Tuesday, January 5, 2010

Long Overdue Update

Hey, guys! Sorry it's been several days since my latest update. There's a lot to talk about! I'll apologize in advance since I'm guessing this'll be a lengthy post!

We had a great New Year. Wasn't sure if I'd mentioned that last week or not. It was just the four of us, although the kiddos were obviously in bed before midnight. We welcome 2010 with open arms! The best part of 2009 was my sweet little Chase's arrival (and heart defect butt-kicking), but overall the year held a lot of struggles and problems for our extended family. I can't wait to see what 2010 has in store for us! And as a side note, I once heard someone refer to this year as "oh-ten" (like '09). I think that's funny.

We had a pretty quiet weekend. Hubs and I have been working through some of our communication issues that (go figure!) seem to appear when a family spends 3+ months stuck in a bubble together 24/7. We've also been trying to make the effort to get LO out of the house more often. She's really been acting out a bit since we got home 5 weeks ago and I don't think it's all just because she's 2-1/2. I know being in the house with us all the time has been difficult for her, and we can't take her outside since it's so stinkin' cold! She's lucky if she gets to go on a Target or grocery store run these days. Poor girl!

So last night, hubs, Chase and I left for Charleston while LO stayed home with my mom. Let me tell you that girl was beyond stoked to finally have someone other than Mommy and Daddy to spend time with! It was so great to see her so happy to spend time with her Mona. As a bonus, while we were finishing up packing, my mom happened to ask me about the white film stuff on Chase's tongue and how long it'd been there. I said (since I am in fact the world's worst mom EVER) that I was pretty sure it'd been there for awhile. I had assumed it was just leftover milk residue that remained on his tongue after his feedings. Unfortunately, she looked closer and confirmed my precious boy had thrush! It's a yeast infection in his mouth!!! Oh my goodness, I can't believe I had NO idea. I felt awful! I immediately called his pediatrician, told the nurse and she called in a prescription for us to pick up on our way out of town. I still feel awful. It should clear up in 7-10 days, but still. Ugh.

So we hit the road and made it safely to our hotel, checked in and had a pretty good night. This morning we packed up and headed to MUSC. It was so surreal to be back in that part of town, back in that parking garage, back in that hospital. We headed over for his ENT follow-up first. They did a flex scope bronchoscopy and we all got to see his throat on TV! It was pretty cool (although Chase didn't really care for it)! The doctor was VERY pleased with what she saw. The spot where she had removed some granulation during his bronchoscopy procedures while were at MUSC looked fantastic. The best part was that we got to see his vocal cords moving (since he was totally crying through the whole thing!) and the left one was moving!!! We were told the cord paralysis goes away on it's own in about 40% of patients, and apparently Chase is continuing with his incredible awesomeness! Both cords were moving, but there was still a very small gap between them when they closed. It wasn't anything the doctor was too worried about, and she was fine with following up on him again when we return to MUSC in late March for his heart cath. This was such great news and we are so very thankful!!! Another bonus of his great progress is that we should be albe to discontinue his Reglan in 2 weeks, and probably his Zantac after we see her again in March! So he'll just be left with Lasix in the morning and aspirin at night! Again, thank you Lord for Your incredible work in Chase's life!

We left the ENT appointment and stopped over in the PCICU to say hello and visit for a few minutes with the great staff that took such great care of Chase. Then we went into the PCICU waiting room to feed and change Chase, where I had the wonderful opportunity to meet Anna Grace's mom. Anna Grace had her Norwood surgery yesterday (Monday) and had her chest closed today (Tuesday)! That's simply amazing! I also saw Maia's mom since they were out for a stroll. Maia's still on 7C waiting to go home after her Glenn surgery several weeks ago. Please keep her in your prayers!

After visiting with these sweet heart moms for a bit, hubs, Chase and I headed to Speech Therapy for his 1:30 PM swallow study. Imagine our surprise when we were told our appointment had been canceled! WHAAAA???! Apparently they told us our appointment was actually at 10:00 AM, not 1:30 PM. Hubs was all over it. He told them he called Monday, spoke with (I forgot her name but he knew it) at 3:36 PM and confirmed his 1:30 PM appointment for Tuesday afternoon. Long story short, they tried to shoo us into a general pediatric waiting room (with a single-ventricle baby?? No thank you!!), then told us they'd "fit us in" but it'd probably be about 30 minutes. Keep in mind Chase had to be HUNGRY for his swallow study so he hadn't eaten in almost 3 hours. There was NO WAY he was gonna hold out for another 30+ minutes. Blurg!! Hubs handled the whole situation awesomely while I kept tabs on our little guy and tried to keep the freak-out to a minimum. The staff was nice enough to let us wait in an empty exam room, and luckily it was only about 10-15 minutes before they were ready for us. We got him all situated and the radiologist was ready to start the swallow study. We were using a thin liquid (breastmilk consistency) with a regular flow nipple. The boy went to town on that sucker! He took in 20 of 30 mL's of the barium mixture and the radiologist said he was doing great!! In fact, they didn't even want to try the liquid with a slow-flow nipple since he handled the regular one so well! Woot!!! I was BEYOND excited!!! This meant I could finally start nursing my precious baby boy after 10 weeks of pumping and bottle feeding! Praise the Lord!!! I already nursed him during one of our stops on our way home from Charleston, and again before he went to bed! It was so awesome to finally get to do this after waiting so long, and -- no surprise -- he did fantastic!!!

So basically I'm able to start nursing him every other feed, and in between we'll still bottle feed with thickened milk, but we'll slowly decrease the amount of thickener we use until he's at regular consistency all the time. This process should only take a few days, after which I'll be able to nurse exclusively! I'm so excited, but also a bit nervous because I just don't have the supply to keep up with my little fattie. He's taking about 6 ounces every 3-4 hours, and when I've pumped, I barely get 3. I'm really hopeful that he'll help increase my supply now that he'll be able to nurse and I won't have to use the pump all of the time. If anyone has any suggestions for increasing milk production, I'd love to hear it! I spent the past 4 days pumping every TWO hours, but only saw a minimal increase in my daily totals. I know I can't take any prescription meds to help with this, but I might try some herbs like Fenugreek to see if it does any good.

On another note, you may recall that I eliminated milk protein products from my diet starting last Wednesday. Well, it's supposed to take 10-14 days for the milk protein to leave my system, but we've found no traces of blood in Chase's diapers for the past 2 days! Woot!!! I have no idea if this truly means he has a milk allergy or if something else has improved things, but I'm so grateful! I'll keep up the milk diet in case Chase does have a milk allergy, but we'll find out for sure in a few weeks when we retest his stool for blood.

Another random note... When we got home tonight, I gave Chase a bath (which he loves, by the way). Before I put him in the tub, I checked his weight and would you believe he's up to 11 pounds?! He's 10 weeks old and has put on about 2-1/2 pounds since birth! That's almost 30% of his birth weight! What a little eater! I'm so happy he's doing so well! And I'm so grateful for the prayers and support of our family and friends and blog readers! I know I don't say it here enough, but THANK YOU and keep the prayers coming!!

Whew! So that's it for my long overdue update. But I do want to say a big "PRAISE THE LORD!" for little baby Anna Grace's progress following her Norwood procedure yesterday. God has His hands on this precious girl and has big plans for her life! Please keep her in your prayers as she continues her road to recovery. It's no surprise, but this sweet family is from the Upstate!

Also, I want to ask for your prayers for sweet little Josiah. As you may know, his family FINALLY moved back home to the Upstate after his 7 months at MUSC. After a few short days at home with his family, he ended up at a local hospital for a few days. They were told today the idea of taking him back to the PCICU at MUSC was put on the table. Please, please, please pray for this family! They are so incredibly strong and are relying on their faith in God, but I just know they can only take so much! Their journey has been so hard and they truly need our prayers as they make some big decisions in the next few days.

I just realized I didn't include any pics with this l-o-n-g post! I'll make it up to you later this week... :)