Other than that my blood pressure was a little high (140/90) pre-hypertension stage. and my heart rate was up again, but that is probably because I haven't been sleeping very well and staying stressed. Sleep deprivation will do that to you. I have recently bought an e-book copy of Hypoplastic Left Heart Syndrome: A Handbook for Parents. I am trying to get through it before our specialist appointment April 17th, so I know what to ask and am a little more informed on all of this. It's been so overwhelming. Other than that I'm keeping busy with trying to get my current classes finished up and then come May I'll be taking off from school for a little while since I wont be able to complete my in-business 16 week practicum that's required for graduation. When May gets here we'll have about 3 months left before his arrival if he stays in until 39 weeks like hoped for and I'll be preparing for our long hospital stay down in Atlanta. That's all the updates I have for now. It will probably be a few weeks before my next post.
I've not updated in a few days. I had my appointment Friday and we were in and out pretty quick. Dr.Anderson said it looks like I'll only see him until I'm 30 weeks, so 2 more times and then should start seeing an OB down in Atlanta, or something along those lines. I'll know more about what's going to happen with baby, appts, and doctors after we see the specialists and get down to Emory to meet with the doctors down there.
Other than that my blood pressure was a little high (140/90) pre-hypertension stage. and my heart rate was up again, but that is probably because I haven't been sleeping very well and staying stressed. Sleep deprivation will do that to you. I have recently bought an e-book copy of Hypoplastic Left Heart Syndrome: A Handbook for Parents. I am trying to get through it before our specialist appointment April 17th, so I know what to ask and am a little more informed on all of this. It's been so overwhelming. Other than that I'm keeping busy with trying to get my current classes finished up and then come May I'll be taking off from school for a little while since I wont be able to complete my in-business 16 week practicum that's required for graduation. When May gets here we'll have about 3 months left before his arrival if he stays in until 39 weeks like hoped for and I'll be preparing for our long hospital stay down in Atlanta. That's all the updates I have for now. It will probably be a few weeks before my next post.
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Baby brother FINALLY has a name! After a LONG time of pouring over names (and after his diagnosis with HLHS...meanings) we have decided on Andrew Garrett Rhodes. Andrew means "courageous, strong, brave" and Garrett means "brave warrior". We know he's going to get here a fighter because he's right on track with growth everywhere else, his tummy actually measures almost 2 weeks ahead of schedule and the U/S tech at the specialist said "he's eating good!". He's is probably one of my more active pregnancies and it is so precious to watch him play during the ultrasounds. We know he's going to be very strong and a fighter just like the other men in our family. If he has half the stubbornness his daddy and poppy have then I should have no worries. ;) We also got word that our little man was going to be put on a radio show this weekend and prayed for there. (107.5 anytime between 3-7PM) He was also added to several other church prayer lists too that I didn't know about. So cool for everyone to be praying for our little iron man. SO many people are praying. The lender we talked to before about buying a house, the car salesman and manager and business office lady at Carmax, our Ultrasound tech with Cloud nine, and too many more to name! Thank you all! This was the picture I chose to announce our pregnancy on Facebook. Who knew that we would literally have a "bump in the road" ahead of us with our sweet little boy. After the initial two visits we had and learned the news of his Hypoplastic Left Heart Syndrome diagnosis, we were probably not the two most grateful people that you would want to run into...We were upset and we didn't understand why something had to be wrong with our little boy. Then...as I prayed and was at the end of my line (because there is physically nothing I can do for him once he gets here) I put it 200% into God's hands. Since then I've noticed blessings all around us, helping us to prepare for our son's arrival. God has placed people in our lives that we didn't even know that's comforted us more than they could imagine, and he's brought old friends and others we only briefly met into our lives again, including a pastor at the church we visited several months ago...I think any parent that goes though something so serious as this with their child they feel completely helpless and need to hear reassurances where they can (which we've been blessed to have them all around us in just the first week of knowing). More specifically, I want to talk about the day that God blessed us with one of our bigger stresses that we've had hanging over us since December this past year...our Escape...we have 3 children already and had little brother on the way and the Escape we had just wasn't working and wasn't going to work for our needs with baby brother coming. We tried in December to trade it in through Carmax in Chattanooga and the lady that appraised it said it had transmission issues, scratches down the passenger side door (which was some sort of hard wax or plastic that streaked down the side that wouldn't come off. It actually looked like a huge white scratch down the side) other than that she said the back bumper needed to be removed and painted and soft buffed...just the amount of problems she said were adding up and knocking down trade in value tremendously. We were so bummed and went home and just had this dread that it was going to be $$$$ to fix. She said anywhere from a $50 fix to a $5000 dollar fix. NOT what we wanted to hear. Then come this past Thursday we had our specialist appointment and learned of baby boy's diagnosis and knew we would be traveling a lot to Atlanta. We knew we had to have a new vehicle asap and it was going to have to be reliable and have plenty of room for our family to get back and forth to his future surgeries, hospital and doctor visits etc. and began to pray. Immediately after we left the specialist we took the Escape to a good long time friend of my hubby's, Josh Moore, out at Hixson's Express oil change and dropped the car off to be worked on to fix EVERYTHING that popped up wrong with it (Which turned out that our warranty covered the 967 in parts and labor etc. and all we had to pay was $50..NOT $5000!). We left there and went to look at Carmax maybe one more time to see if we could find anything since we were having everything fixed and was going to try again on our trade-in with the Escape. We found a really nice van fully equipped with everything we knew we were going to need for our family and special needs son and was sold that day. We even went to other dealers and just couldn't get a deal like we could at this place. We knew that was where we were going to sit down and try again. We went Friday afternoon and picked up our Escape. Ice cold air blowing on us and the O2 sensor fixed (aka the transmission problems it was said to be having). We were ecstatic and highly recommend our buddy Josh Moore at the Express oil change in Hixson, Tn! Because of Josh we got to trade in our car the next day! As we entered the Carmax parking lot early Saturday morning we were nervous and holding our breath that God would still let the van we found be there. Literally as soon as we pulled into the lot the guy on J103 started talking about people needing to buy new cars and that they would find what they want at so and so place, and I got this calm over me that God knew we really needed this now and that we wouldn't be turned away with bad news this time, and leaving in that crappy Escape we had so many problems out of. Now was appraisal time, everything that she marked before took off tremendously from the trade in value. :/ Funny thing is, we took our car to have the "lava wash" done out at the big 3 minute drive through car washes the day before. I'm not sure what it was about that car wash but it melted that plastic/wax on the side to where it felt like a sticky sticker residue and I just washed it off real easy before we got there to have it appraised. So outwardly it had nothing wrong with it now like she said before. The guy took 20 minutes to appraise it and came back and said, well I can't find anything that she mentioned before. It drives fine (no transmission issues, Thanks Josh!) and the air worked perfectly (aka no more condenser issues!). He also said there was no outward scratches on the passenger side (that part that mysteriously FINALLY came off prior to the visit) and that the bumper didn't need any big paint job like she said. It bumped our trade in value 2,000 dollars! We were a lot more satisfied with this this time. We went out and went straight for our van that was still there! Told them that's the one we wanted to test drive and and when we got back we sat down with this nice younger guy that was going to be our salesman for this van. Oddly enough he was asking why we were interested in the van and we told him we were having our son soon and have three other children, but we would be traveling back and forth from Atlanta a lot with his condition and surgeries and he just stopped and looked at us and said, "You know, I've come to realize when you face such serious situations like that (because my family and myself did when my little brother died when I was little) that you just let go and let God". Sometimes it's hard to get through these situations, but God can get you through. That's what we've come to know and trust in." Of course I almost cried because what random person is going to take the time to tell you such personal religious beliefs like that in a professional business setting. You don't get that much anymore. Everyone at Carmax that we personally dealt with told us they were praying for us and our sweet boy. That's why we felt God wanted us to wait until now to get that particular van and to meet with these particular people. They really did put a calm over us because of both their unique situations too, which I'm getting to the business lady next. :) Finally we come to the closing part and had just one owner (Shaun) on the car and was literally almost done. Something bounced back and they wouldn't take his military pay as proof of income so we had to do a redo with me as a co-owner. It turns out it dropped our payments $50 dollars a month! We're then thinking...okay God now you're just showing off haha. The lady that completed the sales in the business office was wearing cross earrings and a Jesus fish ring on her hand. She sat down and was asking about my pregnancy and the van and we told her about the baby and his upcoming birth, surgeries and she told us...my brother was told he wouldn't make it because of a rare disease he has. She said it would stunt his growth and they were not very positive about his diagnosis either. She said to this day he is six foot 2 and weighed 259 pounds. So she reassured us that even our little boy who isn't given the best odds at birth, could make it too! We left in our brand new van and a blessed and happy heart. Even after all the bad news we had received prior about our son. God may bring us to a situation, and sometimes ones so serious that we don't understand why they have to even happen, but He will get you through it every step of the way...starting with our biggest stress since we found out we were expecting. I know God has my son's little heart in His hands and that He upholds my husband and myself and my family as we face what's to come. Even in the bad times and the things that didn't go the way we had hoped, look for God's blessings and His faithfulness in getting us through those dark situations. He's always there when you learn to trust him and put your faith in him, and actually look for Him. :) You just have to learn to take his blessings and reassurances as they come because if you're not careful you'll miss them. A positive attitude is everything in times like these! Well this was one of the most nerve racking days of our lives...We went in with REALLY high spirits and just knew everything was going to turn out just fine. We were so "okay" with it that we goofed off and were cutting jokes out in the lobby (which I think was now our way of trying to push aside the seriousness of this whole thing). I even got on to my husband for "acting a fool" in the lobby. I told him he was being "obnoxious" and he just laughed. As we waited for about an hour I think, many more pregnant worried faces were coming in and out of the office and the atmosphere was starting to change. I finally got called back to get weight and measurements and past medical history on myself. How many children I had previously and all their birth information. Again, I was fine. THEN the nurse asked...so why were you referred to us and seeing us today. Once I heard myself say that my son's heart may be too small on the left side I began to tear up and feel that nasty feeling welling up inside me again that I had been ignoring and pushing away. I went back out front afterwards to wait to go back with Shaun to have the in depth ultrasound done on little man's heart. Finally we get called back and my nerves are starting to get the best of me. My heart rate was almost 140 resting when I had it checked (good ole tachycardia of mine!) We were put in a private ultrasound room and a very nice younger ultrasound tech came in and got us started. As soon as she started the ultrasound we saw little man's feet...WAY up by his head. I think you can see it still in this picture some from his scan. :) We got to see little man's very first profile picture (flat nose just like daddy!) and he was wiggling and waving his arms and even yawning and playing yet again. Again, he had a very strong heart beat because she pointed that out. He had 10 fingers and 10 toes. Everything was right on target growth wise, and his little belly measured almost two weeks bigger, so she said he was "eating good"! Overall he looks "just right". Once the specialist had a chance to look at everything he came in and looked at his heart some more himself to make sure he was seeing right then broke the news that our little boy indeed had HLHS. He said 20 years ago this was a death sentence when diagnosed (which I thought was a little much to say) but now technology and doctor's have come so far that there are way better chances for survival after birth. He said he could live inside me forever and be perfectly fine, but once he got here on his own and is heart had to function and process the oxygen rich blood to the rest of his body (my placenta is delivering the oxygen rich blood to him right now) that his only chances for survival would be a series of three open heart surgeries, or a heart transplant.So yeah the seriousness hit us like a ton of bricks and Shaun and I fought back tears the rest of the time he talked to us. Towards the end he did look at me and say it was nothing that I've done or caused, so not to think it was my fault (which after we were referred I thought it was my fault, but hadn't said that to the specialist at all). He told us that we would have to go down to Emory in Atlanta to deliver (there or Grady) then he would have his surgery at Emory following very shortly after birth. After that he said chances would boost up to 70% for survival and then get better and better after each surgery. All three surgeries are done by 18 months of age. The first after birth, the second around 4-6 months of age and then the last around or before 18 months usually. We had to be set up to start seeing the specialist regularly with my OB and then meeting with the coordinator to get us in down at Emory and meet with the surgical team, the prenatal cardiologist, and getting a "plan". We left a little shaken, and quiet frankly terrified. I have no idea what is to come and what will happen with our son. I am just entrusting God to be with us and our son every step of the way. Well, I'm going to give this blog thing a shot... I am a full-time mommy and I am a full time student working towards my human services degree. I am in my senior year and was supposed to graduate this December, but school is going on hold for a little bit. As a future counselor, case worker, etc. I have learned that finding your "therapeutic outlet" is very important when experiencing something so serious and life changing as we are facing now with our son. I've always been a "writer" when I get upset about something, so I'm hoping this will help. Even if nobody reads it! haha! Other then praying and spending time with God (who constantly reassures us in some way) This is how I'm going to feel better... We are also getting plenty of outside support from our church/pastors, and family and friends. We have been so blessed. Even complete strangers are taking the time out to say a special prayer for our son. That means the world to me. **This is in no way a sympathy blog, but more of an HLHS awareness and stress/emotional outlet for me. If my mom were still here she would definitely agree that I've always written when upset. (Sometimes that got me in trouble when I was younger! hahaha) I am blown away by the amount of prayers and support we've gotten already for our little man. Please keep them coming! One month ago my husband and I were completely beside ourselves that we were getting our first little boy! As soon as I found out we went straight to buy a few things for his room and began the process of creating the perfect little room for daddy's future athlete. We went for our first appointment a little late in the pregnancy (14 weeks) and had the initial ultrasound to make sure the baby was growing right and had a healthy heart beat. All went well and well after three girls and we saw a shot between the legs real fast, our curiosity was high!
Two weeks later (16 weeks) we paid to have a gender ultrasound done at a local 4D clinic and got confirmation it was a boy! He was so active during this ultrasound. Opening and closing his mouth. Literally playing with the umbilical cord that was floating around him (almost looked like a cat grabbing at a string) and sucking his thumb. The U/S tech even commented on how strong his heart beat was. We left and had no idea 4 weeks down the road we would get news that he had a very serious/life threatening heart defect. The statistics are even 1 in 5,000 babies are born with this rare heart defect each year... At our 20 week OB appointment we went in smiling because we knew when the U/S tech at my doctor's office showed us our very active little jumping bean that we would already know it was a boy. Surely enough he was not shy in showing us that he still was indeed a boy! haha! We weren't scheduled for an U/S because they had worked me in for my appointment last minute. We got back there and she started the ultrasound of the detailed anatomy scan and as I watched a proud daddy smile at our little boy on the screen and pointing things out to our youngest, Courtney, I had a gut feeling something was wrong with his heart. (Not even making that up!) She kept zooming in and spending a lot of time on his little heart (which she commented was a very good strong heartbeat) but I had never had an U/S tech spend so much time looking at one of my babies hearts. I dismissed that feeling and thought I was just being paranoid. I have told Shaun this whole pregnancy that I was afraid something was wrong or going to happen to the baby. He always comforted me and said that I was just worried something was going to happen to our son, since it was our first boy out of all of our children we've had. We went back into the waiting room what seemed like forever and then finally got called back. I weighed and did all the usual appointment stuff then went back to the room to wait for the doctor. He came in and was fidgeting and flipping through a few of his ultrasound pictures then talked about some things with me (Making sure I was eating enough and all that)...then he told us that he had some worrisome concerns about the ultrasound today with the baby's heart. The mood in the room changed automatically and he began explaining that it looked like our son's heart was smaller on the left side and he was afraid he had hypoplastic left heart syndrome. He said he didn't look like he had any other syndromes or anything like that because he was growing perfectly (Except the heart). He didn't have any swelling on his body or brain and his heart beat was strong (which still confuses me!) He said he was referring us to the ROC in Chattanooga and he wanted us to gt in ASAP to help us get answers as well. We left furious at the U/S tech because she kind of rushed us through our U/S and automatically wanted to blame her for taking a "bad" picture. He had his arms crossed the whole time over his chest and would not move them. On the other hand he was very active (yet again) playing with his little fingers and swallowing/opening his mouth. In our mind nothing could be wrong since every thing else stacking up against him was positive. I left the doctor's office with a heavy heavy feeling. I made it to the car and just couldn't stop crying. Which made Shaun upset that we had to wait all weekend with me super stressed because I have a heart problem too. I was the last person on my mind though. All we could do was wait because the ROC was closed until Monday and then the quickest we got in was that next Thursday. A week of praying and worrying and crying...I hated that wait, but I needed to know if there was something wrong with my son...and now! I will never forget that feeling. It was the most helpless feeling I've ever had and I automatically thought it was my fault. I thought I had done or ate something, or got around something I wasn't supposed to and it caused my little boy not to grow right...which I learned from the specialist that following Thursday that it was far from what really happened. They don't really know what causes it. It just happens...so now we are waiting for our specialist appointment... |
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My name's Chasity Rhodes and I have been married to my husband Shaun for ten years now. We have three little girls and a very special little boy! We are your average goofy family who has always been huge on spending time together. We wouldn't have it any other way! Follow us through our journey with our son (who was diagnosed with HLHS). Archives
April 2016
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