4 Month Photos!

Day 56-95 Tribute Video!

Day 121!....still kickin'!

I am pooped....I have not pooped...I just am pooped. I had a busy day of recovering. It was such a crazy night and it wore me out. I slept lots comfortably. Aunt Nancy stayed the day and helped where she could. Miss Ann Marie (my nurse) came over to check on me and said I was 100X better than yesterday.....that's not hard to tell since I am breathing today! I even went outside for some fresh air and a visit to the Magic Clubhouse. I helped Mom and Aunt Nancy in the garden. Who would have thought after a day like yesterday, I would be out gardening today?!?!? It was like we were back to "normal"...whatever that is. God is so good. Please know that this is of no strength of my own.....it is God who is pulling me and my family through this time and He is here, right here, with us every step of the way. I know you all are telling me that I am strong and that I am a fighter....it's true, I am, but only by God's strength. I have been eating good and still trying to poop but no nasties yet...just stinky "poots" (those are farts). I am on an anitbiotic just to make sure there are no beginnings of pneumonia...they say I may have aspirated and that could have been why we aren't hearing too much air flow in my right lung.....Doc isn't sure but he said it wouldn't hurt to do it just in case....so I get bubble gun flavored goodness med...mmmmmmmmm. YAWN! Well, I am sleepy and it is about time for some grub and bubble gum so I gotta run. Keep prayin'! Thanks so much! Love you all!

Update II

Hi everyone! I am feeling much better. Still not 100% but yesterday took a lot out of me. My tummy is still plump and my breathing can become shallow at times. But my temp is ok, I am tolerating my smaller/fewer calorie feeds, my peeer is working, pooper could use a little work. I am resting well and I am comfortable. I even fuss under normal circumstances and I have my awake times with my zebra print. Continue to pray for healing. Thank you!

P.S.~ Aunt Nancy let me know that her little friend Noah still has no answers to his condition. He is experiencing side effects to the anesthesia and he and his parents are having a tough time. Please keep Noah and his mommy Ellie and Daddy Jonathan in your prayers. Thanks!

Update

Hi. It's Karen. Jacob has headed in a new direction. He spiked a fever of 102.1 (which is high for him since his temp is usually about 96 or 97). His respiratory rate and heart rate increased which gave him less frequent apnea spells but we fear him tiring out....he was breathing with lots of effort. We wiped him down with a wash cloth (meds are not an option and he should not be submerged to avoid chilling him) and this dropped his temp to 98.6 which is great. Pray he maintains that. He is now resting comfortably, his heart rate is normal for him and his apnea spells are still happening but he is alert to snap himself out of it. His belly is distended which leads me to believe his higher calorie formula could be giving him tummy trouble. He is currently on plain breastmilk again and his next feed we will give him one dose of pedialyte and then back to breastmilk to avoid bloating like last weeks episode. So, that is where we are at. THANK YOU for all your prayers and support. Please pray for wisdom and guidance and a strong, fighting baby boy.

Day 120! 17 Weeks!

Well I guess someone in Texas read my post yesterday because this morning I was visited by a genuine cowboy! Check em out... he has his hat, his bandana, his canteen, his chaps and his lonestar badge... he had to leave his boots at the door! This cowboy and his brother started a project today with Ms. Beth to make me picture books with lots of black and white and different textures. I can't wait unti they're finished!
After lunch, Mommy bundled me up so that I could go outside and play with the boys. I slept in my stroller until it got too windy for me. Mommy couldn't get over how sweet and precious I looked all bundled up for the cold. Here's a shot of me sticking my tongue out! I did a lot of this today... unfortunately it's usually followed by me gagging or spitting up!
Daddy left for work and I didn't like the idea that he only sang Happy Birthday to me privately so I figured I'd do something to get him back home. And it worked! He was only at work for like 25 minutes before Mommy called him home! See, I wasn't feeling so good. My nurse was out and she wasn't sure what I was doing and was concerned that my body might be giving up the fight. I wasn't digesting my food or medicine and I wasn't breathing right. Mommy was concerned because I kept turning grey or dark purple. I was really out of it. I guess there was even times when I wasn't breathing and I started arching my back which I guess is a sign of neurological problems. But my brain is fine for now... look at me... I'm blogging! I spit up a lot of stuff out of my mouth and nose and so Mommy and my nurse emptied my belly and decided to let it rest and then try it again with just Mommy's natural milk. I did a lot better on that.... still spit up some a little here and there but when it came time for my next feed I only had 9 of the 30 Ml that I was given still left in my belly. Please continue for me and my family. Mommy and Daddy are taking turns watching me to make sure I'm breathing (and flicking me in the foot when I'm not! Ouch!), and Aunt Nancy is on her way in to spend the night with me as well. It's always nice to have a doctor in the house. They're usually more useful than a cowboy!

These were taken after my crazy night during one of the few "alert awake and breathing well" times.

This last one was taken by Daddy holding the camera himself and reaching out to take the pic... can you get an idea of how small I am now?!??!?! I think I could fit in Daddy's mouth!

Urgent Prayer Requested!

Karen called me home from work tonight because Jacob wasn't doing well. His nurse is at the house currently and he's having difficulty breathing in his right lung. He's spewed out most of his last feed from over 5 hours ago and it doesn't look like he was digesting it or absorbing his medicine. The worst part though is that he's had several long periods where he's stop breathing all together and hasn't been able to be stimulated out of it. The nurse is giving us instructions on how to stimulate his heart as long as it continues to beat and after that... we're not ready to go there! Please continue to lift him up and pray that he is able to breathe steadily and tolerate his food and medicine! Thanks!

Day 119! Happy Mommy's Day!

No this is not a "cowboy donkeys" mascot hat... or a SanAntonio Spurs rally cap... this is a 10 gallon "Howdy Mother's Day" to my Nana and Aunt Melly in Texas! I really need to get out there someday soon... they say that everything's bigger in Texas... so I figure if I go out there.... I can gain back that weight I lost last week!
So today is the day that me and my brothers have been waiting for for days! You see, we got Mommy presents and she's been trying to get us to tell her what they were all week. Every morning Jonathan would come out of his room and ask if it was Mother's Day yet. And of course today's the day and he decides to sleep in! Turns out he's not feeling well and had a fever all day. But we did get to give Mommy her card and Joshua and Jonathan got Mommy some pretty pink gardening tools to help her put her pretty flowers in the ground. But of course, I got her the best present of all. (Ok, Daddy helped) I got Mommy a pretty silver necklace with a charm on it with my baby picture in it. And of course she loved it! Now I can be with her even when I'm not right with her... which isn't often!
We headed off to church where me and Daddy wandered the halls most of the morning because I was fussing. We did watch Mommy read Psalm 27 in church today.... well most of it... that's my verse (27:14 "Wait on the Lord and He will strengthen your heart") but Mommy didn't make it that far before her eyes leaked all over and someone else had to finish for her. Jonathan started his "sleeping tour" by falling asleep on Mommy's lap in church. After church he continued it by trying to fall asleep on Gramma's dining table and then was successful at falling asleep with Daddy in the bedroom for a couple of hours. He continued his tour by falling asleep on the couch with Daddy again after watching the end of Mary Poppins. Mommy says she felt very much like a Mommy today when she had me asleep on her chest and Jonathan on her lap and Joshua curled up next to her watching that silly movie with all the soot-covered men dancing around on rooftops! She also felt very much like a Mommy when she had to clean up Jonathan's puke later on after we got home. See I'm not the only one around here who spits up from time to time! So after a bath, Jonathan finished off his sleeping tour in his own bed with a bucket just in case!
I bet you didn't know that God talked about my Mommy in the Bible did ya? Well He did... it's in Proverbs 31:
" A wife of noble character who can find? She is worth far more than rubies. Her husband has full confidence in her and lacks nothing of value. She brings him good, not harm, all the days of her life. She selects wool and flax and works with eager hands. She is like the merchant ships, bringing her food from afar. She gets up while it is still dark; she provides food for her family and portions for her servant girls. She considers a field and buys it; out of her earnings she plants a vineyard. She sets about her work vigorously; her arms are strong for her tasks. She sees that her trading is profitable, and her lamp does not go out at night. In her hand she holds the distaff and grasps the spindle with her fingers. She opens her arms to the poor and extends her hands to the needy. When it snows, she has no fear for her household; for all of them are clothed in scarlet. She makes coverings for her bed; she is clothed in fine linen and purple. Her husband is respected at the city gate, where he takes his seat among the elders of the land. She makes linen garments and sells them, and supplies the merchants with sashes. She is clothed with strength and dignity; she can laugh at the days to come. She speaks with wisdom, and faithful instruction is on her tongue. She watches over the affairs of her household and does not eat the bread of idleness. Her children arise and call her blessed; her husband also, and he praises her: 'Many women do noble things, but you surpass them all.' Charm is deceptive, and beauty is fleeting; but a woman who fears the LORD is to be praised. Give her the reward she has earned, and let her works bring her praise at the city gate."

Mommy, you surpass them all. You are blessed and we are blessed to have you as our Mommy! Happy Mommy's Day to you! And Happy Mommy's Day to all you other mommies out there in the world!

Day 118!

Rough night. I had a hard time with my new tummy med and my new formula.....too much new...I am a creature of habit so I think it was just too much for me. I will hopefully adjust...after I spit up a little here, have some gas there, tough poopies over there.....I'll get throgh it though...I'm tough!...and this will help me be tougher.

Miss Jennifer Santora (one of my fabulous photographers....see the beautiful pics on the right side bar at the bottom....that is her work....amazing!) came over for another photo shoot. As you can see, her pictures were amazing last time so I thought I would give her a little bit of a challenge.....a crying baby....try and make those pictures awesome...she was up for the challenge though so we'll see.

After the photo shoot, I was tired from all my fussing so Mom and I took a nap while the big boys went outside and played superheros....Joshua=Batman, Jonathan=Superman, Daddy=Wolverine....quite the battles. We headed off for an early dinner at none-other-than APPLEBEE'S....Jonathan's favorite. We all ate like champs. When we got home, our neighbor Kaitlyn and her friend gave us a concert in their yard....cute girls. Daddy headed off for a night out with the boys....he left me here where the girls gathered....awwwwe DAD??!?!...what's up with leaving me with the girls again....how am I ever going to get super manly if I don't play Hold 'Em?!??! Girls just sit and gab, each chocolate and talk about baby weight....what I would do for that baby weight!

Day 117!

Yet another day God has given me...Thank you Jesus! So after a night of Mommy dreaming crazy and waking me up for a change, Mom packed me up and off to see Doc. Not so hot on the scale this week...I am down a couple ounces which is not too surprising considering my little fat face episode and my low calorie intake for the week. I am down to 5 pounds 12 ounces. But I didn't plummet so we are ok. We are working on how to get me more calories with less volume and see how I tolerate that. Doc noticed how tired I am and how much this past week took out of me. He also noticed my raspy sounding cry...he said that could be because of my tube. I have been getting a really dry mouth and lips so Mom has to make sure to give me some kind of moisture on my lips and a few drops of H2O in my mouth just to keep me moist. After I visited Doc, I headed to the mall to visit my JC Penney fans and let them do a little 4 month photoshoot. Mom is always telling people about me and the blog so I think we recruited a few more fans....gotta love the fans. We headed home and I got my bath. I was pretty tired and I even took my binki for the first time in like a month...I couldn't have it before because of the snot in my face. Mom told me most babies are weaned from their binkis but she wants me to have mine so I can keep working on my sucking....I didn't realize how much I missed that thing until I got going on it....I didn't want her to take it out!

Mom did some phone calling to all my wonderful NICU nurses to see if they know the special formula for Mommy's breastmilk to make it 27 cal. Of course they knew...they are awesome. So they gave us the secret formula and now I can try to get more calories in me without all that fluid. We'll see how my tummy does.

Gramma and Grampa took care of us again this evening....they are so good to us. They brought over pizza and some love :) Gramma likes to hold me and I like to be held by her. So it's off to sleepy land for me.

Don't forget Mother's Day! You'll thank me for that reminder later :)

Day 116!

Guess what I did? I actually went in my swing....and enjoyed it?!?! Mom put me in it while I was calm and awake and I just hung out in it for like 2 hours. I dozed off every once in a while. Dad came home from taking Joshua & Jonathan to the YMCA and he didn't know where I was....he even wanted to know if I was medicated or something. It was pretty nice. I kept trying to look backwards out the window. I may even try it again some day. I was awake lots today. I enjoyed all my black & white play things and fussed a bit too. Mommy's friend Amy came over to visit Mom for the evening....me too.... she held me while Mom did some dishes and picked up a bit. I am still poopin' like a champ...I pooped all up my side and then when Mom got me nakie to change me, I turned on my cat-like speed and reflexes and stuck my hand in it and smeared it on my chest...fun stuff...smelly but it comes in such a great shade of yellow and I was missing my yellow complexion I guess. I got washed up a bit and then rested for the evening. I slept close to Mommy who was acting funny in her sleep. She told me she kept dreaming I wasn't breathing and so she was up checking on me all night....she needs to relax a little bit more....there's a good idea for Mother's Day. Have a great Friday!

Ok...last post tonight.....WE HAVE POOP!

I promise....last post of the night....I was in bed, I promise....I was just resting my head on Mom, she was out cold, when I puked a litle on her. Now, I puke for 2 reasons: 1) too much food at one time and 2) I am pushing so I can poop and if this is during a feed, I push my food back up out of my mouth. Guess which reason it was.....Mom awoke from he beauty sleep to sniff the wonderful aroma I had created for her.....LOTS OF POOPIES! Go pooper!...just call me the Madd Pooper! Thanks for the stinky prayers :)

For the last time "GOOD NIGHT!" :)

THANK YOU BLOGGERS!

ok....so I stayed up a little longer than expected to catch up on some of my bloggerfriends. THANK YOU soooooooooooooooooooooo much for requesting prayer on my behalf in your posts. I am overwhelmed by the blogger lovin' goin' on here. I managed to comment on some of them. I don't know what else to say but "Thank you."


Also, thank you to those of you who do not have blogs but you pray and share me with others in a different way.

"Jacob Fans" are the best fans out there!....we should have t-shirts or something...:)

Check out some of my friends (bottom of my sidebar thingy after all the videos)

Day 115!

After a pretty good night sleep, I had a nice lazy day. I just rested, got a bath, and slept. I had a little poop come out today....with some help from Mom....the whole thing was kind of weird for all parties involved so we won't go into details BUT (get it? BUTT:) I had a little success. My peeer has worked all day too. Gramma and Grampa brought over some dinner which was nice. I just chilled on the floor and then Gramma, also known as "The Clicking Lady" picked me up and clicked, tickled me, and sung to me. Then my breathing went funny....I just needed more rest. That's just what I am going to do: REST! Good night.

P.S.~ Thanks for visiting me and loving me through my blog.....we went well over the 100,000 mark today.....woo-hoo....WAY TO GO MY FANS!

Day 114!

What a turn around. The last two days have been really hard on this little 6 pound body of mine. But I am tough and God has granted me strength, and those who care for me, wisdom and love.....I seem to have made it through a tough time with all this support. THANK YOU for all those prayers!.....keep it up! My peeer works regularly now...pooper still needs some work but it may take a bit to readjust to breastmilk. Apnea spells have been less frequent.....still happening but a little less intense. So, I just have to tolerate my feeds and poop and we'll be good.

As I had said before, Gramma showed up early this morning with some donuts and helped out a bit. Miss Ann Marie came out and examined me and was impressed with my progress. She will be checking in on me all week....she just can't stay away.

So then, Queen Comfy (Busia) stopped by with lunch groceries and spent a lot of time with me......she was so patient with me......I just did not feel well and my insides were uncomfortable and although I was on Queen Comfy and sleepy, I just could not relax. She rocked me and patted me and sung to me and just loved me with everything she had.....I took it all in but my body just wouldn't let me relax. But then, at about 5:00pm God answered our prayers and I rested so well....it was like someone flipped the switch. I have been comfortable and able to rest since. I am still weak but I managed to even have calm awake time with my zebra print. Joshua and I played "I Spy" under my new black and white play set....I'm a pretty good spier when it comes to black and white. Aunt Nancy and Uncle Kevin came over to visit for the rest of the evening. It was nice. Aunt Nancy just thinks I'm so cute....who can blame her?!?! I enjoyed it....which feels great after these last two days. I am comfortable.....thank God!....He is so good!

No news on Noah.....he was supposed to have tests today but you know how test scheduling at the hospitals can go....you never get in when they tell you......so just keep him and his family in your prayers.

Well, considering all that has happened, I need to get my rest....Mom is waiting for me here so I should go. Talk to you tomorrow, Lord willing. Sweet Dreams....don't let the bed bugs bite!

Nurse came...

So Miss Ann Marie came. I lost a half pound of fluid! Obviously, that's why I was so uncomfortable! I am resting more comfortably now. My color is still off. I'm a little lethargic...just tired from not resting well. My temperature is back up. I am on plain breastmilk and we will very gradually increase volume so long as I tolerate it. I just have to keep peeing....so we are not out in the clear yet. My nurse said that I am still pudgy so I have to keep this up...one pee is good but we can celebrate when I get back to normal....what ever that is. Ok...well on with my day....and you on with yours. I'll keep you updated....just pray for more consistent pee. Thanks!

We have Pee!

I woke up this morning and my diaper was wet from front to back! My peeer is back!....well my peer worked. We'll see how I do throughout the day. I was up lots last night just uncomfortable. I am resting well now. My neck is still a little poofy but it's nice to have my knuckles back! My nurse is coming out to check on me still. Doc called to check up on me and he said he will see me if we want to or we can wait.....he loves me. Keep praying that this was just a fluke and doesn't happen again.

Gramma couldn't sleep so she came out early this morning and brought donuts....my brothers love that....they may get in their heads:
Jacob + fat face = donuts!
It should be: Jacob + donuts = fat face!

My Aunt Nancy's little friend Noah (1 1/2 yrs old) is going for all sorts of tests so just pray for him and his family.

Day 113~ Happy 16 week birthday to me!

So, even though I've had a couple hard days, we still managed to celebrate with some ice cream and strawberries. Gramma and Grampa came over for some dinner. Gramma's eyes were real leaky. I was very calm all evening which was quite the change from earlier. I have been weak and uncomfortable....my cry is so weak....it gets me some real good pity parties. I have not peed in a while. I feel cooler. I just am not myself. Mom has what she can under control....God's over it all. I just hung out all day and tried to relax. Dad and the boys were outside for a bit working on the new basketball court. Jonathan ended up in a tree....no big surprise there. Mom and Dad had their relaxation massages today....perfect timing.

So I managed to break the 6 pound barrier...not on good terms though....water doesn't count. We'll get the official weigh in at the end of this week Lord willing. My nurse will be out tomorrow to check me out again. I will go see Doc if I have to as well. Mom trusts their judgement to wait on the lasix....she knows they care about me and want to do what they can to help.....they have been so good to us in the past and great gifts from God and we will trust them through this.

So thank you for the prayers. We'll keep you all updated when we can. Please send up a few prayers for a little baby boy who is a friend of my Aunt Nancy....he had a seizure last week and now today he had 4 so his family is on a scary path right now as well. Thanks!

Gotta get some rest. Talk to you later. God Bless.

No lasix....just wait...

So Miss Ann Marie came out and talked with Doc. They agreed that lasix right now would be a bad idea because I am not pudgy enough and they are afraid they will dehydrate me. SO we have to wait and see what happens. Miss Ann Marie will be out first thing tomorrow morning.

"Wait on the Lord; Be of good courage, and He shall strengthen your heart; Wait, I say, on the Lord!" Ps. 27:14

I rested comfortable this evening. We have some oxygen in case my apnea spells increase too drastically....I cannot be on oxygen all the time because of my heart condition.....so just if I need a little hit of the good stuff, Mom will hook me up....after she takes a hit herself!

I will be on straight breast milk (not fortified) next feed and we'll see if my pooper and peeer kick into gear.

Keep praying! Thanks!

I'm pudgy! Please Pray!

Hi guys. Please keep praying for me....Mom thinks I'm retaining fluid....I am pudgy fat boy....definitely not like me. The nurse is on her way to assess things and hopefully get me a script for some lasix....that is what Mom thinks. I am uncomfortable and unrestful but yet I am exhausted.....not cool. I'll keep you updated. Thanks!

Day 112!

I'm tired. I'm cranky. I'm miserable. I'm having trouble breathing... when I'm not screaming. I'm exhausted. I'm freaking Mommy out. I'm weak. But my heart is strong. We're al trusting God to take care of me.
In the midst of all this we attempted to get to church today.... didn't happen. We did get to go visit Mr. Rob and Mrs. Tami and their new baby boy Ryder! He's 9 days old and already twice my size! He's going to be a beast! He made me look bad not only with his size, but he's as red as a jelly bean. Ms. Tami and Mommy said that when you put the two of us together we look like Christmas - Red and Green! We hung out and pooped at the same time, slept at the same time and ate at the same time. Did I mention that he's also a showoff? Yeah, he was flaunting his ability to drink from a bottle! That's ok! I like my tube! Less work!
Mommy got so nervous about me when we got home that she called one of my nurses out to check on me. She said that I look tired, exhausted, miserable, but that my heart is strong. She thinks that I should take it easy with my feeding for a bit. We're going to cut back on some of the volume and switch to PediaLite for the next 24 hours. Mommy and Daddy decided to let me watch some TV tonight so that I would fall asleep and get some rest. I'll talk to you tomorrow!

Day 111!

111! I hope you don't know what they call that in bowling! Let's just say if you get a 111 in bowling the scorekeeper puts two little angled lines on the top to form what looks like an outhouse! I bet Daddy wishes sometimes he could change my diapers in an outhouse cuz man can I stink up the place lately! Woo Hoo!
I think I exhausted Mommy last night ...so she woke Daddy up to come and change my diapers while she got some rest. I was pretty fussy so Daddy put me in my bouncy thing while my brothers watched some silly movie about police men and firefighters... it bored me to sleep.
Ms. Julie the art therapist came over to start a major project with my brothers. First they painted some gems (different kinds of macaronni) and then they designed their own shields for battle! Unfortunately they ran out of time and weren't able to glue their gems on their shields... but there's always next week! We'll keep you updated!
Afterwards we headed to Aunt Josie's house. My Daddy and brothers headed off to the comic book store with my cousin Matt-Man because it was free comic book day and I stayed back with Mommy and Aunt Josie. Well... not just Aunt Josie... you're never alone in Aunt Josie's house... there's wild animals prowling around seeking whom they may devour! That's right... she has cats. Mommy's not a huge fan of cats because they make her eyes water and her nose sneeze. I'm not a huge fan of cats either because they try to get in my car carrier (even though I HATE it I'm still protective of my stuff!). And as if that's not bad enough... this one cat... I think they call it the Killer Beast... or maybe Chloe... snuck up and started checking me out. I tried to feign indifference when really I was pooping myself. No really. I was pooping myself. I do that a lot. Anyways... she starts sniffing my head, then my eyes, then she got down to my nose and then my mouth. At this point she opened up her mouth as if she was going to eat me. Good thing Mommy and Aunt Josie were on to her viciousness and swatted her away! Whew.
We dragged my brothers away from their first introduction to a Wii (I don't know what the big deal was... I wee all the time!) and took them to Gramma and Grampa's. Then me and Mommy and Daddy went on another dinner date. Afterwards we went shopping for black and white fabrics to make a flip book for me to look at. While at the store Mommy and Daddy ran into some friends from the past. One of them was Mommy and Daddy's ring bearer in their wedding. They said he was a lot smaller back then. I hope I grow like that!
The rest of the night consisted of me being fussy and having trouble eating and sleeping. Please pray that things get better as I'm not liking this at all!

Day 110!

I had a pretty good night last night....although I woke up like Mommy does...VERY cranky! I cranked almost all morning until my nurse, Miss Stacy came to visit. It was the first time meeting her. She was really nice and knew all about me from all my Essential Care friends who faithfully follow me. She checked me out and said Mommy and Daddy are doing a great job. We may see her again next week too. She was easily scared though....I filled my pants and she was out the door before I knew it....that's good to know in case she comes in with some needles or something.

Once she left and I filled my diaper I was no longer cranky...so I slept...the whole day away (not good for Mom!)

I then played under my new little black and white gym thing Mom got for me....I loved it! It has some red in it...I was just soooo busy looking at all the contrasting colors.....it was great!

Miss Sue came over and brought Mommy and my brothers some dinner....how nice. I decided that I had enough visual stimulation and I knew Miss Sue was dying to hold me so I fussed. And sure enough, she picked me up and held me for hours while Mom got the boys in bed and did some other things that require two hands. Miss Sue loves babies and she especially loved the fact that I was keeping her warm. It was a great trade off. I did some showing off and showed her how I snore and sleep with me eyes open....she loved it all.

Well, time for some grub. Gotta run. Have a great weekend!

Updated Pics

Just wanted to let you know that Daddy helped me get updated pictures on the previous posts so go back and check 'em out. There are funny ones, scary ones, silly ones...just look for yourself. Talk to you later.

The Balance Beam

Hi y'all. It's me Karen, Jacob's mom. I have never voiced myself on the blog....I am not much of a conclusive writer....I just go on and on....hence the multitude of periods (Jacob gets that from me:) Here are some thoughts that require no solution....be mindful of this in your comments. This kind of talk always bothers Jason, as it may many of you. He is such a good listener but he is also a fixer. I am not looking for a solution. I may think at times that I am (like 2am on blogger). I am just feeling and sharing. This is why Jacob had to post this and not Jason!:) I envy Jacob's voice here on blogger to say how "he feels" and I envy Jason's ability to write such amazing messages from God's word. I haven't spoken much about my feelings....I just am joyful....not always happy but joyful. In the moment. Loving my life God has given me. Taking care of my beautiful boys....I love it and wouldn't trade it. It can be hard....but I have true joy from the Lord. Secure in the fact that I am loved. Maybe, just maybe, someone who is searching for some comfort in confusion will stumble upon these jumbled words from the mind of a mother who is balancing....

I have found myself searching blogs of other families on two very opposite sides of the spectrum....those who have lost a child and those who have a child who is thriving beyond what anyone could hope for.

I balance: the preparations for loss vs. the hope for a miracle.

I hold Jacob all the time. There are times when it feels like there is nothing that could possibly take this beautiful baby that God has entrusted me with. No Way! We danced tonight....just me and him. There is no way I will not have that dance again with him at my sister's wedding in August....there is no way I will not have that mother & son dance with him at his wedding.....He will grow old....God will grant this wish. He will. He can. He does miracles and the fact that I have had Jacob for 109 days is a miracle....so why stop there? Heal him.

Then there are the tears I shed writing these words. That symbolizes the realization that we must prepare for his passing. Many of you say, "No, enjoy him." But doesn't that thought of him passing just make me enjoy him even more? It is the fact that he will pass that makes us treasure the time we have......he is loved maybe more so....to get that lifetime of love in his short time. I sleep with him on my chest hoping he will snap out of his apneic spells, hoping that his heart will keep working, hoping that his meds keep him from further problems resulting in death.......yet knowing that he will die....I do not know how or when but I know he will. There are days when Jacob seems weaker...I just whisper in his ear, "Not today, baby, please, not today."..... as if there is a better day for it

So, at times, I struggle on this balance beam.

Please...do not get me wrong....I trust. With every bone in my body, I TRUST!

I do all I can for my children.....I try to make the best decisions for them. Oh, how I wish for the thunderstorm to come and my children to run into my bed and need me to comfort them. My Perfect Parent, Our Heavenly Father, does a much better job of parenting me. I trust Him fully. He is perfect. He gives and takes away. Why? So we love Him more. So we worship Him more. So we draw closer to Him. So He can hold us. So He can hold me close to Him during the thunderstorms.

I know Jacob is going to pass. I hope he won't so young but WE ALL will pass. God looks at us like I look at Jacob. He knows we are going to die. Just gazing at us lovingly wanting to make the most of us while here on earth. He has blessed me with this beautiful perfect picture. So it is not a matter of "why me." It is "thank you Heavenly Father, for opening my eyes to see what you see in me. Thank you for choosing me."

So I trust. Circumstances will not change that.

But that balance of hope and preparation...I just don't get it.

As I sit here writing, with my beautiful baby boy in my lap, all I can rest in is God's love letter, His Holy Word, to me, His baby girl, who rests with His arms wrapped around me and guiding me through this precious life.

His Love Letter says in Psalm 27:14 "Wait on the Lord; Be of good courage, and He shall strengthen you heart; Wait, I say, on the Lord!"

How I have clung to this verse. Since October 3rd, 2007 when we found out Jacob had a heart condition to January 17th, 2008 when the genetic test confirmed Trisomy 18 to today, May 1st......I have waited on the Lord and, oh, how He has strengthened me.....He is not finished and I hope to find balance while waiting on Him......

So how can you prepare? I've been told by those who have experienced loss that I cannot prepare. But yet I want to. I struggle to. I must wait, be of good courage and be strengthened. In that, I am sturdy and cannot falter.

Love to all,

Karen

Day 109!

Well my streak of good night sleeps has come to an end.....I fussed lots for Mommy...she has been having me sleep in my boppy instead of on her so I missed her and I thought that if I fussed, she would hold me close on her chest....it worked.

Busy day...we went to the YMCA to see my big brothers swim....takes me back to my womb days of bubbles in Mommy's tummy. We then headed to the library to get some books on tape....me and my brothers listen to them at rest time.

Before it began to rain, we had a good old family game of hide-&-go-seek. Mom and I were stealth like...except for those times when I would have an apneic spell and then cry....Joshua tried to quiet me but it is hard when you can't breath....and I wasn't even the one running! But Mom ran all over real sneaky like with me in my little tummy sack. All the bouncing made me puke after a while so Mom and I headed in to make lunch.

Miss Maureen with CompassionNet came over to visit and see how we are doing, how the services they provide us are working, and pick up some receipts. She was so thoughtful....she saw that we like Castanzo rolls and on her way over she picked some up for us!...so sweet! That is what we love about everyone we are working with...we are more than family in a file folder; people think of us and care for us and do their best because they have a heart to serve us. Thank you. Then Miss Michelle, my massage therapist, came over and rubbed me down....oooooooooooooooo how I loved that. Some times it doesn't set right with me but today everything was great. I just lounged in my bouncer and she just rubbed, and rubbed, and rubbed, and kept rubbing and forgot to look at the time! I wasn't gunna say anything!

Mom and I did some dishes. Gramma and Grampa came over and took us out to dinner. Then just me and Mommy came back for my bath while Joshua and Jonathan went for ice cream desserts. I did ok in the bath.....sometimes I love it and other times not so much....tonight was a little bit of both...didn't like it when Mom put me in water that was too cold but then when she warmed it up, I enjoyed the water running down me.

Boys are in bed, Mom and me hanging out, watching that Grey's Anatomy show...I forgot to tell you I got my first dose of it last week.....I wasn't sure if I would go back for more....all that blood and stuff got my tummy upset....so I just slept through it this week.....that stuffs not for kids anyways Mom!

Busy busy busy. But over all a good day.

Coming Soon: I will get Dad to help with some pictures....Gramma and Grampa had some and we have some.....just take a look at the older posts that are naked and they will soon be decorated with me.

Have a great weekend!