Update

We saw the specialist for Precious on Monday. She has fluid in her ears which necessitates tubes (not unusual for a baby with a cleft--or lots of kids). They did a hearing test and there is some minor hearing loss. But this came with a dilemma--do tubes now or wait until the major surgery. Doing tubes is a pretty common procedure, but does require anesthesia. Hubby was all for tubes--both his older kids had multiple sets and it's no big deal for him. It's really only a few minutes. I said, "but it's my baby..." AND, Precious hasn't had an ear infection and doesn't seem bothered by her ears at all. Our specialist said that if she felt strongly that something was right, she would push us hard. In this case, she said, there's not a clear right or wrong. While we were doing the hearing test (and thinking about what to do), she said she asked all her colleagues who were in that day their opinion and it was evenly divided. "You are good parents, no matter what you choose," she told us. And, she also told us that as Precious is growing so well, that if we want to do surgery earlier we can--do both at once then. Hubby asked about whether the ears would get worse if we wait; the answer is no. I asked, "If it was your child, what would you do?" Without a second's hesitation, she said she would wait. So that's what we will do. Her response pushed me over the edge to the waiting side.

Precious is scheduled for her 3 1/2 hour (!) surgery on June 12. If she has ear infections or seems bothered by her ears or we notice significant hearing loss before then, we can reschedule and do things earlier. So...now we know...and I'm starting to worry. They are going to put my baby under for 3 1/2 hours! So I'm trying not to think about it too much. Easier said than done. I never forget that she has a cleft palate, but I had gotten so it wasn't all-consuming. It's back to all-consuming, which I don't have time for. I have so much to do; I can't do it all; and I'm so overwhelmed that I'm not functioning on all cylinders. I lack motivation and I'm tired. I just want to stay home and snuggle with Precious (and Baby Girl)--neither of whom would be content to snuggle all day, but there you have it.

Jarring...a post about prayer

Baby Girl goes to preschool two mornings a week. At the Roman Catholic preschool. I expected religious lessons and prayer. (Side note--at orientation open house, we received the packet with rules for bringing snack, etc. At one point, it says if you do not wish your child to participate in the religious curriculum, an alternative will be offered. Really? Why would you send your child to a religious institution and NOT expect religious instruction at some point? At the very least, shouldn't that have been given prior to registration? But I digress.)

She regularly brings home little learner leaflets similar to many Sunday School curriculum I've seen over the years. The first week, it came home in a folder that listed all the lessons. I commented that I'd be most interested in the one labeled, "We Love Mary." Don't get me wrong; I have nothing against Mary. But I'm Lutheran; we look at Mary a bit differently. And I'm not worried--Baby Girl is 3, I'm guessing it won't be too in depth even if they get to that lesson!

None of which is the point...the point is prayer.

Tuesday morning, as usual, I took Baby Girl to school. Precious has a bad cold and we had a funny schedule Tuesday, so mom came to my house to watch her instead of us going to mom's. So Precious wasn't with me as she normally is. I signed Baby Girl in to class and went across the hall to the Book Fair. I couldn't resist--I love books. Thankfully my purse was in the car.

But I killed enough time that it was time for morning announcements..."Please stand for prayer." I expected Baby Girl to pray before snack, but I didn't expect whole school prayer. I student taught at a Roman Catholic school and we didn't do that. All of a sudden, I was nervous--was I supposed to pray? Should I keep looking at the books? What should I do? It was jarring, sudden. I wasn't prepared to pray in that moment. I missed the crossing myself during 'the name of the Father, Son, and Holy Spirit' and then it was the Lord's Prayer. I can do this, I thought...except for the jarring end! Remember, I'm Lutheran--we say, "for thine is the kingdom, and the power, and the glory" before we say Amen. I was completely not prepared for the Hail Mary or Glory Be. (Or the Pledge of Allegience which followed prayer...but that's another story)

I can't say why exactly I found it so jarring...

But I find myself thinking that I should go to the Book Fair again on Thursday. It might be a good reminder about how to start each day.

Don't Stress About It

Says hubby at noon. So very unhelpful...

Baby Girl won't admit to wanting to nap, but doesn't want to stay alone watching tv.

Precious doesn't want to be put down, period. And screams if we are in bedroom with Baby Girl.

Hubby is working outside because he wants to get further on shed and has help today.

But, I have to write a sermon. The other stuff that should get done -- laundry, bills, filing, watering plants can wait. But I need to write this sermon and have nothing...nothing...

Yesterday sucked--I wanted to scratch the last post and say I'm not even feeling like a good mommy because Baby Girl was pushing every button.

I'm so frustrated with life at the moment...

Maybe it is post-partum depression. I just don't know what to do about it....because medicine won't give me more hours in a day or a family who does more than they do...

posted one-handed holding precious in room next to Baby Girl who hasn't noticed I'm gone...here's hoping she went to sleep...might be able to sermonize!

Adjustments

I was originally going to write about my recent chiropractor visit and how the adjusting is helping my back. Some--not fully yet. But if I had the time to do the icing he suggested, it might be better. I go back Monday.

If only other adjustments were so easy. I'm having a really hard time with this parenting two small children thing. I feel like I'm being an okay mommy. But that's about it. Walking into my house sucks the life out of me. I have so much that needs to get done, but I just can't get on top of it. And, because of that, I often don't even try. And when I do, something else comes up. Like now...

Heartbreak........Tempered

Precious will be five months old next week. It's been about four months since the diagnosis of her cleft palate. It's been about three months since she really nursed at all.

That breaks my heart.

We gave it a valiant effort. But she knows that is where the milk is supposed to come from and got so frustrated when it didn't. And she had to start having bottles without nursing anyhow when I was at work. I admit, I was clinging to trying to nurse even some of the time, hoping that after her surgery, she'd want to try again--even just once a day. Baby Girl nursed until 15 months, the last month or so just once a day.

My letdown is still quick for the pump, but my body is trained for the times I pump and doesn't let down for her as quickly as it did before even when it's close to a time to pump.

Occasionally, though not often, I'll try again. And I swear, if a baby can look up at you like, "Okay, mom...I'm indulging you here," Precious does. But then she gets frustrated and cries--and then I start sobbing and my heart breaks again and again.

And so I've mostly given up trying. Because why should I put both of us through that?

The best I can do (for me, of course) is to pump for her. She is getting only my milk right now--and has been for almost 3 months. Formula's not evil, but I'm good at making milk. Why shouldn't I do this?

This post has been written in my head for sometime, but I could write it now because I could add..."Tempered."

A few things temper my feelings...
I'm pumping more than Precious needs--I've donated nearly 200 ounces to a milk bank plus have nearly twice that much in the freezer for Precious. Hubby doesn't understand why I want to doante some milk. And I can't really explain it, but it makes me feel better about myself, about this not being able to nurse thing. I'm not only attached to the pump for Precious but for some other baby who maybe needs it even more.

And I know this is not the most heartbreaking thing in the world. Close to me, a woman who was so excited to welcome a new granddaughter within the month is full of grief. Her father did this spring, she was looking for some joy in her life. The baby was stillborn last week. To hear that breaks my heart for that family.

And Precious knows me. I know she did before, but it's obvious now. Yesterday afternoon I was at my mom's with the girls. I was trying to get some work done on the computer while Baby Girl napped. Precious was fussy and Mom was walking with her. I finished quickly as she continued to fuss. I walked over toward them, she leaned toward me, gave me a big smile and stopped fussing as soon as I took her. She knew I was there and wanted MY attention.

But I won't lie; my heart still breaks sometimes.

Visit(s) with the Specialist

Less than a week after the diagnosis, we headed with Precious to the nearby University Hospital to meet the specialist. We went again a month or so later, so the visits are blurry in my head. But they boil down to the same things!

I really, really like the specialist. She's young, with 3 children, the youngest of whom is only a few weeks older than Precious. She was empathetic to me--especially around the area of breastfeeding. She gets it--from both sides, the mommy desire to nurse but also the difficulty it is for babies with clefts.

She made it clear that she didn't want to discourage breastfeeding, but it is really so hard for babies. A normal feeding should never take longer than a 1/2 hour, otherwise Precious burns more calories than necessary for optimal growth. So, she said, if we want to keep breastfeeding by all means do so. BUT, if it takes, say 20 minutes to take a 4 oz. bottle, nurse for 10 minutes and then do the bottle. AND, when there are times it is clearly for comfort, let Precious nurse as much as she wants--if she's not hungry, she'll do what she needs to do and can control how much she is really working. How that's working out will be its own post....

We thought it was only the soft palate, but she indicated that it also is the edge of the hard. Still, probably one of the least severe type of cleft.

Precious will need surgery for sure--at least one. This will be when she is 12-15 months old. That's the optimal time. Big enough to handle surgery well and young enough that most language isn't developed. Depending on how the surgery goes and how speech develops, she may need speech therapy and/or another surgery later down the line. By the time of the surgery, she will need to be weaned from any 'sucking' things--pacifiers, bottles, straws, etc. (She can still, of course, have breastmilk--just not from anything she needs to suck!) After the surgery, they don't want her sucking because it could rip the stitches out. And, for 3 weeks, we'll have to put her arms in splints at the elbow so they can't bend. No chance to get her hands in her mouth if she can't bend her arms! We think she'd be a pacifier baby if we let her, unlike Baby Girl who never liked one, but we aren't even going to introduce one. Precious does some sucking on her fingers, but often makes sucking sounds even without anything in her mouth. Can't do anything about that I guess!

The big goal was to get her up on the growth chart by the second visit with nutrition coming from formula or breastmilk or both. We did it! We did about 1/2 formula and 1/2 breastmilk for much of that time in order to bulk up calories as we knew how much the formula had. The doctor was pleased with her progress and said we might be able to consider surgery earlier, but we'll decide for sure at our next visit which is in January (unless we have concerns before then).

Precious will be more prone to ear infections and fluid build-up in the ears because they can't/won't drain right. But tubes for kids and ear infections aren't that unusual. I'm hopeful she will be like her sister though and not have many!

The specialist had also told our regular doctor that she was impressed with how little weight Precious had lost in that month pre-diagnosis. Precious had worked hard! And now we just treat her like a baby--do all the 'normal' things at the 'normal' times. She did warn us that solid food will be messy! Precious will have to learn how to use her tongue to force the food down the right way--and until she does, food will come out her nose. When she does spit up now (rare though it is), it comes out her nose. I'm glad she told me--I think I would have freaked out to see peas coming out her nose! And when you look at an image of how the body is made, it makes sense. The cleft opens up her sinuses so instead of food going down, it goes up.

All in all, things are good. It's good to know what's coming, to have time to prepare. And to not have concern about Precious' growth cloud every waking moment.

By the Numbers

3 towns
3 houses
6 vehicles
8 jobs
2 Master's Degrees
2 babies

10 years!

The numbers don't contain the stories--in fact, I had to really think about some of them. But they point to something--our life together as it changes and as it stays the same. Sometimes it feels like forever and other times just like yesterday that we celebrated and headed out for our corn field honeymoon! Happy Anniversary Hubby!


(Visits to the specialist for Precious will come next time I post!)