Monday, March 31, 2014

Celebrating Sam

Six years ago today, this beautiful baby boy was born.

His due date was April 1st and it was going to be close. The doctor said we could let my labor take it's course and have an April Fools baby, or break my water and have a Red's Opening Day baby. Opening Day baby he was, born around 10:30pm!  And today, 6 years later, on Opening Day again, we celebrate our boy.

For 10 days, we had a newborn and a one year old.  And for the next 10 days now, we have a 6 and 7 year old.  I love that my boys are so close and I love how Sam loves his sisters.

This kid is the smiley-est person I know. He smiles with his whole face and makes us laugh all day long. He is radiant. He's kooky and silly. He has chocolate brown eyes that will make you melt. He's giving to a fault.  He is totally absent minded and super smart.  He is determined and intensely motivated.  He is JUST LIKE HIS FATHER in nearly every way.

Oh how I love this kid.  I just don't know how we got so lucky!


One year old!




5 years old

 crazy, crazy kid

And just keeping it real... I tried to sneak a final picture of him 
sleeping as a 5 year old and this is what I got....

The big 6!

Thursday, March 27, 2014

One Week Post Surgery - Coping

Maggie's situation is fairly uncommon here. Most cleft lip and palate babies born here in the US have their surgeries as much younger babies.  While our hospital is known for helping adopted children with this condition, but they're still few and far between. They said they have one every few months.  That left us with some tricky things to figure out, as it's not very common to have a toddler recovering from this type of surgery.  Her nose stent just will not stay in. She can blow it out, sneeze it out, rub her face on our chest or her bed and knock it out. We've tried several different types of medical tape, I think we may have finally figured out that plain old band-aids work best.  But she has to wear it for a couple months and once her arms are out of the arm bands, I don't know how she'll keep it in.

She is also able to pull her arms right out of the arm bands. She'll pull an arm out and then hold is up to us as if she was saying, see what I can do?  It's stressful to constantly be making sure they stayed on, even in the middle of the night.  We've had to get creative; currently her arm bands are duck taped to the cuffs of her PJ arms. We also had to safety pin the neck hole so it's a bit smaller, otherwise she can wiggle her arm out of it.  So she is wearing the same nasty PJs every night and every naptime. For the most part when she's awake, we take off the PJ/arm band outfit and just watch her like a hawk to make sure she's not bothering her mouth.

Feeding her is very tricky. She cannot have anything hard in her mouth past her gumline... so no spoons or forks, no bottles, no regular sippy cups, no sucking.  So we've been getting her to drink with a syringe.  It's a very slow process and we still have to be very careful that she doesn't get the syringe far into her mouth where it could bump her palate.  It's best to recline her back and just squirt the liquid into her mouth, but it takes forever to get in just a few ounces.  Thankfully as of yesterday she started drinking from a regular open top cup as well.  She's also liking baby food that comes in the squeezy packets - hallelujah for those!   We still have to be careful with the tip, but she has learned that if we recline her back, she can just open her mouth and we'll squirt it in.  She's allowed to have soft foods; yesterday she finally started trying some. She ate some soft macaroni, cooked veggies, etc.

Sleep has been difficult due to the terrible arm bands. She just can't get comfortable. Some nights and naps she sleeps well, other times she wakes a lot.  They told us the best place for her is in her own bed, so we continue to try to comfort her as best as we can.

The last week has been very trying for all of us.  For Maggie most of all, of course. She continues to not be in too much pain, and we give her Tylenol as needed.  But she's so uncomfortable and frustrated and tired and hungry from everything being so difficult.  She's had to relearn the way she eats, plays and sleeps.  She requires a lot of care. If she's awake, I'm either holding her and on the floor with her watching her every move.  These 2-3 weeks are crucial that she doesn't bump her mouth.  So regular life is on hold while we just get her through this time.  Not an easy task to let go of regular life when we have 3 other kiddos that need time, care and attention. Thankfully their grandparents are chipping in and helping out tremendously, watching them for us so we can care for Mags.  I cannot imagine how difficult recovery must be for kids like Maggie and so many others who have surgeries in China without a family to care for them after.

Maggie had to return to the hospital yesterday for a brief surgery to remove some sutures. Although it was a very quick procedure, she couldn't eat all morning and afternoon, and then there was another delay in getting started on time.  She was miserable waiting there at the hospital.  Thankfully the surgeon said everything is healing well! He also cleaned up a lot of the gross gunk around her nose and mouth, so she's looking much better!  I had to put my foot down while there; they told me they didn't have a room available for me to be there to hold her while she was put to sleep like last time; that was so not okay with me. She's so afraid of medical people and no way was I handing her over to a stranger while she was awake. They saw my tears and quickly made it happen for us. I'm grateful for that; I held her on my chest while she drifted off to sleep.  It was great to bust her out of there right away instead of having to stay.  We're very hopeful that was her last surgery for a very long time.

I have to give a huge shout out to our big kids.  It really hasn't been that long (4 months) since we left them here for 17 days while we were in China. Now they're being shuffled around while we once again focus on Maggie. It's hard on them; Sam told me yesterday that he's tired of other people taking care of him.  Ugh.  So hard to hear.  They're on spring break this week, so instead of them being gone for a good part of the day at school, we're having to make arrangements for help for most of the time that Jeremy is gone to work, as I can't easily care for all 4 of them by myself with Maggie in her condition.  Thankfully Jer took today and tomorrow off work so we can do some normal family things and work together to keep an eye on Maggie.

Anyway, we'll get there. We are muddling through. Today was a much better day. We're taking a break from her nose stent, it was irritating her nostrils, and she ate like a pig after not being able to eat before her surgery yesterday.  She's physically doing great as far as how she's recovering.  Although her surgery was more extensive than we thought it would be, it was also more successful than we had hoped.  And we know that it won't be long before we're looking back on this time!

Love this face.

And this one.

And this one.

Lil' Houdini with her arm out of her arm band, PJs and extra shirt.

Happy Birthday to Daddy!

That cupcake looks good Dad!

 A little taste.

3 days post surgery.  
Bedtime Routine... she's starting to hate her changing table where it all takes place.


She knows what's coming...

Arm Bands on....

Ear drops in...

Nose stent in...

A little formula and ready for bed.

4 days after surgery. She has a black eye from all the work they did 
and lots of oozy yuck around her nose and mouth.

Her first real meal... she gobbled it up!

5 days after surgery.

 At the hospital waiting for suture removal surgery, hanging with Grandpa.

6 days post-op.

One week post-op!!  (taking a break from the nose stent)

Tuesday, March 25, 2014

Days 1 and 2 Post-Op- The Hospital Stay

I write this blog in part because I know so many people love and support our family and want to keep up with how we're doing. But I also do it as a way to keep a record for ourselves of these days.  Be aware that I'll be posting detailed pictures of her recovery, some of them are not easy to look at.  But they are our reality and some day we'll want to look back at how far we've come.

Being at the hospital was rough.  In addition to being in pain and confused and frustrated, she was absolutely petrified of anyone who came in the room. And there was a constant flow of nurses, doctors, etc. coming in, sometimes every 10 minutes! They kept having to check on her, which would wake her. It got to where she couldn't sleep because she just kept her eyes on the door waiting to see who would come in next.  I appreciate their care, but really wish they could have coordinated their visits better for her sake.

When we finally got to her room after her surgery Thursday night, they wanted her to sleep in this mammoth crib that looked more like a cage. She was NOT having it. She didn't want to be put down, understandably. Not only had she just had major surgery, but she's still very newly adopted and doesn't like strangers or new situations.  So we signed a waiver that allowed us to have a regular bed that we stayed in with her the entire time. She much preferred that; she could either sleep on us or next to us.  The hard part was that it wasn't as safe as a crib, so I couldn't get up and walk away for a minute unless someone else was there to supervise her.  Jeremy went home for the night, so all through the night I relied on the nurses to take care of me too, getting us what we needed, etc.  They'd watch her while I ran to the bathroom, which was right in the room, but she was hysterical anytime I wasn't in the bed with her.  It got draining very fast, but we just wanted her to feel safe and comfortable.  There was a lot of drama that first night, her IV fell out and they had trouble getting it back in, etc. Hence, I got maybe 2 hours of sleep patched together and she didn't get much more than that.  It was hard! It brought back memories of giving birth and how hard those first nights are.  I was so thankful when morning came and Jeremy was back to help me with her care (and bring me food!!).

Our main goal was to get her drinking. The surgeon had thought that given the extent of the surgery it may take her quite a while to be willing to drink, which is why he said to expect a 4 to 5 day stay. She couldn't be discharged until she was drinking enough on her own to be off the IV.  But this girl drank a little the night of the surgery! And a lot more the day after!  They almost sent her home the day after the surgery, but we said we'd feel more comfortable waiting until the following day.

They had given her strong pain meds during the surgery, but told us generally after that they only use Tylenol. I was REALLY worried about that, regular Tylenol just didn't seem like it would be enough after having her mouth completely reconstructed.  But they were right, she really didn't seem like she was in much pain at all!!  We requested Morphine one time, but other than that she's only had Tylenol.  She was agitated by the arm bands and nose stent, and by people poking and prodding on her, but if she was in our arms, she was content.  Amazing.

Despite not being in too much pain, my girl was just plain old SAD.  Her eyes were the saddest things I've ever seen.  And she didn't want to close them for fear that I wouldn't be there when she woke up. We spent hours that first night laying side by side, face to face and her eyes just studied my face.  I just kept telling her that she would never be alone again.

Jeremy spent Friday night there with her; she has a slight preference for me when we're both around, so I felt a little guilty leaving her, but she takes comfort in her Daddy too and I knew she was in good hands.  I needed to get home and see my other 3 babies and recharge a bit.  When I got back to the hospital Saturday morning, the plastic surgery residents were taking a look at her and said she could go home that day.  Yippee!!

So the surgery was Thursday from 11:18am to 4:10pm, we spent Thursday and Friday nights at the hospital and she was discharged Saturday afternoon around 3!  Amazing after what she went through. We had expected to be there possibly until Monday, so we were so thrilled to go home Saturday.  By Saturday, she was just overly exhausted by not getting enough sleep and we knew it was time to just get her home to her own bed.

Saturday was also a pretty special day for her homecoming, as it was 4 months to the day that we came home from China with her.  Just as her surgery date ended up being on the first Day of Spring, this was no coincidence. I believe this was the plan all along, her surgery date and homecoming day both meant to be.  It was a beautiful reassurance that this was meant to happen when it did, and a good reminder that God's plan is always better than anything I could think of!

She stayed awake the whole ride home, taking in the sights from her carseat. She got really excited and babbled when we pulled on our street- I really think she knew where she was!  She was so happy to see her siblings and grandparents, and she immediately got down on the floor and started playing (which gives me a heart attack, but that's a post for another time).  She then conked out in her bed and slept 14 hours straight, only waking once for a quick drink.  She knew she was home!
I was so relieved to be able to show her that after all that she went through at the hospital, this is still her home.  I can't imagine how afraid she was in that place, not knowing if she'd never come back here again.  Being able to demonstrate through this experience that we'll always come home and we'll always be there for her was so good for her security and our bonding.

Here's some pics of our time at the hospital and her homecoming.

Snug as a bug, watching Baby Einstein.

This is the string that was attached to the tongue stitch that kept her tongue from moving too much. They clipped that Friday morning.  

The dreaded nasal stent.  It stayed in easily the first day due to all the dried blood and mucus, but then just started to slip out a lot. It's a constant source of frustration for her, since we have to put it back in every time. It's very long and goes way up into her nose.

All hooked up to so many things.

Major bedhead!

Drinking with a syringe... at first it was a 2 man job. Daddy would hold her, I would do the syringe... AND to get her to drink it we had to sing Row, Row, Row Your Boat.  In rounds. I'm not kidding, we did that over and over, but it worked and she drank enough to be discharged way earlier than expected.

She loved taking walks through the hallway. She would sing as we walked!

Our room.

This was taken Saturday morning, so about a day and a half post-op.  
Lots of swelling, but not as bad as we thought!

Who sings less than 2 days after mouth surgery? This girl!

Time to take out the IV and take off all the monitors!

Ready to go home!

Her 2nd Homecoming. Welcome Home Maggie Fei!!!
I'm biased but I think she looks stunning in this picture. Takes my breath away.

Her siblings were a little afraid about how she would look, 
but in no time at all they were loving on her as usual.  

Her feet didn't touch the ground at the hospital.  Home was another story... she's on the move!

Arm bands don't stop this girl from playing.

Exhausted and ready for her own bed.

Look at her 2 front teeth!!!! No more crazy sideways tooth. Her front left tooth used to be the one exposed and pointing sideways. Now it's generally where it's supposed to be.
And look at her palate... all closed up and looking great 2 days post-op!

Top lip is still very swollen and she's very oozy and mucous-y.  We have to use tape to hold in her nasal stent.

We are just absolutely amazed at how well she was doing only 48 hours after having major surgery!!  We're so happy to have her home and to be on the healing side of the surgery.  We're so proud of our little girl, she is a SURVIVOR.