I spoke with Dr. Baker this morning. He's the one that will be performing Chase's cath procedure on Thursday. I emailed him a list of questions yesterday and he thought it would be easier to discuss over the phone. So, I learned a bit more info about the procedure and thought I'd share it with you.
First of all, he said Chase will be under general anesthesia. He says that's what he does for almost all of his cath procedures. He did say that the anesthesiologist would be Dr. Walton (the same one who was on during the bronchoscopy nightmare) or a member of his team. They would all most definitely discuss what happened and take the necessary precautions to prevent it from happening again.
Dr. Baker is about 90% sure he will balloon Chase's coarctation during the cath procedure. This is what will require Chase to stay overnight for observation. There are a lot of risks to this but he says the benefits outweigh the risks. There is a chance the coarctation will narrow again following the procedure (he didn't specify... days? weeks? months?) and will need to be ballooned again. This may need to happen several times over the next several months. Not feelin' great about that! He did say usually within 6 to 12 months the ballooning fixes the narrowing and it is no longer an issue.
His best guess is that, assuming the balloon procedure corrects the coarctation (even if only temporarily), Chase will probably have his next surgery in about a month (the end of March). We won't know anything for sure until after the cath procedure on Thursday.
Please keep all of us in your prayers -- especially Chase as he goes through one of what will be several "ordeals" in his sweet little life. Pray for safe travel and for hubs and I to handle things as best as we can. Pray for the doctors to make the right decisions. Also pray for LO, who will be staying at home with my mom and my wonderful sister while we are at MUSC.
Tuesday, February 23, 2010
Monday, February 22, 2010
Slight Change in Plans
Ugh. It's so frustrating to have a plan in place only to have to make changes to it! I called the cath lab at MUSC this morning to get some answers to some questions hubs and I have about the procedure. I'm glad I called, but I'm very irritated to find out that although the information we received Friday indicated Chase would only have a sedative for the procedure, the schedule apparently says he'll be under general anesthesia. This is NOT at all what I wanted to hear! We had a horrible experience when he was under general anesthesia for a bronchoscopy at MUSC when he was 16 days old that resulted in CPR and chest compressions! I had a certain level of peace knowing he would get a sedative instead of general anesthesia. Now that's changed.
Also, I guess you just have to know what questions to ask and how to ask them. I also found out that IF they need to balloon or stent his coarctation (which I'm about 99% certain they will), he will be required to stay overnight at MUSC Thursday night. This obviously changes our plans significantly! We had expected to return home Thursday evening and now it will be Friday so we'll need to modify LO's childcare plans, figure out if we'll need a hotel room or if we'll be able to stay with Chase in his hospital room, etc.
I'm glad I called.
I have to say the ONE thing hubs and I have been most disappointed with MUSC about is COMMUNICATION. It's the easiest thing to do and yet it never seems to happen when it's most needed!
Also, I guess you just have to know what questions to ask and how to ask them. I also found out that IF they need to balloon or stent his coarctation (which I'm about 99% certain they will), he will be required to stay overnight at MUSC Thursday night. This obviously changes our plans significantly! We had expected to return home Thursday evening and now it will be Friday so we'll need to modify LO's childcare plans, figure out if we'll need a hotel room or if we'll be able to stay with Chase in his hospital room, etc.
I'm glad I called.
I have to say the ONE thing hubs and I have been most disappointed with MUSC about is COMMUNICATION. It's the easiest thing to do and yet it never seems to happen when it's most needed!
Sunday, February 21, 2010
Heart Cath Info
Late last Friday, we received some additional information from MUSC regarding Chase's cath procedure, which as you know as been rescheduled for this Thursday, Feb. 25th. I figured some of you may not know what exactly a heart cath is or why it's done, so I thought I'd share some of the information we received from MUSC.
Please continue to keep us in your prayers, especially Chase. He won't be able to eat after midnight so he'll have to go 10-12 hours (at least!) without eating. And that's assuming we don't get "bumped" to a later appointment time (I hear that unfortunately happens often). Chase is my little Rock Star and I know he'll handle everything amazingly (probably much better than his mommy!).
We know God already knows what lies ahead later this week as well as in the months and years ahead, so I'm doing my best not to stress out or worry. I know whatever they find on Thursday, Chase's medical team at MUSC will make the necessary decisions regarding his next surgery and do whatever is in his best interest. Please pray for the medical team, the doctor performing the cath procedure (Dr. Baker), his staff and everyone who will be working with Chase. We covet the prayers of our family and friends (and blog readers, too!) and realize we wouldn't be able to make it through all of this without those prayers!
Thank you in advance for following our journey, praying for our sweet boy and providing much-needed encouragement along the way.
The purpose of this test is to determine the details and severity of the heart condition your child has, which will help us decide what kind of treatment would be most beneficial. Heart catheterization is done by inserting a long, narrow, hollow tube called a catheter into an artery and a vein, usually in the thigh near the groin and passing the catheter up the blood vessel into the heart. Movement of the catheter up the blood vessels and inside the heart is observed on x-ray. Once the catheter has reached the heart chambers or main blood vessels, pressures are measured and samples of blood are withdrawn through it for oxygen measurement. This is followed by the injection of iodine-containing x-ray dye so that movies may be taken of the heart and vessels. Electrical recording and stimulation of the heart may be performed using different catheters if there is a known or suspected problem with the heart rate or rhythm. In some cases, catheter treatment with balloon dilation of narrow valves, stenting of narrowed blood vessels, closure of abnormal holes or vessels or treatment of electrical abnormalities will be done. If there are any interventions or other tests, it will be performed at that time.So that's a snapshot of what we have to look forward to on Thursday. Thankfully, God has ordained this procedure at this time and has worked out every detail on our behalf. My mom is available to keep LO for us so hubs and I can take Chase to Charleston and focus on him. Praise the Lord!
The detailed and exact diagnosis of the heart condition will make future treatment safer and more effective. When heart catheterizations are done, there is a chance that complications can develop; but the chance of a complication is related to the severity of the heart defect and complexity of the procedure.
A sedative will be given prior to the test and most patients sleep through the test, which will take about three hours. Local anesthesia with a novocaine-like drug is used so that patients experience only minimal discomfort during the procedure.
Please continue to keep us in your prayers, especially Chase. He won't be able to eat after midnight so he'll have to go 10-12 hours (at least!) without eating. And that's assuming we don't get "bumped" to a later appointment time (I hear that unfortunately happens often). Chase is my little Rock Star and I know he'll handle everything amazingly (probably much better than his mommy!).
We know God already knows what lies ahead later this week as well as in the months and years ahead, so I'm doing my best not to stress out or worry. I know whatever they find on Thursday, Chase's medical team at MUSC will make the necessary decisions regarding his next surgery and do whatever is in his best interest. Please pray for the medical team, the doctor performing the cath procedure (Dr. Baker), his staff and everyone who will be working with Chase. We covet the prayers of our family and friends (and blog readers, too!) and realize we wouldn't be able to make it through all of this without those prayers!
Thank you in advance for following our journey, praying for our sweet boy and providing much-needed encouragement along the way.
Friday, February 19, 2010
New Cath Date
Chase had his cardiology appointment this morning with Dr. Horne. At his last appointment 2 weeks ago, we were told he had a coarctation (narrowing) in his aorta. We were hoping for good news this morning, meaning the narrowing hasn't gotten any worse. Unfortunately, that isn't the case.
He was originally scheduled for his first heart cath on March 29th. However, his echo this morning showed the coarctation is now measuring 3 mm (it was 4.3 mm 2 weeks ago). His blood pressures indicated the same findings as the echo, as they were lower than before. Thankfully his pulses are still very good, which means his blood is still moving throughout his body just fine.
Based on the findings this morning, Dr. Horne didn't want to wait until March 29th for his heart cath. Instead, they told me it would be March 1st. After we came home from the appointment, I got a call from the cath lab at MUSC telling me his cath has been moved to this Thursday, February 25th! I have SO begun freaking out big time. I'm already scared and nervous for the cath lab procedure since he'll be under anesthesia, but I'm also worried about the coarctation. At his last appointment, Dr. Horne said a balloon procedure to widen the narrow section (during the cath procedure) would probably not work because he felt that it would just return back to its current size. What this tells me, although we'll know MUCH more after next Thursday, is that Chase is most likely going to have his next surgery, the Bi-Directional Glenn, VERY soon... most likely within the next 3 or 4 weeks. They'll need to surgically address the coarctation and that will happen during the Glenn. So, assuming Chase's lung pressures give him the "go ahead" for the Glenn, I'm thinking it's possible we'll do the surgery the week of March 1st. This is just my best guess -- obviously I don't have a medical degree.
This is how I'm looking at this (VERY SCARY) situation: Typically, heart babies have a very difficult time gaining weight, so they usually like to schedule the Glenn around 6 months of age to give the baby plenty of time to grow, put on weight and allow their lungs to develop. Chase is a big boy. He weighs about 14 lbs. and is almost 4 months old. He's VERY good at eating. He's growing. He's thriving. He's putting on weight like nobody's business! This is all very good, except it means that he could outgrow the BT Shunt that was placed during his first heart surgery. SO... (I hope you're able to follow my random train of thought) If we had waited until the end of March for his cath, there's a good chance my big boy could've had a problem with outgrowing his shunt. Perhaps this aorta issue is God's way of having us take care of his next heart surgery sooner than later to prevent possible problems. Seriously, I don't know if any of that makes sense or if it's even overly accurate from a medical perspective, but this is just one sweet little heart baby's mama sharing her thoughts and feelings about her baby boy.
I'm curious and very anxious to hear from other heart moms who have gone through the Glenn earlier than expected. I'm so scared but my hope is in the Lord! He has a perfect plan for my sweet Chase's life and I am fully committed to Him and His will.
Please pray for Chase as we prepare to head back to MUSC for another procedure and very possibly, another surgery. We'll need to work out housing and childcare and all kinds of fun stuff like we did for our previous stay in Charleston, but we've got less than a week versus 18 weeks like last time! Please pray for all the pieces to fall into place and for God to keep His hand of protection around our baby boy. And pray for me. Have I mentioned I'm scared? I hate the uncertainty of what lies ahead, but I know Who sees our future and I'm trusting in Him.
He was originally scheduled for his first heart cath on March 29th. However, his echo this morning showed the coarctation is now measuring 3 mm (it was 4.3 mm 2 weeks ago). His blood pressures indicated the same findings as the echo, as they were lower than before. Thankfully his pulses are still very good, which means his blood is still moving throughout his body just fine.
Based on the findings this morning, Dr. Horne didn't want to wait until March 29th for his heart cath. Instead, they told me it would be March 1st. After we came home from the appointment, I got a call from the cath lab at MUSC telling me his cath has been moved to this Thursday, February 25th! I have SO begun freaking out big time. I'm already scared and nervous for the cath lab procedure since he'll be under anesthesia, but I'm also worried about the coarctation. At his last appointment, Dr. Horne said a balloon procedure to widen the narrow section (during the cath procedure) would probably not work because he felt that it would just return back to its current size. What this tells me, although we'll know MUCH more after next Thursday, is that Chase is most likely going to have his next surgery, the Bi-Directional Glenn, VERY soon... most likely within the next 3 or 4 weeks. They'll need to surgically address the coarctation and that will happen during the Glenn. So, assuming Chase's lung pressures give him the "go ahead" for the Glenn, I'm thinking it's possible we'll do the surgery the week of March 1st. This is just my best guess -- obviously I don't have a medical degree.
This is how I'm looking at this (VERY SCARY) situation: Typically, heart babies have a very difficult time gaining weight, so they usually like to schedule the Glenn around 6 months of age to give the baby plenty of time to grow, put on weight and allow their lungs to develop. Chase is a big boy. He weighs about 14 lbs. and is almost 4 months old. He's VERY good at eating. He's growing. He's thriving. He's putting on weight like nobody's business! This is all very good, except it means that he could outgrow the BT Shunt that was placed during his first heart surgery. SO... (I hope you're able to follow my random train of thought) If we had waited until the end of March for his cath, there's a good chance my big boy could've had a problem with outgrowing his shunt. Perhaps this aorta issue is God's way of having us take care of his next heart surgery sooner than later to prevent possible problems. Seriously, I don't know if any of that makes sense or if it's even overly accurate from a medical perspective, but this is just one sweet little heart baby's mama sharing her thoughts and feelings about her baby boy.
I'm curious and very anxious to hear from other heart moms who have gone through the Glenn earlier than expected. I'm so scared but my hope is in the Lord! He has a perfect plan for my sweet Chase's life and I am fully committed to Him and His will.
Please pray for Chase as we prepare to head back to MUSC for another procedure and very possibly, another surgery. We'll need to work out housing and childcare and all kinds of fun stuff like we did for our previous stay in Charleston, but we've got less than a week versus 18 weeks like last time! Please pray for all the pieces to fall into place and for God to keep His hand of protection around our baby boy. And pray for me. Have I mentioned I'm scared? I hate the uncertainty of what lies ahead, but I know Who sees our future and I'm trusting in Him.
Wednesday, February 17, 2010
Monday, February 15, 2010
Something the Lord Made
Hubs and I watched a movie over the weekend that I can't help but discuss here. The movie is called "Something the Lord Made." It tells the true story of Dr. Alfred Blalock who, together with his assistant Vivan Thomas and Dr. Helen Taussig, created a life-saving surgical solution for "Blue Baby Syndrome" -- also known as Tetraology of Fallot. These pioneers opened the field of heart surgery, creating the BT Shunt (Blalock-Taussig Shunt), a variation of which is in my son's chest, keeping him alive today.
Whether or not you have a close connection to the "heart community" I think you will enjoy this movie. It is fantastic. Plain and simple. And it was obviously very inspiring to hubs and I since it deals with the onset of heart surgery. I found the movie very informative as the challenges of developing surgical techniques on the heart were met head-on with Dr. Blalock's determination and Vivian Thomas' vast skills and creativity.
Do yourself a favor and see this movie. It's well worth your time!
Whether or not you have a close connection to the "heart community" I think you will enjoy this movie. It is fantastic. Plain and simple. And it was obviously very inspiring to hubs and I since it deals with the onset of heart surgery. I found the movie very informative as the challenges of developing surgical techniques on the heart were met head-on with Dr. Blalock's determination and Vivian Thomas' vast skills and creativity.
Do yourself a favor and see this movie. It's well worth your time!
Saturday, February 13, 2010
Just Another Update...
Well, first of all, Happy Valentine's Day! Our little family celebrated in a weird sort of way this year. We decided we weren't going to "officially" celebrate (read: no cards, flowers, chocolates, romantic dinner, etc.) and decided to mainly do stuff for the kids. I sort of broke protocol by ordering myself a beautiful necklace from Blue Nile (my FAV!) and let my husband give it to me for Valentine's Day. ;) He cheated as well by giving me a gold Godiva box filled with 8 of my favorite truffles: Dark Chocolate Raspberry! YUM! Yesterday we let LO open one of her Valentine's Day gifts a few days early... Hungry, Hungry Hippos! We figured since we got a very rare day of snow and were stuck inside (ha! like every other day of our week!), we should make the most of it and play a fun game. Then today I bought this gem at Target for Chase and let him break it in a day early. I'll post pics of the early gift fun for the kids tomorrow.
On another note, I realized I didn't give an update regarding Chase's echo last Friday. I already mentioned that Dr. Horne found a narrow section in his aorta. Well, he went back and looked at his previous 2 echos (December and January) and it turns out the narrow section was there on both of his previous echos. This raised some concerns for hubs and I. Why wasn't it noticed before? We'll have another echo next Friday and my guess is it will still be there, and hopefully not any more narrow than it was in the previous echos. I'm still a bit frustrated that we were completely blindsided last week by this additional complication. It will be addressed during Chase's next surgery, but I so hate the idea of having MORE stuff done. Ugh.
Guess that's it for now. I'm tired. And I wish I had some ice cream.
((random))
On another note, I realized I didn't give an update regarding Chase's echo last Friday. I already mentioned that Dr. Horne found a narrow section in his aorta. Well, he went back and looked at his previous 2 echos (December and January) and it turns out the narrow section was there on both of his previous echos. This raised some concerns for hubs and I. Why wasn't it noticed before? We'll have another echo next Friday and my guess is it will still be there, and hopefully not any more narrow than it was in the previous echos. I'm still a bit frustrated that we were completely blindsided last week by this additional complication. It will be addressed during Chase's next surgery, but I so hate the idea of having MORE stuff done. Ugh.
Guess that's it for now. I'm tired. And I wish I had some ice cream.
((random))
Wednesday, February 10, 2010
What's Going On?
It's been several days since my last post (again). I'm so sorry! Honestly, we had an "incident" with Chase here at home last Monday (10 days ago) that I'm not going to discuss on the blog. Chase is perfectly fine, so don't worry! But there's been some stuff going on that's related to Monday's incident so I haven't been able to discuss it freely out here since I'm choosing not to share the details behind what happened. But I got to thinking today that there's no reason I can't share stuff with Chase that appears to be unrelated to the incident from last week.
So over the weekend and into the start of this week, Chase was not acting like himself at all. Of course hubs and I assumed it could be related to last week's incident, but we're pretty sure it's not. So Chase was acting very fussy, wasn't sleeping at all during the day, wouldn't eat from a bottle very well and was just a moody version of his normal self. This was obviously so unlike him so when he was still acting this way on Monday, hubs and I decided to take him to the pediatrician for a quick look.
I explained the behavior changes we had been seeing with Chase to the doctor and she said it sounded like he's having bouts of reflux! Wow! Hubs and I hadn't expected that! Basically she was thinking that he was extremely uncomfortable with his feeds due to the excessive irritation and pain in his throat from the reflux. It made sense. He would always turn his head all the way to the left when taking a bottle, and even then, he would still get upset (in pain?) and somewhat choke on it.
So what was her suggested plan of action??
GO BACK ON THICKENED FEEDS.
Yes. I couldn't believe she said it. Back to thickened feeds. Back to pumping all the time. Back to NO nursing my baby boy.
She also suggested we restart the Reglan. We were told by MUSC to discontinue Reglan after Chase had been on thin liquids for 2 weeks. We had phased it out completely about a week ago.
Oh, and she also said we should increase his Zantac to 3x per day instead of 2x per day like we had been doing. I asked her if the dose should remain the same or not. Basically, we were told 0.3 mL of Zantac 2x/day when we were discharged from MUSC when Chase was about 9 lbs. Now he's 13 lbs. It made sense to me that the dosage should increase accordingly. She did some quick math and determined I was correct -- his dosage should be 0.9 mL 3x/day! What a huge increase! I'm glad I asked!
Anyway, hubs and I discussed all of this and, as usual, we decided to make our own decisions regarding Chase's care. It made sense to up his Zantac, but we weren't sure 0.9 mL was right, especially since the prescription was written by a doctor at MUSC and not his pediatrician. We wanted to go over all of the pediatrician's recommendations with the MUSC doctor who cared for Chase (I've left messages and still haven't had a call back! Ugh!). So in the meantime, we decided to go to 0.6 mL of Zantac 3x/day. We also weren't too keen on restarting the Reglan, and thought it would be best to change the Zantac dose, wait a few days to see how he responds, then start the Reglan again later if it seems he needs it.
And the thickened feeds?
No thank you.
Basically, when I nurse Chase, he does just fine! He eats well and doesn't have any major problems with fussiness or reflux. It's only when I give him a bottle. Well, actually, when I give him a bottle of breastmilk, he takes it fine, too! Hubs and I continued our discussion until we got to this point: It's only when we give him a bottle of (the NASTY) Alimentum hypoallergenic formula that Chase shows signs of fussiness, pain, reflux, irritation, etc.
What?!
Is it truly as simple as ditching the nasty formula?
I'm hoping so. But in the meantime, we're going to keep the 0.6 mL Zantac dosage 3x/day and keep him off the Alimentum formula. I'd be more likely to give him regular formula and see if it causes blood in his stool (milk allergy not confirmed in my opinion) than make him suffer with that nasty stuff. Anyway, by Monday evening, Chase had returned to his normal "happy baby" self that we know and love! So we'll see what the MUSC doc says if/when she returns my call, but for now, I think we're doing what's best for Chase and that's really all that matters to me!
On a LO-related note... We officially registered her for 5-day preschool starting this Fall! It's only from 8:30 AM until 12:00 PM but for FIVE DAYS a week! Obviously I'm excited that the house will be a bit quieter during those hours and I'll have more one-on-one time with Chase, but I'm so completely excited for LO to start "school!" I've loved staying home with her but I've always hated that she hasn't had any opportunities to socialize with other little kiddos, make friends and learn new skills. We had thought about the 3-day program, but I like the consistency and routine of her going Monday through Friday. I can't wait!! She's going to LOVE it!!!
So over the weekend and into the start of this week, Chase was not acting like himself at all. Of course hubs and I assumed it could be related to last week's incident, but we're pretty sure it's not. So Chase was acting very fussy, wasn't sleeping at all during the day, wouldn't eat from a bottle very well and was just a moody version of his normal self. This was obviously so unlike him so when he was still acting this way on Monday, hubs and I decided to take him to the pediatrician for a quick look.
I explained the behavior changes we had been seeing with Chase to the doctor and she said it sounded like he's having bouts of reflux! Wow! Hubs and I hadn't expected that! Basically she was thinking that he was extremely uncomfortable with his feeds due to the excessive irritation and pain in his throat from the reflux. It made sense. He would always turn his head all the way to the left when taking a bottle, and even then, he would still get upset (in pain?) and somewhat choke on it.
So what was her suggested plan of action??
GO BACK ON THICKENED FEEDS.
Yes. I couldn't believe she said it. Back to thickened feeds. Back to pumping all the time. Back to NO nursing my baby boy.
She also suggested we restart the Reglan. We were told by MUSC to discontinue Reglan after Chase had been on thin liquids for 2 weeks. We had phased it out completely about a week ago.
Oh, and she also said we should increase his Zantac to 3x per day instead of 2x per day like we had been doing. I asked her if the dose should remain the same or not. Basically, we were told 0.3 mL of Zantac 2x/day when we were discharged from MUSC when Chase was about 9 lbs. Now he's 13 lbs. It made sense to me that the dosage should increase accordingly. She did some quick math and determined I was correct -- his dosage should be 0.9 mL 3x/day! What a huge increase! I'm glad I asked!
Anyway, hubs and I discussed all of this and, as usual, we decided to make our own decisions regarding Chase's care. It made sense to up his Zantac, but we weren't sure 0.9 mL was right, especially since the prescription was written by a doctor at MUSC and not his pediatrician. We wanted to go over all of the pediatrician's recommendations with the MUSC doctor who cared for Chase (I've left messages and still haven't had a call back! Ugh!). So in the meantime, we decided to go to 0.6 mL of Zantac 3x/day. We also weren't too keen on restarting the Reglan, and thought it would be best to change the Zantac dose, wait a few days to see how he responds, then start the Reglan again later if it seems he needs it.
And the thickened feeds?
No thank you.
Basically, when I nurse Chase, he does just fine! He eats well and doesn't have any major problems with fussiness or reflux. It's only when I give him a bottle. Well, actually, when I give him a bottle of breastmilk, he takes it fine, too! Hubs and I continued our discussion until we got to this point: It's only when we give him a bottle of (the NASTY) Alimentum hypoallergenic formula that Chase shows signs of fussiness, pain, reflux, irritation, etc.
What?!
Is it truly as simple as ditching the nasty formula?
I'm hoping so. But in the meantime, we're going to keep the 0.6 mL Zantac dosage 3x/day and keep him off the Alimentum formula. I'd be more likely to give him regular formula and see if it causes blood in his stool (milk allergy not confirmed in my opinion) than make him suffer with that nasty stuff. Anyway, by Monday evening, Chase had returned to his normal "happy baby" self that we know and love! So we'll see what the MUSC doc says if/when she returns my call, but for now, I think we're doing what's best for Chase and that's really all that matters to me!
On a LO-related note... We officially registered her for 5-day preschool starting this Fall! It's only from 8:30 AM until 12:00 PM but for FIVE DAYS a week! Obviously I'm excited that the house will be a bit quieter during those hours and I'll have more one-on-one time with Chase, but I'm so completely excited for LO to start "school!" I've loved staying home with her but I've always hated that she hasn't had any opportunities to socialize with other little kiddos, make friends and learn new skills. We had thought about the 3-day program, but I like the consistency and routine of her going Monday through Friday. I can't wait!! She's going to LOVE it!!!
Friday, February 5, 2010
Cardiology Appointment
Chase had his bi-weekly cardiology appointment this morning at 9:30 AM. I always expect his appointments to take a while (hours) and this morning was no exception. It was about 3 hours! Here's how it went:
- His o2 saturation was 88. That's really great! Dr. Horne mentioned he didn't want it to be much higher than that because it would mean too much blood is going to his lungs. His o2 saturation will trend downward as he gets closer to needing his next surgery.
- His blood pressures were great! They check blood pressure on both arms and both legs and all of them looked super!
- His pulses were great as well. Dr. Horne checks his pulse in both is wrists and groin and was very pleased!
- His weight was up to 13 lbs., 3 oz.!!! He was wearing a diaper but I'm guessing he's right close or right at 13 lbs. My big boy!!
- His length was up to 24.2 inches! He sure is getting long!
- We went back for an echo next. I though it was funny that the tech came in and asked me if Chase takes a bottle. It was a strange question and a bit out of context. I said yes. Apparently she was expecting me to feed him a bottle during the echocardiogram?? I told her he just ate before we left the house and she looked disappointed and asked if he had a paci. I said yes. It was weird. I've never been asked/told to feed him during the echo before!? Not surprisingly, he did fantastic. He slept through the majority of it, but did wake up and fuss while she was trying to images from the top of his chest (near his neck). Since he freaked out a bit, she went on and got images from near his stomach and never went back up near his neck. We finished up and went back to the room.
- We waited in the room for a good 20 minutes and still no Dr. Horne. Chase was hungry so (as much as I hate to do this in "public") I went ahead and was nursing him in the tiny room. Oddly enough, the echo tech stopped by a few minutes later and informed me we needed to repeat the echo to get some images of the top of his heart (the part he flipped out at earlier and she never went back to). So, I asked her to give us a few minutes so I could finish nursing him; otherwise, he'd never sit still through the echo a second time. The echo only took about 5 minutes and Chase cooperated very well!
- Back to our little exam room. Dr. Horne came in and we had a nice chat. He was very happy with Chase's blood pressures and pulses. He left the room for a second and said something about getting a heart diagram. I was a bit concerned because this made me think he needed to describe a problem with Chase's heart and needed a visual aid. Sure enough, he found something not awesome on the echo. Apparently Chase's descending aorta has a narrowing that he hadn't seen before. The section measured 4.3 mm across, where it should be between 6-7 mm. At this point, he wasn't concerned, but said that we'd repeat an echo at our next appointment in 2 weeks (usually we only do an echo every other visit, or once a month). Obviously I am concerned/worried because this is not what we expected and not what we wanted to see. Dr. Horne plans to go back and review Chase's previous echos (the ones done at MUSC and at Dr. Horne's office) to see if his aorta has slowly narrowed over the past few months, or if has always been that way and they never noticed it or had a good picture of it, etc. He said the section could be "ballooned" or expanded during Chase's heart cath in March but he didn't think it would do any good and that it would just return to being narrow. Ultimately, this appears to be an additional item they'll need to address during his Glenn surgery (probably in April). If the narrow area continues to get more narrow over the next few weeks, Dr. Horne will move up our cath date and possibly move up his next surgery to be sooner rather than later. All of this doesn't give me a warm & fuzzy feeling, but ultimately I know it's good that we found it now and will be watching it closely.
- Other than the coarctation of his aorta, everything looked great. When I asked Dr. Horne how he felt about how Chase was doing at his last appointment, he said he was "thrilled." Today, we were downgraded to "very happy." I'm okay with this and will keep telling myself that over and over again every single day until if/when I truly am okay with it!
Thursday, February 4, 2010
Just Chase
Here's a clip of Chase from just a few minutes ago. I guess this is mostly for my family's benefit (both near and far!) since they don't get to see my boy and his total absolute cuteness in person! I truly hate that my friends and family will only get to know Chase in his early months through this blog, photos, texts, etc. But anyway, here's about 4 minutes of Chase just being Chase! I wanted to make him laugh by tickling him but I hate the sound of me on these recordings... I think it distracts from him too much.
Enjoy!
Enjoy!
Overboard
It's officially been 9 days since the start of potty training, and, I'm sure you've heard (read) me mention it several times, but LO has done a fantastic job! She's been accident-free for 7 straight days! I think she's got this potty training thing in the bag. So each time she goes potty, she gets a candy (M&Ms, Reese's Pieces, Hershey's Kisses -- whatever we have lying around leftover from recent holidays) AND she also gets a sticker. I don't know what I was thinking offering BOTH candy and stickers with each successful potty trip. Obviously I figured in the beginning that she'd need some good motivation to get things going, and I'm realizing now I went a tad bit overboard. This is evidenced by the massive amount of stickers All. Over. The. House. It's crazy where I keep finding these durn stickers! My pants. The couch. Her beanbag. Her clothes. Her stomach. Our bed. Her bed. The swing. The bouncy seat. The ottoman. The coffee table. The bookshelf. The TV. The entertainment center. A saute pan in the cupboard. These stickers are literally everywhere! And we learned (the hard way) that these stickers don't peel off the hardwood floors very well. There are little white splotches of sticker remains all over the hardwood floors. Sheesh! So I've decided to do away with the stickers as a potty reward. And I figure if she puts up a big stink I'll just double the candy. That should go over just fine!
So other than sticker madness, things here at home are the same as usual. Chase is doing really great! He has an appointment tomorrow morning with his pediatric cardiologist, and this visit will include an echo. It gives me such peace of mind to see him every other week and have a monthly echo. My biggest fear is the biggest risk for Chase between now and his next surgery: his shunt becoming occluded. It helps that his shunt is checked monthly and so far it has been clear. Once he has his second surgery, this will no longer be a risk as the shunt is removed. Chase has been putting on weight (he's almost 13 pounds!) and eating great. I still feel like he's not getting enough breastmilk from me because after I feed him, I'll offer him 2 ounces of milk in a bottle and he'll take it like he hasn't eaten in days! I don't know why but supplementing him makes me feel like a complete failure! I've been pumping for 20 minutes after all of his feeds for almost a week and haven't seen any significant increase. It kills me to know that I've exhausted all my options and have done everything under the sun that I could do to increase my supply. I just don't want to give up completely. I nursed LO 'til she was 7 months old (finally had to give up due to supply issues with her, too), and was hoping to nurse Chase just as long if not longer. My biggest goal is to get him through his next surgery. Breastmilk is just so much better for him, especially when he's recovering from another heart surgery! ((sigh))
On a random note, I'm a bit torn when it comes to blogging these days. See, you all know we're stuck in a bubble here at home. There's only so much "exciting" that can happen in this sort of environment. So basically, there's not much to blog about. But at the same time, I hate not updating the blog for several days in a row. But I don't want to post about boring ol' stay-at-home mom type stuff. So what do you think? Keep posting about whatever? Or let several days (or weeks) go by in between posts?
So other than sticker madness, things here at home are the same as usual. Chase is doing really great! He has an appointment tomorrow morning with his pediatric cardiologist, and this visit will include an echo. It gives me such peace of mind to see him every other week and have a monthly echo. My biggest fear is the biggest risk for Chase between now and his next surgery: his shunt becoming occluded. It helps that his shunt is checked monthly and so far it has been clear. Once he has his second surgery, this will no longer be a risk as the shunt is removed. Chase has been putting on weight (he's almost 13 pounds!) and eating great. I still feel like he's not getting enough breastmilk from me because after I feed him, I'll offer him 2 ounces of milk in a bottle and he'll take it like he hasn't eaten in days! I don't know why but supplementing him makes me feel like a complete failure! I've been pumping for 20 minutes after all of his feeds for almost a week and haven't seen any significant increase. It kills me to know that I've exhausted all my options and have done everything under the sun that I could do to increase my supply. I just don't want to give up completely. I nursed LO 'til she was 7 months old (finally had to give up due to supply issues with her, too), and was hoping to nurse Chase just as long if not longer. My biggest goal is to get him through his next surgery. Breastmilk is just so much better for him, especially when he's recovering from another heart surgery! ((sigh))
On a random note, I'm a bit torn when it comes to blogging these days. See, you all know we're stuck in a bubble here at home. There's only so much "exciting" that can happen in this sort of environment. So basically, there's not much to blog about. But at the same time, I hate not updating the blog for several days in a row. But I don't want to post about boring ol' stay-at-home mom type stuff. So what do you think? Keep posting about whatever? Or let several days (or weeks) go by in between posts?
Monday, February 1, 2010
Happy Monday!
It's been a quiet weekend here. We had a few days of a lovely ice/sleet mix... unfortunately (for LO's sake) there was no snow to play in. Oh, well. It's only February so I'm sure we'll see at least one little snowstorm move through our area before spring arrives.
So let's see... LO's potty training? A-MAZING! We started last Tuesday on a whim, just for the heck of it, to see how she'd do. A few accidents her first day, one accident on day 2 and she's been accident-free since! She's using the potty all by herself -- we don't have to remind her or force her to go every 30 minutes or anything like that. We bought a cute Dora potty seat to put on the "big" potty but it moved around and didn't seem safe, so we bought a BabyBjorn Toilet Trainer and it fits perfectly. She's started using the big potty already. And she does it ALL by herself (except #2 wiping... I know, TMI!). I'm still completely shocked this was so easy. She wakes up dry in the mornings and after nap times, but I'm still putting her in a pull-up just in case. I'm just so very proud of my sweet LO. Everybody said girls are easy to potty train, but MY GOODNESS! I never expected it would be THIS easy! Yay, LO!!!!
Chase is doing fantastic, as usual (Praise the Lord!). His only real "struggle" these days is pooping. Seems like he'll only do it every other day (sometimes every 2 days) and it's a big production with a lot of straining for him. Hubs and I will put some Karo syrup in his bottle to help with the process sometimes. I hate that my sweet heart baby has to struggle so much with this. My guess is that it's due in part to the fact that we had been supplementing him a bit with the (nasty-smelling and tasting) Alimentum formula. I know breast milk is so much easier for babies to digest, so my only guess is the formula is slowing him down. Thankfully we haven't had to supplement with formula the past few days, so hopefully that will help. I'm still struggling a bit keeping up my supply to meet his demand. I've started pumping for 20 minutes after EVERY. FEEDING. in the hope that it will send the message to my body to make more. I figure I'll keep this up for a week or so and see if there's any improvement. This is the biggest struggle for me. I don't want to give up but I also want to supply 100% of his milk! It's crazy the amount of self-worth I find (or don't find) in being able to provide for my baby.
My boy is getting so much more alert and active. It's so much fun to tickle him and make him laugh! His smile is absolutely captivating! We've been spending some time on his tummy, which he doesn't love but is totally necessary. His head control is getting extremely good, too!
We have been keeping Chase in a pack n' play in our bedroom since we came home from Charleston. I think we kept LO in there until she was 6 months old before we finally moved her to her nursery. With Chase, I'm thinking we'll keep him with us until a month or so after his Glenn surgery (probably scheduled some time in April). So I decided the other day it just wasn't fair to make the poor boy sleep in a pack n' play when he could be sleeping in his fantastic, comfortable crib! Last night hubs went ahead and moved the crib into our bedroom, so Chase spent his first night sleeping in his very own bed! We were nervous if he'd sleep well or not, but he did a great job (of course!)! Now he gets to stare at his adorable Jungle Tales bedding and use all of the adorable mobiles and crib toys we couldn't use in the pack n' play. It's such a real blessing to be able to finally use that crib and bedding. If you recall, we bought it all before we got his HLHS diagnosis and honestly, I wasn't comfortable setting up the crib before we went to Charleston for Chase's birth and surgery. I was so apprehensive and nervous about whether or not we'd be bringing our baby home. Well Praise the Lord for His plans for our sweet baby boy! We know how complex and serious this diagnosis is and we know without a doubt how very blessed we are to have an otherwise healthy and thriving baby boy! God is so good and we are so humbled and thankful for His grace and mercy!
Here are some recent pics and a video of the kids for your viewing pleasure! :)
Don't ask me why, but for some reason, LO absolutely loves the boppy pillow. I dug it out of her closet to use it with Chase the other day, but I can't get my hands on it these days 'cause she's doing something with it. I'm not sure the benefit of sitting on the boppy on top of the beanbag, but it makes her happy. :)
Here she is sporting some straw glasses her Aunt D bought for her. We haven't let her actually try the straw part yet, but she seems to be enjoying the glasses as-is.
Again with the boppy. This time as a sombrero. Crazy girl.
Guess who's holding his own bottle already? LOL!
And finally, here's a little clip of Chase. Hubs was trying to get him to laugh and I was trying to record it. Of course our little guy is just way too observant and caught a glimpse of the camera. He's so silly!
So let's see... LO's potty training? A-MAZING! We started last Tuesday on a whim, just for the heck of it, to see how she'd do. A few accidents her first day, one accident on day 2 and she's been accident-free since! She's using the potty all by herself -- we don't have to remind her or force her to go every 30 minutes or anything like that. We bought a cute Dora potty seat to put on the "big" potty but it moved around and didn't seem safe, so we bought a BabyBjorn Toilet Trainer and it fits perfectly. She's started using the big potty already. And she does it ALL by herself (except #2 wiping... I know, TMI!). I'm still completely shocked this was so easy. She wakes up dry in the mornings and after nap times, but I'm still putting her in a pull-up just in case. I'm just so very proud of my sweet LO. Everybody said girls are easy to potty train, but MY GOODNESS! I never expected it would be THIS easy! Yay, LO!!!!
Chase is doing fantastic, as usual (Praise the Lord!). His only real "struggle" these days is pooping. Seems like he'll only do it every other day (sometimes every 2 days) and it's a big production with a lot of straining for him. Hubs and I will put some Karo syrup in his bottle to help with the process sometimes. I hate that my sweet heart baby has to struggle so much with this. My guess is that it's due in part to the fact that we had been supplementing him a bit with the (nasty-smelling and tasting) Alimentum formula. I know breast milk is so much easier for babies to digest, so my only guess is the formula is slowing him down. Thankfully we haven't had to supplement with formula the past few days, so hopefully that will help. I'm still struggling a bit keeping up my supply to meet his demand. I've started pumping for 20 minutes after EVERY. FEEDING. in the hope that it will send the message to my body to make more. I figure I'll keep this up for a week or so and see if there's any improvement. This is the biggest struggle for me. I don't want to give up but I also want to supply 100% of his milk! It's crazy the amount of self-worth I find (or don't find) in being able to provide for my baby.
My boy is getting so much more alert and active. It's so much fun to tickle him and make him laugh! His smile is absolutely captivating! We've been spending some time on his tummy, which he doesn't love but is totally necessary. His head control is getting extremely good, too!
We have been keeping Chase in a pack n' play in our bedroom since we came home from Charleston. I think we kept LO in there until she was 6 months old before we finally moved her to her nursery. With Chase, I'm thinking we'll keep him with us until a month or so after his Glenn surgery (probably scheduled some time in April). So I decided the other day it just wasn't fair to make the poor boy sleep in a pack n' play when he could be sleeping in his fantastic, comfortable crib! Last night hubs went ahead and moved the crib into our bedroom, so Chase spent his first night sleeping in his very own bed! We were nervous if he'd sleep well or not, but he did a great job (of course!)! Now he gets to stare at his adorable Jungle Tales bedding and use all of the adorable mobiles and crib toys we couldn't use in the pack n' play. It's such a real blessing to be able to finally use that crib and bedding. If you recall, we bought it all before we got his HLHS diagnosis and honestly, I wasn't comfortable setting up the crib before we went to Charleston for Chase's birth and surgery. I was so apprehensive and nervous about whether or not we'd be bringing our baby home. Well Praise the Lord for His plans for our sweet baby boy! We know how complex and serious this diagnosis is and we know without a doubt how very blessed we are to have an otherwise healthy and thriving baby boy! God is so good and we are so humbled and thankful for His grace and mercy!
Here are some recent pics and a video of the kids for your viewing pleasure! :)
Don't ask me why, but for some reason, LO absolutely loves the boppy pillow. I dug it out of her closet to use it with Chase the other day, but I can't get my hands on it these days 'cause she's doing something with it. I'm not sure the benefit of sitting on the boppy on top of the beanbag, but it makes her happy. :)
Here she is sporting some straw glasses her Aunt D bought for her. We haven't let her actually try the straw part yet, but she seems to be enjoying the glasses as-is.
Again with the boppy. This time as a sombrero. Crazy girl.
Guess who's holding his own bottle already? LOL!
And finally, here's a little clip of Chase. Hubs was trying to get him to laugh and I was trying to record it. Of course our little guy is just way too observant and caught a glimpse of the camera. He's so silly!Friday, January 29, 2010
Potty Update
I am amazed at the progress LO has made in just 4 short days of potty training! She had 3 accidents Tuesday (her first day), then ONE Wednesday morning, and ZERO since then! That's right! She hasn't had an accident since Wednesday morning and it is currently Friday afternoon. Wow! I had no idea she'd do so well! She already knows when it's time to go and heads to the potty. She's even pooped on the potty Wednesday, Thursday and today! I absolutely cannot believe this craziness! And, she's even woken up dry from naps for the past 2 days and overnight this morning. I've been dreading this potty training because I was letting myself get overwhelmed with all that it will entail, but it's been such smooth sailing with LO! What a big girl!!!
So I guess our next step will be to get her to go on the "big" potty. She already turns the bathroom light on/off, flushes the big potty (after mommy or daddy empty her little potty into it) and stands on her stool and washes her hands by herself. This is so not the huge hurdle I was afraid it would be!
I'm so proud of my wonderfully amazing BIG GIRL!!!
So I guess our next step will be to get her to go on the "big" potty. She already turns the bathroom light on/off, flushes the big potty (after mommy or daddy empty her little potty into it) and stands on her stool and washes her hands by herself. This is so not the huge hurdle I was afraid it would be!
I'm so proud of my wonderfully amazing BIG GIRL!!!
Wednesday, January 27, 2010
Potty Time!
Guess who finally started potty training the day after she turned 2 1/2? Yep! That's right! Our sweet LO has officially begun the process of ditching the diapers (Amen!)! Yesterday was our first day. I'll be honest, I had NO IDEA where to start. I've read about so many different approaches to potty training, from putting her in pull-ups all day, to going straight to "big girl" panties, to letting her run around the house completely naked for three days to magically do the trick. After much thought, I decided it would be best for us to go straight to the big girl panties during the day, and pull-ups during nap time and nighttime. My assumption is that this would be the best way for her to know when she's had an accident, plus it would eliminate transitioning from pull-ups to panties.
I consider our first day to be a complete success, although we technically had a 50% success rate. Her first accident was on the bean bag we bought her for her first birthday. That was my fault -- I should've known better than to leave the bean bag in the room. Then she headed towards the carpet in her play area and I caught her in the act and put her on the potty. Then later in the day she went twice on her potty! Woot! I was so excited!!! She got a few mini M&Ms and an Elmo sticker each time. At nap time she wore a pull-up and woke up poopy, which I sort of expected. Later in the afternoon she went on the carpet outside the bathroom (again, my bad -- I thought daddy was watching her at the time), but then last night she went in the potty again for the third time! I figure if she uses the potty 3 times on her first day, that's a pretty good first day!!! She woke up very wet this morning, which really didn't surprise me (I understand the nighttime training usually comes later after she masters the daytime). She had one accident this morning where she peed on the hardwood floor standing 2 feet from hubs -- I'm not sure why. But I figure we just stick with this and try to be consistent and hopefully she will figure this out soon. It's really hard to keep her off the couches and carpeted areas, so I hope it doesn't take forever! :)
Here she is announcing to the world what she did yesterday!
On an unrelated note, I took Chase to see his pediatrician yesterday to have him look at his tongue to see if the thrush has cleared up yet or not. His tongue still had a white layer on it and I wasn't comfortable with the nurse I spoke to when I called just calling in another week of treatment (he'd already been on Nystatin for 2 weeks), so I asked for an appointment to see his doctor. So what did the doc say after checking out Chase's tongue? He doesn't have thrush. He never did. Whaa?? This is what I had been saying from the beginning. I just thought he had some white color on his tongue from breastmilk. I guess I should trust my mommy intuition! Regardless, I'm happy that he's fine and we don't have to continue any treatment for thrush. Hubs is especially happy because he's the one that's been soaking all of Chase's bottle stuff, syringes, pacis, etc. in vinegar water and then boiling them every night for the past 2 weeks! Sheesh!!
I took this little video of Chase while we were in the waiting room at the doctor's office. I have to hide the camera from him, otherwise he stares at it and refuses to laugh or smile!
I consider our first day to be a complete success, although we technically had a 50% success rate. Her first accident was on the bean bag we bought her for her first birthday. That was my fault -- I should've known better than to leave the bean bag in the room. Then she headed towards the carpet in her play area and I caught her in the act and put her on the potty. Then later in the day she went twice on her potty! Woot! I was so excited!!! She got a few mini M&Ms and an Elmo sticker each time. At nap time she wore a pull-up and woke up poopy, which I sort of expected. Later in the afternoon she went on the carpet outside the bathroom (again, my bad -- I thought daddy was watching her at the time), but then last night she went in the potty again for the third time! I figure if she uses the potty 3 times on her first day, that's a pretty good first day!!! She woke up very wet this morning, which really didn't surprise me (I understand the nighttime training usually comes later after she masters the daytime). She had one accident this morning where she peed on the hardwood floor standing 2 feet from hubs -- I'm not sure why. But I figure we just stick with this and try to be consistent and hopefully she will figure this out soon. It's really hard to keep her off the couches and carpeted areas, so I hope it doesn't take forever! :)
Here she is announcing to the world what she did yesterday!
On an unrelated note, I took Chase to see his pediatrician yesterday to have him look at his tongue to see if the thrush has cleared up yet or not. His tongue still had a white layer on it and I wasn't comfortable with the nurse I spoke to when I called just calling in another week of treatment (he'd already been on Nystatin for 2 weeks), so I asked for an appointment to see his doctor. So what did the doc say after checking out Chase's tongue? He doesn't have thrush. He never did. Whaa?? This is what I had been saying from the beginning. I just thought he had some white color on his tongue from breastmilk. I guess I should trust my mommy intuition! Regardless, I'm happy that he's fine and we don't have to continue any treatment for thrush. Hubs is especially happy because he's the one that's been soaking all of Chase's bottle stuff, syringes, pacis, etc. in vinegar water and then boiling them every night for the past 2 weeks! Sheesh!!
I took this little video of Chase while we were in the waiting room at the doctor's office. I have to hide the camera from him, otherwise he stares at it and refuses to laugh or smile!
Tuesday, January 26, 2010
Josiah Nathaniel Wilson
From Erin & Milo Wilson:
We will be having a memorial service for our precious baby on Thursday, January 28th at 6:30pm. The service will be held at Edwards Road Baptist Church.
Edwards Road Baptist Church
1050 Edwards Road
Greenville, SC 29615
For those who will be traveling from Charleston be advised that 385 Northbound is closed due to construction and you will have to continue on I-26 until you reach I-85 in Spartanburg. This will add an additional 30 minutes to your drive, however returning home you will be able to take 385 southbound. Please look carefully at a map to plan your trip.
We will be celebrating the life our son, Josiah, through this service and would love to celebrate with all who have been touched by Josiah's life. For those who have asked about and our interested in sending flowers or gifts please respect our wishes and do not send those. We will be setting up a fund in the next 24 hours to honor Josiah through a few organizations that are near to our hearts. Thank you so much.
We are so grateful for the outpouring of love we have been experiencing these past few days. We have has so many generous offers and we are so overwhelmed. To honor our precious son we would ask that you make any contributions to one of the following organizations that are close to our heart.
We will be having a memorial service for our precious baby on Thursday, January 28th at 6:30pm. The service will be held at Edwards Road Baptist Church.
Edwards Road Baptist Church
1050 Edwards Road
Greenville, SC 29615
For those who will be traveling from Charleston be advised that 385 Northbound is closed due to construction and you will have to continue on I-26 until you reach I-85 in Spartanburg. This will add an additional 30 minutes to your drive, however returning home you will be able to take 385 southbound. Please look carefully at a map to plan your trip.
We will be celebrating the life our son, Josiah, through this service and would love to celebrate with all who have been touched by Josiah's life. For those who have asked about and our interested in sending flowers or gifts please respect our wishes and do not send those. We will be setting up a fund in the next 24 hours to honor Josiah through a few organizations that are near to our hearts. Thank you so much.
We are so grateful for the outpouring of love we have been experiencing these past few days. We have has so many generous offers and we are so overwhelmed. To honor our precious son we would ask that you make any contributions to one of the following organizations that are close to our heart.
This is the organization that has selflessly served us and many other families in similar situations as us. They have provided us housing, food, counseling, childcare and a world of support. This is a local organization in Charleston, SC.
Please make sure to designate on this page that you would like your donation to go to Pediatric Cardiology. You can also send the donation in honor of Josiah Wilson.
Our hearts have broken over the devastation of Haiti. We believe that Josiah would be greatly honored to know that people gave to this cause in support of a nation of children that are hurting.
Please consider supporting one of these causes in honor of Josiah. It warms our hearts to know so many people care for us and are looking for a way to honor the life of our son.
Sunday, January 24, 2010
Pray for the Wilson Family
From Josiah's mommy on Sunday, Jan. 24th around 2:50 PM:
Thank You for your prayers. Josiah's heart is now whole. He is in the loving arms of Jesus. Truly, a heart that holds on.
Please keep the Wilson family in your thoughts and prayers as they deal with this unimaginable loss.
Thank You for your prayers. Josiah's heart is now whole. He is in the loving arms of Jesus. Truly, a heart that holds on.
Please keep the Wilson family in your thoughts and prayers as they deal with this unimaginable loss.
Saturday, January 23, 2010
Hope for a Future with HLHS
Today I came across an amazing little video on YouTube provided by the Children's Hospital of Philadelphia (CHOP). It's just over 6 minutes long and contains interviews with surgeons, cardiologists and other staff at CHOP specifically regarding Hypoplastic Left Heart Syndrome (HLHS) and the future/outcomes that can be expected following the staged reconstruction surgeries (Norwood, Glenn, Fontan) that Chase and all other HLHS babies go through. This video was a bright spot of inspiration to me, and I hope it will be for you, too!
YouTube has disabled the ability to embed the video, so all I can do is provide a link to YouTube so you can watch it yourself. I highly recommend my fellow heart moms take a look at this! It is such an encouragement!!!
Click here to watch the video.
Also, it looks like CHOP has an entire series of videos on HLHS that are very informative, from diagnosis, to surgery and treatment, etc. Take the time to watch some of these and you'll learn a LOT about what heart parents experience through this HLHS journey with our sweet babies!
YouTube has disabled the ability to embed the video, so all I can do is provide a link to YouTube so you can watch it yourself. I highly recommend my fellow heart moms take a look at this! It is such an encouragement!!!
Click here to watch the video.
Also, it looks like CHOP has an entire series of videos on HLHS that are very informative, from diagnosis, to surgery and treatment, etc. Take the time to watch some of these and you'll learn a LOT about what heart parents experience through this HLHS journey with our sweet babies!
Thursday, January 21, 2010
Random Pics & Videos
Well, I had good intentions of sharing lots of recent pics and a video or two of the kids. It was gonna be an awesome post, in order by date so it would be all logical and such. Unfortunately, durn Blogger only lets you upload FIVE pictures at a time, and it posts them in such a random order. Usually I "fix" this by moving all of the images around (usually by editing the HTML) but I guess I just don't have the time or energy so I'm gonna go with whatever Blogger gave me. So, here we go!
This is the little video of LO dancing at Red Robin the other night. Man, was she ever happy to be out of the house!!!
This is a really short clip of Chase crying. I don't know for sure why I recorded him crying, but I am sure that it only took a few seconds before I felt bad, turned off the iPhone camera and got the poor boy his paci!
One last video of Chase. Daddy's at it again, tickling him after a diaper change, trying to get him to laugh and coo. Doesn't his scar look great?
I took this the other day when I let LO wear Dora "big girl panties" (a.k.a. Pampers Easy Ups). Can you tell she was excited?? And yes, this is what her hair typically looks like these days. I see no reason to "do" her hair when we stay home All. Day. Long. Every. Single. Day.
The other day playing outside while it was nice out. I had Chase's "Rock Star" hat on him, but it got turned around and somehow managed to slip off his head almost altogether. It looked pretty silly with his crazy striped pj's.
Awwww! Chase fell asleep in my arms and I needed to put him down for a few minutes to do something. I saw LO's beanbag sitting there unoccupied so I nestled him in there. It swallowed him up and made him look so tiny!
Ah, yes. The one where we finally got the family out of the house. Here's LO looking super-excited at the dinner table at Red Robin. She was so happy to be out of the house. She of course stood up and danced a jig at one point during the night. I think that clip should show up on here somewhere.
I'm not sure there are words for this one. I bought her a Disney Princess headband ribbon thingy for Christmas, but now that I think about it, I never actually showed her how to use it... Hmmm... I guess a lesson's in order, huh?
One of my new faves of Chase. This was when we were outside one of the "warm" days we had last week. He's such a precious little angel and I love him to pieces! SOOOOO glad he's mine!!!
LO was playing outside with a ball when a neighbor came by walking his dog (this loud, obnoxious dog lives down the street from us and yaps persistently throughout the day AND night). She let him play with her ball and he went ALL FOR it, which slightly took her by surprise!
Here she is offering the ball up for play.
Another cute one of Chase while we were hanging out outside. Just wanna eat up those cheeks!
A new favorite pic of LO. I actually DID do her hair that day, but we went outside to play after her nap, which is why it ended up destroyed. Plus she was running around outside a bit. I just love the pure expression on her face!
Can you guess what she's thinking in this pic? I'm pretty sure I just told her "no" to something and she was preparing her argument.
A cute one of LO just after she kicked the ball!
This was her getting ready to kick the ball. Ya know, I really could take the time to put these in logical order, but I don't want to ruin all the fun now!
Chase chillin' on his big sister's beanbag. I'm guessing we'll be buying our little guy one of these for his 1st birthday, just as we did for LO.
Another pic of the beanbag, this time showing a bit more of how he looks all swallowed up in there!
All smiles after a diaper change!
Tummy time, working on those neck and shoulder muscles!
Enjoying his rainforest playmat.
Laughing like crazy with my favorite -- the big, open-mouth grin!
Here's a little video gem of Chase from the other night. Daddy was tickling him, trying to get him to laugh. He makes a face about half-way through it that cracks me up!!! You can tell he was surprised and that Daddy got him good!
The other day playing outside while it was nice out. I had Chase's "Rock Star" hat on him, but it got turned around and somehow managed to slip off his head almost altogether. It looked pretty silly with his crazy striped pj's.
Awwww! Chase fell asleep in my arms and I needed to put him down for a few minutes to do something. I saw LO's beanbag sitting there unoccupied so I nestled him in there. It swallowed him up and made him look so tiny!
Ah, yes. The one where we finally got the family out of the house. Here's LO looking super-excited at the dinner table at Red Robin. She was so happy to be out of the house. She of course stood up and danced a jig at one point during the night. I think that clip should show up on here somewhere.
I'm not sure there are words for this one. I bought her a Disney Princess headband ribbon thingy for Christmas, but now that I think about it, I never actually showed her how to use it... Hmmm... I guess a lesson's in order, huh?
One of my new faves of Chase. This was when we were outside one of the "warm" days we had last week. He's such a precious little angel and I love him to pieces! SOOOOO glad he's mine!!!
LO was playing outside with a ball when a neighbor came by walking his dog (this loud, obnoxious dog lives down the street from us and yaps persistently throughout the day AND night). She let him play with her ball and he went ALL FOR it, which slightly took her by surprise!
Here she is offering the ball up for play.
Another cute one of Chase while we were hanging out outside. Just wanna eat up those cheeks!
A new favorite pic of LO. I actually DID do her hair that day, but we went outside to play after her nap, which is why it ended up destroyed. Plus she was running around outside a bit. I just love the pure expression on her face!
Can you guess what she's thinking in this pic? I'm pretty sure I just told her "no" to something and she was preparing her argument.
A cute one of LO just after she kicked the ball!
This was her getting ready to kick the ball. Ya know, I really could take the time to put these in logical order, but I don't want to ruin all the fun now!
Chase chillin' on his big sister's beanbag. I'm guessing we'll be buying our little guy one of these for his 1st birthday, just as we did for LO.
Another pic of the beanbag, this time showing a bit more of how he looks all swallowed up in there!
All smiles after a diaper change!
Tummy time, working on those neck and shoulder muscles!
Enjoying his rainforest playmat.
Laughing like crazy with my favorite -- the big, open-mouth grin!
This is the little video of LO dancing at Red Robin the other night. Man, was she ever happy to be out of the house!!!
This is a really short clip of Chase crying. I don't know for sure why I recorded him crying, but I am sure that it only took a few seconds before I felt bad, turned off the iPhone camera and got the poor boy his paci!
One last video of Chase. Daddy's at it again, tickling him after a diaper change, trying to get him to laugh and coo. Doesn't his scar look great?
Overdue Update
Well, in case it isn't apparent, hubs has been going back to work (in the office) for the past week or two. I say this only because finding time to post updates on my blog? Not happening. So sorry! I've seen several friends and family members over the past few days who have asked me how things are going with Chase, his feedings, etc., and I thought it was weird because I never get those questions! Except when I'm not updating the blog and keeping people posted, I guess! So finally today the stars aligned just so and I'm able to take a few minutes to let everybody know what we've been up to.
Chase is doing fantastic, of course! He's been nursing exclusively for the past week and has handled it so well! He can take breastmilk in a bottle with NO THICKENER finally!!! He hasn't been spitting up hardly at all, which is a huge blessing! It seems like he has growth spurts every now and then, but I think it might just be that I'm having a problem keeping up my milk supply to meet his crazy demand! I spoke with a Lactation Consultant at MUSC today and she told me I can't take any medications or herbs that increase milk supply because they've been shown to cause heart issues and aren't recommended for heart babies. She basically said to feed on demand for 3-5 days and that should increase my supply, but I'm not going to hold my breath. I basically already did that for a few days and it was exhausting (feeding every TWO HOURS) and I didn't notice any change in my supply. But I'm willing to do it again because it's what's best for Chase and ultimately, it's so much easier for me to nurse him than to worry about formula or heating bottles. So please say a little prayer that somehow my supply will figure out how to keep up with Chase's demand. On an encouraging note, the LC told me she was very impressed and somewhat surprised that I was able to get Chase to nurse exclusively after he had been on feeding tubes and bottles for his first 10 weeks of life. She said she's been doing her job for 20 years and she's almost never heard of someone able to do that, especially considering Chase's additional health issues we've had to deal with. And the fact that I'm still so committed to nursing exclusively while dealing with a thrush infection and mastitis? Apparently I get a gold star or something. But I will say it was hard for me to hear that she more or less said it was okay to "give up" on nursing exclusively and go ahead and start supplementing with formula if the feeding on demand for a few days doesn't work. Basically there's nothing more I can do. It's so frustrating, especially because I've already been in this same position with LO. Apparently my body just isn't on board with producing enough breastmilk to feed my babies. Go figure. Ugh.
LO is still hanging in there. I took her to lunch with my mom and sisters on Monday and she was beside herself ecstatic to be out of the house, out in public, and spending time with people she loves. She had such a great time and literally there were moments of what seemed to be uncontrollable glee that she just couldn't contain. We really need to get that girl out more often! We had a few nice days here so we were able to play outside for a bit, but the rain and cold are back today! Also, I'm *this close* to jumping in with both feet to start potty training. The only problem is I have NO IDEA how to start or what method to use or how to do it. LO isn't showing a ton of signs for readiness, but she's 2 1/2 and I think it's time. I think if I'm all up in her face every 10 minutes to go sit on the potty, eventually it will come to her. I'm completely and totally open to suggestions, opinions, things that worked for your kids, etc... Please, HELP!!!
Hubs and I are doing very well (usually). He's back in the office, which leaves me at home with the kids (and gives us the opportunity to miss each other instead of being under each others' feet 24/7). This is exactly what I've always wanted, but nobody told me how hard it would be to go from ONE child to TWO children. Schedules are out the window! Oh, and the rule of "you sleep with the baby sleeps" that you follow with the first baby, totally does NOT work with the second baby. Such a learning curve to deal with right now! Crazy! But I'm finding ways to get out of the house every now and then (to keep myself sane) and am figuring out how to manage to take care of the kids, cook dinner and find time to clean the house. It's just taking a lot longer than I expected!
So overall things are going great here! Chase has a cardiology appointment tomorrow, and we're praying and hoping for continued good news. We're very grateful for all of you who follow our crazy life and who continue to keep us in your thoughts and prayers. We know Chase will have his first heart cath on March 29th and most likely will have his 2nd heart surgery in April or May. We're not looking forward to getting back on the rollercoaster, but we pray Chase recovers as well with this one as he did with his first surgery, and that we'll FINALLY be able to introduce him to family and friends and get him out of this house!!!! :)
P.S. I have some new pics and videos of the kids I'll be uploading over the next day or so, so be sure to come back and check 'em out!
Chase is doing fantastic, of course! He's been nursing exclusively for the past week and has handled it so well! He can take breastmilk in a bottle with NO THICKENER finally!!! He hasn't been spitting up hardly at all, which is a huge blessing! It seems like he has growth spurts every now and then, but I think it might just be that I'm having a problem keeping up my milk supply to meet his crazy demand! I spoke with a Lactation Consultant at MUSC today and she told me I can't take any medications or herbs that increase milk supply because they've been shown to cause heart issues and aren't recommended for heart babies. She basically said to feed on demand for 3-5 days and that should increase my supply, but I'm not going to hold my breath. I basically already did that for a few days and it was exhausting (feeding every TWO HOURS) and I didn't notice any change in my supply. But I'm willing to do it again because it's what's best for Chase and ultimately, it's so much easier for me to nurse him than to worry about formula or heating bottles. So please say a little prayer that somehow my supply will figure out how to keep up with Chase's demand. On an encouraging note, the LC told me she was very impressed and somewhat surprised that I was able to get Chase to nurse exclusively after he had been on feeding tubes and bottles for his first 10 weeks of life. She said she's been doing her job for 20 years and she's almost never heard of someone able to do that, especially considering Chase's additional health issues we've had to deal with. And the fact that I'm still so committed to nursing exclusively while dealing with a thrush infection and mastitis? Apparently I get a gold star or something. But I will say it was hard for me to hear that she more or less said it was okay to "give up" on nursing exclusively and go ahead and start supplementing with formula if the feeding on demand for a few days doesn't work. Basically there's nothing more I can do. It's so frustrating, especially because I've already been in this same position with LO. Apparently my body just isn't on board with producing enough breastmilk to feed my babies. Go figure. Ugh.
LO is still hanging in there. I took her to lunch with my mom and sisters on Monday and she was beside herself ecstatic to be out of the house, out in public, and spending time with people she loves. She had such a great time and literally there were moments of what seemed to be uncontrollable glee that she just couldn't contain. We really need to get that girl out more often! We had a few nice days here so we were able to play outside for a bit, but the rain and cold are back today! Also, I'm *this close* to jumping in with both feet to start potty training. The only problem is I have NO IDEA how to start or what method to use or how to do it. LO isn't showing a ton of signs for readiness, but she's 2 1/2 and I think it's time. I think if I'm all up in her face every 10 minutes to go sit on the potty, eventually it will come to her. I'm completely and totally open to suggestions, opinions, things that worked for your kids, etc... Please, HELP!!!
Hubs and I are doing very well (usually). He's back in the office, which leaves me at home with the kids (and gives us the opportunity to miss each other instead of being under each others' feet 24/7). This is exactly what I've always wanted, but nobody told me how hard it would be to go from ONE child to TWO children. Schedules are out the window! Oh, and the rule of "you sleep with the baby sleeps" that you follow with the first baby, totally does NOT work with the second baby. Such a learning curve to deal with right now! Crazy! But I'm finding ways to get out of the house every now and then (to keep myself sane) and am figuring out how to manage to take care of the kids, cook dinner and find time to clean the house. It's just taking a lot longer than I expected!
So overall things are going great here! Chase has a cardiology appointment tomorrow, and we're praying and hoping for continued good news. We're very grateful for all of you who follow our crazy life and who continue to keep us in your thoughts and prayers. We know Chase will have his first heart cath on March 29th and most likely will have his 2nd heart surgery in April or May. We're not looking forward to getting back on the rollercoaster, but we pray Chase recovers as well with this one as he did with his first surgery, and that we'll FINALLY be able to introduce him to family and friends and get him out of this house!!!! :)
P.S. I have some new pics and videos of the kids I'll be uploading over the next day or so, so be sure to come back and check 'em out!
Friday, January 15, 2010
Happiness Is...
- BOTH kids napping at the SAME TIME!!!
- Getting both kids out of the house to run errands that don't include any meltdowns from either child!
- Taking a shower before dinnertime.
- Chase getting through another growth spurt (growth spurts = eating every 2 hours and NOT napping during the day)!
- Having useful and productive conversations with my husband.
- Finding out Ghiradelli makes dark chocolate squares that don't have milk products in them (YUM!)!
- Taking both kids outside to enjoy an unusually warm day!
- Going shopping all by myself.
- Enjoying a date night with my husband (it hasn't happened yet, but a girl can dream!).
- Surviving two personal training sessions AND the assessment telling me how out of shape I really am.
- Breastfeeding my baby during the day (it's impossible to pump with TWO kids to care for).
- Lunch dates with my mom and sisters.
- Catching up with old friends.
Wednesday, January 13, 2010
Growth Spurt
Not much to report but thought I'd still post our most recent happenings. Gotta admit I'm liking these weeks without doctor's appointments -- there's so much less to blog about though! I'm gonna go with bullet points for tonight's update 'cause it just seems quicker.
- Chase has been going through a growth spurt over the past 48 hours. He'll eat 5 ounces of breastmilk and then an hour later, down anywhere from 2-4 ounces of formula. He's a growing boy! The best part about this is that we found out he will in fact take that nasty formula, Alimentum. It's the milk-free formula that smells like cheez-it spit. Truly.
- I had Chase's stool sample tested today and it came back NEGATIVE for blood!!! Woot! I'm very happy about this, but when I spoke with his doctor to determine our next step, he said we'd wait until he's 6 months old and try the milk protein again. Are you hearing me? Four more months on a milk-free diet for this momma. I'm not thrilled about it but will do whatever it takes to keep my boy healthy and strong.
- I just told hubs earlier tonight that this afternoon I had a very strange thought, one that I promised myself years ago I would never have: What if we buy a minivan? We've been doing some SUV shopping lately (nothing serious, just initial stuff) and for some reason I'm set on having the "captain chairs" behind the front seats so each of the kids can have their own seat and it's easier to get them in and out of their carseats. This could only be accomplished by buying a HUGE bus of an SUV, or buying a minivan. I'm quite certain before we got married, hubs and I made a pact that we would never be the minivan-driving sort. I'm so confused I don't know what I'm feeling right now! Ack!!
- I got out for a bit tonight, thankyouverymuch! I was thrilled to go to choir practice at my church for the first time in probably at least 3 months or so! It was fantastic to be around such wonderful people, singing praise and worship music together. I'm looking forward to getting back into the piano rotation next month. I do miss playing (much more than singing!).
- LO has been hanging in there. This whole scenario just isn't fair to her. I really try to get her out of the house as much as I can, but there's only so much fun in grocery shopping trips. She needs some fun time with both hubs and I doing something that's fun for her. It's difficult to pull it together but I'm trying my best!
- I took BOTH kids on some errands today while hubs was at work. I was so proud of myself! We made three stops, the last of which was at our nearby mall. Imagine my surprise when I got the kids loaded up to head home and our Jeep wouldn't start! I had to call hubs out of a meeting with his boss to come rescue us. Turns out he just jiggled some wires and we were on our way! Ugh. Now he has to teach me how to do it so I can fix it if it happens on me and the kids again. So where are we on that car shopping again?? ;)
Monday, January 11, 2010
Quiet, Sort Of
It's been a relatively quiet day here today. Hubs went back to work this morning so I've been flying solo with my two little ones. LO has behaved well for the most part. If Max & Ruby comes on TV, she zones out for a good 30 minutes. Chase has been good, too. Mostly he's been sleeping, waking up long enough to eat and spit up everywhere. I'm trying to see if he'll take a nap without being swaddled right now, but he's been fussing for a good 10 minutes so I guess I've got my answer. Oh, while I was changing Chase's diaper in the other room, LO was at the table eating lunch and she threw her corn all over the table and floor. I was not very happy about this so there was no dessert for her!
So yes, it's been mostly quiet around here. We're still treating Chase for thrush, and the Nystatin doesn't seem to be working very well. It's been about a week already and the white stuff is still on his tongue, although it doesn't seem to be as thick as before. I called in a refill on the Nystatin so we can try it for another week. Oh, and the best part is I think that what normally happens when a baby has thrush has happened... he shared it with me since I've been nursing him every other feed. Yay.
Sorry I didn't have anything exciting to share today... who really wants to read about corn and infections? Guess I didn't want to let a Monday go by without sharing something with cyberspace, so, there ya go!
Oh, and I'm waaaaay happy to tell you that we have ZERO doctor's appointments this week! I think this is the first week since we've been home (11 weeks) that we haven't had at least one appointment. Woot!
So yes, it's been mostly quiet around here. We're still treating Chase for thrush, and the Nystatin doesn't seem to be working very well. It's been about a week already and the white stuff is still on his tongue, although it doesn't seem to be as thick as before. I called in a refill on the Nystatin so we can try it for another week. Oh, and the best part is I think that what normally happens when a baby has thrush has happened... he shared it with me since I've been nursing him every other feed. Yay.
Sorry I didn't have anything exciting to share today... who really wants to read about corn and infections? Guess I didn't want to let a Monday go by without sharing something with cyberspace, so, there ya go!
Oh, and I'm waaaaay happy to tell you that we have ZERO doctor's appointments this week! I think this is the first week since we've been home (11 weeks) that we haven't had at least one appointment. Woot!
Saturday, January 9, 2010
Challenges
We've had a rough few days here mostly due to some feeding problems with Chase. When we went to MUSC last Tuesday, they told us he did great with his swallow study and could now handle thin liquids (i.e. breastmilk). We were ecstatic! The recommendation was to breastfeed every other feeding and give him a bottle in between with thickened milk, but slowly decrease the amount of thickener we use in the bottles until it is just breastmilk. We tried that for the first day or so, but it seemed the poor guy would spit up a lot of the bottle, while he appeared to keep the milk down when he nursed. Weird, right? So hubs and I made the decision to just jump ahead to exclusive breastfeeding and eliminating the bottles. That was working REALLY well for about a day. Then we noticed about three hours after he'd nursed, he would spit up a decent amount of milk. Only it's not really your normal "milk spit-up" so much as a mostly clear spit (TMI?). We've seen it come from his mouth and his nose, and usually it doesn't appear to upset him. But it definitely upsets me. Hubs and I attempted to discuss it this morning (more on that later... maybe) and we're guessing we'll go back to doing what MUSC recommended, supplementing with bottles in between breastfeeding. The down side to this is that it means I get to hook myself back up to that durn breast pump, which (as you might imagine), after 11 weeks of use, I'm quite sick of it!! I calculated that when Chase was exclusively bottle-feeding, I spent an average of 3 hours per day hooked up to that thing, which equates to about 90 hours per month!!! I really don't want to go back to that! As of right now, I'll be pumping every other feed, so I guess I'll keep telling myself that 50% is better than 100%!
Please pray that Chase learns how to handle breastmilk consistency feeds so that we won't have to go back to thickened feeds and stop breastfeeding. It's obviously very important that Chase continues to grow so he's nice and big for his next surgery (which will probably be in April or May), and if he spits up the breastmilk, he's not getting the calories he needs. I really don't want to go back to thickened bottle-feeds, but it has to be about what's best for Chase, and not what I want.
Just an FYI... Chase's cardiology appointment went great yesterday (in and out in only TWO short hours! woot!). He weighed in at a whopping 11 lbs. 5 oz. (with a dry diaper on) and was up to 23 inches in length! Dr. Horne said his saturation is great, his pressures are great and his heart function is great! In fact, he said that for an HLHS baby, Chase is as good as you can get! As if I didn't already know that!? I'm so grateful our journey has been what it's been. There are so many other families out there who are truly struggling or have lost their precious HLHS angel. God has blessed us with our sweet boy and we thank Him DAILY for the gift of bringing Chase into our family!
Thank you for your continued support and prayers. We've got other challenges happening right now, too, but they aren't related specifically to Chase and aren't really something I'll discuss here. I'll just say it's still an adjustment period for our family and all four of us being confined to our house almost 24/7 is a challenge.
((sigh))
Please pray that Chase learns how to handle breastmilk consistency feeds so that we won't have to go back to thickened feeds and stop breastfeeding. It's obviously very important that Chase continues to grow so he's nice and big for his next surgery (which will probably be in April or May), and if he spits up the breastmilk, he's not getting the calories he needs. I really don't want to go back to thickened bottle-feeds, but it has to be about what's best for Chase, and not what I want.
Just an FYI... Chase's cardiology appointment went great yesterday (in and out in only TWO short hours! woot!). He weighed in at a whopping 11 lbs. 5 oz. (with a dry diaper on) and was up to 23 inches in length! Dr. Horne said his saturation is great, his pressures are great and his heart function is great! In fact, he said that for an HLHS baby, Chase is as good as you can get! As if I didn't already know that!? I'm so grateful our journey has been what it's been. There are so many other families out there who are truly struggling or have lost their precious HLHS angel. God has blessed us with our sweet boy and we thank Him DAILY for the gift of bringing Chase into our family!
Thank you for your continued support and prayers. We've got other challenges happening right now, too, but they aren't related specifically to Chase and aren't really something I'll discuss here. I'll just say it's still an adjustment period for our family and all four of us being confined to our house almost 24/7 is a challenge.
((sigh))
Thursday, January 7, 2010
Pajamas
I've been getting super-frustrated with pajamas for Chase. Apparently stores pretty much only carry the one-piece jammies that have snaps instead of zippers. While the snaps were extremely useful while we were at MUSC (since he had lines coming from everywhere), I don't much care for finding and matching up snaps at 3 o'clock in the morning after changing a diaper. So I've been on the hunt for pajamas with zippers.
I found some Carters zipper pj's at Target, but it's really weird because the zipper bulges right under his chin and just looks plain ol' uncomfortable. Plus they are really thin. Both my mom and hubs' mom bought some really cute ones from The Children's Place, but the zipper twists all crazy around his leg and they're almost impossible to zip up. VERY frustrating.
So, I found some pj's online at Gap and ordered the cute ones below to see if they're any better... ((keeping fingers crossed))
I found some Carters zipper pj's at Target, but it's really weird because the zipper bulges right under his chin and just looks plain ol' uncomfortable. Plus they are really thin. Both my mom and hubs' mom bought some really cute ones from The Children's Place, but the zipper twists all crazy around his leg and they're almost impossible to zip up. VERY frustrating.
So, I found some pj's online at Gap and ordered the cute ones below to see if they're any better... ((keeping fingers crossed))
Genius!
So last night at dinner, hubs said something very moronic (I can't recall exactly what it was). So I sarcastically called him a genius.
LO looked at me and said, "Genius?" although she didn't pronounce it correctly at all. She obviously doesn't hear this word around our house much.
I said, "Yes, LO. Your daddy is a genius."
She looked at me and, pronouncing the word correctly this time, said, "Daddy's a genius? I don't know about that..." as she was shaking her head.
Hubs and I busted out laughing. Our LO is one smart cookie! And constantly making us laugh!
* - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - *
On a totally unrelated note, LO and I made cupcakes the other day. Here are some cute pics of her helping!
She loves the new stool her Pa Pa made her for Christmas. Although she's still calling it her "school." We're working on that...
Here she is sampling the cupcake batter. It's delicious!
And of course she had to try out the frosting, too! Thank goodness for Duncan Hines cake mix and frosting NOT having milk products in them (so mommy can eat them, too!).
I can't leave our little guy out of the pictures! Here he is from the other day (not too happy about being in his car seat) when I loaded him and LO up to run some errands all by ourselves! We hit Target and Radio Shack and BOTH of the kids behaved wonderfully for me. I was so proud that I was able to run errands with my kids all by myself! :)
And finally, here's a little clip of our boy being his cute little self! Enjoy!
LO looked at me and said, "Genius?" although she didn't pronounce it correctly at all. She obviously doesn't hear this word around our house much.
I said, "Yes, LO. Your daddy is a genius."
She looked at me and, pronouncing the word correctly this time, said, "Daddy's a genius? I don't know about that..." as she was shaking her head.
Hubs and I busted out laughing. Our LO is one smart cookie! And constantly making us laugh!
* - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - *
On a totally unrelated note, LO and I made cupcakes the other day. Here are some cute pics of her helping!
She loves the new stool her Pa Pa made her for Christmas. Although she's still calling it her "school." We're working on that...
Here she is sampling the cupcake batter. It's delicious!
And of course she had to try out the frosting, too! Thank goodness for Duncan Hines cake mix and frosting NOT having milk products in them (so mommy can eat them, too!).
I can't leave our little guy out of the pictures! Here he is from the other day (not too happy about being in his car seat) when I loaded him and LO up to run some errands all by ourselves! We hit Target and Radio Shack and BOTH of the kids behaved wonderfully for me. I was so proud that I was able to run errands with my kids all by myself! :)
And finally, here's a little clip of our boy being his cute little self! Enjoy!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... :)
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... :)
Friday, January 1, 2010
Park!!!
Chase's first trip to the park! Granted it's about 54 degrees out and he's not getting out of his carseat bundle, but still!
Oh, and you can imagine how happy LO is to finally get out of the house for a change!!
Posted from my iPhone
Oh, and you can imagine how happy LO is to finally get out of the house for a change!!
Posted from my iPhone
Subscribe to:
Posts (Atom)