Surgery for Belle

It's been confirmed. Our little Belle is going to need surgery.

When she was born she had some swelling in her head that they believed was due to the vacuum and forceps that had to be used to get her out during delivery, but they wanted to keep an eye on it just in case. So when she was two days old, our pediatrician, Dr. Mumford, came by to meet us and check on Belle. When he looked at her skull he felt along the back and the top and was concerned by some raised sutures. He said that may have been because of some prematurely closed spots on her skull. 

This was starting to sound horribly familiar, so I asked "Is it Craniosynostosis?"

Dr. Mumford looked surprised that I knew the term, so I told him Stephen had had it when he was a baby. 

Craniosynostosis is when one or more of the sutures in an infant's skull fuses to bone prematurely, leaving their skull with an odd shape and the brain with no room to grow or develop. Stephen had surgery for his when he was nine months old and has metal plates in his head and a long scar that goes ear to ear around his head from the surgery. Overall, his seemed very intense.

Dr. Mumford said that he wanted to keep an eye on it and that if the raised suture didn't go down in swelling we would need to see a specialist to go over our options, so at that point all we could do was wait. I called Stephen (who had gone home to take a shower and had just barely missed the pediatrician) and explained what the doctor had told me and he came back to the hospital minutes later. 

We were both pretty worried and spent the day in a fair state of emotional wreckage, but that night Stephen gave her her first father's blessing and we knew everything would be alright.

The sutures didn't end up going down so at Belle's checkup after we were discharged they set us up with a specialist at Primary Children's Hospital in Salt Lake. Naturally we couldn't see him right away so we had to wait about a week to know for sure what would need to be done about her head. 

It was agonizing.

Finally the day came and we left bright and early to go see Dr. Siddiqi. We had read and heard great things, he is the Chief Pediatric Cranio/Facial Surgeon at Primary Children's, one of the best pediatric hospitals in the country, so we were very happy with that. We got there and checked in at the clinic for the consultation, a process that took way too long. I had a bit of a difficult time getting a rather inept secretary to understand the concept of Medicaid, but eventually we got back to the exam room. Finally we were about to see the doctor!

Then a receptionist came in and told us they didn't take our insurance.

She went on to explain that they take Medicaid at the hospital itself, but not at the clinic, and we would have to reschedule an appointment to see Dr. Siddiqi at the hospital for next week.

I think I almost had an aneurism right then and there.

As we were getting ready to leave, the Doctor walked in and said "Insurance trouble?". We let him know the situation and, possibly knowing how worried we were, said he'd go ahead with the consultation "off the books". 

We really like our surgeon!

After a quick exam he was able to tell us that Belle has the most common type of craniosynostosis, in which the sagittal suture is fused (this is about 55% of synostosis cases). Since she has only one fused suture its referred to as "Simple Synostosis". Stephen's metopic suture was closed (which only affects about 5-15% of cases) and he didn't have a soft spot making it a "Complex Synostosis". She will be in surgery for an hour and a half and will only have to stay in the hospital for two days with no time in Infant ICU.

He explained that Belle will need surgery at around 2 months old. They will make two simple incisions and remove a section of the bone where the suture should be. This will basically give her one large soft spot and she will need to wear an infant helmet for six months to get her skull properly shaped. The best part of it all is how low risk the surgery is. The surgery has been refined and perfected since Stephen had it almost twenty five years ago and we feel very blessed to be close to such a good hospital and have such an experienced surgeon.

Belle is already proving to be a little trooper and will be just fine with a little recovery time!

Things We Learned from Having a Baby

Babies will sometimes give you a little warning look when something bad is about to happen

For the record, this is Belle's "Poopy Face":

"Parental Instinct" is very real
We have never had more erratic sleep in our lives. Not because Belle is a bad sleeper, she is actually pretty good for a newborn, but because every sound sends us flying out of bed to check if she is still breathing. At the hospital I set an alarm to make sure she woke up at least every four hours to eat and I found myself sitting up in bed ten minutes before feeding time, wide awake, saying "Alright I'm ready!". Yesterday she was taking a nap in her bassinet just a few feet away from Stephen and I on the couch when we heard what sounded like throwing up. Not spit up, this sounded like substantial throw up. We both shot up and sprinted across the room, sending things flying off the coffee table as we scrambled to get to her. Stephen picked her up immediately and went for the bulb syringe while we checked to see if she was choking when I noticed a little wet stain on the mattress where her diaper used to be.
"Honey?" I said "I think that was just poop..."
We stood there in wild-eyed adrenaline fueled confusion for a moment before we agreed that maybe we were just a little wound up.

Sometimes it can be really nerve wracking. Belle had some swelling in her head from the vacuum and forceps (they had to use both even though it was a C-Section) and someone from our pediatrician's office came down to check on her. She had a very tender spot on the back of her head that had been hurting her and the doctor went in and pressed on it, feeling around like it was nobody's business. Belle let out a little pained squeal and started to cry and I nearly jumped out of bed and punched the woman in the face, anesthesia, stitches, and all. Luckily our actual pediatrician was much more gentle with her!

As soon as you change their poopy diaper, they will poop again

I don't know. It's just nature.

Maternity Nurses may be the most caring and patient people on the planet
Sure, I knew that nurses have a hard job and they had to take care of people, but I guess you don't realize how much that means until you are that person. Obviously being cut open, having your insides exposed, and losing thirty pounds of water and human baby leaves you in need of a little help with simple things like using the bathroom and being a paranoid first time parent leaves you with a lot of questions that could probably be considered really dumb. But when you're stressed and in pain and worried and you have no idea what to do it's really nice to be able to pick up the phone and have someone in your room within a minute to help you. After my surgery they told me I'd need to stay for five days and I wasn't really happy about it, but after the first night I was so grateful I'd have the nurses and doctors there to help with all those first time parent problems.

Sometimes Daddies make the best Swaddlers and Burpers
Neither swaddling or burping a baby is rocket science. It's not difficult and anyone can really do it. Or so they say... For some reason, Belle sleeps longer and deeper when Stephen's the one to burp and swaddle her after she eats. I've been told babies like mens' voices because they're deeper and that tends to soothe them, but maybe it's because he's just a better cuddler!

Have Patience

Of course have patience with the newborn, they are completely helpless and they can't control anything that's going on. That's a given. This breaks down more into two categories.

First, be patient with others. Having a baby is only hard for the parents (and probably the baby). Everyone else is just excited. First, you'll get a ton of unsolicited advice, most of which is welcome, but the problems come mostly from our more... well, elderly friends and families. Advice gems such as "Put jelly on the tip of the baby's bottle so they'll take it," or "Don't put lotion on your baby because their skin needs to get tougher and lotion is just making them weak,". Some of those older theories on childcare can be baffling, but it doesn't hurt to smile and nod and then just write it down to make jokes about later. 

People also tend to be a little insensitive, most of the time unintentionally. I was talking to a friend just days after Belle was born about how the doctor told me it was unlikely I'd be able to have a natural delivery and that, because of my body type, I'd most likely have to have C-Sections with the rest of my children. I was expressing some sadness at this because I wanted the experience of a natural delivery and this friend, with the honest intent of comforting me, said something to the effect of "It's okay, C-Sections are the easy way out anyway,". This made me feel even worse. Not only did it de-value a scary birth experience, it hurt my feelings. Things have been said offhand by multiple people since then that I have to remember are meant with the best of intentions. No one is trying to make you feel bad.

Second, be patient with yourself. Because of post-partum (this can affect dads too by the way), overwhelming lack of sleep, inexperience, and the aforementioned unintentional insensitivity, it's hard to not feel like a bad parent sometimes. Just remember that you're not. You and your baby are both new at this.

Do What Works

Maybe we can chalk this up to the fact that Belle had been held almost non-stop by not only her parents, but by grandparents, aunts, uncles, cousins, friends, and extended family for the first week of life while we were still in the hospital, but she absolutely refused to sleep if she was not in my or Stephen's arms. We had her bassinet all ready to go, right next to our bed, and she would cry immediately if we put her in there to sleep. After a few nights of struggling, we gave up. I slept out in the living room (Belle curled up on my chest) on a recliner that laid back a lot like how the hospital bed worked and Stephen slept next to us on the couch for moral support and late night diaper changes. At least this way we could get a decent night's sleep. 

We did this for a few nights while we tried to figure out the bassinet. At one point I put her down on a pillow sitting on my legs while I opened some mail and she settled right in. We tried that in the bassinet and while that was better, she still wasn't staying in there very long. Eventually we figured out she was cold because the pillowcase was a more silky material, so after putting the pillow in the bassinet and covering it with a flannel blankie, she is now sleeping in her bassinet for stretches of over four hours!

It Gets Easier

We made a mind blowing discovery soon after Belle was born: Being a parent is hard. It's something you hear all the time and think you understand until you have the baby and your life spirals out of the ordinary. That first week is killer. Your sleep schedule is thrown out of control, you do very little outside of caring for a small, living, feeling thing, and on top of it all, you can't communicate. Being a newborn has got to be the worst. Not only do you have very little control over your body, you have no way of indicating what's bothering you. And if you're the firstborn, you get to put your life in the hands of two greenies who can barely change a diaper. Basically, it's difficult for everyone involved.

But it does get better.

Easier may not be the best way of putting it, because being a parent is always hard, but it becomes "easier-hard". For example Belle's first week of life was insanity with her sleeping schedule. She would sleep for an hour then wake up hungry and repeat all night long until Stephen and I were both bleary-eyed zombies. We thought it was going to be that way forever and we were both going crazy. But by the second week things started to change. I don't imagine it's always a two week adjustment, it may be longer or shorter, but we've realized that with everything that has presented a challenge (sleeping, nursing, diaper changing, baby gas) it has gotten easier-hard.