I knew I wasn't crazy!

For the last 2 days, every nurse in hearing range has been telling Justin and I that Drew's tongue-lip adhesion would be removed this week. Uhm... no. We kept telling them not until his palate is repaired at 10mos, and we finally got confirmation from our plastic surgeon (he' out of town, they had to page him) that Justin and I were right, its staying in. However, they will remove the chin-bar that was put in place to prevent him from ripping out the stitches. So, no one will be able to tell he's got the stitches! Yay! His sleep study should be ordered, so it should be done tomorrow or friday, to get results monday or tuesday.

Grammy, Grandpa, and Aunt Ronda came to visit him today. He was chilling in his swing, and loved being cuddled and getting extra attention. He's such a sweetie!

In other news, my milk supply is still not where it needs to be. He was on formula for 24 hours while I tried to pump enough for at least a few feedings. It is just so hard.

Head vs Heart

I changed Drew's diaper before I left the hospital today, because he had obviously had a blowout, and I didn't feel like letting him sit in it until the nurse came in. So I un-swaddled him, undid his diaper...

...and Drew has a belly button! No more ugly stump, but a real belly button. Part of me thought "Well, thank God that ugly thing is gone" and the other part - the secret, sad, emotional part that won over - cried a little. I should have been there when it fell off. I should have been the one to find it, and throw it away (I really don't undertsand people who save them - barf!).

I just feel so unprepared. I have been a Mommy for 19 days, and I don't really think I feel how a Mommy should feel yet. I love Drew to death, and I want him safe, happy, healthy, home, and loved... but I don't feel like I know what I am doing. I don't know how to comfort him, or care for a circumcision while its healing, or how to bathe him... its a miracle I can change his diaper! And feedings? I don't have nearly enough confidence in myself when it comes to his bottles. Yes, the are weird and special, and work a bit differently than normal bottles... but I shouldn't feel NERVOUS about using them.

How can I ever have another kid? I STILL wouldn't know the first thing about newborn care.

I know that no first-time mother has really any idea what she is doing in the beginning. Or even repeat-moms, since all babies are different. But only the logical side of me knows that. And I've always been much better at listening to the emotional side of me.

Lazy Saturday...

...hanging out at JH with my littlest dude. Although I've been here over an hour, and he's been asleep the whole time. What a happy camper!

He was moved out of the PICU, and back to the Infant Intermediate Care Unit (I really just don't want to type "IICU" because it sounds like I am calling you gross, haha). He is doing AMAZING and his oxygen levels have not dropped below 100% (at least not any of the times I've been here). The nurses put him in his bouncer and turn on the vibrations, and he just sleeps the day away. Mommy wishes she could do that too!

I brought up the last of my freezer stash of breast milk with me. I was doing so well with pumping, and pumping more than he needed. But out of nowhere my supply has almost totally disappeared. Yesterday I pumped 60ccs the WHOLE DAY. To put it in perspective, he eats 75ccs every 4 hours. I have tried Fenugreek, I am drinking more water than I ever thought imaginable, I even got a prescription for something that stimulates milk production. I am just failing all around. But heaven forbid I sleep through a pumping session, because then I'll have leaked and soaked through my clothes, AND the bedsheets. Might as well just start wringing them out, it seems to be the only way I'll get enough milk to feed my baby.

Now, I'm not saying moms who formula feed are wrong - I am a believer in happy mommy = happy baby. But what would make THIS mommy happy would be breastfeeding. And since I clearly can't do that, I'd settle for a good pumping supply. I (personally) think formula looks too thick, and slightly gray-ish. Maybe my imagination, but oh well. I just don't want to feed it to Drew. I didn't get a natural, or even vaginal childbirth like I wanted... I don't have my baby home where he belongs... can't I catch a break and have a good milk supply? I'm hoping my supply comes back up soon!

In other news, Parker is on the road, being taken back to his mother. I already miss him. He was so out of sorts yesterday - but he always is when he knows he is going home to her. He hates leaving his Daddy, and he just doesn't understand. Granted once he sees his mom, he's fine and as far as I know, happy and transitions fine. But its the day or two beforehand when he knows he leaving that he's a wreck. Which just breaks my heart. I love him so much, and I really wish things were different. Hopefully in the next few years when Drew is done with his surgeries, we will be able to move to AR to be closer to him. That was our goal for this year, but clearly that option went out the window when we realized we needed specialists. And living so close to JH... its a blessing.

Geez, Drew is still asleep. Do they make bouncers for adults? I could use a good nights rest...

More good news!

Drew's Xrays all came back clear, and he is doing great on "room air" (no breathing tube). His oxygen levels are all at 95 and better! He was also pulled completely off sedation meds, and is alert and hanging out on tylenol! Although I did have to let the nurses know that Justin has severe tylenol-sensitive asthma, just in case. Did I mention he has a nurse at his bedside 24/7? How awesome is that?

Also, his geneticist called, and his Echocardiogram (an ultrasound of his heart) came back normal, as did his hearing. We are still waiting on blood tests (6-8 weeks) and Opthamology (eye doctor) though, to rule out genetics as the cause of Drew's PRS. It will be a relief to find out it was just a "fluke" (if you will), so he hopefully won't also have to deal with hearing/vision loss later in life.

Will the real Parker please stand up?

This kid NEVER eats. Unless it chicken nuggets. In a restaurant. Seriously.

Today he has had the follwing:

Breakfast - 2 donuts
Lunch - a turkey "mammich" and chips
Snack - crackers
Other Lunch - a peanut butter "mammich" and chips
Dinner - a bowl of Mac N Cheese
Other Dinner - a peanut butter "mammich" and chips

And now he's begging me for celery, but we don't have any. He also drank a glass of plain milk, and I've NEVER seen him do that. Its either chocolate milk, apple juice, or water.

Who is this kid, and where is the real Parker?

Holy Cannoli! :)

A good day!

Well, Parker and I gathered up all my frozen breastmilk, and Justin dropped us off at JH on his way to work. Parker fell asleep in his stroller, so I got to leave him with a nurse for 5 minutes so I could see my littlest dude. Imagine my surprise when I walked in, and his breathing tube was already out!

They told us it would be done aroud 4pm, and we were at the hospital around 245. He has been breathing good on his own so far, and after his xray tonight, they will slowly keep easing up on his sedation meds. Hopefully Drew will be alert this weekend!



Yeah, he still looks kinda rough, but he's doing fabulous! Mommy couldn't be happier (well, not counting how happy I'll be when he comes home!)

Other than that, I'm just hanging out with Parker today - he had a rough patch where he colored on the hardwood floors, but we cleaned it up, and moved on. Now we are watching the same Scooby-Doo movie for the third time today. He deserves it. Bonding time with "his Bean" (his name for me) cuz I'm his "bess fwen." How can you say no to that?!

A whirlwind of a week!!

Not even sure where to begin!

Monday we got a call from the Ronald McDonald House in Baltimore that a room had opened up for us - what a HUGE blessing. So, Justin, Parker and I packed up and moved in. It is a great setup, and such a gift to have this resource available to us.

Tuesday morning Drew went in for his tongue-lip adhesion. It went smoothly, and he was placed in the PICU (Pediatric Intensive Care Unit) to recover. The PICU is slightly less overwhelming than the NICU (Neonatal Intensive Care Unit), but at least Drew was alert in the NICU. Right now he is intubated (has a breathing tube down his throat) and is heavily sedated. He will stir/open his eyes... but is high as a freaking kite. Tomorrow they should be able to extubate (remove breathing tube) him, and slowly lessen up his fentanyl (pain med - comparable to but more effective than morphine) until he can just be on regular pain meds like tylenol. At that point they should be able to move him back into the Infant Intermediate Care so he can finish recovering, and complete his next round of testings. With a little luck and a lot of faith, we can be out of Baltimore in about 3 weeks!

Parker will be going back to AR (where his mother lives) this weekend. Its been hard, because he wants to see his brother in the hospital, but thanks to the lingering effects of the Swine Flu, restrictions are still in place. He just doesn't understand. But Drew will be home this summer when Parker comes back and they can hopefully get in some good bonding then.

Oh! I also had my 2 week Post Partum checkup with my midwives on Monday. I am still on lifting restrictions, and limited driving, but I am down 17 pounds, and only 10 away from my pre-baby weight!

Here is my little boy - right after his surgery :(

Big Budder/Eetle Brudder

We got Parker ad Drew matching shirts. Parker's says "Big Brother" and Drew's says "Little Brother." Of course, Parker says it much cuter, and proudly points to the shirts as he "reads" them.

My aunt is coming to JHMI today to pick me up and take me home (I have my two week post-partum check up in VA tomorrow) and is bringing Parker along. So, I packed the shirts for them to wear. They were supposed to wear them in Drew's newborn pics, but obviousy we aren't able to get those done right now. So, sadly they will be on my cell, and therefore bad quality. Luckily I got both outfits a size too big so they can wear them together this summer.

So excited to give the boys a chance to see each other again. We don't know when Parker is going home to AR, so it might be his last chance to see Drew. That makes me sad, but I know its better for Drew in the long run. I'll just upload the pic, and send Parker home with a copy :)

Mooooooo!

So, my Mom drove me to Johns Hopkins this morning to see Drew. After a slight adventure (traffic, detours, and getting lost), we made it. I was armed for an overnight stay - laptop, change of clothes, breast pump, and a cooler jam-packed with frozen milk. I was prepared, and on top of the game - I was told we'd have enough milk to last until Monday, so what I brought today (enough for 20 feedings) would be icing on the cake!

So, imagine my surprise when I walk into the room, and see the bottle Justin had been feeding Drew that morning... a bottle full of FORMULA! Uhm, hello? My baby does NOT drink formula. Apparently they ran out last night. My teeny tiny man has jumped from 40ccs a feeding to 75! What a hungry hippo.

So how do I spend my day? I pump. That takes about 30 minutes. Then I feed Drew. That takes about 30 minutes. Then I burp him, and try and get him to fall asleep. Another 30 minutes. I pee, refill my drink, grab a few bites of food... and then I pump. Repeat whole process.

Moo.

Drew's Birth Story (so condensed)

Drew’s due date was March 8th, 2010. Friday, March 5th I started having contractions. They were pretty steady at 7 minutes apart. They would last all night, only to disappear during the daytime. This also went on Saturday and Sunday night as well. So, needless to say, I was EXHAUSTED. Monday, my due date, the contractions were continuing at 7 minutes (but super mild) throughout the morning. We went to my 40 week appointment at 12:30pm, where I was 2cm, “effacing,” head down (as I had been since 30 weeks), and they stripped my membranes

Justin, Parker and I went to lunch, where contrax were still 7 minutes, but more intense. Still manageable (walking and talking, and driving) but definitely uncomfortable. After lunch we went to the grocery store. By this time it was about 3pm. After an hour of walking around grocery store (hey, I didn’t want to have to shop again for a LONG time!) my contrax were 4-5 minutes apart, and taking my breath away/it hurt to move. Jsutin had to drive home. We called the midwife, and she said to call back at 2-3 minutes. Pretty much as soon as I hung up with her, they moved into that range, so I called my mom, and she came to get Parker. We were at the hospital an hour later, and by this point the contrax were coming every 2 minutes, and I was trying not to scream through them. Was immediately admitted, it was around 6pm.

The nurse checked me, and I was at 4cm. I caved, and asked for the epidural at that point, because after 3 days of not sleeping, and the intense pain, I just wasn’t able to catch my breath between contractions. I got the epi at about 8pm. My spine is slightly curved, so it took the anesthesiologist awhile to get it placed correctly. The whole time I am hunched over, I was whimpering in pain – not from contractions, but there was something VERY solid in my ribcage, and it was almost more uncomfortable then the needles at that point.

Yay, no more contractions! About 9:45pm, the midwife came in to break my water. She did, and told me to not expect to deliver before 5am. So we called my parents, and told them not to come yet, that we’d call them when I was further along (they live 10 min away, and my younger sister would watch Parker while I delivered so my parents could be there). Midwife then did an exam, and immediately called for an ultrasound machine. I knew something was up, and asked why. She was hesitant to say anything, but finally said that she thought baby was breech. I was confused since he was head down that morning…. And for the past 10 weeks. Just as they wheeled a machine in, the doctor who owns my practice (a physician/midwife collaborative practice) walked past my room. He asked what was up, and came in. Looked at ultrasound, and confirmed that in the past few hours, my baby had indeed turned breech (yeah, that solid object in my ribs? A head). He looked at me and said “I’m prepping for a c-section now, I’ll be back for you next.”

Well, I immediately burst into tears, because that was the LAST thing I wanted. We called my parents, and they were able to make it just in time to give me a kiss. Justin suited up, and got ready to come into OR. The docs/midwives kept reassuring me that baby would be fine, and I would get to see him right away, and he’d come right back to our room, etc.

Fast forward to me in OR. The epi is working – I cannot feel contractions. I CAN however, feel the needle tests they do on the outside of the skin to see if I’d feel incision. And boy did it hurt. So I was told that I’d need general anesthesia. Cue tears. I knew Justin couldn’t come in at that point. I had to actually stop them, and tell them to remove my tongue ring – if they had intubated me with that in, that could have been disastrous!

Apparently there was a communication breakdown, and Justin was brought into OR mid procedure. The doctor flipped and kicked him out. Terrific.

The next thing I know, I am waking up and everything was foggy. But I DID understand that my baby was taken to the NICU, and that he was 7lbs5oz, 20.5inches. I was taken from recovery to Maternity, and DH went to NICU. I was pumped full of morphine, and stayed high for the next 2 days. Everything is still a blur. By Wednesday Drew was diagnosed with Pierre Robin Sequence, but the neonatologist had never treated it before, and wasn’t sure how to proceed.

We encountered many issues with the NICU at our hospital. They were unable to provide Drew with the Haberman Feeder (a special bottle for cleft palates) and my mother had to go to another hospital to get one. No one on their staff - save ONE nurse who looked about 16 - had any experience with PRS, and even that was limited. They did not do any testing normally associated with PRS and even let us know that out of all the babies in the NICU, that Drew was "of lowest priority." Good job saying that to his parents! Idiots.

He was released from the NICU to us on Friday, only to be admitted Tuesday March 16th into Johns Hopkins Medical Institute for testing and surgery. His preliminary results show he has failed his sleep study, although the final results won't be in until Monday. If he HAS failed, his team of specialists (Plastics, Opthamology, ENT, Genetics, Pulminology, Pediatrics, etc) will schedule him for a tongue-lip adhesion (yup, you heard right - they will sew his tongue to his lower lip) at that time.

If you are interested in learning more about PRS, here is one website you can check out: http://www.faces-cranio.org/Disord/PierreRobin.htm

And here is a picture of my beautiful son!