That which changed our Life Before. Part 8. Or...Meet my leetle friends!

The weeks following our trek to Virginia for Scooter's cleft palate surgery were a blur.

We took Hopper in for developmental testing, which absolutely drained our mental reserves. Instead of scheduling the testing over the course of several days, they had us bring her in for hours upon hours of testing in one day. What would have been a long day for an adult was torturous for a 2.5 year old, and she made sure to show her displeasure every chance she got. We'd do it differently and insist on staggering the tests, if we had the chance to do it again.

Some of the tests were absolutely ridiculous. It wasn't the tester's fault. She did the best she could under the circumstances, but the people who wrote the test...well, let's just say they did a bang up job. Most of the questions were pass/fail, so the child didn't get credit, if they didn't do complete the task exactly as it was written. 

Let's just say that caused some problems. Some of the problems had a hint of humor while being absolutely maddening. For example, Hopper was tested to see, if she could put a raisin in a tube. She could put cereal in the tube. She could put little chocolate candies in the tube. But for the life of her, she could not bring herself to put a raisin in the tube. In her little mind they were gross! The texture freaked her out, and she adamantly refused to pick them up. 

So while it was somewhat funny that she had such an aversion to raisins, it was incredibly frustrating that she wouldn't get credit for putting a small object in the tube. According to the test, it was a complete and utter failure, if the child didn't put a raisin in the tube.

You would think that since these tests are compiled by doctors who understand child development that they would take into consideration that children may have aversions to certain things. Considering that the point of the test was to see, if the child had the fine motor skills to put the raisin in the tube, and to see, if they understood the concept of 'in', the raisin itself should not have been the hold up. There is no doubt in my mind, my husband's mind or minds of testers around the world that the tests should be written with the ability to substitute raisins for cereal for chocolate candies, etc. Children who need to have these tests in the first place have enough going against them. The testing shouldn't be one of them.


To add to the stress of Scooter's surgery and Hopper's various tests, we were dealing with Hubster's separation from active duty with the United States Marine Corps. 


It only made sense to get all dental work caught up for each of us, all prescriptions refilled, final medical and veterinarian  appointments completed, and all medical records copied to bring with us to our new lives without the USMC. We also had to arrange for the movers to come and pack our household up and get the house cleaned for the military inspection.


The last major detail was to get the all clear from Scooter's plastic surgeon in Norfolk, so we set out for Virginia once. Dr. Magee was happy with her progress and felt it was safe for us to move cross country with our little girl. The cleft palate repair had gone well, and it was such a weight off our shoulders!


The stress had caught up to us a bit, so when Bugster brought home a respiratory bug from school, she and I ended up with walking pneumonia and bronchitis. We were advised to rest, which was easy enough for Bugster to do, but nearly impossible for me. I had too much to do.


Like clean the room we stayed in before leaving town shortly after I'd cleaned it in the first place...


We were staying in a small motel on base while we waited to be released from base housing, and for Hubster to finish up the last of the paperwork with his military unit. We'd spent the majority of the evening packing and squeezing the necessities in the car that we needed as soon as we got to Colorado, and we were tired and hungry. After I fixed something for us to eat in the little kitchenette and cleaned up, I set off to get the girls bathed, so we didn't have to do it in the morning before we set out.

Bugster bathed first, and then I went in with Hopper and Scooter to get them bathed and in their jammies, so they could go to bed. When I came out of the bathroom, exhaustion had set in, and I nearly lost it. I couldn't believe my eyes as I watched Bugster singing, dancing around and joyfully crumbling crackers all over the freshly washed counter and table top.

It didn't take long for the shock to wear off and for me to yell, "What are you doing??!!" to our oldest daughter. She looked like she was ready to cry when she explained that she was just trying to feed her 'friends'. 

Her friends? 

Yeah. Those would be the cockroaches that inhabited the base motel, and that we did not want to bring with us to Colorado!! Laughing and crying at the same time, I hugged her and dragged my weary body into the kitchen area to vacuum and scrub again before crawling into bed. Cockroaches totally freak me out, so needless to say, my sleep was fitful with dreams of them crawling all over our girls and into the crevices of our suitcases.


In the morning, still exhausted, we packed up the car, went to our friends' house to say our goodbyes.

Just a short 6 weeks after Scooter had her cleft palate surgery, we left the USMC, our good friends, and North Carolina behind.

That which changed our Life Before. Part 7.

Time seemed to fly by and drag at the same time while we waited for the surgery date to arrive. 

I did what I could on my end to be prepared. I called the Ronald McDonald House that was located across the street from the hospital to see, if we could stay there when Scooter had her surgery. They said they wouldn't know until the night before. Talk about nerve-wracking. So I called the hotel we typically stayed at that was on the bay's edge made reservations. I explained that the Ronald McDonald House may be available to us, but that we wouldn't know until the last minute. Thankfully, they said we could cancel the hotel reservations, if the RMH came through, so at least we had a back up plan.

I've always had to expect the worst and pray for the best in situations like this. That way, I would be prepared for anything in between. But sometimes, it's easier said than done, and my mind would get caught in a pattern of just imagining the worst. Considering I was still experiencing the imbalance of hormones that results from giving birth, I was a mess. I was just plain scared. No amount of planning could actually prepare me for what I felt. 


I was in a fog. I dared not give into the helplessness I was feeling. I had The Hubster, Bugster, Hopper and Scooter relying on me being able to stay strong. Before we knew it, the time for the fretting and worrying and running worst case scenarios through our heads was coming to an end.


When we got to Norfolk, we drove immediately to the Ronald McDonald House to see, if we could stay there. Thankfully, a room had opened up when another family left that morning. I called the hotel and canceled, and we got settled in the RMH.


We were briefed on the rules. We had to make our beds daily and wash our bedding before we checked out. We could eat anything in the kitchen area, but if we cooked anything, we were expected to clean up after ourselves by doing our dishes and putting them away and wiping down the counter. The girls could not be left alone at anytime. And only one parent could sleep at the RMH each night. They expected the other parent to be sleeping the night at the hospital with the child who was ill. It was all very reasonable, and it worked out perfectly, since the doctor wanted Scooter admitted the night before her surgery, so she would be ready to go first thing in the morning.


After checking in, we headed over to the hospital to Scooter's pre-op appointment, got the necessities out of the way and spent the rest of the afternoon trying to keep our minds off things and keep Hopper and Bugster happy and occupied. Before we knew it, it was time to check Scooter in for the evening, so we walked over to the Children's Hospital of the King's Daughters as a family, and Hubster walked back to RMH with the older girls to get them settled for the night.


At the hospital, I tried finding something on TV that would take my mind off things, but I couldn't even concentrate enough to pay attention to what was on. So I held little Scooter in the rocking chair and attempted to sing to her. I tried remembering the words to songs I'd sung to Bugster and Hopper, but I couldn't think straight, so I did what any mom would do. I followed my own mom's example and made up nonsensical little songs about what was happening.


At some point, some of the words stuck, and I came up with a little song that we've sung many times over the years with no regard to how corny it sounded to others.


Mama's little girl
Has a little curl
Right in the middle of her forehead
Scooter O'Shea* is her little name
And bein' Mama's baby
Is her little game


It calmed her to hear my voice, and it calmed me to know she was finding comfort considering I can't carry a tune in a bucket with the lid taped shut. Plus it gave me something to do to keep my occupied with things other than imagining the worst. 

Imagining the worst was easy for me when I first saw her after her surgery. The nurses brought me back before they cleaned the dried blood off her little face, and I thought I was going to faint when I saw her. I was terrified that the dried blood meant things didn't go well. Logically, I knew it didn't mean that at all, but when you're only 6 weeks past a major surgery yourself and dealing with hormones and the stress of your baby just having undergone a fairly intense surgery, you're not thinking logically. 


I asked the nurses, if I could wash her face off, or if it would hurt her, because her mouth would be sore. They said it would be fine and brought me a couple of washcloths and a small basin of water. And even though the nurses assured me that I wouldn't hurt Scooter, if I washed the dried blood from her face, I was even more gentle than normal. I couldn't stand the thought of seeing her with the blood on her face anymore, and I couldn't handle the thought of causing her anymore discomfort.


I don't recall how many days Scooter was hospitalized after she had her surgery, but she did very well, and we couldn't wait to go home. We were all more than ready to live together as a family again, even though we only lived a football field or so apart when she was in the hospital. 


We had realized a long time ago that we drew strength from one another, and we needed to recharge.

*Of course her real name isn't Scooter O'Shea!

That which changed our Life Before. Part 6

Feeding Scooter, as feeding any baby with a cleft palate, was a bit of a challenge. 

Physically, she couldn't nurse. For that matter, she couldn't drink out of a regular bottle, either. We had to use a special bottle called a cleft palate nurser with special cross cut nipples in order to feed her. With the cleft in her soft palate, she couldn't get any suction in order to breastfeed or eat from a regular baby bottle, even though the hole was no bigger than my small fingernail. The cleft palate nursers are made of a soft, flexible plastic to make it easy to squeeze the milk out into the baby's mouth to make up for the lack of suction, and they worked fairly well once we got the hang of it. I hung onto the hope that she would one day nurse, and I made sure that all she had in her bottles was breast milk.


Seeing a baby with a cleft palate eat for the first time takes a person off guard, as milk invariably comes right out their little nose. It doesn't spray. It just sort of dribbles. But white is just not the color of what you're expecting to see come out of nostrils. Unfortunately, it also tends to make them cough and gag when they're eating, too. Bless her little heart. Eating was a chore for Scooter.


When she was a week to 10 days old, we loaded up the cleft palate nursers, the cross cut nipples, the breast pump and the kids and took off for Norfolk for Scooter's initial consultation with the plastic surgeon. 

We stayed at the same little cruddy hotel with lots of character that we did each time we went up there. Don't get me wrong. It was clean. It was just a bit worn down and its furnishings were not updated at all, but its backyard was the beach of one of the little inlets of one of the bays in the area. For the life of me, I can't seem to remember the name of the bay it sat on, but I know it wasn't the Chesapeake, itself. But there were shells of all sorts, little crabs and fun little things that kept a little one's interest. There was even a real sunken ship! 


We would pack up a cooler of picnic foods, grab the little tabletop propane grill and once or twice even the ice cream freezer and make it as close to a vacation as we could for the kids. As adults we were scared of what lie in store, and we didn't want the kids to pick up on that fear. So we did what we could to make it as special an occasion as possible.


We left NC the night before, so we would be able to see Dr. William Magee first thing in the morning. He and his wife founded Operation Smile and traveled around the world performing plastic surgery on children with cleft lips and palates who would otherwise never be able to afford the operation, (although at the time I made the appointment I knew of none of this). Often times, children with facial deformities are shunned by their communities, especially in developing countries. By having these surgeries, the children would look normal could live normal lives instead of being outcasts. 

This was our kind of doctor.

His compassion was palpable. He put both of us at ease right away and began talking about Scooter's condition. He explained that Scooter's cleft was not only in her soft palate as originally thought, but it extended a bit into her hard palate. He said that the old school of thought was to wait until the child was 2 or 3 years of age to have the first in a series of surgeries to fix the cleft palate and subsequent surgeries about a year apart until the cleft was repaired.


However, he said that doctors were finding that, if the initial surgery was done when the child was much younger that it often meant only one trip to the operating room instead of multiple surgeries. And as frightening and overwhelming as it was, we were all in. We wanted as few surgeries as possible for our baby.


Dr. Magee also explained that when there is a genetic abnormality or a cleft lip or palate present that the bone structure in the head is often malformed and can lead to other issues. He said that the probability was that Scooter would have multiple ear infections and would need tubes in her ears, as her Eustachian tubes would likely not drain properly.


We left his office feeling elated that we had found such an incredible surgeon on one hand and being terrified on the other hand. Our newborn little baby would be going in for her cleft palate repair when she was only 6 weeks old.


We had a lot on our minds as we made our way back to North Carolina, and it felt as though we held our breath the entire way.