Self-Expression

Medium: Finger Paint on Canvas


The artist prepares by inspecting her blank canvas.

Inspiration strikes quickly, and the artist goes to work.

A quandary, what color shall I work with next?

Don't bother me, Daddy, I'm working.

Oh, the creativity is even flowing from her feet.

Behold, my masterpiece is finished.

A Sofia Miller Original. Please, no flash photography.

The aftermath. Surprising, isn't it?

Sunday, September 28th - The Meeting

Wow, we're finally caught up. I worked over the weekend and then we went to visit Andrew and Amanda tonight and introduce Sofie to Luke. They were both so cute, and Sofie looked pretty concerned when he would cry. She looks like a giant next to him!!

Friday, September 26th - The Clinic

Well the bottle feeding didn't go so hot on Thursday. She ended up taking 14 ounces for the day, which is about half of her goal volume. Not good! We knew she needed the NG back in, so we tried twice again Friday morning and still couldn't get the NG placed. I became concerned that perhaps her stomach wasn't where it was supposed to be (possibly reherniated again) and that's why we were having problems. So I called the Special Care Clinic to ask for a chest xray and a bigger size NG.

I was pleasantly surprised at the quick response I got from the clinic. It's generally next to impossible to communicate with anyone there unless you have a captive audience at a scheduled appointment. I called around 10:30 and we were being seen by Dr. R. within the hour at the clinic. She did an exam and listened to Sofie. She thought everything seemed fine from a respiratory standpoint - no signs of reherniation (so did I, but last time it wasn't obvious). I was praying it was a simple problem and that she had just simply "outgrown" her NG and needed a bigger one.

We decided to try the next bigger size of NG, 6 Fr. So I placed it and didn't get any resistance when pushing/pulling air, but wasn't able to aspirate any stomach contents to confidently check placement (no surprise, her stomach was empty). I had requested a chest xray and that was the plan anyway. We can check placement of the NG on xray, so that's where we went next. The xray looked okay, basically unchanged from her last one. The NG placement looked good too. Her poor bowels are full of air from 3 nurses (plus me) pushing air into her stomach to check NG placement. Ugh. I pulled some out after the xray while we were waiting back in the exam room.

I also fed her about and ounce and half from the bottle and then was able to aspirate those stomach contents from the NG, so I felt confident about the placement before we left.

I breathed a huge sigh of relief that the problem was a simple fix with a bigger NG. Surgery, however, disagreed. Dr. R. let them know we were there and what was going on. Surgery Clinic flipped out and made an appointment for us to come in next Wednesday, saying we shouldn't be in the clinic with such severe feeding problems. So we'll add that to our list of running for next week.

While we were in the clinic, I requested again to Dr. R. that we consider trialing Sofie off oxygen. She said she really wants her to be gaining weight better first. This is the same response I get every time. Sofie is labeled as "Failure to Thrive", although I wholeheartedly disagree with that diagnosis. I expressed my disagreement to Dr. R. and said I don't understand why she thinks her weight gain is poor when she's gaining consistently on her curve and even gained above her curve this month. Babies should double their birth weight by 6 months and she did that, plus 8 ounces. Considering her tumultuous history, I'm quite pleased with her growth at this point. She said she's still not where she needs to be, and asked if we'd given any thought to having a G-Tube put in.

I told her we felt strongly that it would be an unnecessary surgery at this point, and we are not in favor of it. Also while we were on the subject of unnecessary surgery, I told her that Sofie is scheduled for an upper GI in late October, presumably to rule out the need for a fundoplication, and that we strongly oppose a fundo. There are instances where it may become necessary and it may help, but Sofie's situation is not anywhere near that point. Fundos have a high failure rate and are permanent. Sometimes they help, but I feel in Sofie's situation, it would make her worse. And I absolutely won't subject her to further surgeries unless I feel like she is in danger without it or it would greatly improve her quality of life. In other words, no more surgery for her, barring any further reherniations (knocking on wood). I could tell by Dr. R.'s responses and body language that she pretty much disagreed with everything I was saying, but she asked and I spoke. We left it at "we'll discuss trialing off oxygen at our next appointment on the 9th."

Also while we were at the clinic, the dietitian came in to talk about Sofie's goals for volume and weight gain. She increased her goal volume to 28 ounces per day from 26. She asked about her current feeding routine, which is 5 ounces, 5 times per day. We finally have a routine that works for us and we feel like she's gaining weight well without us going nuts feeding her every 3 hours around the clock, while also running to various appointments, etc. Her suggestion was to go back to 7 times per day feedings, adding back in a middle of the night feeding. I politely explained that we were all much happier with the current routine. She said she knows it's hard to get up in the night, yada, yada, but it's really the best thing for Sofie... like I'm bad mother because I don't want to drag myself out of bed to feed her. I told her that most nights I'm up until 2:00 am anyway, because the only time I can get anything done around the house is when everyone's asleep. Clearly we don't mind getting up to feed her, since we've spent her entire life up at all hours of the day/night. That's not the point! Long story short, we won't be changing our current routine.

I've gotten to the point where I really dread going to the clinic, because they are such downers about how Sofie is doing and always make me feel like a deadbeat mom. Sofie's pediatrician is pleased with how she's doing, her FirstSteps OT and dietitian are pleased with her progress and everyone who meets her sees how happy and healthy she is. The only place we get negative feedback is at the clinic, and I've gotten to where I just dismiss most of what transpires at those appointments. I don't really know how long we have to continue to follow up there or who even makes that decision, but I'm hoping not to go there anymore past her first birthday.

After spending all day Friday at the hospital I capped off the day by going to work for 12 hours - yay! The bright spot was that I got to meet Luke, and he is such a cutie pie!!

Thursday, September 25th - The Raid

Thursday morning got off to a big of a rough start. I tried placing a new NG tube 4 times (we never try that many times!) It was the same as the night before. I think it was coiling up somewhere on the way down. By the 4th attempt, Sofie was obviously miserable and in tears and so was I. So that was the end of NG attempts for the day. I decided to let her try to bottle feed for the day and see how she'd do.

We had planned to go to my friend, Melissa's house in the morning and go for a walk around the lake nearby and grab some coffee. Because of the NG debacle, we didn't end up getting to her house until around 11:00, so it became a late morning walk, followed by lunch. Sofie had fun strolling around the lake with her friend, Lily, while Melissa and I chatted. After lunch the girls fell asleep and we ran a quick errand and then went back to their house to raid Lily's closet for some fall clothes for Sofie. Sofie woke up and had fun picking out some new clothes. Note the two different shoes she's wearing in the second picture...







After that we stopped by to pick up Garrett, and it was a full house in the back seat! Sofie enjoyed having buddies to ride along with her...

Wednesday, September 24th - The NG

Wednesday morning we had Sofie's usual OT appointment. She's getting so close to sitting on her own. I can see in just the last few weeks her core is really strengthening from the waist up. There's always room for improvement, but I think she's making really great progress. Sherry said she doesn't think she'll need OT for very long. The program is for babies from birth to 3 years of age, but we think Sofie won't qualify for therapy past a year of age, because she'll be completely caught up. Great news, but we'll miss working with Sherry!

We just hung out here at the house on Wednesday and played and napped and tried to catch up on a few things. I gave Sofie's late afternoon feeding a little too fast for her, and she threw up about an ounce of her milk and also threw up her NG tube, so I had to pull it out. We tried to replace it Wednesday evening, but we couldn't get one back in place. It would go down without a problem, but then we'd get resistance and couldn't push or pull any air, so the NG was most likely kinking up somewhere along the way to her tummy. She still has 5 Fr NG's which are really small - like thin spaghetti, so I was thinking it might be time to step up to a 6 Fr. It's a little bigger around and also weighted at the end. What is it with Wednesday nights and losing the NG? We decided to try again to replace it in the morning.

Here are few pics from Wednesday night - I was playing with the new camera...

Tuesday, September 23rd - The Tooth

Tuesday morning I had my first physical therapy appointment for my foot. Aunt Aimee came over to hang out with Sofie while I went to my appointment. It's nice because it's only a couple of minutes from our house, so I can get there and back really quickly. I had my evaluation and got some exercises to do at home and then I'll go once a week for 6 weeks for appointments.

After I came home Sofie and I played a while and then she was a little crabby and needed a nap, so she slept for a couple of hours. Then we played some more in the afternoon before going out to run some errands. She was enjoying one of her new books from her shopping extravaganza the day before.






After we ran our errands, we went out to my friend, Kristi's house (she's like an honorary aunt to Sofie). We hung out there for a while and then ran over to Best Buy to get a new camera. Our little point and shoot bit the dust at Kenny's 5 year KU reunion a few weeks ago, so I picked up a new one and then we grabbed dinner nearby. Sofie joined us with a nice gravity feed.








I've never been out anywhere and had someone say something to me about Sofie that I found really offensive until Tuesday night. Usually people just remark about how cute she is (cuz, seriously, it's hard to miss) and then ask if she was a preemie since she's on oxygen. That gives me a segway to tell them about CDH and people are always polite and interested. I've told dozens of people about CDH this way and 100% of them have never heard of it before.

Anyway, on Tuesday, Kristi and I were just talking and eating dinner and an older couple came by on their way out. The man stopped next to Sofie and just interrupted us by saying bluntly, "What's wrong with her?" It takes about a half second for a snarky comment to fire off in my head in these situations, like "nothing, what's wrong with you?" But luckily I've learned to control this a little better in recent years. So if somebody says something to me and I look like I'm searching for words, I'm generally searching for nicer words. I ended up saying something like, "she was born with some serious health problems," and then turned away as if to end the conversation. But the guy wouldn't quit. He asked why she had a feeding tube and oxygen. I shot a look to his poor wife that was meant to convey sympathy that she was married to such a jerk.


I feel like I diffused the situation pretty well, and we continued on with our nice evening. I had to remind myself of something I just said to another CDH mom this week about this kind of situation. And that was that I feel sorry for people who think there is anything "wrong" with Sofie or think anything about her is "sad." We are the luckiest people on the planet to have her, and if they only knew how "un-sad" the situation really is and what a true miracle she is, they'd realize how mistaken they are. But that's their loss, not mine, and I couldn't be prouder of Sofie.


Once we got home, Sofie was a little fussy again. She's been mildly fussy over the weekend and I just attributed it to getting her 6 month shots last Thursday. I felt her gums and...she's getting a tooth! Her first tooth has popped through on the bottom, right. She's still been really happy overall and doesn't really act like it bothers her much. She's such a happy baby. I think her other little bottom tooth won't be far behind!

Monday, September 22nd - The Shopper

Grandma Linda came to visit Monday to take us clothes shopping for Sofie. Sofie had a great time and we found lots of cute things for fall. We stopped and ate lunch outside since it was such a nice day out, and Sofie fell asleep.

Monday night we went to Kenny's softball games with Aunt Aimee. Sofie always loves to go, and this was probably the last night she'll be able to go, since it will be getting too cold out for her. Ssh, I haven't told her yet!

Sorry Fellas - She's Taken

Sofie's future husband arrived today! Luke Steinbacher was born at 5:05 PM. Congratulations Amanda and Andrew!!

Sunday, September 21st - The Plaza

Our plan for Sunday was to take Sofie to her very first Royals game. It was the last home game of the season. Unfortunately I was so exhausted after my weekend activities and working Friday and Saturday nights that I slept past gametime. Sofie was all decked out in her game day gear and so was Daddy, so I felt really bad.

Instead we decided to go for a walk on the Plaza near our house and eat dinner at 810 Zone. Sofie had a good time as usual. She loves going out. After dinner we went to Barnes & Noble so Sofie could pick out a new book. They have a great children's section on the 3rd floor with a little section of Dr. Seuss board books for $4.99, so it's a cheap outing to take her to get a new book, and she loves it. Of course Mommy loves the Starbucks on the 2nd floor too, and I always seem to pick up a new book for myself while we're there. At any rate, B&N is a regular destination for us. We were there 3 times in 36 hours this weekend. Luckily I don't have to worry about the cashier thinking we're stealing books, because they only stay looking new for about 2 hours after she gets them. On the way back to our car, we stopped at a fountain and took some pictures...

Make a Smilebox photobook

Saturday, September 20th - The Cake

After being up with Sofie all day Friday and working all night Friday, I came home to bake on Saturday. I made my giant cupcake and a dozen smaller cupcakes for the shower. I'm pretty proud of how it turned out considering I'm more of a cook than a baker and have never made a layer cake before this week. It was really time consuming though, so I'm not in any hurry to do it again any time soon. But the shower turned out really nice and we had fun and lots of good snacks. Here's a picture of The Giant Cupcake followed by a pic of Kayla, the lovely bride-to-be (left) and my friend, Sherrie (right) at the shower.

Friday, September 19th - The Jumper

I always try to sleep in pretty late on Fridays, so I can be somewhat rested for work on Friday nights. But Sofie wasn't feeling too good after getting her shots the day before, so we were up and at em' at 9:00 am. She was giving out lots of sad faces in the morning, but I did finally get her to take a nap around lunch time. Afterward, she felt a little better, so I decided to put together her Baby Einstein Activity Jumper.

We've been waiting for her to be big enough and stable enough to put her in it, and she's doing so well with her upper body control now I decided it was time for some new fun for Sofie. It took me forever to put together only because I insisted on disinfecting each and every little part as I put it together. Sofie had fun helping and then she LOVED it when I put her in it.

She immediately started exploring all the toys on it. At first I don't think she knew she could put her legs down, because she held them up in the air, but after a couple of minutes she figured it out and started jumping. She really loves it. We don't put her in it every day or for very long at a time, because we don't want her burning too many calories in it. But when she does get in it, look out, she's a wild woman. I have a scrapbook and two videos. The first video is right after she got in it for the first time and the second one is on Saturday when she really started to get the hang of jumping.

Make a Smilebox greeting

Thursday, September 18th - The Shots

Yes, I'm a week behind! I do have lots to post and lots and lots of new pictures, so I decided to break it down by day instead of having one huge monster post. We've been so busy here every day with lots of fun stuff (mostly). So on Thursday...

Sofie had a Thursday morning appointment with Dr. Y., her pediatrician. He was so pleased with all her progress since her last visit the first week of August. She had to get her 6 month shots and I also had them give her a flu shot. She'll have to go back in 1 month to get a booster for the flu shot and then she'll just need one shot every year for it. She'll also need to get the RSV shots throughout RSV season, which is usually late October through March, and sometimes into April. For that, she'll have to get a shot every month. Bummer.

RSV stands for respiratory syncytial virus, and it's a huge threat for her. It's a virus that's very common and easily spread. In normal, healthy kids it usually just manifests as a simple cold with no medical treatment required. However, in babies/kids with chronic lung disease (like CDH babies and preemies) it frequently causes more severe complications, including pneumonia. Because of Sofie's chronic lung insufficiency, she's a prime candidate for a nasty RSV infection. If she were to get RSV, she would almost certainly need extra oxygen and possibly even to be put back on the ventilator and stay in the hospital again for a while. RSV and pneumonia are our #1 enemies. Sofie's had a lot of fun being social this summer, but her social calendar is going to be quickly winding down as cold and flu season approaches.

So back to the pediatrician's appointment...Sofie took her shots pretty well. She cried right when she got them (she had to get 4 sticks), but recovered immediately when I picked her up and gave her big rescue hugs. She is so sweet!

Dr. Y. said he wants to see her back in 1 month for her flu shot booster and then again when she is 9 months old. Wow - what a break from appointments! Of course, if we have any problems we will go sooner or call him, but I'm knocking on wood that we'll all be healthy and happy with no problems.

And for the biggest news of her appointment...drum roll please...Sofie is officially "on" the growth chart in the 5th percentile for weight!!!!! She's growing so well! She weighed 12 lbs, 13 oz. at her appointment. She also grew another 3/4 inch, so she's 25 3/4" long, putting her in the 50th percentile for height. I'm also really pleased to say her head has grown quite a bit this last month too. When she left the NICU, her head was 38 cm. She wavered from 38.1 to 38.3 to 38.6 all summer. When she was at her last Special Care Clinic appointment they measured her head at 39.4 cm and I thought they just were in a hurry and messed up. I hadn't remeasured her at home yet. But in Dr. Y.'s office, they measured her at 39.7 cm. Yay for big brains!!!

After Sofie's appointment, we stopped by my friend, Melissa's house to visit her and her daughter, Lily. Then we all went out for lunch at a great little Mexican place near Dr. Y.'s office. Sofie was starting to get a little crabby from her shots and was in need of her late morning nap. So she took a little from her bottle and fell asleep. Wednesday night she had pulled out her NG tube, so we were completely dependent on the bottle all day Thursday until we got some more NG's Thursday evening. We went on a bit of a wild goose chase to get another NG. You'd think that being a nurse, I could swing this fairly easily, but that wasn't the case. In the future, we'll double check our NG counts at home a little more closely. Lily and Sofie had a blast riding in the car together and they both ended up falling asleep with their binkies hanging out of their mouths - so cute! I wish I had taken a picture!

Thursday afternoon, Sofie and I played together and worked on more tummy time and OT exercises. I got some really cute pictures of her! Here's a scrapbook, followed by the jpegs for those that can't view the smileboxes.

Make a Smilebox photobook