She's Coming HOME!

Tomorrow, or Tuesday at the LATEST!!!!!!!!!!

We're frantically trying to find a store that sells Pregestimil -- I ordered some from drugstore.com and chose overnight delivery -- it's scheduled to arrive on Tuesday. The hospital pharmacy should be able to supply us with some, but it only stays good for 24 hours...let's hope we can find a solution!

They pulled her Central Line and she's on full feeds. I am so ready to have her HOME!! I'll update when we know for sure if she's coming home tomorrow or Tuesday!! She's taking her carseat test in this picture -- which she passed with no problems!

Hair Today...Gone Tomorrow

Several days ago before they placed the Central Line, the nurses tried one last time to place an IV in Morgan's scalp. In order to do this they must shave the area free of hair. So Miss Morgan had her very first haircut already at just two weeks old!

I had noticed it a few days ago and was sad -- it's a patch about two inches big! I knew it had been done to try to help her and there was no way around it! What I was upset about was not being warned or told it happened -- but again she needed it and I really did understand! Then I noticed something taped to her crib.

It made my heart melt. In all of the rush, some wonderful nurse kept a lock of Morgan's hair and pasted it to a notecard. A precious memento. It truly is the little things like this that make me LOVE nurses!

It'll grow back...and hey, let's face it, it wouldn't be the first time one of my kids got a bad haircut! So, although she's looking a little bit like George Costanza from Seinfeld at the moment -- she's still my gorgeous gal!

ENT, Neuro, and Morgan Update..

Grandma Josie and I took Jack to his ENT appointment this morning. As we suspected Jack will need tubes placed in his ears. I scheduled the surgery for June 6th. Hopefully this will keep him from getting those nasty infections! The dr. said he'd evaluate the need to remove his adenoids as well. They'll also draw blood to test for allergies -- all while under anesthesia. He said the longest part of the entire procedure is the blood draw -- so it really only takes several minutes to complete. It will be done locally at an outpatient surgery center.

The neuro's office called with an appointment for June. I took it and will start writing out my questions now. We're also scheduled to see the same neuro in the CP clinic in July and I plan on keeping that appointment too...so for now things are good in neuro land.

Jack's feeling much better and will return to school tomorrow! They have their Spring Graduation program on Thursday -- I can't wait!!

Morgan is doing great!! She's up to 15 cc's for the next 2 feedings, then they'll go to 20 cc's. She's taking it all by bottle. She weighs 5 lbs, 14 oz! She hasn't had any stools (I asked hoping they were not abnormal/runny, etc.). Can't wait to see her adorible little face!

So that's it for today :)

Good News!

Morgan's xray looked good so they ordered her feeds to start this afternoon. They'll be starting her with 10 ML of Pregestimil infant formula every 3 hours.

They stopped her antibiotics and her central line is working well!

Please keep your fingers crossed!!!!!!!!!

***Edited to add***

I haven't heard back from the Neurologist's office about today's appointment. Seeing as they close in less than an hour, I doubt we'll get an appointment today. I will be calling first thing tomorrow morning.

The NICU Called....

A nurse practitioner from the NICU called about 20 minutes ago and nearly gave me a heart attack. Morgan is FINE.....but they've exhausted all of her peripheral IV locations (hands, arms, feet, and scalp) so they called a pediatric surgeon to place a central venous line in her femoral artery (in her groin area). She will get the rest of her antibiotics and TPN through the central venous line. They still plan on starting her feeds tomorrow, but they start so slowly (I believe 3-5 ml every 4 hours) and of course that's not enough to hydrate or feed her with so this is why they had to do the procedure. I gave consent over the phone. I totally understood.

They will be giving her something for the pain and discomfort and the actual procedure takes just a few minutes. My nerves are fried -- so any phone call from the hospital is going to make me worry a little. Once I knew what she was calling about I felt better. I am so glad it wasn't bad news about her NEC or anything else for that matter.

We visited her this afternoon and she had a little Mothers' Day card made for me with her little foot print...just like I got from Jack in 2003!

We had a lot of housework and yardwork to catch up on so we've been going, going, going since this morning. Jack is back to himself with only a stuffy nose. He'll be seeing his neurologist tomorrow at some point and I believe my mom is going to come along to help me lift him as well as check in on Morgan while we're at the hospital.

I hope all the moms out there had a wonderful Mothers' Day!

I HATE SEIZURES!!!!!!!!!!!!!

We spent 13 hours in the ER with Jack yesterday.

Friday morning Jack woke up early -- he was happy and playing...ate breakfast and when I went to put him down for a nap at 9:15 am he vomited a bit. This put my radar up a little -- so we went back out to the living room. He started acting really strange. He was not himself. His personality seemed altered. He was rocking and humming and smacking his lips. I could still get his attention but could not get him to smile or laugh. He was answering my questions but would repeat the answer over and over. He started tossing his blanket over and over...I put him on the sofa and he started picking at the sofa over and over again. His heart was racing and he was hyper and seemed so off and far away. Then he started grinding his teeth.

In the middle of all of this I called Jason and told him I thought Jack was about to have a seizure. When I described everything to him and he heard him humming he said he sounded off and it definitely sounded like seizure activity to him. I hung up with Jason and called the neuro's office. He wasn't in and would only be able to return my call in the afternoon. I then called the pediatrician and asked if I should give Jack Diastat based on the suspected seizure activity. She said Jack IS having a seizure and I should give him Diastat immediately. So almost 45 minutes after everything started I gave him the meds. He didn't stop the behavior until about 10 minutes after I gave him the meds. I asked Jason if he could come home from work and he was able to.

I had also called my mom and she got there right when Jack was coming out of the seizure. He looked at her and knew who she was, but didn't laugh or smile like he usually does. He didn't sleep like he did last time, but he was definitely post-itcal and sedated from the meds.

When Jason got home my mom left and Jack was still about the same as before. We weren't comfortable with his neurological state so we decided to go to the ER at the med center. We grabbed our things and took a "just in case" bucket thankfully because Jack vomited on the way there.

We waited in the triage area for almost 3 hours -- they were PACKED FULL! When we were taken back Jack was given an IV right away and we realized he was also running a temperature.

We were in the Trauma area in a bed in the hallway. We saw so many terrible sights and a lot of people and young kids were coming off of the Life Lion and Medivac helicopters. I NEVER want to see sights like that again. All I can say is please, please wear your seatbelts, motorcycle helmets, and gear up your kids when they ride bikes or skateboards or anything else with wheels.

They did blood work and tried to get a urine sample but they couldn't get any -- even with a syringe -- POOR GUY! Jack was taken for a CT scan and shunt x-ray series as well as a chest x-ray. The CT scan showed his shunt was in working order and his ventricles were the exact same size as they were on our baseline MRI earlier this year. So a relief -- no shunt issues. The peds resident was VERY nice -- he took a thorough interest in Jack and was probably the best resident we've had with in over two years...and we deal with quite a few. He called Jack's neuro and he upped his Tegretol to 8 ml twice daily from 7 ml. He also said he wants to see us Monday in clinic -- and we need to call asap Monday morning.

Jack's white count came back elevated and he was running a temp of 101-102. They told us the CT scan showed a sinus infection. So yet again before he showed ANY signs of being sick he had a seizure. I cannot wait to try and see if there's anything that can be done about this or if this is just going to be our new normal. I certainly hope not.

One thing we did learn is we should give Diastat right away if he has the same type of seizure again. At one point I felt terribly guilty because I let it happen for 45 mintues before I gave him the meds. I really wanted to make sure it was okay which is why I called his dr's first. I didn't know if Diastat should only be given if he has loss of consciousness, convulsions, etc. Now we know.

The ER was crazy and we waited and waited and waited hours between visits from all of the departments. We saw the hours tick by -- luckily Jack was sleeping for most of this. Jason and I were deliriously tired and we were finally discharged at 3 am after getting there at 12 noon.

We were discharged with an RX for antibiotics and instructions to follow up with neurology on Monday. The RX was for Zythromax and I remember reading somewhere that Tegretol and Zythromax do not mix and shouldn't be taken together. When we asked the dr she said it was fine.

This morning we called the pharmacy and the pharmacists said we were absolutely correct. Zythromax will force the Tegretol to stay in the body much longer causing dangerously high levels. I am so glad we didn't take the dr's word for it. You bet the neuro is going to hear about this so no one else in the ER is ever prescribed that combination. Very scary.

We were so torn. We didn't get to see Morgan at all yesterday. Jason called upstairs to the NICU and explained to her nurse what was going on. Having both kids in the hospital is more than we could process last night. Not to mention I just had pretty major abdominal surgery two weeks ago. This is not how it's supposed to be. Our little family HAS to have some better times coming.

I went to see Morgan this afternoon and she was so cute! Up to 5 lbs, 9 oz -- officially over her birthweight! She even looked different since I saw her Thursday night. She no longer has the IV head gear and it's back in her arm. Nothing has changed -- they still plan on starting her feeds slowly on Monday.

When I got there she was crying and her nurse was trying to console her. She's sooooo hungry. I held her and she grabbed my hand and with all of her might shoved the binky in her mouth. She settled and I rocked her to sleep. I couldn't stay long because I hadn't eaten in days and Jack needed me at home too. Daddy's going in this evening to see our girl. Please keep her in your thoughts on Monday!!

Her Pretty Little Head...

Yeah -- they went THERE...

Poor Morgan has an IV in her HEAD! They went through both hands, both feet and all that was left was her poor noggin. It's actually not uncommon at all for preemies to end up with IV's in their heads -- Jack was never so fortunate, but I was kind of expecting it since she's on such strong antibiotics...

I had a wonderful visit with Morgan tonight. She's such a beautiful little girl. She slept the entire two hours I held her. I changed her diaper and that's when I snapped this picture. She woke up for a moment and went right back to sleep after I swaddled her again. We rocked and I watched the rain from the NICU window.

Even though we've been through the NICU experience before -- it breaks my heart to leave my sweet little baby night after night, week after week. It's especially hard this time because I can't be there as much as I want, and when I am there I miss Jack too. She'll be home soon -- I know this -- and I keep telling myself to hang on!

Miss Mo'

Good afternoon! Here's the recent news on Miss Mo'

Morgan won't have any more xrays unless she would start to show signs of illness due to NEC. They will do one right before they plan on feeding her. She will not start feeds until next week (probably on Monday IF her xray is clear). Her NG tube was removed because she won't be using it for several days yet. It was so nice to see her little face with nothing taped to it last night. She was also moved to an open crib! Big girl stuff!

She's quite a wiggle worm and won't keep her blankets on! She likes to sleep on her side with her legs straight out...like an "L" and every time her nurses wrap her up and walk away she gets herself unwrapped and back to her favorite position!

Our next hurdle is tolerating feeds. I hope she has smooth sailing when the time comes. Thanks so much for thinking of us! Daddy took some pictures tonight -- when he gets them online I will post them!

Speaking of Daddy's photos -- we got daddy a new camera for his birthday. Well, actually daddy picked it out and even went to the store to get it...but I have a good excuse for not being able to shop! He's taken some really good shots! I know he won't mind me sharing some with you:

NEC Update

I just wanted to give a quick update on Morgan...

She's stable and is doing well clinically. She's maintaining her temperature, her sats are 100%, heart rate is good and her belly feels good too.

She has stage 1 NEC -- which is mild and this morning's xray showed improvement. She will start feeds (very slowly) in about a week from today (Monday). Hopefully she'll tolerate them well with no setbacks and be totally healed.

They are removing her NG/Suction tubes and she'll be tube free for the week. This will let air back into her tummy and abdominal area.

She gets angry because she wants to eat...her binky is her best friend right now. Daddy visited before work this morning and Shannon was able to drive Jack and I this afternoon and I got to see her shortly while they walked around the 7th floor.

I spoke to her attending and he said he feels she will do well...it was caught early thanks to a VERY observant nurse. She looks good clinically and is active and looks healthy. He said if she were getting worse her condition would have deteriorated by now. He said NEC can be nasty and sometimes fatal, but again Morgan's case was treated so quickly and we are so thankful.

I am still having moments of sheer panic -- thinking what ifs, and holding my breath praying for her tummy to heal totally and completely. She's a sweet, sweet baby and I can't wait until she can join us at home.

A Setback for Morgan

This morning we got a phone call from the Neonatologist. She said Morgan had some blood in her stools so they did an abdominal x-ray and found that she has NEC. It was caught EXTREMELY early so this is a good thing. They are stopping her feeds for 7 days and have her on antibiotics. They will do frequent abdominal x-rays and keep her tummy deflated so she's not feeling hunger pains or discomfort from the acids. She reassured us that it was caught very early and they have her back in the NICU for close observation.

As some of us know NEC can be very serious. My heart skipped several beats when Jason said what it was. I can't believe she has it. She was supposed to be a feeder and grower!

We're heading up there right after Jack's nap. I will keep you posted. Please keep Miss Morgan in your thoughts and prayers.

PS -- before all of this she had been taking more than half of her bottles!! Last night I fed her at 9 pm and she was wide awake and making googly eyes at us Sooooo cute!

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