Mommy report: Overall update

I thought it might be time to kind of bring everyone up to speed on where we're at, in adult terms. :o) This might be a little long, but so many of you are so kind to ask about what's up that I thought I'd just put it all out there at once.

General health--Braska is doing well, hasn't been sick yet (except for rotavirus, of course) with any kind of cold or ear issue or anything, and for that I am SO very thankful. I think that's quite an achievement for 9 months, myself. Her heart seems to be pumping just fine after the repair, which is now 6 months ago. Seems like yesterday and 3 years ago all at the same time. Her thyroid is functioning properly, and her other labs have been good. EXCEPT for the last two draws which have shown increasingly elevated hemoglobin. (Very minimally elevated, though.) No one seems to be too concerned about it, but they are keeping any eye on it, I guess. We'll have it checked in 3 months at her one-year visits if not before. But we hope it's nothing. The only thing mentioned is that it might be an oxygen issue of some kind, which sounds like it needs to be checked out, but no one seems in a hurry at all and they all say it's nothing to worry about. So I won't, for now.

Therapies: occupational and developmental--These are going well. She continues to cooperate most of the time and is getting stronger, but it's all about when she decides she's going to do the next little thing. When she wants to sit, she will, and until then, there's not much we can do to entice her. The therapists have both noted that we have yet to find a toy that motivates her to do anything really. The only thing she reacts to every time is an open hand coming toward her face slowly. That's about the only time she will reach high with both hands and grasp quickly and firmly. She takes it directly to her mouth and gums like crazy. Any other toy may garner a gaze, and sometimes a lackluster reach, but that's about it. She's a picky one, that's for sure. She has become much more generally energetic in the last week or so, probably due to an increase in her amount of milk per day. Since she doesn't really indicate hunger at all, it's hard to know how much she needs/wants. Which brings us to the next category...

Feeding--Inconsistent is the key word. She will do several things, but none of them with any consistency. She will eat solids pretty well, but usually only once a day, and usually that is in the evening. She eats green beans with rice, sweet potatoes, squash, and beef with applesauce, each in little bits, and if she's in the mood that particular day. But she'll eat bananas and banana pudding about any day, as well as applesauce (not baby, big people applesauce), peaches occasionally, and pears rarely. She definitely likes her sweet things. She still refuses to suck on a bottle, but she will sometimes chew on it and swallow what she gets from that. She will take drinks from a particular sippy cup if they are given in small doses, but only a few at any sitting. Our big challenge is definitely to get her to take fluids, so most of her feedings are still done by NG. She's getting about 24 oz a day in 4 feedings, which we just went to about a week ago. Like I said above, she has responded to the increase in amazing ways with more playfulness, more general movement, wiggling, etc. She's always been happy and content, but she is now a bit more animated and less likely to sit still on a lap, which is good in the big picture, I guess. Louise was very happy with her first time to watch Braska eat yesterday, and she is optimistic that we'll be able to make strides toward being independent of the tubes, but probably not soon enough to avoid the G-tube. So about that...

G-tube--I talked to the GI dr's office again this morning and they're determining if we need to have any testing before we get on the schedule for the PEG process. (For those of you who are less "internet-familiar" you can click on PEG process to go to a description of the whole deal.) I would guess that we're looking at possibly the week of the 10th or the 17th of September to get it done, unless there are more things they want to check out first. I should get a call back later this morning about that. I'm resigned to the fact that it needs to be done, so it's ok. We'll handle it like everything else, learning as we go. Mostly I'm praying for no complications to what should be fairly "routine."

It's amazing to look back and see how far we've come. I find it hard to even remember how life used to be, and that might be a good thing in some ways. For now, we're moving forward and smiling as we go. She's a real peach of a kiddo, I must say, and I'm thankful for her everyday.

Thanks for taking the time to come by so often and keep up with us. It does so much good to my spirit to know there are so many friends out there who care enough to check in. And it's even better when we get to read your comments!!!

Still don't wanna

So I've spent alot of time this morning looking over information about G-tubes, specifically the PEG process, which is what our doctor would use. Braska doesn't seem to be improving in her eating, and I'm just getting tired of the battle. I feel like that makes me a bit of a mothering failure, to be honest, yet I know that I've tried everything I can for 9 months now. I just hate to put her through another procedure, and I guess I've become a bit paranoid about the possibility for complications. As I told a friend yesterday, they say it's routine, but what's routine? How can poking a hole in my baby's tummy be so routine?

I guess this is just another one of those situations when being the adult is no fun. So many people say that their kids did so much better once they got rid of the NG and went to the G-tube, but then there are a few who seem to simply have a different set of problems. And if I'm going to have problems anyway, I'd rather do it without having to put her through this royal poking. I'm still struggling with the fact that my gut is telling me not to do it. But what is this gut anyway? My fear of the unknown, more work, new things to learn about how to care for her? I suppose I'm not so sure I trust my gut anymore, or at least about this one thing. I think I've probably thought about it too long.

When I have a big decision to make, I like to look at the pros and cons....usually making a list of them. (Thanks to Mom for that habit.) Even if I know on some level there is really a right way to go, I like to be sure I've considered all the options and made the most educated and thoughtful decision possible. My husband doesn't particularly like this part of my personality, I don't think, but it helps so much when he'll actually humor me and have a full-on, weighing-the-options, decision-pondering discussion with me. But we haven't had one of those in probably 2 years, so I'm out of luck there. He says just do it... get the G-tube, so she won't have a tube in her nose and tape on her face. Good points, sure, but considering the alternative, I just don't know.

In so many parts of life, I'm decisive. When it comes to work, I can make important decisions in record time. I guess I'm just finding that decisions about my child are way different. Not that this should be all that surprising, but still. I just feel like I'm on my own, and that sucks. Plain and simple. I keep praying about it, and I kind of think God is just rolling his eyes, saying, "I'm giving you every possible sign I can!" She doesn't eat enough. She won't drink hardly anything, and she doesn't seem to care. I've made every excuse. She always seems to be just on the brink of some great improvement. We start with a new feeding therapist next week, the guru of our area, so I've been holding out for that. But truth is that even improvement won't be enough at this point. She's got so far to go. Maybe she won't need it for long, but she does need it.

So I guess it's just me... I'm the hold up. I think it's time to give up the filibuster and get on with it. Suppose I should call Dr. R and see what's next.

Any given day

This is an example of a recent day, but it represents most. In case you think I am just spending too much time basking in the sun while floating in the pool. (Ahhhh, those were the days...)

6:25 am

Wake husband. Wish I could sleep more. Listen to Braska chatter in her room, as she's been awake for a few minutes already.

6:30 am

Get Braska up. Change diaper. Enjoy morning smiles and giggles. Decide if she's getting dressed or staying in PJs....usually go with the PJs.

6:35 am

Wake husband again. Let the dog out. Measure out 5 oz and start Braska's milk warming. Turn on computer in office. Let the dog in.

6:38 am

Wake husband again. Attempt to try to move him the two steps from his side of the bed to the bathroom.

6:40 am

Return to the kitchen to prepare Braska's milk. Add medicine and vitamin to it. Finally hear the sound of the shower at the other end of the house. Gather syringe, tubing, milk, and baby.

6:42 - 6:50 am

Sit down in recliner with gathered items. Deposit 5 oz of milk into baby via the tube. Thank God she can handle it without waiting on the long pump system. (Manual is so way faster.)

6:50 am

Put used bottle, syringe, tubing, etc back in kitchen. Remind husband in shower that he needs to be at work in 10 minutes. (Lucky we live so darn close.) He always swears he "just got in."

6:55 am

Clean up from milk prep and wash bottle, syring, etc. Collect items for pumping. (Breast pump...9 months and counting). Kiss husband goodbye as he walks out the door. Put baby in some type of restraining toy (bouncy, walker, swing, etc.) Pour bowl of cereal for me.

7:00 - 7:15 am

Pump. Might watch a little TV to pass the time. Eat my cereal.

7:15 am

Wash pump stuff. Store breastmilk. Make Braska's cereal w/fruit. Gather bib, spoon, sippy cup, washcloth, and food.

7:25 - 8:00 am

Put baby in high chair. Attempt to feed baby as she eats extremely slowly. Intermittently attempt to give sippy cup. Give plenty of breaks per recommendations of the feeding therapist.

8:00 am

Clean baby and high chair. Put away

Mommy report: Biopsy results and a GREAT post

I got a call from Dr. R (the GI) last night, and he said the rectal biopsy was negative, showed her nerve cells are all as they should be, so no Hirschsprung's here! Good news for us! I knew it wouldn't be, as she just didn't fit the symptom list consistently, but it's good to know for sure. He said that since she is improving, although slowly, with her feeding, we'll give her a few more weeks and reevaluate then regarding the gastrostomy (G-tube) procedure. I still hope we can avoid it. Her lab work looked ok, just a few things that were only the itsiest bit off, folic acid and B12, so were going to follow up with Dr. Y, her pediatrician to keep watch on that.

Also, I want to encourage you to take a few minutes and read this post from Michelle at Big Blueberry Eyes. I know many of you read her blog regularly, but she does an exceptional job at responding to some questions about raising a child with DS, and I think it is SO well stated that I encouraged her to see about publishing. If you have now or ever do have a friend who struggles with a prenatal diagnosis of DS, or even finds out at birth like we did, please share this with them. I think it could save some beautiful little lives. Plus, it is good for us parents, too. Fantastic, Michelle!

Mommy report: Good GI appointment

We met Dr. R, the pediatric gastroenterologist, today for consulation regarding the G-tube. My issues with it are really just trying to determine how to decide when it's time to look that direction. He was very informative about what it entails and it's risks and benefits. But the good news is that he said, although she would be a candidate, she is not at the point where she NEEDS to go that route. That's good, as far as I'm concerned. Since she is not having any necrosis concerns in the nose or throat, and since she doesn't seem to eat or nurse any differently when the tube is in or out, we are not at the point where we need to get the NG out for good right away.

She has eaten (breastfed) much better the last few days, so that is encouraging. She was going to spend this upcoming week with Grammy Jan so I could get some much-procrastinated work done, but since she's doing better and being more consistent, I'm not going to give up on her yet. Dr. R agreed that we should continue to work with her on this and other oral therapy helps and touch base with him in a couple weeks. He did order some blood work, and we had it drawn after the appointment.

On a separate topic, but still GI related, he is concerned about her constipation history along with the DS diagnosis, so he recommended that we do a biopsy of her rectal tissue (ewww and ouch!), and we've scheduled this for Monday since we're already down here. We've made arrangements to stay the extra day (Thanks tech group for being so darn flexible!!) so we'll be able to get that taken care of Monday morning. He's looking for Hirschsprung's disease, or hopefully ruling it out, but I hope it's not too traumatic. They don't sedate for it, but it's supposed to be very minimally uncomfortable. I have to say that after researching this quite a bit, I really don't think she has HD, but since the procedure to verify that is minimally invasive and quick, we'll go ahead with it.

Thanks for all prayers and well wishes. I am praying hard that she continues to feed well and even better all the time. I'm optimistic that she can overcome this feeding stuff without resorting to the G-tube, but I'm aware that it might be necessary at some point. For now, we'll keep working on the progress we've started.

And now, it's feeding time again.

Think back. Move forward. It's time.

Today I was catching up on my DVR recordings...I set it for lots of stuff, but don't have time to watch so much of it. Something most people close to me know--I'm kind of a "church nerd," you might say. I like good sermons. I love going to hear great speakers challenge people. And I like listening to Christian talk radio...it's one of my favorite things about going back to St. Louis for visits and appointments...I always get to hear something that I really needed at that exact moment. I like listening to speakers who tell me things that challenge me and help me grow.

One of the guys that I listen to alot is Dr. David Jeremiah. I don't agree with every little thing he says or philosophy that he holds, but he often deals with things in a manner that makes very clear which areas of my life that I need to evaluate and improve. His style of presentation is very straightforward, which is what I like. Some people like a happy comfortable sermon or topic, but I prefer the ones that step on my toes and make me take a hard look at myself. (I have not always liked this style, and it's still a little interesting to me that I do now. I think it's because I've seen how the heartbreaking can bring about the beautiful.)

So I've got my DVR set to tape Turning Point with Dr. Jeremiah each Sunday morning, but I usually don't get to see them until they are many weeks old. The last couple of days, though, I've made a point to try to catch up on them while I'm pumping or feeding the poonchin. There have been several great messages in the ones I've gone through: One about the example that Joseph's life shows us in how difficult circumstances are used by God to prepare for ministry to others and victorious outcomes. It was a good one. I needed that one.

This message I've just finished was called "Think back...Move forward... It's time." It's from the 9/11 memorial, where Dr. Jeremiah recently visited. But I agree with him that it's a fitting thought for everyone. Thinking back and remembering is important, even if painful, in that it reminds us of how far we've come and what we've endured. Yet we cannot live there, in the past, regardless of what it looks like. We must move forward. And now is the time to do it.

Thinking back is not always on bad times. Sometimes it is in dwelling on a very good period that makes us discontented with our current circumstance. It is not only the painful past that must be left in the past, but the glory days, although appreciated and enjoyed, must also remain where they live. Many of the most difficult moments in my life stemmed from one's inability to let go of a fantasy from many years past and deal with the reality of today. Most of us loved being 19 and free, able to do whatever we want. But to be angry about the loss of that perceived freedom to the detriment of the blessings that are being allowed to pass by unnoticed in the present...this is a tragedy of the saddest kind. Move forward, it's time.

For me, this is paramount to my survival and my sanity. I could dwell on the disappointment of my daughter's Down syndrome diagnosis and all that will mean, or I can enjoy her for who she is...exactly who she was meant to be...and be blessed by her joy, her charming smile, her adorable giggles, and the irresistable cuddles. There will be trials, but we keep moving forward.

I have endured more heartache than I would have ever believed was possible. I have a horrible habit of spending too much time thinking back, hurting through the painful moments all over again. Why did it happen? How could I have stopped it? Why didn't I see it every time? What did I not see that I don't want to miss the next time? What if there is a "next time"? How can I possibly recover? Will I ever trust again? Will I ever be able to function normally? Dr. Jeremiah had two points that spoke clearly to me...It's right to think back, but not right to GO back. It's right to look back, but not right to linger. Looking back, I can praise God for bringing me this far, but I must not linger there. I must move forward. Life may never be the same, and it may even be worse before it's better, but I know that HE will see me through. He simply asks me to move forward, trusting Him. The rest will fall into place according to His plan, the BEST plan.

Pudding is yummy

We went to church at Grandpa J's church today. There was a whole bunch of music time, and I like music, so that was good. I sat with Grandma C today. She and Uncle Ethon had to work on my feeding stuff at church because it was being difficult for them.


After church, Mommy and me went with Grandma and Grandpa to Miss Cindy's house. And it is a really, really nice house. She had everyone from church over to swim and eat lots of yummy food, at least Mommy and Grandma C said it was yummy. Grandma C decided to try to give me some bananas, but they were different than my normal ones. This was called pudding, and I liked it alot. Grandma gave me enough to make my tummy full, and it was so yummy!


Everyone played games for a while in the evening, so I sat with Mommy so I could watch.


Then I got all sleepy and took a nap on Pop.

We finally left to go home about 9:30 tonight, so it's going to be very late when we get home!