drill right now...the alarms are going off and blinking, and some automated lady is talking to us, but we don't have to go anywhere...what a good drill, huh?

So what is the answer? Well there isn't one. They don't have any answers actually, but because he is growing, he gets to go home. (I'm a little confused though, because he only gained while on the IV, and lost an ounce when he was off, which isn't bad or anything, but he had just had a 7oz bottle literally seconds before he got weighed. He hasn't been weighed today.)

Some speculations they have are;
He has a milk protein sensitivity...but PediaSure is milk based, so that doesn't add up.
His digestive system is immature
Even though he was full and happy he wasn't getting enough calories so he didn't grow. He was nursing 6 times a day, fully satisfied when he was done. He also ate close to a cup of food at each table meal consisting of quite a variety of fruits and veggies, oatmeal, rice cereal, tofu, and egg yolks. (he also was having several wet diapers and two BMs a day)

Some questions we have are;
Will he have to continue on his medication he's been given here? With is he isn't supposed to be vomiting or spitting up...but he is spitting up more than he ever has in his life.
Why is his face swollen? His little face is swollen today and no one seems to be concerned-maybe from all the crying he does?
Why is he crying and fussy so bad? I'm talking inconsolable screaming at times-as in last night, and again as I write this. We only have ever had this when he's been on a formula we tried when he was really young...and he is really gassy.

Bottom line we are so glad he doesn't have Celiac disease, we are super tired of being in the hospital, we are still confused.

Wednesday, March 18, 2009

Wednesday Night

Are all these pictures starting to look the same to you? Me too! I wish I had something else to blog about, trust me!

Today we learned that the biopsies are not back yet, maybe tomorrow they say. Yes, yes, maybe tomorrow. Maybe Friday, maybe next week. Hey, why don't we move in? What? 1/2 our house seems to be in the room already? Oh, maybe we already have moved in! Sorry. It is just hard to hear "maybe tomorrow" so many times.

Tonight at 6 they had family time in the Family Resource Center. (Liz, does all this bring back memories? Thanks for the tips on how to 'live' here...we seriously appreciate it...I am so sorry you guys had to be here so long) Snug came and colored a little and played with all the toys. Baby J just enjoyed watching the other kids play. Some people from the Greek Orthodox church in Dayton were there as volunteers to play and do crafts with the kids. One of the ladies knew two guys #1 works with, as they attend church there also. The volunteers here are so great with the kids. It was nice to visit with Snug in a 'normal' setting, instead of trying to get him to behave in a hospital room and not have him play with the "baby jail" raising/lowering mechanisms, run over nurses, trip on an IV pole, or be too loud for other families around us.

Speaking of volunteers, we have several in and out every day. Some are here to make sure we have insurance and can pay for our stay, some are here with service dogs, some are here to lend out movies/video games, some are here to play with the kids, some are here in case you need counseling, and one very creepy man was here to see if we needed ______________. Can't even remember to tell you the truth. He walked in as I was changing Baby J and I think I stared at his beard for a full ten seconds before I even acknowledged he was speaking to me...I was just a little shocked. He had a beard, braided, that went down to the middle of his chest. Then he had straight 'Jesus hair' (not trying to be cheeky, just...well, that describes it best) that was WAY longer than mine. As he talked to us he kept looking all over the room...weird. We told him promptly that we needed nothing. I so didn't want to be weird, but he was not what I'd expect to find walking into my son's room in a children's hospital. Maybe because I was wearing my Harley t-shirt they thought we were major bikers and he'd connect with us...who knows. OH, I remember now, I looked back at my Twitters. He was there to make sure that all the staff and volunteers were up to our expectations and were doing everything we needed. Um, yes buddy, until you walked in looking like Mr. Biker Gang and scoped out our entire room, we were completely satisfied. Move along now please! (I am not exaggerating, he was looking EVERYWHERE...perhaps it was the fact that we have 1/2 the house here...)


Worldess Wednesday With Words

Not a hospital picture...from earlier this month...just loved his expression...

Wordless Wednesday posts are supposed to be just a picture posted with no words...but seems how people are reading to know what we know about Baby J...I better put up some words!

Well, day number 6 here at the hospital. I wish I had some super-exciting news for everyone, but we don't know anything yet.

Our day starts around 7:00am with vitals and the first round of doctors. After diaper changes, a bottle, pumping, and a general clean-up of the room, I order breakfast and #1 goes and gets a breakfast.

Baby J sits in a swing in our doorway watching doctors make rounds and new nurses introduce themselves (that hasn't happened for us in 2 days...we know almost all of them now) to their patients. We eat breakfast behind him. He isn't allowed to eat any baby food and the sight of a spoon makes him a little cranky.

Next we take a short walk around just to get up and moving. He is supposed to get weighed then, but usually I have to remind them. Today I asked and it got done in the AM like it is supposed to. I guess I should have been asking earlier in the day on other days, but I don't like to be pushy. Today he did get weighed and he is 14 lbs 14 oz. Down an ounce, but that is ok.
We read stories, visit Lily (who has been here since March 4, yuck!), and play with toys until about 10:00. Then it is time for a nap.

He wakes up when his next set of vitals is due and then we go to the Family Center to watch the (non-contagious) children do crafts. Next up is lunch, nap, more nurses, maybe a doctor, and then brother comes to visit with Grandmommy! We have dinner, vitals, play with toys and then he goes to bed about 8:00pm...he usually isn't very good about going to bed here. He finally gets settled completely between 2 and 3 am. Then we start over!

We were supposed to find out the results of the biopsies today, but Dr. M said he didn't think they would be here until tomorrow and Dr. S said she would call the lab and tell them to hurry it up. Dr K (the man one) said he didn't know when the results would be back, but he is happy with Baby J's growth at this point and whatever the results of the biopsies we would be talking to someone about his diet when he returns home and then starting him on solids again sometime. Who knows when though. We will defiantly still be here on Thursday at this point.

If anyone would like to visit, we are "settled" enough now...there are not so many people in and out and we don't have any testing, and we (and by that I mean ME...#1 is always level) are more emotionally settled. Please just call my cell phone first or text so we can tell you if it is a good time. We've had lots of people offer to come, but we've not been too up to it. Trust us, we are up to it now. We may go a little bonkers in fact :o)

Did you know that people all over the world are praying for Baby J? Numerous people have called friends and family in other states to pray, churches across the United States are praying, my aunt who is a missionary has people everywhere praying, we have family in other states including Pennsylvania praying...plus all of my regular blog readers and lurkers who live all over. THANK YOU. People ask daily what they can do. Pray. And PRAISE GOD he is growing, even if it is at the hospital and his mommy gets mad she couldn't get him to grow at home. Bad attitude on my part, I know. Sorry.

One more thing, if you really want to help. I'd mentioned Project Linus in another post, we got another blanket from them yesterday in radiology. If you are crafty-sewey in anyway, consider finding out how you can make and donate a blanket or two. When you are so scared and worried about your baby, I can't tell you what it does to your heart to have someone wrap a homemade blanket around them and tell you someone made it to comfort you. I would love to know that this project of love will continue for other families because it really touched my heart. Thanks.

Pray for MeWe participate in "Pray for Me... Pray for Others" on the Riggs Family Blog. Check out their blog to add your prayer request. Join a community of friends who care about you, and hope you will care about them.

Tuesday, March 17, 2009

Hospital Pictures

Tomorrow we will have answers so they say. We really thought that about Monday. If you didn't read todays medical update, scroll down to the next post. If you want updates faster than I can actually blog, look at the top right hand side of the blog at "Twitter". Some people have signed up to follow me and get updates on their cell phones (text messages) but it is about 50/50 whether they are actually getting the messages.

Snug today...looking cool in his shades, and holding his bear who is wearing an IV wrap.
Daddy, who was just a few days ago radioactive himself, getting ready for X-Ray time.

All papoosed up and ready for X-Rays...can't move when you are like this! Toys were available to distract him.
Vitals being checked by a nurse this morning before going up for X-rays. Notice how full his limbs and face are looking.

Getting a bottle from daddy, but not letting go of his bink. Sometimes he wants nothing to do with his bink, other times he falls apart without it.

All hooked up to the tubes and wires. So glad he never had to have an NG tube on top of all this.

A therapy dog came to visit...usually Baby J loves animals, but sometimes it doesn't matter what your favorite thing is...enough is enough. Poor little guy would love to be home in his own bed.

A very tired little boy...not sure what day this is...must have been Monday pre-operation.

Sunday...passing time at the hospital. I'd have pictures of the Hide-and-seek games, but I am always "counting youself" or "hiding right here".

Hanging out with Pop Pop is always fun.

Just Another Tuesday? Never.

There, I got to use my usual Tuesday title. And each and every Tuesday is always different.

I would first like to say that although we have really liked all of our nurses, this morning we started off with a girl I went to Cedarville with, so that was fun, and now we have our nurse, Amy, back today, who we really like. How fun! She has even decided she will not be taking vitals, and neither will anyone else (the nurses aid etc.) while he is resting during the day. We are sitting right here, and I know how to look at his monitors (heart, blood pressure, etc) and they know I will let them know if I see anything suspicious. He is back off his IV. No weight check yet today.

I have been trying to do everything I can for him, along with #1 of course. We do his feedings, changings, wrap his IV port, record his ins and outs, and give him his medication. I need to feel like I am doing something here and the staff seems to be happy to share the load.

This morning at 8am we went to radiology for a little vacation. Hospital vacations are when you get to leave your room for more than a short stroll to see the fishtanks. You get to do exciting things like ride the service elevator that has pictures painted on the ceiling, sit in waiting rooms with snotty nosed little kids that you are trying to keep away from your kid, wish you had brought things from your room that you forgot, meet other hospital staff, and drag an IV pole around. I'm telling you, hospital vacations are just so relaxing. On this particular vacation we got to go with Katie, a little friend Baby J has here.

His two friends are Katie and Lily. They have both been here since we have. Katie probably gets to go home today. Lily has her family visit for a couple of hours in the afternoon, but she is pretty much alone the rest of the time. She is 7 months old and the nurses LOVE her and carry her all over. She hangs out with them most of the night too, as she screams when she is left alone. We are so fortunate that I stay home and can be here 24/7 and that #1 has sick time built up so that he has only had to work one night that we've been here. We don't ask too many questions about the other patients, and really they aren't supposed to tell either. We collect bits of info though. I just can't imagine having to leave him here by himself, that would break my heart. I do feel terrible about how much we have had to cancel Draycare lately. The parents have been very understanding.

Anyway, back to radiology. Baby J was given barium (unflavored for those who have been there) to drink, but he was so starving from being back on "NBM" he didn't seem to care. We went back 4 times for x-rays...once every half hour after they had done the initial one. Or maybe it was 4 times all together. I lose track. Anyway, they got what they needed and we are back in our room. The doctor down there showed us the x-rays which are all computerized now, and she said he passed with flying colors. He has no scarring. This can mean two things.

1. He has Celiac but it hasn't permanently damaged any bowel functions

2. He doesn't have Celiac at all.

#1 is playing Madden 2004, some football game on the Playstation 2 that is in our room. Baby J is sleeping with such an angelic expression, and I am going to order some lunch...and pump...again!

Oh! I have lots of pictures from out hospital vacation today...you know, our trip to radiology. I will try to post them later.

Monday, March 16, 2009

Esophagogastroduodenoscopy REVISED

***Update at the bottom...scroll down...***

Um, yep. That's what he had today. They call it an EGD...but isn't Esophagogastroduodenoscopy fun to say type? Ah, what a day it was. Too bad it wasn't a Tuesday so I could have my title be "Just Another Tuesday? Never." like I so love to do (because it seems like so many things happen to us on Tuesdays)...but Esophagogastroduodenoscopy is a close second, don't you think?

I digress, serious rabbit trail.

When Baby J woke up this morning he was in a bad mood. He wasn't allowed to eat anything, and if you've ever seen that boy eat, well...his mood wasn't pretty. He is now feeling much, much better from his flu* (we'll discuss that later) and wants to eat lots. Since his procedure wasn't scheduled until 4:15 pm they decided he could have Pedialyte until 11:00am, so he chugged 18 oz in 2 hours. Amazing.

I have to admit I was very nervous. Kinda sick to my stomach. I really appreciate all the Bible verses that were sent my way. It was hardest sitting in the pre-op room waiting and waiting. The staff here is so nice. A nurse was kind enough to tell me almost all the moms cry in the pre-op room. The operating room (OR) nurse had someone else come in and take the bed he was going to be on into the OR so he could personally carry Baby J over. That made me happy to see him happily sucking a paci as he went on an adventure with a new friend.

The Esophagogastroduodenoscopy procedure went well and only took about 20 minutes. Dr. K came in and told us how it went before I had even finished 2 chapters in my book (Which was purchased on June 27, 2008 by our library. It had a date stamp in the back...and that happens to be Baby J's birthday. Wow.).

They took pictures of Baby J's esophagus, stomach, and small intestine. We actually have some of the pictures for his scrapbook. They took several biopsies of suspicious areas, and the results of those won't be back until Wednesday. However, Dr. K said she is pretty sure he has Celiac Disease. I twittered that, but it didn't show up on my blog. She said she can't tell us that 100%, but that she has been doing this for over 2 decades and she knows what she sees, when she sees it. She is pretty sure that is what we are up against.

He has an Upper GI tomorrow morning at 8.

Snug was here playing hide-and-go-seek today and a friend of ours from church visited who happens to be in charge of the residents who are watching over Baby J. I know the big boss. Nice :o)

Well, I can't remember anything else to write...thanks for reading.

I forgot to comment more on the 'flu'. Dr. K said he may or may not have had an actual bug. Sometimes (again IF he does indeed have Celiac) it will present it with flu like symptoms as it progresses to the next stages. Good to know, good to know.

Not Me Monday, Hospital Style

I'd almost forgot about Not Me Monday until I got MckMama's tweet a few minutes ago. I was actually firing up the ol' computer to get an update posted...so I am going to do a combo deal. A Not Me! Monday hospital post. Hang on, this has been a crazy ride. (I can't upload any pics to Blogger right now...)

*For those of you who do not normally read my blog, Not Me! Monday was started by "MckMama" to relieve a bit of mommy stress and admit all the silly/crazy/dumb things that inevitably are a part of motherhood. If you want to read more of those, you can have around 400 entries to choose from for your reading pleasure if you go here. You know, because you are not reading my blog at work or while your kids are running around the house...

First things first. I will give the official medical updates.

Baby J was on NBM (nothing by mouth) from midnight last night until he started squealing his head off at everyone around 8:30 this morning. We then learned that his first test wouldn't be until 4:15 this afternoon so he was put on a clear liquid diet at which point he has had 18oz of Pedialyte (not the PediaSure he has been having) since 9:00 (writing at 10:45). Wow. It goes in one end and we can literally see him filling his diaper as he sucks them down. They come in 2 oz bottles...so we have been giving them to him as fast as we can switch the nipple. He is now back on NBM until after he recovers from the anesthesia.

The Upper GI has been moved to Tuesday morning...so at least here through Tuesday. We can go home when he is off the IV and gaining for 2 days. That doesn't seem possible to me seems how he hasn't had gain since November...and I don't plan on being here until June thankyouverymuch. He was 14.2 oz today, but his IV fluids are at 100% so he has no physical way NOT to gain as they up his IV. Now if he doesn't get the IV fluids changed he could level out again, and not gain. You can't reject IV fluids basically...they just go right into your veins.

Other than that, we know nothing. I'm working on getting a therapy dog up here to see him because he loves animals and once his Pedialyte wears off...or runs directly through him, he'll be pretty mad at us again.

If you can't tell, we are in pretty good spirits today. Baby J is fairly happy and we have the tests we have been waiting for within sight. If baby is happy, mommy is happy.

This week I did not...

I did not bring 5 children 4 and under to a specialist appointment at a large hospital.

I did not violate policy and feed them all a super healthy McDonald's lunch.

I have not broken down and cried on at least 100 occasions, and then within minutes be totally in control. Not Me

I do not get a bit annoyed when everyone thinks my son is "such a pretty girl"

I do not miss my other son so much it hurts sometimes and try to make him sit on my lap when he visits even though he wants to play hide-and-seek.

I do not hide in the shower and behind the privacy curtains making that 2 1/2 year old laugh his head off.

I do not secretly love that hospital food (which I get for free because I am nursing) is totally unhealthy and the stuff I try not to eat a ton of at home but "have" to eat here. not me

I have not come to terms that my days of nursing are very numbered even though I have fought so hard to keep it up until he is one. I am not relieved to have the doctor's blessing to pump and bottle feed because my son has not bit me until I am bleeding and bruised in the last few days. Not Me (I also have not gotten irrationally emotional about this very hard decision, as I watch my son slug down bottles of vanilla cake batter PediaSure.)

Thanks for the prayers and the encouragement. 4:15 is a very important time today and we covet your prayers. Please pray that not only do they find nothing or nothing serious, but that when they remove the IV he starts gaining and never looks back...total healing. No matter what the outcome, God's will be done.

Sunday, March 15, 2009

At The Hospital Part 3

Wowie Kazowie Batman! Baby J just weighed in at 14 lb!. He hasn't registered that high on a scale in quite awhile...months actually. I was so shocked. I had them re-weigh him in. I think he was supposed to be weighed much earlier this morning because the nurse was surprised when I asked if they were going to weigh him today...she thought it had been done about 7am. Anyway, yesterday morning he was 13 lbs 9 oz...so that is a 7 oz gain IN A DAY! It is most likely because he can't throw up or not absorb the IV fluids. Further proof he is not absorbing enough.

Snug was happy to visit us at the hospital. He got to ride in a wagon, bring a balloon and eat some Cheerios.

Last night was a rough night. Baby J just could not go to sleep. By midnight he was doing a whiny moaning sound and just could not settle himself. I gave him 2 more oz of PediaSure thinking maybe he was hungry. After a few minutes he threw that, along with what the nurse assessed to be everything he had had in the past few hours, up. That was very discouraging. About 1 am I asked that they please contact the doctor and ask again about the IV or NG tube. I was done waiting for "something to stay down". He was very lethargic and doing this awful moaning sound, hadn't had a decent urine output all day and I don't care how much spit he had, he was not well. Period. They started IV fluids shortly afterwards.

Baby Jail

About 3am Baby J woke up and wanted to nurse...rooting and grunting galore. He nursed like he hasn't in a few days and was drifting to sleep when he was done. He slept until 8am. In fact he slept through vitals checks, that I barely remember either, I was pretty tired. We actually slept through Dr. M coming to tell us about tomorrow's procedures, but the intern did a good job explaining it later. They were worried that if they started an IV he wouldn't want to eat, but it has done the opposite...he is more alert and happy and wanting to eat. They started him on a medication this morning to settle his tummy so hopefully he won't upchuck anything else today.

A very sick Baby J last night right after they started his IV.

Tomorrow he is having two procedures done.

1. An esophagogastroduodenoscopy
For this he can have nothing after midnight by mouth until after he has recovered from the anesthesia. He will be put completely under for this procedure because Dr. S. says it is considered invasive. They will look at his esophagus, stomach, and the beginning of the small intestine. If they find any suspicious areas they will do biopsies.
2. An upper GI. He will drink some barium (and keep it down) and then have a series of X-rays of his abdomen. This will show how food moves through him.
We don't know yet what time these will be done or when we will have results. If he continues to gain without an IV we will get to go home!

Ok, on a non-medical note here is what we are doing besides watching lots of cable on closed captions and trying to let him rest.
I got to take a room temperature shower this morning, apparently they will never have a child scalded here in a shower. Hypothermia may be a problem however. I used the baby shampoo provided to Baby J, but his hair really isn't that dirty at this point, and he can't have an immersed bath because of his IV anyway. He was happy to share. I smell baby fresh. I have also been using his baby lotion. My hands are very dry after using hospital soap and washing my hands at least two times an hour. The towels are about as soft as the tissues. I had #1 bring some tissues from home because poor Baby J's nose is getting rawish.
After I got out of the shower I tried to take Baby J out of the baby swing. One of his favorite pastimes is sitting in the swing in our open door watching other kids and families. The nurses routinely do this with babies who don't have anyone here with them so they don't feel lonely. (Isn't that SO SO SAD???) When I went to get him out, the safety clasp wouldn't open. After three of us had worked on it for awhile one nurse got it undone...I think his swing times are over.
This organization gave Baby J a blanket as we were being admitted Friday. We were scared, overwhelmed, and he was agitated. As soon as they wrapped his new fleece blanket around him he relaxed. Thank you Project Linus. Click on their icon to learn more.
I have to admit I kinda like giving him a bottle. He will take one from me now, even directly after nursing (which is going much better today, supply still low). He gets so excited to have it, being that it is filled with vanilla cake batter PediaSure that he is learning to L-O-V-E. I am kinda afraid he will never ever take anything else to drink after being on it for a few days. That was my admission for the day. I thought I was going to have a problem giving him bottles (when he tried formula at home it is almost always from someone else) but it is actually a nice cuddly time. I just love being with him and hearing his happy little hungry sounds. I love knowing he is getting enough calories. I have been assured before that my milk supply is adequate (pre-hospital stay) but it is reassuring to see all that creamy liquid going down into his mouth.
Thanks for the praying, tomorrow will be a long day I'm afraid.

He, Baby J is a boy. Everyone who comes in says "she". Clearly there are too many baby girls in Dayton being named J******.