BAYBEE...

Morgan was moved 4 floors down to the continuing care nursery!!! WOO HOO!! She's really stable and GAINED weight for the first time since birth. She's 5 lb, 3 oz -- just 3 oz shy of her birthweight. I did not get to visit until later in the evening which I was very upset about but I needed to rest and Jack needed a day at home too. I feel so torn and can't wait until she comes home.

Jack was allowed to visit his sister for the first time. He looked right at her and said "BAYBEEEEE???" We laughed -- he was so cute. His face lit up with excitement. He's in love already!

Jack and Morgan sent daddy a goodie basket at work to say happy birthday! He loved getting a present from them!

Let's continue to keep our fingers crossed that she'll decide it's time to take the bottle and COME HOME!!!

Family Update!

Hi everyone! If you see Jason today wish him a happy 29th birthday!!!!!!!!!!

HAPPY BIRTHDAY DADDY, WE LOVE YOU!!!!!!!!!!!!!!!!


Daddy and Jack at Bob Evan's

Daddy Changing Morgan

Mommy feeding Morgan

Thankfully Jason took another day off from work yesterday. I am so, so, so grateful for that! I am still in A LOT of pain on occasion...I need to take pain meds on a more regular basis instead of when I start to feel bad. Also I know I need to rest -- but as we know from before having a babe in the NICU makes it tough. There's no place I'd rather be than with my children.

We went to visit Morgan while my mom took Jack to school...only to get a phone call saying that Jack didn't have nursing coverage! I burst into tears while holding Morgan. I think I startled her nurse...(oops) Jason offered to go get Jack while I stayed with Morgan -- but I wanted to talk to Jack's teacher and of course see my little man so I left too.

When we got to school his teacher met us in the hallway -- Grandma was in the classroom with Jack and daddy was watching Jack through the window. Miss L. said there was a little girl at school who was diagnosed with an MRSA skin infection and she though we should know right away because I have an open incision and of course because of Morgan in the NICU. I broke into tears for the second time in an hour...I made Jack's teacher tear up too! NOT my intention!! I thanked her for the information and told her we would call the NICU right away and see how to handle the situation. One good thing (and to think everything happens for a reason) Jack had been sick and out of school almost a week and yesterday when he returned the little girl with the MRSA infection was NOT in school...so his contact risk was as low as it could be...which is exactly what the NICU said when we called. THANK GOD.

Meanwhile Jack was working with the PT and when they opened the door he was walking with forearm crutches (with help) towards me!!!!!!!! His face was priceless! He LOVES them! He went all the way down the hall with help!!! How amazing!!! I immediately went into PT mommy mode and excitedly asked if they had any extra crutches that we could borrow...we went back to the gross motor room and YES -- she found some for us!!!!! I can't tell you how awesome he looks with them. I had always heard crutches were hard to learn and you have to have very good balance and motor planning to use them...something that comes with age and practice. I can't believe how great he did on his first try. OH AND GET THIS...HE DIDN'T HAVE HIS BRACES ON!!!!!!!!!!!! Grandma isn't too familiar with putting his braces on and since he was still sleeping when we left I told her just to use his regular sneakers for today. The PT said she was amazed at how well he did and we should try this on occasion without braces to help build strength.

When we got home I wanted to call the nursing agency and demand better knowledge of when Jack will not have coverage. I asked Jason to call because of my weepiness...I didn't want to cry over the phone. As we were walking in Jason realized he could not find his wallet. We looked EVERYWHERE. No where to be found. I was starting to feel nauseous from pain and Jack was crying, and I missed my baby girl...a low point in the day. We called all of the credit card companies and our bank and reported the lost wallet. Now Jason is without ID, or means to buy anything! We share most of our credit cards so that means mine were cancelled too. I gave Jason the only card I have and I'll use our bank card...(we never carry cash anymore). So now he has to get a new driver's license and stop by the bank in all of his free time. UGH.

I HAD to get back to see Morgan so after Jack has his afternoon snack we went right back to the NICU. We haven't let Jack back to see Morgan because we know how important it is to keep the little babies healthy. So daddy went back first and Jack and I hung out in the Ronald McDonald Family Waiting Room. We spent countless hours in that room when Jack was little. It's so strange and familiar to be back there again. Only this time we know Morgan will be okay...there is no life support or neurosurgery...no question of future outcomes or mortality rates...just a "feeder and grower" a term I was so jealous of when Jack was in the NICU!

Morgan is doing great. Her only remaining issue is bottle feeding. She's been nippling some, but not drinking a whole lot through the bottle. Although when she does, her suck/swallow/breathe reflex is great...she just tires quickly and we give her the rest through the tube. We are still looking at next week for homecoming!!!!! Please cheer Miss Morgan on -- and she'll be home soon.

We stopped at Bob Evan's for dinner because Jack kept telling us he was hungry!! I forgot you can order breakfast there all day so that's what Jack and I did! He ate like a horse and we had a nice time as a little family...and it makes me anxious to have Morgan home and a part of our little family too.

When we got home on our kitchen table sat a perfect pink cake with tiny little confetti...in our refrigerator there was a huge lasagna, salad and bread sticks as well as a big chicken pie and broccoli salad...Steph and her family have provided us with dinner for the next week! Again, I teared up but because I was happy this time. I am so grateful to have my friends and family. Not just in bad times, but good times too. To my friends - I love you and you mean the world to me! To my family - I am so grateful to have a wonderful family and to have married into such a great family as well. We are surrounded by the most amazing people and I am so glad my kids will know this kind of love and support. Thank you all so much.

Miss Morgan Leigh...

I was discharged this morning and am happy to be home but a little sad to have left without Morgan. She's expected to come home in about 7-10 days.

Morgan was moved from the NICU to one of the crib rooms this morning! YAY! There's 4 babies and one nurse. It's still part of the NICU -- but a step in the right direction (towards the DOOR...lol)

She needed O2 for 24 hours, antibiotics for 48 hours, and still has her NG tube. She's regulating her temp very well, and we expect her to be in an open crib really soon!!!

They upped her feeds again to 40 ccs every 4 hours. Which is great. She's on 22 calorie formula. She lost some weight but as we know all babies do that.

I am recovering from the c-section with less pain than last time...although when the pain meds wear off I KNOW IT! Some day I'll tell the whole story! The hospital staff was excellent and of course the NICU staff is superb and so many of the nurses and dr's remember us. It felt a little like coming home.

Today is Blogging Against Disabilism Day. Since Morgan's surprise arrival I haven't had a chance to work on putting my thoughts together. Please, stay tuned for that post a little later!

Trip to the NICU

First Diaper Change!

Morgan's Surprise Arrival!

Angie gave birth to Morgan Leigh Wilhelm on Saturday at 4:54am. At 34 weeks and 1 day, she weighed an impressive 5 pounds and 6 ounces and is doing great. Morgan is currently in the NICU for some rapid breathing and monitoring as well some NG tube feedings. There is a chance that she'll come home with Angie on Tuesday if she eats well enough. Angie is recovering nicely from her C-section and is thankful to be in the same hospital as Morgan. Jack is excited like everybody else and is definitely interested in his new little sister.

Jason

Little Loren

I met Nelba probably close to a year ago. She and her family live in South Africa. She is one of the most insightful bloggers I have met on this journey.

Sadly, her young son Loren passed away today. His journey on Earth has ended. His story will live on through his family. They have touched our lives and words cannot express how sad and shocked I am to hear of his passing.

Please, take a moment to visit Nelba's blog.

My thoughts and prayers are with them.

Very Sick Little Man...

Pneumonia and double ear infection. Sheesh.

Jack was sent home from school yesterday with a fever of 101. My mom brought him home for me and we changed him into his jammies and watched him a little. He had a runny nose for about a week -- with no other symptoms (fever, cranky, etc.) but he developed a chesty cough yesterday.

All night we rotated Motrin and Tylenol and at several times his temp was up to 102+ then this morning at 6:30 (he had BOTH meds in his system) his temp was 104.5! We put him straight in the bath tub and called the ped. His temp came down to 101 after the bath but rose again to 103...when the dr called back she asked how he was doing and at that time he was pretty miserable but holding his own. She said to bring him in to the office when they opened.

Jason is also sick and stayed home today -- thankfully because I don't think I could do this myself at this point.

We're to cycle Tylenol and Motrin for 24-48 hours and give Musinex every 4 hours as well as Augmentin 2x a day. We also got a referral to an ENT because of his recurrent ear infections...our appointment is May 1st.

His breathing is okay -- he has a very wet cough though. Poor sweetie pants....I've never seen him so run down. He's vomited a few times due to coughing so hard.

So we're watching closely and praying for no seizures...

Mel, I am honored and can't wait to do some nominating as well!

Things...

I am running on ZERO sleep. Jack for whatever reason decided to get up for the day at 3:30 am. This is after struggling/fighting to go to sleep last night. He rarely, if ever sleeps through the night. He is still in our bed -- I am too afraid of a seizure striking in the middle of the night and him being all alone and not being able to intervene. Most of the time he wakes up happy which is a good thing, but nights like last night he woke up very upset and insisted on getting up. So we did -- at 3:30 this morning Jack and I were watching the news and eating cheese-its for breakfast...we had soy milk too as to not feel too guilty. I was too tired to make anything else! Several hours later Jack asks for his trio of breakfast foods -- "Nana? Cereal? Bacon?" or to sound it out like Jack "NaaaaNaaaa? SheeSheeShall?, BayBay?" He had his meds and then asked for "Bed" or in Jack speak "Bee?" He ends everything with a question and the longer I wait to respond the more you can hear the pleading in his voice. So he went down for a nap and is still sleeping. I, on the other hand, took time to shower and eat and now I want to sleep too -- but it's soon time for Jack to wake up. Today will simply be a tired day. I look at it as practice for the weeks and weeks of sleepless nights once Miss Morgan arrives! Which will be in 27 days if anyone's counting!

I love this picture -- he looks like he's trying to hold up the house. He shouted at me as if to say do we HAVE to take a picture? I can't hold on much longer!



The Mommy Monster!!

A rare and interesting specimen captured on film....

As for me, I am feeling VERY PREGNANT! I can't get comfortable and just when I do, I have to get up to pee. I have terrible indigestion, gas, constipation and the occasional contraction coupled with karate chops from Morgan!! I love every minute of it though and wouldn't trade it for anything. I count every moment as a blessing -- I am now nearly 34 weeks (tomorrow)!!!!!!

Here are some shots of the room -- almost done!!





Jason is doing well -- I often forget to update on daddy...lol! He's working so hard all week long and then does so much around the house that I wonder how he's still standing some days. I promised him one day soon we'll get a break...may be wishful thinking more than a promise but I think he knows that.

Blogging Against Disabilism Day

May 1st, 2007



We will be participating.

Interested?

Blogging Against Disablism Day

Thanks Jacqui for sharing this!

Spent a few hours at the hospital last night....

Last night after dinner I started having contractions -- not overly painful, but very strong and regular...my tummy would get rock hard from the top all the way to the bottom. I called nurse triage and they felt I should be seen in Labor and Delivery for monitoring especially with my history.

We left around 8:30 and had to take Jack with us -- and he behaved sooo well despite being overly tired. They hooked me up to the monitors and saw my contractions coming every 2 mintues or so. They weren't painful, but I was scared and they weren't exactly comfortable...I gave it a 3 on the 1-10 pain scale.

I was examined interally and absolutely no cervical changes were noted. The baby looked really good and remained active with a strong steady heartbeat...showing no signs of distress.

Around 11:30 I was still having some contractions but they weren't like they were earlier. The dr. said this was all normal and I could go home. He explained how the uterus is a giant muscle and it contracts regularly only I am feeling it because if how much I've grown. He said if I notice ANY CHANGES in the intensity I should come right back or if I notice any blood or discharge.

We got home and I took a warm shower and got in bed. I didn't remember having any contractions while I slept and so far this morning I've had just 3.

I left with instructions on how to do an official fetal kick count (twice daily after breakfast and dinner) and this morning she moved 26 times in 30 minutes and has been quite active...which is a relief.

Jason went to work this morning and my mom is on her way over. I canceled Jack's eye appointment and I plan on resting the entire weekend.

Please pray for no more contractions and an easy 30 some days till Morgan's scheduled arrival!!

MAJOR MILESTONE ALERT!!!

Pinch me -- seriously!

I "tweaked" Jack's walker tonight -- took off the pelvic stabilizer and the right forearm support basically took away the extra supports...because he does well and I wanted to challenge him a little more.

Anyway, I turn for one second to get something and when I turn around Jack is getting himself up to standing in the walker. He placed his left hand and made a totally fair attempt at putting his right hand on the walker too. Then he took a step with it.

HE USED HIS WALKER TOTALLY, COMPLETELY, UTTERLY INDEPENDENTLY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I called Jason right away and he was so proud!

Anyway, Jack's doing it like an old pro now.

Oh, and to make it even more amazing is he didn't have his braces on (today was an inservice day and we made it a jammies day).

Again, I'll try to get it on video asap!

It's really amazing!!! He's really getting there!

Clips of Jack...

I wanted to share some video of Jack moving -- this may be of interest to other parents of children with spastic cp...

Nothing extraordinary but you can see how he has learned to compensate and use his high tone in his favor. You can also see the weakness in his hips by the way he brings his knees together when he's reaching forward with his back against the couch. I sometimes picture this could be the way he takes his first steps...



In this one he's trying to get up to sit in the rocker. He's been successful several times I just can't seem to catch it on film! This was a huge milestone moment at our house! I'll be sure to share the footage when I get it!



Please feel free to ask any questions!

Virginia Tech

I am saddened over what has transpired today at Virginia Tech. The worst shooting spree in US history -- It is horrible and shocking. I pray all of your children are safe and unharmed tonight.

Yahoo News Story

Zoom, Zoom!

We purchased a new car this weekend!

We traded in our Dodge Caravan for the Mazda5...

I Looooooooooooooove it!!! It's not quite a minivan -- and I saw Consumer Reports refer to it as a "microvan" and it's the best way to describe it. It's got more pickup and drives really nice! The inside is smaller, more like a car but the third row of seats folds easily and gives us the same amount of cargo room we had with the Dodge. The rear doors slide open like a minivan too!

Anyway, just wanted to share the great news! Oh, and when we brought it home we took Jack for a ride and he was so happy...he laughed like he was on an amusement ride! Zoom, zoom!

Mazda's website

I Went to Preschool!

Yesterday I spent the entire afternoon at school with Jack. There was a mix-up and the nursing agency didn't send anyone -- so per our agreement I stayed and kept an eye on Jack for seizure activity (which there was none).

I am actually glad I got to do this. I have spent a lot of time observing the classroom but haven't had the chance lately. Jack simply shined...so much more than I ever imagined. He didn't seem to mind my being there at all. I thought he'd head straight for me once he saw I was staying -- but he didn't. He looked over at me every so often and flashed me big smile but other than that he went about his usual day.

First they danced the chicken dance and then the hokey pokey. Jack spun around in his wheelchair and I had to hide my giggles because he was so into it! Jack's little friend M helped push his wheelchair around in a circle for follow the leader...they were under the watchful supervision of the PT :)

Then Jack sat in a little wooden seat for story time. They read a story about a monster under the bed that turns out to be a little brother instead! The kids were so cute. Jack had some trouble paying attention for the whole story but looked at the pictures and pointed to the eyes under the bed when asked.

He was sitting next to his best friend L. Little L is the cutest little girl! They have a special bond that the teachers have mentioned before, but I saw it for myself yesterday. Jack and L both have CP, L can walk but isn't totally verbal (has one word utterances just like Jack). She sticks close to Jack and Jack follows her everywhere.

Then it was time for free-play. Jack used his walker (VERY well I might add with NO HELP except getting up into it) to go over to the blocks area. He played with blocks, little people, trains, and then scooted over to the kitchen area to play house with little L. Jack made whooshing sounds and pretended to wash dishes...little L was helping to dress the Cabbage Patch kid. The PT was working with Jack during this time to encourage Jack to use both hands during play. She also stretched his legs.

Then it was story time again. Jack sat in a Bumbo seat next to little L. They read the Very Hungry Caterpillar. Miss L., the teacher showed the class the caterpillars in the jar that the mailman delivered -- they were eating some sticky stuff on the bottom of the jars. They talked about what the Caterpillar in the story ate and how BIG he got and how he turned into a chrysalis and eventually a big beautiful butterfly.

Then it was potty break time for Jack. Jack walked to the potty with his walker while Miss M. the aid helped him with his pants and diaper and helped him sit on the potty. Jack didn't go but knew the drill. Miss M. diapered Jack and then he flushed and walked over to the sink to wash his hands.

Then came snack time...Jack chose animal crackers and milk and politely asked for "More" and waited his turn. He knew to put his dirty dishes in the bin and to wait for everyone to finish. The speech therapist worked with Jack during snack time. Jack cooperated very well!

After snack Jack used the star cart to go outside. He immediately asked me for the swing, so Miss L. and I took him over to the swing. He loved every minute. It started to drizzle a little so we went inside and it was time for the goodbye song! The PT helped Jack to stand with just one finger assistance (sometimes holding his right hand) and sometimes just putting a finger on his right shoulder. They sang and then the kids got called one by one so they could leave

I'll tell you I was tired and a bit over stimulated after my afternoon at preschool! I don't give Jack enough credit and now understand why he's tired and hungry after school. It's a lot of work!

Well, speaking of school we're going to be late if I don't get him up from his nap!!!

PS -- I am still working on uploading pictures to our new albums!

http://jacksmom.myphotoalbum.com

The First Six Months...

A friend of mine showed me this video and I feel compelled to share it with all of you. It's beautiful and heart-wrenching...it goes to show we arrive at special needs parenting in so many different ways.

It also reminds us how devastating RSV can be and not only for premature babies.

The video made me cry.

Triplets, the first 6 months

We've Decided...

On a name for the Bean!!!

Morgan Leigh

We decided last night while getting Jack ready for bed. Today I asked Jack if he could say Morgan, and he came up with "Mo" for now...we'll practice a little before her arrival in 46 days!! He was able to say "Si Si" for sissy which sounds amazingly cute!

Jason and I have always been fond of the name Morgan. I suggested Leigh which is after her Daddy's middle name Lee. It fits and we're happy to have finally decided!

This weekend the crib is going in!!! I'll be taking pictures I am sure.

March Photos!

I am moving our pictures to a new site! I am starting with March and working my way backwards...

Let me know what you think!

http://jacksmom.myphotoalbum.com

All better...

After resting quite a bit and lots of snuggles Jack is feeling better. I really hope this is it for a while! Thank you all for your comments and well wishes!