Wednesday, October 28, 2009

Great news from the surgeon

Max had his first follow up appointment with the surgeon today and we got excellent news. The area that I was concerned about is probably not a fistula. There has been some separation of the superficial layer of closure, but he thinks the deeper layer is intact and he thinks that the superficial layer will close on it's own. We'll know more at our three week follow up, but he doesn't seem worried.
Also, we now get to advance to a soft diet!!!! This is big news for our hungry kiddo. Also, it's very exciting for mommy, daddy, and sister who won't have to eat standing at the kitchen counter and who can now go out to eat with Maxybaby.
I feel like we survived!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Friday, October 23, 2009

We have a problem

I'm pretty darn sure there's a big hole in Max's palate. The interesting thing is it's over at the gum line on the side. I think they create a flap from that area to close the midline defect (which looks great by the way). I'm so depressed. Of course my mind has raced ahead. I'm already quite sure that Max's speech will never progress and that we'll be re-operating every year without ever successfully closing this fistula. (Is this even called a fistula since it's not at the closure site?) Clearly, he'll need a free flap if this is ever to be closed. I know way too much about the worst case scenario.


Warning: read at your own risk. This post has details that not everyone wants to read. But, I'm putting it all out there so that those people getting ready for this process with their kids will have a better idea about what to expect.

We got home from the hospital on Wednesday afternoon and Max has been making slow improvements since then. That first evening he was pretty fussy, but he went to bed at 7:30pm and slept until about 7:30am the next morning with only two short awakenings for pain medicine. We all felt much better yesterday after our good night's sleep. He was pretty clingy yesterday and spent a good amount of time on mommy's lap snuggling and napping, but he didn't seem to be in as much pain. We were already able to decrease the amount of narcotic that we were giving him and switched to mainly plain Tylenol. I actually enjoyed yesterday. Remember that this is the boy who has always preferred daddy over mommy. Now he reaches for mommy and wants to snuggle up closely to me. This surgery has definitely helped move our attachment forward. Not that I'm recommending surgery solely for this purpose, but for those of you wondering if you should do a surgery fairly quickly after bringing your child home, I wouldn't hesitate. Max did not want to drink as much yesterday as he had on Wednesday. I don't think this was as related to discomfort as it was to the fact that he wanted real food. We are trying not to eat in front of him, but he saw sister eating a banana and cereal and he wasn't at all happy that he couldn't have any. It's no problem for us to wait to eat or to eat somewhere else in the house, but Ellie has to eat on time and with our small house there just isn't a great place completely away from him. Having Ellie home from school sick this week has added a whole new dimension to this process. Both kids have needed lots of attention so the balance has been difficult. And, don't forget that our nanny was out sick for half of the week too. Thankfully, my mom stepped up once again and was a huge help in balancing the needs of two sick kids. Our other big battle yesterday was constipation. This is our child who poops three times a day average. Yesterday was his third day without a bowel movement and he was definitely feeling it. He would hold his tummy and bend over crying, but could not poop. We ended up giving him two suppositories before we got some action. Not surprisingly, he wasn't a fan of these either. Other issues, Max has run a low grade fever since surgery - 99's. We aren't supposed to worry about it unless it gets up to 100.4 and we're hoping it won't. I'm wondering if this is a post-surgery phenomenon because it started right after surgery. But, another part of me thinks maybe this is mild H1N1. I don't suppose it matters much at this point since he's had Tamiflu and is on an antibiotic. We haven't gotten a great look at his palate. There's not a hole there anymore and it looks brown and crusty, but that's all I can tell. Okay, that's all I can think to report.

Tuesday, October 20, 2009

Max is out of surgery

Well, we made it. Everyone stayed healthy long enough for Max to have his surgery. Hopefully we'll all stay healthy through recovery as well. We met with the surgeon about 15 minutes ago and he said that everything went well. Max was a little "oozy" and lost a bit more than the usual amount of blood, but everything else went fine. The cleft closed, but it was "a little tight" so they used allograft (donor tissue) to complete the closure. We haven't gotten to go back and see him yet, but hopefully we will soon. I'm gearing up for a long night at the hospital (and a long next couple of weeks), but we're glad that we've made it this far.

FYI, Ellie is better today as well. She has been fever free for 36 hours. She was still a bit stuffy last night, but slept 13 hours and woke up a new girl.

Monday, October 19, 2009

Surgery Tomorrow - We Hope

Max's cleft palate repair is scheduled for tomorrow. We have been focused on this date for several weeks now and have rearranged our lives accordingly. We may be rearranging. Sunday morning Ellie woke up with a fever, congestion, and a sore throat. I'm guessing it's H1N1 since it's been working it's way through her school. We knew that if Max got any signs of illness he wouldn't be able to have his surgery. So, we started Ellie on Tamiflu immediately and Max got started on prophylaxis. Jason and I also took the prophylaxis. I can't imagine being down with this and trying to take care of Max post-operatively. Or one of us being sick and the other one having to take care of him by themself. So far so good. Ellie has been fever free since about 6am this morning, and Max, Jason, and I aren't showing any signs of the illness. We've gotten the green light for surger as long as Max is symptom free for the next 18 hours, so keep us in your prayers.

This is suck a yucky virus. Ellie hasn't been this sick in a long time. Thankfully she's tolerating it really well. Going to sleep has been difficult due to the congestion, but she went to sleep much easier tonight. Also, she's woken up at about 5:30 the last two mornings with a low grade fever and "feeling funny". I'm hoping she can get a better night's rest tonight because she does seem really fatigued.

The other kicker is that our nanny called me about 3 hours after getting to our house this morning. She had a fever, splitting headache, and was vomiting. I had to drive home to relieve her until my mom could get here to watch the kids while I tried to get a whole week's worth of work done in one day. Thank you mom. Yes, she's now on prophylaxis as well. I know these are not the CDC guidelines for treatment, but I've already seen too many young people die from this illness this season and I'll be darned if I'm going to let any of my family members be one of those patients. Plus, I think Max's surgery puts us in a special risk category.

I think Grandma had an interesting day with the kids. Ellie is such a creative soul that a day with her is never boring. When Grandma got here Ellie was modeling the dress she had made with tape, markers, and paper. I wish I would have gotten a picture of it, but she got frustrated with the tape and ripped it off before I could. Ellie also made a bowling set with paper, tape, and an apple. I have pictures of the bowling pins, but the apple was toast by the time I made it home. Finally, when I got home, Ellie decorated the birthday cake she had made for Jason. His birthday was yesterday and we got it baked, but with all of the illness it didn't get decorated and eaten until today. The design on the cake should you not be able to recognize it is a forklift just like at daddy's shop. She came up with that idea and implemented it herself.

So, now that both kids are in bed I'm starting to pack for the hospital tomorrow. I won't be able to finish until tomorrow since alot of what I need is in Max's room. I've got our DVD player and videos, the computer (once I finish using it) and charger, my phone and charger, some toys and books, a sippy cup and a regular cup. I need to add some clothes and personal items and my very important kindle and I'll be about ready. The surgery itself is going to be about 1:30pm. We need to be at the hospital at 12:30. I think it's going to be a long morning. Thankfully they're letting Max have clear liquids up until 10:30, but he can't have any solids after 1:30am and I'm not getting him up to feed him at that point. We just gave him a big dinner and cake. I think the surgery will take about 3 hours and then he'll be in recovery for a little bit. Grandma is going to watch Ellie until we get into a room and then Jason will come home to stay with her and I'll hang with Max at the hospital. As long as Max is taking liquids and oral pain medicine on Wednesday we should be able to come home late that afternoon. I'm already looking forward to that.

Saturday, October 17, 2009

The Pumpkin Patch

I'm just getting the photos out there. I'll post details later.

This one's for Amy

This is the aftermath of Ellie's picture day dress. Thankfully the dry cleaner got it all out.

Friday, October 16, 2009

My day in Pre-K

Today I was the classroom volunteer for Ellie's pre-k class. Usually this is just for an hour and a half, but Ellie wanted me to go to all school chapel with her as well, so I decided that I would just spend the whole morning with her in pre-k. It was a blast. She was so excited for me to go to school with her. The first thing that we did when we got there was to put our bags and coats in big trash bags to protect them from lice. We then got in line to walk over to all school chapel. This was quite a production because on all school chapel days the kids are supposed to be at school 5 minutes earlier so that they have time to walk over to the big church building. Of course this is easier said than done so as we made the walk to the church building we kept picking up stragglers. Once we got to chapel we met up with the kid's 5th grade buddies. Ellie's buddy is Megan. Megan's brother Matthew also happens to be in Ellie's class. Megan was so cute. She talked with Ellie and asked her all kinds of questions, and on the way back to the classroom played red light/green light with her. Ellie loves her. During chapel we talked about the book of Ezekial which the kids had all been studying in their smaller chapel groups throughout the week. We then sang "Dem Bones" with actions. The rest of the songs were sang by one of the students who couldn't have been older than 6th grade but had an awesome voice. The worship leaders also did the signs for all of the songs. It was an amazing service. After this, we walked back over to the classroom and read a story and had a lesson on head lice. Did I mention that I was itching by this point? We then played outside. It is so interesting to see the social interactions between these four and five year olds. Although for the most part boys and girls tend to stick together, there's definitely more interaction than I remember at this age. For example, alot of the boys were playing pirates, but they would occaisionally choose some girls to be their pirate wives. I'm not sure what I think about that. There was still alot of the running around in circles chasing each other that I do remember. We then went back inside and had center time. This is where the kids go to the different areas of the classroom (science, practical life, language, math, art) and do "work". This ranges from puzzles to computer work to blocks to art projects to writing. I'm amazed at how much these kids know in pre-k. Most of them are close to reading if not already. They can count, write numbers and do basic math. One group of kids was working on learning about the planets in our solar system. Another was learning the montessori shapes (by the way, mom doesn't even know all of these). It's pretty impressive. We then went back to circle time, read two Halloween books and then left for the day to have Mexican food with Grandma D and Max. I now understand why Ellie is so tired in the afternoons.

Ellie's turn at the hospital

Max is having his cleft repaired next week, but we didn't think one visit to the local children's hospital was quite enough. Ellie has been having difficulties with recurrent urinary tract infections. She has a condition called vesico-ureteral reflux. This means that her ureters reflux urine back into her kidneys when she urinates. This means that if she gets a urinary tract infection she is at risk for getting a kidney infection. Chronic kidney infections can lead to kidney failure in the long term. She had been doing well for some time, but has had difficulty this summer/fall with getting frequent infections. Because of this her pediatrician recommended repeating some testing including a renal ultrasound, a VCUG, and a blood draw for kidney function. These were scheduled for Thursday. We've done everything but the blood draw before and Ellie did really well so I wasn't anticipating a problem. Ellie did great with the renal ultrasound, but for some reason when we walked into the fluoro suite to do her VCUG it all hit the fan. She was terrified. They have wonderful child life specialists to walk her through the procedure and we were able to get her through the first two steps, but when it came time to put the catheter in her bladder I could not keep her calm. She was fighting tooth and nail to get off of that table. Unfortunately, you can only do the test with a calm and relatively cooperative kid so we weren't able to finish the test. She was also too worked up to do the blood draw. I'll take her back later for the blood work, but I don't think I'm ever going to get her to do the VCUG. I've got a call into her pediatrician to see what she wants us to do. I'm thinking that we'll visit with the urologist again and see what other options we have. I hate what happend on two fronts. First, it is so awful to see your child so upset and scared and instead of just comforting her, to be the one trying to get her to do what she's so scared of. Second, I'm of course worried about what we do now. I hate the thought of trying to repeat that test. I dread that more than I dread Max's cleft surgery.

Monday, October 12, 2009

Jiao Zi

Max had a little taste of home this week. The family of one of the nurses that I work with made jiao zi this week and she was kind enough to share some with our family. Both of my kids LOVE Chinese dumplings. Mommy and Daddy do too. You can tell by the pictures how much they enjoyed them. Next up, mommy wants to learn to make them.

Sunday, October 11, 2009


It came, the COC finally came yesterday! YEAH!

Friday, October 9, 2009

Exciting news on the speech front

We had our first visit with the speech therapist last night and she was very encouraging. She said that Max had a great vocabulary, great imitation skills, and the BEST tongue tip elevation she'd seen! How about that. Who would have ever thought I'd be so excited about that compliment. She also said that Max did not have alot of the compensatory vocal methods that most unrepaired cleft kids have (this is good). She said that a lot of speech therapy for cleft affected kids is overcoming those bad habits. She is very hopeful for Max's speech progression once his palate is closed. YEAH! I think he will love being able to communicate more effectively.

Thursday, October 8, 2009

Where the heck is Max's COC?

And, what is a COC you ask. A COC is Max's certificate of citizenship. Max became a citizen after passing through customs and immigration in Newark, but we still have no documentation of that. We should have received that form within 45 days of our arrival in the US. For those not counting it's been 47 days. I need this to get Max's Kansas adoption certificate, his social security number, and I can't get his passport until I have those things. Not that we have any imminent international travel plans, but what if we're suddenly offered a trip to Spain? Really what frustrates me is I now have to try and contact the USCIS which is always a nightmare. I can't imagine when I'll squeeze that into my schedule.

To those of you who want pictures

Sorry, the lens cap on my camera got lost and I've been scared to take it out and ruin the lens. I now have a new one so hopefully I can get some good pictures to post in the next couple of days.

Wide Open Arms

I walked in the door yesterday and Max looked up at me, gave me the biggest grin and yelled "MAMA." He then ran to me with arms wide open, gave me a tight squeeze, and patted me on the back. It was awesome!

The two of us have definitely turned the corner. He lets me snuggle him at night, he comes to me when he's hurt, he gives me hugs and I love yous during the day. He definitely knows I'm his mama. I'm so glad that this happened before his surgery. I was really worried that he'd be hurting after surgery and wouldn't let me comfort him. I'm still not looking forward to surgery, but I know it will be okay.

Monday, October 5, 2009

Are you glad to be back?

Well, as of today I'm officially a working mom again. Yes, I have been working some, but now I'm officially back to my full time hours and on call time. Everyone keeps asking me "are you glad to be back?" I'm not sure how to answer that.

I love my job. I'm good at my job and it feels really good to be good at something. I also know that I was meant to do this job, and I've done it so long that it's become a big part of who I am.

But, none of that means I'm completely glad to be back. I know that my kid's lives are both easier and harder because of what I do. They experience a lot of privileges that aren't available to most kids. But, I'm also not there a lot. I know that bothers Ellie, and I'm sure that will bother Max, and it definitely bothers me. I want to be there, I really do. I want to bake with my kids, play in the park, walk for coffee for me and ice cream for them. I want to supervise their play dates and volunteer at their school. I want to be the one to pick them up from school and hear the good and the bad about their day. I want to work on projects and crafts. I want to take care of them when they're sick. When I'm working I can't always do those things. I try to do as much as I can, but the reality is that I can't do it a lot of the time. That stinks.

I love my kids, but I love my job. As my friend Joan said to another physician friend having her first child "welcome to the world of always feeling like you're letting somebody down."

Just when you think you've explained adoption to a four year old

Elise - "Mommy, do people from China fly on airplanes to Kansas City?"

Mommy - "Yes."

Elise - "Do they come here to get their babies?"