The Goodwins

Unfortunately the battle with Ella’s front sutures is lost. The sutures have failed and her expander is exposed.

We are going to head into Chicago in the morning and Ella is scheduled for surgery sometime around 11:30 AM. There’s a chance we can head home tomorrow as well, otherwise we’ll be heading back on Saturday.

The current plan is to continue the expansion in the rear expander and then see if it’s possible to insert a new front expander in July when the rear expander is removed.

Amazingly, she’s in very good spirits. The doctor compared what Ella was likely feeling after the rupture to what it feels like after a zit pops. Despite the area looking really, REALLY gross (and I’m not kidding, it’s GROSS), Ella is still as cute as ever!

We, more now than ever, can really use your prayers. We’ll keep everyone updated. God Bless.

This stinks!

I knew the tissue expander process was going to be hard to go through, but I just hate that Kirk and I have to make Ella so mad when we mess with her head… of course we know it is for her own good, but her tears and screams tell us that she doesn’t buy that.

We’ve decided that she needs another - even more fashionable (ha!) - haircut tonight. The sutures on her forehead are oozing some lovely goo. We think (hope) that it’s part of the original infection and that we’re still getting her cleaned out, but it’s getting all matted in with her hair every time she takes a nap or goes to bed. So tonight the clippers come out again and she looses even more hair so that we can keep her healthy.

Her smiles still warm our hearts, but the tears are killing us! Especially daddy as he is the bad guy more often than I am, and he’s not home all day to see the smiles and hear her belly laugh when dolly does something funny.

Maybe if we all shaved part of our heads I’d feel better.

hmmm… probably not.

Our hearts have been touched by the thoughtfulness of our friends here in St Joseph; always willing to lend a hand or an ear when we need it! Most recently Ella has been showered by fashionable head wear to carry her through the next few months of expander growth. She wore her first fabulous new look out to run errands with mom today, and got all kinds of compliments and smiles!

We thank God everyday for those who have helped to lift our spirits.

Ella is doing much better today! In fact I’ve been having trouble getting pictures as she’s moving around much more - makes everything come out blurry!

She was still a little puffy when she first got up, but she could actually open both eyes! And she’s looking better and better as the day goes on - yeah!

We’ve determined (we think) that she got a mild infection from the hole that was created on the side of her head from her glasses rubbing the tube that runs between her port and the actual expander. Something that could have been avoided if the tube had been placed elsewhere, but at least the infection is manageable and better than a problem that would require extra surgery!

Thank you to everyone for the love and prayers that you sent our way - it helped us to get through it all!

Hopefully Ella will now continue to mend!

This morning we found that Ella’s right eye must have felt left out and joined the fun as both eyes are completely swollen shut. Amazingly, she still has good spirits. After a bit of time, and some Motrin, they’ve opened up a bit and she’s up and playing. Hopefully this is a sign that this is an infection or an allergic reaction (all the leaves and flowers are really “popping” here and I’m certainly feeling my allergies kick in), both which can be helped with medicine and isn’t a sign of a failure of the expander.

We’re going to get in touch with the doctor and see if Benadryl may be appropriate to reduct the swelling. Keep those prayers coming.

We’ve completed our second injection into Ella’s tissue expanders… there were tears, we are all tired, and only one of us is sleeping peacefully.

We managed to get a partial nap in Ella on the way to Chicago, but it wasn’t enough. As soon as we walked into the back of the doctors office (away from the toys and other kids) she started to whimper a little, but she still smiled and charmed her nurse. When we started messing with her the screaming started… Ella is not a girl who cries often or for very long, and this was like a storm raging through the office. I think if Kirk wasn’t being strong for his girls he may have had a few tears too - he doesn’t like his job in this process. Hopefully when we start doing things at home next week we can fit it into Ella’s schedule a little better.

After the injections Ella buried herself on dad’s shoulder and occasionally looked up to sign bye-bye and/or car - she was ready to leave! She laughed at the Veggie Tales movie in the car and enjoyed mom and dad’s custard at Culver’s about half way home. A bath with dad, lots of books, and all is well. She is asleep, happy in her own bed.

Maybe Kirk and I will sleep peacefully when this is all over.

We are two weeks out from Ella’s return from surgery. Tomorrow we once again head to Chicago. We will have Dr Bauer check Ella’s port near her temple. Unfortunately one of the tubes to one of the ports crosses her temple and her glasses have caused a scab there. Please keep in your prayers that her glasses won’t damage the tube as Ella really needs to wear her glasses and the tube is pretty necessary as well. I understand the port could be moved externally, put that seems challenging for a two year old.

We will also add more saline, likely over 30 ml, in each port, so Ella will likely look considerably different tomorrow than she does today.

Yesterday I took Ella into get her blood draw to test her TSH and T4 levels (thyroid tests). Her TSH levels had been high for the first year or so of her life, then fell back to the “normal” range allowing us to move to testing only every six months. We went in to the outpatient clinic here in town and Ella seemed recognize where she was as we were checking in with the administrative assistant. However, all doubt was removed when she saw the phlebotomist and immediately began to cry loudly.

Her crying continued, despite her dad promising her ice cream, through the blood draw (although she didn’t seem to notice the actual draw) and only increased when the phlebotomist put the bandaid on her. However she was fine and blowing kisses to everyone by the time we were out of the back room and into the waiting room. Of course we went over to Roger’s grocery store and I let Ella pick out ice cream (twice), then she signed “cracker” so we went and picked those out, again twice. Of course the same aisle had cookies as well, so yes, her dad still with a bruised heart from the blood draw, let little Ella pick out two different cookies as well.

Unfortunately the test results, while finding the free T4 level to be in the normal range, the TSH level is elevated. While it is not as elevated as it has been before, I except her blood draws will continue and likely increase in frequency (as well as ice cream purchases). We should hear from her specialist in a few days to understand what the course of action will be.

It’s funny how we can put issues in the back of our minds when other more “pressing” issues are present. With all of the nevus issues I wasn’t even thinking of thyroid issues. Of course, all this is manageable and we’re blessed that we’re able to monitor such issues.

I hear Ella fussing a bit downstairs so I’m finishing up and going to give her a hug or two.

Today our little family was once again in Chicago and Ella is a little lighter in the head, missing her surgery hat and drainage tubes… however, she is also a little heavier as Kirk and the nurse injected her expanders with an additional 35ml of saline (15 in the front and 20 in the back). Her head is officially taking on a strange shape and the haircut from surgery isn’t quite in style - especially considering all the detangling that was required after 10 days under her surgery hat… dreadlocks are in right? But her smiles are still so beautiful!

Kirk and I are very thankful for our friend from church Karen, a nurse here in St Joe. She met us in Chicago with her husband and two sons in tow (they went to the zoo) to learn the injection procedure with us so that we’ll have a backup here in town. We have had so many blessings along the way and Karen has been added to that list!

Once again Ella was a trooper - she did cry, pretty hard, but I am attributing that more to the lack of a nap before the appointment than to any real discomfort. She was really mad about the numbing cream rubbed on the injection ports; maybe it was cold? But once the gel was in place she played happily for about 30 minutes while we waited for it to kick in and while the nurse was reviewing the procedures with us. And she did not cry during the actual injections so we know that she should do fine when we are on our own. Kirk was amazing to - he is an incredibly loving father and while it hurts his heart to push a needle into Ella’s head, he is strong and steady; instilling confidence and faith in both his girls!

When we came home I walked into our kitchen and smiled at the beautiful vase of flowers brought to me earlier by my friend Miss Barb (Ella’s part-time therapist, friend, and now babysitter - if she’ll come back after Ella’s afternoon of tears this week!) It lifted my spirits, and I needed that!

Ella did finally get a good nap on the way home and she ate a big dinner - bigger than she has all week! Maybe the medications upset her tummy? Or maybe it was just all her struggling to avoid taking them that messed with her appetite. But luckily now that the drainage tubes are out she no longer has to take them, and Kirk and I (mostly Kirk) no longer have to wake her at 1am to force them into her.

After dinner we took a short family walk and Ella laughed and smelled all the flowering bushes in our yard! She giggles when we laugh at her efforts to snort air in and out her nose! We shared some ice cream, and gave Ella a bath… at long last we have washed her hair! That made mom feel better too.

So now Ella is sleeping peacefully, and Kirk and I are relaxing together, happy knowing that all is well with our beautiful girl!

It has been one week since we brought our two year old home. Our little Ella is doing well. We have good nights and bad nights. Last night was one of those a bit worse than others. We finally got her to sleep at about 12:30 and her 7 AM medicine time came way too early for both Ella and her folks.

Tomorrow we head back to Children’s Memorial to have Ella’s drainage tubes out and then learn how to inject the saline into her expanders. We are blessed that one of our friends from our church is a nurse and her husband agreed to take the day off of work (he’s a co-worker of mine at Whirlpool) and she will join us at the doctor’s office to learn how to do the expansion, along with me, to be a standby if I am out of town due to work or if I simply can’t handle it. Bonnie has already decided that she’s not going to be the one to “blow up our daughter’s head” as I have been heard to say.

Ella’s head was shaved in a few places to view he edges of her nevus so once the “surgery hat” comes off we will need to figure out a new hair style. Right now she looks like she has an older sibling that decided to “help” give her a hair cut. I’m guessing Bonnie won’t be a proponent of the Sinead O’Connor look so we may need to be creative with it. We’re not sure if we can wash her hair when we get back tomorrow, but it sure can use a good cleaning.

We put Ella down to bed about an hour ago and I still hear here moving around downstairs in her room through the baby monitor, so please keep her sleep (and her folks‘) in your prayers. Please also keep in your prayers a successful, safe trip and that Ella tolerates the expansion reasonably well and remains her cheerful self!