Wednesday, September 30, 2009

The Latest

Today hubs and I had an appointment with our Pediatric Cardiologist, Dr. Horne. This was our last visit with him before we head to Charleston for Chase's birth and surgery. It was a very informative 2-hour appointment!

We started with an ultrasound and Dr. Horne gathered all kinds of measurements of Chase's heart. We were again very grateful that our sweet boy is developing normally and that there were no new issues discovered. His estimated weight was 5 lbs. 15 oz. (+/- .75 lb.)!!! I was hoping he would be at least 5 lbs. and he exceeded my expectations! Praise the Lord! I'm still praying for him to be at least 8 lbs. at birth -- the bigger, the better! We were so pleased that all of his measurements looked good -- he was above the 50th percentile across the board.

After the ultrasound we met with Dr. Horne for a consultation. He is such a wonderful doctor and took lots of time to explain things to us and answer our questions. He shared some interesting findings with us as well. He broke out a chart that listed the measurements he took of Chase's heart and started tossing terms like "standard deviation" around (I looked at hubs for a translation since I don't speak numbers) and basically was told that the range for the standard deviation is 2.5. ALL of Chase's measurements were within the standard deviation, with the exception of his ascending aorta, which was at -3.08. In my feeble understanding, that means that all of his measurements, except the ascending aorta, is within the average range of a healthy heart!!! Furthermore, Dr. Horne informed us that IF Chase's ascending aorta were to grow substantially in the next 3-1/2 weeks before his birth, there is a slight possibility that he would NOT need to have the first of the three surgeries, the Norwood procedure, his first week of life. He would still need the 2nd and 3rd surgeries and would still only have one functioning ventricle, but -- can you imagine?? The first surgery is by far the most complex and results in the longest recovery. It is an open-heart procedure, requiring heart/lung bypass, etc. Dr. Horne did say there was only about a 5% chance this could happen, but NOW I KNOW EXACTLY WHAT TO BE PRAYING FOR! Overall it seemed to me that all of the measurements and findings of this ultrasound were very encouraging and that most of Chase's heart is relatively "normal" in a sense. His pulmonary artery is actually larger than what is expected at 35 weeks in a baby with a healthy heart, which was very encouraging as well!

I am fully aware that we WILL face challenges and it WILL be a roller-coaster, but ultimately I am so grateful that God has been with us this far, and know without a doubt He will see us through our journey -- whatever it entails. I have been praying for God to provide a miracle for my sweet baby boy, whether through complete healing or through the surgeon's hands, and He is giving me a surreal peace in my heart and mind that He continues to be in control of everything. God hears our prayers and I will continue all the more fervently to ask Him for His goodness and grace for my baby boy. Please pray with me for this! Hubs and I know without a doubt that if it weren't for the prayers of our families and friends (and even some kind folks we don't know personally), we would not be handling this situation as "well" as we feel we are. We are prepared physically for what lies ahead (temporary housing, childcare, finances, etc.) but we know there is NO WAY for us to prepare emotionally for this journey. That's where faith and prayer come in! We are confident God will give us the strength we need to get through each and every day -- no more, no less!

I know I haven't said it enough, but THANK YOU SO MUCH for your continued thoughts, prayers and support for hubs and I. I can only imagine how helpless friends and family feel right now -- there's really nothing anyone can do (ourselves included!) and I'm sure that has to be frustrating. And I know it's probably hard to talk to us about the situation -- not knowing what to say and not wanting to say the "wrong" thing. Please just know that your prayer support is so very precious to us and we need you to continue to pray over the next few weeks as we put everything in place and prepare for Chase's arrival. God bless each and every one of you!

Tuesday, September 29, 2009

35 Weeks!

Week and day: 35 weeks, 2 Days

Belly Button in or out: Still in, of course!

Wedding rings on or off: Argh... I've been so happy that I've been able to keep them on so long, until yesterday. I had a really hard time getting them off, and I'm pretty sure the time is now here to keep them off. Phooey!!!

Food cravings: Chocolate milk.

Food aversions: None. Woot!

Nausea: None!

Energy level: Energy? What energy??

Weight gain: ((inadvertently skipping this one...))

Mood: Anxious and excited. Chase will be here in less than 4 weeks! I can hardly believe the time is almost here, yet it really feels like these last 4 months have S-L-O-W-L-Y dragged by. I'm very much looking forward to what God has in store for my family!

Maternity clothes: Duh!

Size of baby: He doesn't have much room to maneuver now that he's over 18 inches long and should tip the scales around 5 1/4 pounds.

Baby's changes: His kidneys are fully developed now, and his liver can process some waste products. Most of his basic physical development is now complete — he'll spend the next few weeks putting on weight. Woot!!

Next appointment: An appointment with the PC Dr. Horne on Wednesday. Hubs and I are quite anxious to see how much our little boy weighs when we see Dr. Horne. I'm praying that Chase will be 8+ lbs. when he's born, but from what Dr. Greig has said, I'm not on target for an 8 lb. baby. I'd love to defy him, though! LO was 8 lbs. 13 oz. at 40 weeks, so hopefully her little brother can hit the 8 lb. mark by 39 weeks!

What I've been up to: Just waiting and preparing and waiting and preparing. There's only so much I can do right now to get us ready for our big trip. The lists have all been written, but the packing can't happen until a few days before we leave. I'm feeling very prepared physically for Chase's arrival, but I'm certain I have no idea what I'll be up against emotionally. I've read blogs, researched HLHS, learned about the first surgery Chase will have, etc. But I know none of this will truly prepare me emotionally to watch my sweet baby boy go through open-heart surgery. I pray God will choose to heal him--whether by a true miracle of His divine hand, or through the surgeons and PCICU staff who will be caring for him. I know my God is good. He has a perfect plan for our sweet son and I am fully trusting in Him. He will provide!

Here ya go... 35 weeks:

Saturday, September 26, 2009


It's been a relatively uneventful few days in our household, which has contributed to my lack of blog writing. I feel like we're in a "holding pattern" of sorts right now, just waiting out these last 4 weeks until Chase is born. Don't get me wrong -- there are a lot of things we'll need to do before we head to Charleston, but most of it just can't be done until a few days before we hit the road. I've been trying to enjoy this time as I know this life as we know it will never be the same again! I've been trying to focus on LO and have as much fun with her as possible, since she'll be vying for her parents' attention in a few short weeks. I've been trying to mentally prepare myself as best as I can as far as what to expect and how to handle the roller coaster we're getting ready to board. Overall I have to admit that I think I'm in the best place possible mentally. God has truly been working on me and reminding me of His presence through all of this, that He's in control of our circumstances and He has a perfect plan for our family and especially for our darling Chase.

One great source of inspiration I came across last week was a wonderful book by the famed Christian author, Max Lucado. The book is titled Fearless.

I got it a few days ago and started reading it yesterday. I haven't been able to put it down! The book covers several different kinds of fears and many of them have spoken to my heart. Specifically, chapter 5: My Child is in Danger: Fear of Not Protecting My Kids. I cried my eyes out as I read the words of inspiration Max put on the pages -- words of inspiration straight from the heart and mouth of my Lord and Savior. I highly recommend this book to every person on the planet, but especially to parents and even more specifically to parents of children struggling with health problems. Let God use this book to remind you that He is with you through every fear.
Don't be afraid. Just believe, and your [child] will be well. ~ Luke 8:50 NCV
I've placed my trust in Him. I've placed my son's life in His hands (my children belong to Him anyway!). I'm keeping my eyes on Him so I will not falter as I face the most difficult situation of my life. I am so grateful for His love for me and my family, and for His innumerable blessings. What a concept to embrace life with a spirit of FAITH, not FEAR!

Wednesday, September 23, 2009

Dr. Appointment

Yesterday I had an appointment with the Perinatologist (high risk fetal maternal doctor guy). As I mentioned the other day, I was less than pleased when they called me Monday to remind me about my appointment and also informed me that children are not allowed in the office. This was a big surprise as we've brought LO to almost all of our appointments so both hubs and I could be there. So I was already irritated before I even got to the office.

When I walked into the office, I was even more irritated because there was a 4 or 5 year old boy in the waiting area with his mom. WHAA?? Ya. I proceeded to check in and while I was at it, I mentioned to the check-in lady that I did not appreciate the fact I was given less than 24 hours notice that children are not allowed at appointments. She told me there have been signs posted, but I promise you they were NOT there at my last appointment 2 weeks ago. She said they call people the day before their appointment to inform them about the new rule, and I said that just isn't enough notice for a stay at home mom to find someone to keep their child. I wasn't rude, but the lady most definitely had a bit of a chip on her shoulder. I let it go, figuring I'd share my thoughts on the subject with Dr. Greig when I saw him.

((Note: Hubs met me at the doctor's office and took LO to run errands while I went to the appointment by myself. I'm still quite irritated about this whole thing, but there's nothing I can do about it.))

So after about 15 minutes I went back for my ultrasound. The tech was nice and was checking several things to make sure Chase looked good. Everything she saw was great! I had to specifically ask her to measure his abdomen again, which she did, and confirmed he's in the 61st percentile! Praise the Lord! I was VERY pleased to hear this wonderful news. I also asked for his weight, but she said they don't do weight measurements each time -- usually every 3 weeks.

After the ultrasound, I was taken to a little room to wait on Dr. Greig. Five minutes... ten minutes... fifteen mintues... twenty minutes... almost TWENTY-FIVE minutes later, a NURSE comes in to ask (1) when my last OB appointment was and (2) IF I have an appointment scheduled with the Pediatric Cardiologist, Dr. Horne. I said I saw my OB last week, and that YES, I have an appointment with Dr. Horne next week HERE IN YOUR OFFICE! Seriously? Can they not look at their own schedule to confirm I have an appointment already scheduled? Ugh. Then, the nurse says I'm FREE TO GO! Whaa?? Where's Dr. Greig? Why have I been waiting 25 minutes for Dr. Greig if I'm not going to see him at all? Why couldn't you come in here 20 minutes ago to tell me I won't be seeing Dr. Greig today and save me from wasting 25 minutes of my morning while hubs and LO had been waiting for me in the parking lot??? I was seriously irritated.

Since I'm already on my soapbox, let me continue a step further. After our last appointment 2 weeks ago when they told me my son's abdomen growth was in the 16th percentile, I voiced my concerns to Dr. Greig AT the appointment. The next day, still not overly convinced at what he told me (eat a lot and rest a lot and "magically" his abdomen growth will improve), I sent him an email voicing my concerns over how this percentage could change from 61st percentile to 16th percentile over the course of 2 weeks. Dr. Greig CALLED ME and basically told me the same things he told me at the appointment the day before. Still no warm and fuzzy from this guy. I specifically asked him to confirm for me that this 16th percentile data they saw is in line with what his abdomen growth had been over the past several visits, and he AGREED! So now, magically, 2 weeks later, his abdomen growth is BACK in the 61st percentile. How is this possible?? What it comes down to is a BAD MEASUREMENT at our last appointment. Chase just wasn't in a good position to get a good measurement -- this I know. But WHY couldn't this doctor take the time to admit this? Did he even look over my previous ultrasound results to confirm that a 16th percentile measurement was a bit of an anomaly? Seriously, folks. I'm so tired of dealing with inept people that aren't willing to take TWO SECONDS to do their jobs! I mean, would it have taken him that much time to actually review Chase's growth over the past 14 weeks? Isn't that his JOB as a high risk doctor, to monitor the growth and development of my baby?? And would it have taken THAT MUCH time for a nurse to tell me after my ultrasound yesterday that Dr. Greig was behind schedule and I could either (A) go ahead and leave (without waiting 25 minutes for nothing) or (B) go ahead and wait on Dr. Greig, knowing that it would probably be a good 30 minutes before he could see me? It's called customer service, and it's something that does not exist these days (at least not in our experiences).

Whew. Okay, sorry about all that complaining. I just get so irritated that we keep having situations like this happen to us over and over and over again and it always comes back to the simple principle of customer service/patient care and taking two seconds to think about others. My hope and prayer is that we'll have the excellent care I've heard so much about once we get to MUSC for Chase's birth and surgery.

Monday, September 21, 2009

More Dancing

Hubs and I took LO to Chuck E. Cheese tonight. See, there will be ONE CEC commercial on early in the morning and LO will tell me she wants to go. I'll always tell her that we'll have to wait and ask Daddy when he gets home. Well tonight, as soon as he walked in the door, she asked if we could go to CEC maybe? We didn't have anything on our agenda, so we went for it. Here is a video and some pics...

Posted from my iPhone

Bullet Points

I'm not feeling overly creative today, so I'm going with a few simple bullet points:
  • Things have been pretty quiet in our household lately. The past few weeks have been focused on getting miscellaneous things done around the house, compiling lists for what needs to happen between now and Chase's birth, etc. There's a lot of preparation to be done, but it seems like a lot of it has to wait until closer to the big day. It's slightly overwhelming to think of what needs to happen between now and then, but I'm trying to stay focused and keep myself organized.
  • It's flu season. I understand this. But I was less than pleased when I got a call a few minutes ago from the Perinatologist's office reminding me about my appointment tomorrow at 10AM. Hubs and I were planning to go together, as we always have, bringing LO with us since we have no one to keep her that day. Well, this phone call informed me that they are not allowing any children in their office due to flu season. Ya. Less than 24 hours notice from my scheduled appointment time. I guess I understand their reasoning, but I was less than pleased to get this information the day before my appointment. So now, hubs will have to take LO to McDonald's or something while I go to the appointment SOLO. I'm not too happy about it. We've been waiting for this appointment for almost 2 weeks so we can see if Chase's abdomen growth has increased and I'd prefer to have my better half there with me when this is determined. Ugh.
  • Totally unrelated, but I'm totally loving my ability to post to my blog from my iPhone. It's sweet. As you've probably noticed, I can upload pics, video -- whatever I want -- from wherever I am. This is exactly what we wanted for while we're in Charleston so I can easily provide updates to friends and family on how things are going with us. I am a bit worried I've taken my mobile blogging a bit too far... so many recent posts of pics and videos... Y'all let me know if it gets to be too much. :)
  • Yesterday I found a blog for a fellow HLHS baby girl from Charleston, Maia Deeb, and her story has been such an encouragement and inspiration to me. From what I read, it seems her diagnosis was a very "standard" HLHS case, which we are expecting the same for Chase. Maia was born on July 26, 2009. Since Dr. Bradley (the acclaimed Pediatric Cardiothoracic surgeon at MUSC) was on vacation at the time, they waited 10 days for his return so he could do her surgery on August 5th. The surgery went very well, although her heart had a few challenges adjusting to the changes. However, she recovered well and was able to step down to 7C (in other words, move out of the PCICU) on August 16th! That was only 11 days after her surgery!! Amazing! As if that weren't fantastic enough, this sweet family was headed home with their newborn baby girl on August 21st -- less than a month after she was born! I am very encouraged by this family's HLHS journey because it proves to me that it IS possible for things to go smoothly and for God to bring us through this difficult time without the "worst case scenario" mindset that I've been struggling with for the past several weeks. I'm having a tough time walking the line between "optimistic" and "realistic" in the sense that I want to expect the best, but then in order to not be blindsided by setbacks, I feel like I should prepare for the worst. It's a difficult balance to find, and I'm certain I haven't found it as of yet. All I can do is continue to pray for our sweet boy, for God's healing touch, for guidance and wisdom along the way, and for Him to give us the strength that we need to get through each day. I know He is in control and I am doing my best to rest comfortably in His loving arms during such a tumultuous time.
  • I've been debating about getting Chase's nursery ready. Honestly, even after we get home with him, he'll probably sleep in the Pack n' Play in our bedroom for a few months, so I know we'll have plenty of time to get his room ready after we get home. You can imagine the main negative reason I'm not wanting to have his nursery ready for us to come home to, but I'm trying to stay positive so I won't dwell on this thought. I guess the bottom line is there will be plenty of time to put his nursery together when we return from Charleston, and quite frankly, I'll have a LOT more joy and excitement in putting it together when my darling son is here at home with me than I would now with all of the uncertainties in the air.
  • We still haven't received a "Welcome Packet" from MUSC. Hubs is adamant one exists. You know, a packet of information on MUSC, maps of the hospital, FAQs, billing information, where to park, what to expect, etc. Granted, there is a LOT of this information available on MUSC's website, which is nice, but I think hubs is hoping for something more. We'll keep keeping an eye out for it, but I'm not holding my breath. :)
  • I got a pedicure yesterday. It was nice. I'll definitely get another one before delivery day. Still thinking I ought to schedule another prenatal massage, too...
  • Guess that's it for now. What a bunch of rambling, huh?

Saturday, September 19, 2009

My Latest Obsession

Hostess Cupcakes. I could eat about 12 in one sitting, but I choose not to. Well, most of the time anyway...


And I wonder why I'm packing on the pregnancy pounds. Hmmm...

Posted from my iPhone

Friday, September 18, 2009

Pajama Dance!

Here's a little clip of LO doing her "pajama dance" while watching the Backyardigans. She sure does a great job of keeping Mommy and Daddy entertained!!!

Posted from my iPhone

Thursday, September 17, 2009

Your Help is Needed!

For those of you who read "The Wilson Heart" blog about baby Josiah, you may already know about this. Josiah's mom, Erin, is collecting donations to purchase a centrifuge for the PCICU at MUSC. Why, you ask?? Because sweet Josiah, who was born with HLHS at MUSC in May, cannot tolerate the normal amount of fat that is present in breastmilk. A nurse came up with the idea to use a centrifuge to separate the fat from the milk, essentially giving Josiah "skim" breastmilk. The wonderful news is that it's working great and he's putting on weight while getting all of then added nutrients and benefits of breastmilk.

The PCICU doesn't own a centrifuge, but they've decided this practice will definitely benefit babies in Josiah's position. Unfortunately they don't have money in the budget to purchase one, which is where these donations come in.

If you feel led to donate to this cause, CLICK HERE to visit Erin's blog and read more about this initiative. It will benefit so many babies -- perhaps even Chase! Thank you in advance for your kindness and generosity!

Posted from my iPhone

Wednesday, September 16, 2009

Our Little Pumpkin

As you probably know, Chase will be arriving the week of Oct. 26th. That means he'll be in the hospital for his first Halloween. Not one to let one of my child's first holidays pass by, I purchased him a little something this morning:

You probably also know he'll only be able to wear hats and socks (and diapers, of couse), so this is the extent of his first Halloween costume. ;)

Posted from my iPhone

Shopping with LO

This is technically another iPhone test, this time to upload a photo from my phone. This was taken the other day at the grocery store. For whatever reason, LO wanted to ride in the bottom of the little cart. Crazy girl!!

Posted from my iPhone

More Wonder Pets, Mom!

I'm trying out the blogging capabilities of my awesome iPhone, and wanted to see how easy it would be to post a short video clip I captured on my phone. This was LO the other night when a second episode of Wonder Pets came on. I always thinks it's hilarious when she calls me "mom." :)

Posted from my iPhone

Monday, September 14, 2009

33 Weeks!

Well, it's been a few weeks since I've posted a pregnancy update, so I thought I'd hit ya'll with 33 weeks. This way, I can continue to post every 2 weeks (at 35, 37 and 39 weeks). Chase should be here at 39 weeks, so believe it or not, we're almost there!!!

Week and day: 33 weeks, 1 Day

Belly Button in or out: Still in, of course! :)

Wedding rings on or off: Still on, and I can't believe it! I'm pretty sure they came off around 6 months when I was pregnant with LO. Here I am 8 months pregnant with Chase and rings are still on! WOOT!

Food cravings: Chocolate milk, Little Debbie Star Crunch cookies, Fruity AND Cocoa Pebbles (separately, not mixed together of course -- that would be gross!).

Food aversions: None. Woo-Hoo!

Nausea: None!

Energy level: I ain't gone none. No surprise there, right?

Weight gain: Do we really need to discuss this? Really? I can't imagine you guys are all that interested in how much weight I've gained with this pregnancy, are you? Seriously? Let's just say I'm thinking we're around the ((gulp)) 40 pound mark. There. I said it. You happy? Now I think I need another Star Crunch...

Mood: Anxious. It's hard to believe in less than 6 weeks, Chase will be here. I guess with most pregnancies this time should be an "excited anxious" but with me, it's a very NERVOUS anxious. I'm excited to finally see my precious baby boy for the first time, but I'm so very nervous about the roller coaster ride we'll be on once he's here. I'm worried about how LO will handle everything. Her WONDERFUL Aunt D will be her primary caretaker while hubs and I are at the hospital for Chase's birth. I know she'll have fun with Aunt D, but LO has NEVER been apart from hubs and I for more than one night. I'm worried she won't adjust well to not having mommy and daddy around all the time.

Maternity clothes: 24/7, of course!

Size of baby: This week he weighs a little over 4 pounds and is over 17 inches in length.

Baby's changes: He's rapidly losing that wrinkled, alien look and his skeleton is hardening.

Next appointment: Let's see... I've got a regular OB appointment on Wednesday. I'm waiting to hear from Dr. Greig about an appointment next week. Then, I see Dr. Horne (the Pediatric Cardiologist) the following Wednesday, September 30th. I also have a 38-week appointment already scheduled with the MUSC OB team on Wednesday, October 21st. There will pretty much be weekly appointments with my regular OB and Dr. Greig between now and the time we head to Charleston next month. It's hard to keep track of them all! Good thing I have my iPhone now to coordinate my crazy schedule! :)

What I've been up to: We are so very happy to have FINALLY nailed down a property for our stay in Charleston. It's about a 10 minute drive to MUSC, but it's in a lovely neighborhood and really works out great for LO. I did enjoy a lovely baby shower hosted by my dear sister and fellow pregnant friend last week. It was a small, intimate gathering of just a few close friends and was very special. We're also planning to kind of put Chase's room together. Hubs is working on putting the crib together, and I need to organize the baby stuff we've received. Part of me is nervous in putting together his room because of the potential risk that he won't be coming home with us, and we'd have an empty nursery to take apart. But I'm trusting in God and am continuing to pray for Chase's health and safety through his first surgery. I know my God is more than able to do exceedingly more than I could ever ask or imagine!!!

I think I've mentioned this on here already, but I'll go in to MUSC on Sunday evening, October 25th and my induction will start Monday morning, October 26th. God willing, Chase will be here on October 26th!!!

Sorry to disappoint, but I'm feeling way too lazy to take my 33 week pic right now. Honestly, LO is napping and mommy is heading to do the same! I'll try to post a pic soon! :)

Update: I finally got myself motivated enough to take my 33 week pic! I know, you can hardly contain your excitement, right? Well, here ya go. I must say, the best part of this pic is the pretty little iPhone the picture was taken with! :) Oh, and let's not discuss the fact that the shirt is barely able to contain my growing belly NOR the fact that my blue jeans are screaming for relief from covering my massive thighs!

Thursday, September 10, 2009

Another Update

So yesterday I was quite concerned with the findings of our latest ultrasound, specifically, the fact that the doctor told us Chase's abdomen was only in the 16th percentile for growth. I was very worried when we left, but even more so after we got home. I happened to have a copy of the information from our ultrasound at MUSC last week, and it indicated his abdomen circumference was in the 61st percentile! How in the world could it so drastically change in only 8 days!? Not to mention the fact that we were told he weighed 4 pounds last Tuesday at MUSC, and were told again yesterday that he weighed 4 pounds. That tells me he's put on NO WEIGHT in 8 days! Am I wrong to be concerned about this??

I did email Dr. Graham, the Pediatric Cardiologist at MUSC yesterday. Unfortunately he responded by saying he really isn't an expert in this area and that we really should rely on what Dr. Greig told us at our appointment. He suggested I contact Dr. Greig if I have worries or concerns. So I did.

I heard back from Dr. Greig today and he gave me a variety of reasons behind the discrepancy in numbers. He said there can typically be a 10-15% variation in numbers just due to the fact that there were 2 different ultrasound machines used in the measurements. He also stated there are several methods in which the baby's weight is estimated, so it really isn't an apples to apples comparison when you're talking about 2 different machines. He also said this is one reason why they typically don't do growth measurements less than 3 weeks apart, since there is so much variation in the baby's growth from week to week. And on top of all of this, Chase wasn't overly cooperative during the ultrasound and stayed laying on his left side. There's a really good chance the ultrasound tech wasn't able to get a good measurement because of his position. Again, Dr. Greig didn't seem overly concerned. He said based on what he saw, Chase's abdomen growth is on the "lower side of normal" and in cases like this, he typically tells the mom to rest more and eat more. We'll keep an eye on this measurement as we progress, considering we have weekly appointments with Dr. Greig from here on out. I guess I just need to relax and try not to worry (easier said than done!).

In the midst of all of this, I was very grateful to receive an encouraging email from a wonderful friend of mine this morning. She reminded me of a verse that brings a great deal of hope to me right now given our current circumstances:
"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." ~ Joshua 1:9

Wednesday, September 9, 2009

Chase Update

We had an appointment this morning with the Fetal-Maternal Specialist, Dr. Greig. They do weekly ultrasounds to gather information on how Chase is growing and developing. I was really hoping we wouldn't get the same ultrasound tech we had last time. Not only could she see scans of the table I was laying on with how hard she was pushing on my abdomen with that durn probe thingy (I was sure I would be bruised by the end of it), she made a comment that REALLY upset me! There I was, at 30 weeks with a baby diagnosed with HLHS, and she makes some horribly inexcusable comment about how she's just "looking for signs of failure" as she gathers measurements n' stuff. I couldn't believe she would say something like that to a patient. I specifically asked NOT to have her as our tech today, and we lucked out!

So during the ultrasound today, Chase was not the most cooperative thing ever -- no surprise there! He was laying on his left side, making it impossible for the tech to get any pictures or measurements of his heart. Typical stubborn boy! But she was able to gather other measurements, which was good. We asked her what his weight was estimated to be and she told us 4 pounds. We were quite surprised because 8 days ago when we were at MUSC for an ultrasound, they too estimated his weight to be 4 pounds. So that tells me he hasn't gained any weight in 8 days! Surely that can't be good!

Later when we met with Dr. Greig, he gave us another piece of interesting news. He said that the growth of Chase's abdomen was not on par with the rest of his body. His abdomen was only in the 16th percentile, which is much lower than his other growth percentiles that are in the 50s to 70s. I was majorly concerned about this, coupled with his apparent lack of weight gain. Dr. Greig's only suggestion was that I eat more. Ya. That's it! Eat more! He didn't seem overly concerned about it, but I couldn't help but worry a little bit.

I emailed Dr. Graham, the Pediatric Cardiologist we saw at MUSC last week to see if he had any different thoughts on this, whether or not it's normal or expected to see this in an HLHS baby, etc. I'm hoping and praying everything is still okay with my sweet baby boy and that he won't have any additional complications once he's born.

Please be praying for Chase, for his continued growth and development, for his weight gain and for him to be born as healthy as possible so he can be prepared for the surgery that awaits him.

Tuesday, September 8, 2009

Baby Josiah

When hubs and I went to MUSC last week for my first appointment, we had the privilege of meeting Erin and Milo Wilson, the parents of lovely Daylia and Hazyl and sweet baby Josiah. Josiah was born May 20th at MUSC with Hypoplastic Left Heart Syndrome (HLHS), the same heart defect Chase was diagnosed with at 20 weeks. Josiah has had a rough journey, his diagnosis more complex than Chase's since he was born with an intact atrial septum. It's been a difficult road for this little guy, but his wonderful parents and the amazing staff at MUSC have been with him every step of the way!

Erin and Milo were informed a few weeks ago that little Josiah would need to stay at MUSC through his second HLHS heart surgery, usually performed around 6 months. Can you imagine balancing some form of a family life with two precious girls and a baby in the hospital while temporarily living in a city that is not your hometown? It's overwhelming to me just to think about it, but Erin and Milo are leaning on the Lord during this time and He is getting them through it!

On Friday, Josiah had a heart cath to determine his readiness for the second HLHS surgery. The results indicated he's not ready for the second surgery, rather, he'll need another open-heart surgery to repair his left pulmonary artery. This surgery has been scheduled for tomorrow.

Please keep sweet Josiah in your prayers, especially tomorrow as he undergoes another open-heart surgery. This little guy is so precious, and his parents are without a doubt two of the nicest people on the planet! They have a real love and passion for serving the Lord and my hope and prayer is that God will heal this beautiful baby boy!

For more information on baby Josiah, check out his blog here. And please keep him in your prayers tomorrow!

Isn't he a cutie??

Monday, September 7, 2009


I purchased my first Apple computer, a MacBook, in May 2007 and have loved every single day with it. I was a bit apprehensive at first to make the big switch from a PC to Mac, but it truly was the easiest adjustment and by far the best decision I've made technology-wise in my life! I'm not a crazed Apple lunatic, though... just want to make that clear. However, I have been pining for an iPhone pretty much since day 1 when they first appeared on the market. Unfortunately, we've been unhappily-loyal Verizon customers for years although I have hopelessly tried to convince hubs to ditch Verizon for our friends at AT&T so I can enjoy the pleasure of owning an iPhone. Up until yesterday, it was a tough battle with a very bleak outcome.

Recently I discovered that we are eligible for a butt-kickin' discount on AT&T service through hubs' employer. Whaa? Seriously?! The ironic part is that we also have a discount on our Verizon service through his employer, which we've been taking advantage of for years! So I was quite excited and pleased to find out that this same discount is available to us at AT&T. So I did a comparison -- apples to apples (no pun intended) and get this! It turns out a new contract with AT&T (including an iPhone for yours truly) will actually cost LESS than our current contract with Verizon. Where has this information been all my life?!?!

SO... I am now more than overjoyed to say that I am now the proud owner of my very own iPhone 3GS! Yep! We finally did it! I shall forever remember Friday, September 4th as the day I finally purchased an iPhone. The past few days have been ahhhmazing, to say the least! It's ridiculous how EASY everything is with this thing! Texting, pictures, web browsing, emailing, you name it, it's easier with an iPhone. My poor darling hubs has to suffer with a Sony Ericsson slider phone, and you should see how long texting takes on that bad boy. I hope for his sake that practice makes perfect!

But in the meantime, I'm enjoying every second of my new iPhone ownership! Woot!!!

Sunday, September 6, 2009

The Little Things

These days, it doesn't take much to make hubs and I happy. We know we have a whirlwind of activity that is just over the horizon, so honestly, we find joy in the simplest of things. Case in point: hubs replaced the headlights on our Jeep. And we are both in love with the results. Isn't that crazy? It seems so insignificant, but to us, it made such a world of difference to our beloved vehicle. I still don't understand why they got so weird and foggy-looking, and even though hubs attempted to "fix" them (it didn't work), purchasing new ones seemed to do the trick.

Earlier this summer, the engine blew at just over 100,000 miles. This was not expected and resulted in dropping about $5,200 on a new one. We've had both front window regulators die on us, which basically means the windows would go down, but not up. So hubs replaced them. Let's see... I think there's been a tire purchase, a brake job and something relating to the transmission over the past year or so, too. So basically, we've more or less "purchased" a "new" car, which we plan to keep for all eternity!

So here's a visual of hubs latest project. And if you see him, ask him about how much he saved on these bad boys! The genuine Jeep headlights would've been over $300 -- he got these from an after market retailer on eBay for less than $100! Woot!



Wednesday, September 2, 2009

First Appointment at MUSC

Well, we're back safe and sound from our trip to Charleston for my first appointment at MUSC. Overall it was a great day and we met some wonderful people! The staff at MUSC truly was amazing -- very nice, knowledgeable and informative! All of them took the time to provide us with the information we needed and answer all of our questions.

Our trip started Monday night when we went to view FOUR rental properties. It was a L-O-N-G evening but I'm happy to say LO behaved the entire time -- for the most part! Three of the four were 2BR properties within a 3 block radius of MUSC. The location was great, but the size was way too small for our needs. The fourth and final property we looked at was a house in a residential neighborhood about 10 minutes from MUSC. While we don't care for the distance, we think it's doable and ultimately would give LO the most comfort and familiarity with her usual routine. The house essentially has 4 bedrooms, 2.5 baths and a lovely yard where LO can play. I must admit I loved the granite counter tops and stainless steel appliances in the kitchen, although I can't imagine I'll be spending too much time in there. We're very happy to have finally made a decision on this so we can move forward with the rest of our planning and decisions for our time at MUSC. Hurray for progress!

Unfortunately, Monday night at the hotel turned into a bit of a nightmare. LO was apparently in NO MOOD to sleep. At all. Like, all night long. She was in her pack n' play in the room with us, and for whatever reason, refused to go to sleep. We ended up putting an Elmo DVD in around 3AM, which kept her attention for a short period. Then it was more fussing and whining. Then we did the unthinkable: we put her in our bed with us. This was the FIRST TIME we've EVER had her (attempting to) sleep in our bed. We just never wanted her to get into that habit. But we were desperate. We needed to get up at 6:30 AM so we could be at MUSC for my 8AM appointment, so sleep was so desired, but yet never attainable. Hubs ended up going into the other room and firing up his laptop around 5AM to get some work done, while I continued to try to get LO to get at least a tiny nap in before our marathon day at MUSC. Finally, around 5:30 AM, she fell asleep next to me in bed, and managed to get a good hour and a half nap. It wasn't much, but it was better than nothing. I think between the three of us, we probably had a combined 4 hours of sleep that night. NOT awesome.

Tuesday morning we were up and on our way to MUSC, and managed to make it to our 8AM appointment on time! Woot! The staff was super nice and the PC (Pediatric Cardiologist) we met with after my ultrasound/echo was extremely kind and informative. He explained everything to us in detail, which was a huge blessing. He explained that the echo definitely showed the HLHS diagnosis, and that there really weren't any unexpected surprises. He said that Chase isn't exactly a "textbook" case because there are 2 things the echo showed that aren't common in HLHS babies, but that at least one of them might actually work in our favor because it is allowing his aorta to grow larger than what they typically see. The other issue he wasn't 100% sure about but said the echo they do after he's born should be clear enough to determine exactly what's going on. This issue slightly adds to the complexity of his surgery, but it isn't a huge deal or anything that changes the overall game plan for his surgeries, etc. We were very pleased with what we heard and with the answers to our questions.

I then had the joy and privilege (please sense sarcasm here) of having an OB appointment with the "Prenatal Wellness" department. It was a few blocks from MUSC, so we had a nice walk over there. Seriously, once we got in there I felt like we were at a free clinic. It was weird. The waiting area was full of some unusual characters! But the staff was really nice and I was very pleased with the ultrasound tech. She got some GREAT pictures of Chase:

Here's one of his profile. Isn't he a cutie?

Here's a 4D image of his face. The cord was floating around over his right shoulder, and I think he had an arm up by his head, too. He definitely has mommy's pouty-face down pat (as does his big sister!).

After the OB appointment, we headed back to MUSC for a tour of the PCICU. It was incredible to see the area where our precious son will spend the first few weeks of his life. It really was a wonderful facility and I am confident my baby will be in the best care at MUSC. Such an encouragement!

We ended our day on a fabulous note -- we got to have lunch with Erin and Milo Wilson, whose sweet baby Josiah is currently recovering in the PCICU from his first HLHS surgery. This wonderful family lives in the same area as us, and have been at MUSC since May when Josiah was born. If you have time, you need to read her blog. She is a great writer and has shared a lot of insight into her family's journey with HLHS. Hubs and I had such an amazing time with her and Milo -- it truly felt like we were catching up with old friends! They were very easy to talk to and are such a wonderful resource for us since they've "been there, done that" and can give us some insight into what we can expect going forward. It was such a blessing to meet them!

So, on a final note, I will mention that it sounds as though my induction will be scheduled for Monday, October 26th. I'll check into MUSC Sunday evening, October 25th to get the ball rolling, but the induction won't officially begin until Monday morning. So hopefully, God-willing, at some point on October 26th, hubs and I will be the proud parents of our sweet baby Chase! Please keep us in your thoughts and prayers as we continue to make the necessary arrangements for our stay in Charleston, and for peace and strength as we travel this uncertain journey that lies ahead. We are confident God is in control and will see us through!