Wednesday weigh-in (8/27)

Okay, so it's Thursday. Yesterday was SUCH a busy day. Seems this week has been jam-packed full of exciting things, such as doctor's visits. :)

Yesterday the boys and I left the house at 8 a.m. and didn't return until about 2 p.m. That may seem like nothing for most people, but for me, being out with them for that long was...well...long.

First we went to my mom's school. (She's an elementary school principal at the BEST school in the world.) It was Fall Picture Day and Andrew is an honorary student. LOL. He had to get his picture taken. So we hung out a little (and ate Alphabits cereal) before the picture and then a little bit after the picture.

Then we drove to our church. Wednesday morning Bible studies started back up yesterday. Last year, I participated in the large-group study, MEMs (Moms Encouraging Moms). But this year I will be doing a smaller-group study that is just for moms of special needs children. It is really great to have a place to go with moms who "get it." No offense to any moms who don't have special needs children; it's not your fault that you don't get it. Heck, I wish I didn't get it. But I do because I do. Follow me? Anyway, I kept Benjamin with me because I can't put him in the regular nursery with the other kids b/c of his heart condition. We can't risk his getting sick. Also, it's not just his heart; Down syndrome babies have very small nasal and ear passages, meaning it is very easy for them to get upper respiratory illnesses such as pneumonia or bronchitus. So we were told no nursery for now. On Sundays, there are workers in the King's Table Nursery (the special needs nursery), and he is the only baby, so he's the only one in the room right now. (There is another KT nursery for older kids.) It is SO nice to have that available on Sundays so I can worship and go to Sunday School. But on Wednesdays, the resources simply aren't there to have a worker in there. Which is totally fine. But it was a little stressful to have him with me during the study b/c I was paranoid b/c he was a little loud. But I'm sure the other moms were probably fine with it. It'll get easier I'm sure.

We're doing a Beth Moore study, "Believing God." The premise is that many of us believe in God, but do we believe God? Do we take Him at His word? Do we believe all that He says and all that He promises? The five tenants of this study are very powerful:

1. God is who He says He is.
2. God can do what He says He can do.
3. I am who God says I am.
4. I can do all things through Christ.
5. God's Word is alive and active in me.

"I'm believing God."

Might seem a little cheesy, but it's good stuff. I actually already did this study (well, the majority of it--for some reason I didn't finish the last three weeks or so) in the fall of 2004. Man, was my life different then! My only association with suffering and really depending on God revolved around boyfriends and relationships, and those were years in the past! I am looking forward to redoing the study with the "new me." :)

Andrew had a blast in his room at church while I was in Bible Study. Last year during MEMs, he went to the toddler room, but now he's in the "Twos" room. He did a craft and colored and they had a lesson. It's SO neat! I was putting him down for his nap yesterday and randomly, out of nowhere he blurted out, "ADAM AND EVE!" I almost busted out laughing! I said, "Did you learn about Adam and Eve at church today?" He said, "Yes, and other Bible stories." I said, "Great! Let's talk about them when you wake up; it's time to sleep!"

After church we drove to the hospital for breastfeeding support group (BFSG), which we do every Wednesday, to weigh and feed Benjamin. The timing is a little off, but we make it work. We got there early and Andrew ate his lunch (cereal bars, Goldfish, and animal crackers) in the stroller while I fed Benjamin.

This week, he weighed 12 pounds, 3.0 ounces. Last week he was 11.15.6. So he gained another 3.4 ounces! He ate well and gained 4.3 ounces in the feeding. Yay!!

OH MY GOODNESS!! I just realized I haven't updated about the eye doctor. WOW what a day. First of all, thank God (literally) for my sister-in-law Edie. I seriously would have died if she hadn't agreed (just the day before) to come watch Andrew at home while I took Benjamin to the eye doctor. We were there for THREE HOURS. UGH! Long story short...they just had a bunch of people there and it took forever to do all the different steps. (Let's see, it was...wait, see the nurse, wait, see the attending doctor, wait, see the real doctor, wait, get eyes dilated, wait, get eyes checked, Oh, they're not dilated enough, wait, get more drops, wait, nurse, wait, wait, wait, see the attending doctor again, wait, see the real doctor again. The bad thing is that most of the times I typed the word "wait" above, we had to go back into the waiting room. So I hauling a backpack (diaper bag/purse), a car seat, and Benjamin, who didn't want to sit in the carseat. Sigh. It was just a really long and frustrating morning. (Guess that wasn't really a 'short' long story, was it? Sorry.)

The eye doctor (who was very nice, by the way) said that Benjamin does have a fair amount of farsightedness (+4.5? +0.45? The numbers didn't mean anything to me so I don't remember them) BUT many babies are farsighted this young b/c their lenses are short. We'll recheck him at a year and see how he is doing. The doctor said that he has an excellent chance of growing out of it but that if he doesn't grow out of it and the numbers stay the same, that he'll definitely need glasses. The doctor was very impressed, however, at Benjamin's eyes. He said that even for just a normal (non-Down syndrome) baby at four months, Benjamin has very good eye control and that the nerves looked very good. YAY!!!!

Let me see if I can dig up some pictures. I haven't posted any in awhile. Been a little occupied. :)

Here is Andrew at the mall playarea. We met some friends. It's funny how even at 2 1/2 they don't really play with each other; they play around each other.







Daddy and Andrew Time in the back (side) yard. Nothing like being swung back and forth in the air!





Going up the stairs. :)



Benjamin's four-month picture



Whatcha talkin' 'bout, Willis?



Nancy only thought she was getting a nap on the back of the couch...



ATTACK!!!!! (It was only a kiss, but she doesn't know that...)

This is the week for doctor visits!

Wow. I have a lot of updating to do! Buckle your seatbelt. :)

Today we left the house before 9 a.m. to go to our pediatrician's office for Benjamin's four-month well visit. Thankfully, he'd already had his vaccinations! It was more of a handful to take Andrew with me because once we were in the exam room, he just wanted to tear all the toys and books off the shelves and make a big pile in the floor. (He even saw a couple of interesting looking trucks in *another* exam room when we went down the hall to weigh Benjamin, and since the room was empty, I went in there and got said trucks. Hey, gotta pick your battles...) I finally got Andrew interested in a vehicle puzzle and his snack when the doctor came in. (Incidentally, right before Dr. Stephanie came in, I handed Andrew his water and he said, "Thank you, Mommy!" And she evidently heard him in the hall because when she came in she said, "Oh, I like to hear those 'thank yous'!" And *then* Andrew was looking at his puzzle while I was talking to her, and he said, "C-A-R, that's a car!" Dr. Stephanie chuckled and said, "Andrew, didn't anyone tell you you're not supposed to be able to do that yet? You're going to be bored in kindergarten!" I love that boy!)

Okay...on to Benjamin. At the pediatrician this morning, he weighed 12lbs, 4 oz!! He is in the 50th percentile for Down syndrome babies. His length was 24 inches, which is the 75th percentile for DS babies! (At the cardiologist's office this afternoon, he was 12lbs, 2oz and almost 25 inches. Ummm...yeah. Matthew and I both watched as she measured him hurriedly and frowned b/c we knew it was wrong. Granted, he may be a little bit in between the measurements, but he did not grow almost an inch in five hours!)

Dr. Stephanie said that his cradle cap is looking great but his "pre-eczema" is still flaring up. So we'll just keep working on it. There's only so much you can do to help it! She said his ears looked clear and was impressed that he is rolling over onto his stomach. She's always amazed at his muscle tone. It helps to hear this encouragment because it is SO easy to be disheartenened when I think of how much worse his muscle tone is than a normal baby's would be at four months old. I was so sad yesterday when I put him in his exersaucer to see if he would do okay and he just fell forward and could COMPLETELY not sit in it at ALL. He was like a two-week old in that thing. Sigh. I know. I know. But still.....

She mentioned that she thought his heart murmur sounded a little bit worse than she'd heard it before. Which didn't bother me, but just reassured me that he needs surgery!

Then....we discussed his penis. LOL Poor thing has issues. Sorry for those of you (like my dear grandparents) who might be uncomfortable with this. But it is a medical thing and another prayer request. :) As we were caring for Benjamin's circumcision after he was born, we noticed what looked like a nick from his circumcision right underneath his urinary opening. He still peed out of the original opening, and this other hole just looked like a slit that would heal. But now he is actually peeing out of it. (We just noticed it a couple of weeks ago.) Dr. Stephanie said it could not have happened during the circumcision b/c there is a urinary tract coming out of it.

It is called a hypospadias. It is actually a birth defect. Dictionary.com defines it as: "an abnormal condition in males in which the urethra opens on the under surface of the penis." (May I suggest that you NOT look it up on wikipedia? There is a rather graphic picture of an adult with this condition! Look at your own risk...) Anyway, basically, Benjamin will need yet ANOTHER surgery. Sigh. The doctor said they usually like to coordinate surgeries so they can just get it all done at once, but that the heart surgery will be enough to deal with. There is a pediatric urologist who is at Vanderbilt but comes to Chattanooga every-other Friday. We will be meeting with him on September 26, the Friday before we go up to Vanderbilt. Dr. Stephanie thinks the surgery will most likely be later this year, like maybe around Christmastime. Basically they have to "pick" an opening and repair it so the urine comes out the right way. Heck, after open-heart surgery, this will be a breeze!

So then we went to my parents' house where my father (who has Mondays off) watched Andrew (and put him down for a THREE HOUR NAP--why does that never happen at my house???) while Matthew and I took Benjamin to see Dr. Herold, the best pediatric cardiologist ever. :) I told him what Dr. Stephanie had said about Benjamin's heart murmur, but he listened and said, "I am not impressed with this murmur." LOL Matthew said, "We'll have him work on it." He thinks that Benjamin's heart is basically the same as it has been. There's a big hole but his body seems to be doing okay with it for now. There is not significant failure (yet). He upped his meds a little based on his weight.

Tomorrow I have to take Benjamin to the eye doctor. It's seriously laughable how much time I spend in doctor's offices now!! Thankfully, my sister-in-law is able to come watch Andrew in the morning so I don't have to drag him to another office. (THANK YOU, EDIE!!! Andrew is excited about showing you his library books.) There is nothing wrong (hopefully) with Benjamin's eyes. But vision problems are common in Down syndrome babies, so we are supposed to get his eyes checked at about six months. But we are having to do it sooner b/c of his heart surgery. The original appt was scheduled for October 1. But we'll be in Nashville then, so when I called today to reschedule, she said, "How about tomorrow?" Ummm...yeah! He will have his thyroid and hearing (two other common problem areas) checked with Dr. Stephanie at his six-month checkup.

Oh man this took a long time! But I wanted to update all of you. Oh, the cardiologist said it would probably be okay if we went to our Labor Day weekend, but traveling all the way to VA for a wedding would not be the best choice. We would just hate for him to get sick in any way and have to postpone the surgery. So sorry, Carol and Justin!! I'm sure the wedding will be lovely.

Gonna go feed the sweet little boy and then I'm off to bed!

Wednesday weigh-in (8/20)

YAY! Benjamin is *almost* to 12 pounds!! Today he weighed in at 11.15.6 pounds. Only four-tenths of an ounce away! He gained 4.3 ounces from last Wednesday.

We go next Monday for his four-month checkup with his pediatrician in the morning and then a cardiology appointment in the afternoon. Good thing we like his doctors; we sure see enough of them!

Psalm 138

I came across this psalm today as I was reading my Bible. Verses three and seven especially spoke to me.

PSALM 138
Psa 138:1
A Psalm of David.
I WILL praise You with my whole heart;
Before the gods I will sing praises to You.
Psa 138:2
I will worship toward Your holy temple,
And praise Your name
For Your lovingkindness and Your truth;
For You have magnified Your word above all Your name.
Psa 138:3
In the day when I cried out, You answered me,
And made me bold with strength in my soul.
Psa 138:4
All the kings of the earth shall praise You, O LORD,
When they hear the words of Your mouth.
Psa 138:5
Yes, they shall sing of the ways of the LORD,
For great is the glory of the LORD.
Psa 138:6
Though the LORD is on high,
Yet He regards the lowly;
But the proud He knows from afar.
Psa 138:7
Though I walk in the midst of trouble, You will revive me;
You will stretch out Your hand
Against the wrath of my enemies,
And Your right hand will save me.
Psa 138:8
The LORD will perfect that which concerns me;
Your mercy, O LORD, endures forever;
Do not forsake the works of Your hands.

Wow!! I love it that God can make me "bold in my soul." I fear so much. I wonder about the future so much. When I think of all that our life now entails b/c of Benjamin and his Down syndrome (heart surgery aside even), it can seem bleak and uncertain. But look at verse eight. He will perfect that which concerns me! Another version reads, "the Lord will acccomplish what concerns me." I love it. God's will is going to be perfected in me; it will be accomplished. I feel honored that He would use little old me. Me, who is inherently lazy. I almost didn't read my Bible this afternooon. I knew I only had a few minutes before I heard that oh-so-familiar cry (from either boy or usually both) coming down the stairs. It would have pleased my flesh much more to just flip on the TV or to take a quick nap. But instead I listened to the tugging of the Holy Spirit and opened my Bible. I was searching for a familiar verse in Psalm 139 but "just happened" to come across this passage instead. Me, who feels sorry for myself. Me, who watches far too much television and always puts off reading her Bible until a "later" that rarely comes. Me, who feels like sometimes I am faking it in front of others. Yes, He will perfect that which concerns me. Because no matter how sinful I am, I have been redeemed. I am His child. And He loves me. Praise God.

We have a date!!!!!

I was so thrilled to see the word "Vanderbilt" on my caller ID today!!!

Benjamin's open-heart surgery has been scheduled for Thursday, October 2. (Which, incidentally is my dad's birthday.) We have to be at the hospital on Wednesday, October 1, at 9:00 a.m. We'll meet the surgeon, take a tour, etc., and they'll run some tests on Benjamin. He will not be admitted until the morning of the 2nd. We are now on the waiting list at the Ronald McDonald House for Tuesday, September 30, since we have to be there so early on Wednesday. Benjamin will stay with us the first two nights. If there is room for us at the RMH, we will stay there until Benjamin is discharged. (One of us can still sleep in his room with him once he's put on the PICU floor.) Carolyn, the lady who called, said that unless there are complications (please pray that there aren't any!!), we should only be there three or four DAYS! Wow.

We have an appointment with our cardiologist next Monday, and we plan to ask him some more questions (like how much can we travel in between now and then, as we have Labor Day reservations and a family wedding in mid-September in VA) and get some more specific details.

Thank you for praying!!!! Here are some cute pictures from this past weekend.

Wednesday weigh-in (8/13)

YAY! Benjamin gained 3.4 ounces this week. Even though this is below average, it's very good considering the previous two weeks he pretty much didn't gain anything. And when he ate this week at the support group, he gained four ounces. Great job, Benjamin!!

His head is looking a million times better!! The eczema on his torso is looking a little better. I need to bathe him (and lotion him) more often.... I did buy some new detergent for his clothes (Tide Free) so hopefully that will help, too.

Benjamin had his monthly PT (physical therapy) this morning. He did *really* well!! She was very impressed with his muscle tone and said he is right on target. That's my boy!!

I am so tired these days! I know, it's my fault b/c I stay up ridiculously late (12 or 1) watching the Olympics and then pay for it later. I can't help it!! It's only on every two years. I love it.

Time to feed Benjamin and entertain Andrew. Still no word from Vanderbilt. If we haven't heard from them by Monday, we are supposed to call our cardiologist to see if he can look into it.

Have a great day, everyone. It's almost the weekend!!!!!!!!!

Just Like Daddy

Photo Friday on a Saturday

Here is our week in pictures. Well, okay, truthfully, our week in pictures would really be a picture of Benjamin's nasty cradle cap and the vacuum cleaner since the floors never stay clean. But we managed to have a little fun, too. Hope you enjoy. :)

Not really sure what is up with this facial expression; I just wanted to show off his cute shirt from my friend Stephanie. It says, "I'm bigger than my little brother." :)





Nothing says 'fun' like goofing off in the Cracker Barrel giftshop with merchandise we don't plan to buy.




Case in point. Here are two of my favorite pictures from the mid- to late-90s on the way to the OBX with the cousins. (Side note. If you happen to see that thinner version of me somewhere, tell her to come back; I MISS HER!)


This one (L to R) is me, Philip, Casandra, and Marianne (the siblings I never had).





This one (L to R) is Justin, Marianne, me, Philip, and Casandra. (One of the siblings I do have plus those others.)





Okay. Back to the present. Here are two funny shots of Andrew on the way home from Cracker Barrel. He's a mess. :)






Two brothers, just hanging out in the living room. Andrew actually addressed Benjamin right before this picture. He went right up to him and said, "Benjamin, did you and Mommy go to church?"




Just in case you were worried...emergency personnel is ready to assist you at any time.



We hope to hear from the surgeons at Vanderbilt sometime this week about Benjamin's open-heart surgery date. Keep us in your prayers!!

Back from the doctor

Benjamin has what his pediatrician called "severe cradle cap." Yucky. Prior to this, I wasn't really doing anything to it b/c the doctor had told me to just leave it alone. So after baths (which, granted, are only about three times a week) I was putting Aquaphor on it. But now it's infected and (gross) it even has a nasty smell to it sometimes. (Ah, the joys of parenting...)

So now I am supposed to use Selsun Blue (dandruff shampoo) 2-3 times a week. And prescription Bactroban ointment 2-3 times a day for 5-7 days. And 1% hydrocortisone cream twice a day until it isn't red anymore. Yuck. Ick.

OH! And what I thought was just heat rash on his torso is actually eczema. Sigh.... At least I have tons of Aquaphor for that. I hope it helps! (This means I have to bathe him more often. Sigh again. Who has time?)

She said his ears looked clear from what she could see. There was wax buildup in there, and Down syndrome babes have small ear and nose passages, so it was hard for her to see in there! She agrees that his lack of weight gain and lack of eating a lot per feeding is most likely just his heart. It's just too hard now. All the more reason it's good the ball is rolling on scheduling the surgery.

We agreed to go ahead and give him his four-month vaccinations so they will be in his system before his surgery. It has been eight weeks since his last shots, and it has to have been at least six weeks. The cardiologist didn't want him to have any vaccines any sooner than a month before surgery b/c they'll take his blood out during the surgery (CRAZY!) and all the antibodies from the shots will be taken out if he gets shots any sooner than a month before the surgery. So since we know surgery will most likely be NO sooner than a month (most likely six to eight weeks away), we went ahead and gave them to him. She thought it was better safe than sorry that he has the proper vaccinations before he stays in the hospital for his surgery, to protect him.

Now it's late (6 p.m.) and Matthew is still at work (coming home soon I hope). I need to scrounge up some dinner for Andrew. I hope to ONE day be able to cook some semblance of dinner. :)

Hot dogs

It has already been a crazy day in my life. Benjamin was up early, covered in a strange-colored spit-up. Then he only napped for 30 minutes, even though his morning nap yesterday was two hours and fifteen minutes. He woke up right in the middle of my workout, so I am all stinky and sweaty. I am trying to make the bed, put away laundry, unload the dishwasher, and figure out a time when I can shower so I can take Benjamin to the doctor after lunch. (Thankfully I have a great babysitter for Andrew this morning...his LeapFrog Letter Factory DVD.)

Nothing too horrible, mind you, but just very busy. I feel like my mind always has to think one step ahead or I'll fall behind. So in the midst of the insanity, I ripped off the desk calender with quotes from The Office.

Sigh...I hear ya, Kevin. I hear ya.

Wednesday weigh-in (8/6)

Well, another bad week as far as weight goes. He actually lost a *little* bit of weight (0.2 of an ounce) and was at 11 lbs, 7.9 oz. So he's pretty much stuck right there at 11 1/2 pounds. But then when I fed him, he was fussy and didn't really want to eat. He only got two ounces, which is not enough for him per feeding.

Shari, my lactation consultant, said that it could be the heat (it's beastly today) or his heart (having to work so hard), but I'm worried a little b/c he's been coughing and sneezing a little bit lately. And then I showed her Benjamin's head. He has this nasty funk on his head that I assumed was just cradle cap but it now stinks. Gross. The last time I took him to the doctor, she said it was just cradle cap (regular newborn stuff) and just to leave it alone. But now it's crusty and smelly.

So we are going to the doctor tomorrow afternoon! I am going to show her his head and ask her about his weight gain/fussiness during feedings and have her check his ears for any signs of an infection. He seems to really only fuss when he eats sometimes, and if he has an infection, then it would hurt to eat.

Sigh. I'm tired. And it's hot.

Photo Friday

Well, I *think* we are all well now. My throat feels better today, thankfully. Both boys (well, all three) are doing fine, too.

Here are Andrew and Benjamin today.