ER Visit

Last night, Chris and I checked Sam's oxygen saturation (which we do routinely with our home oxymeter we were issued). It was MUCH lower than ever, and below the 'cut off' percentage our cardiologist had given...it was between 65 and 70 percent, where it has been between 77 and 80 percent. With 75 percent being the 'cut off'/red flag percentage, we were obviously in trouble. But Sam looked fine...he wasn't any more blue, he was breathing fine, he was eating good, and he was alert. We decided to check it again in the morning.

I checked it at 10 this morning and sure enough, it was still at 65 percent. Although he was having NO other symptoms of heart failure, I called the cardiologist. He sent us to the ER.

Once there, the staff got all his vitals. Magically, his oxygen saturation was reading HIGH...80-90 percent!! That's higher than it has been since we left the NICU!!! They examined him and listened to our story about last night and this morning. They called our cardiologist and together decided that he was stable enough to be sent home for now. The cardiologist set up a follow up echocardiogram on Monday to check for changes in his heart defects that may have caused the low oxygen numbers on the home unit.

Being told to head to the ER was scary. It will be the first of likely many such scares as we head toward the heart repair surgeries. Sam is fine though, and we will see how the echocardiogram goes on Monday!

~Kathy

Sam's First Christmas

Sam's first Christmas was very nice. We went to 10am mass and then made a really big breakfast. We opened gifts with my family. Sam got some super cute stuffed animals and clothes, among other things. My mom made a huge dinner to end the day. Sam won't remember a dang thing, but I will certainly always remember how wonderful and unexpected it was to have our first baby home and healthy and happy on Christmas. We know we have a rocky road ahead but it was such a gift to us to have him home for his first holiday.

~Kathy

Much Needed Update

Well it has been two weeks since Sam came home. I didn't realize how busy we have been with him until I realized I hadn't updated the web page in a while. So here is the scoop...

We actually didn't get to bring Sam home for an extra day after they told us we would. They wanted to be sure he was eating enough without it draining too much of his energy. We brought him home on a Tuesday (Dec 9). Our families had already gone home, so it was just Chris, myself, and Relo as a welcome home party.

Since then Sam has done quite well. He weighs 7lbs 13oz now, and is eating like a champ. He really doesn't cry or fuss unless he is hungry. Sleeping at night is still an issue. He doesn't exactly sleep at night. He will sleep for an hour and a half or two hours and then want food. Last night we did have a bit of a Christmas miracle...he slept for 6 hours straight!! I'm sure it won't happen again any time soon.

His current health status is another miracle. He still has all of his heart defects, but they are currently 'stable' and not causing any immediate concern. His oxygen levels stay steady at 77-80 percent. We have been educated on warning signs of heart failure...turning blue, decreased O2 levels, trouble breathing, decreased eating, decreased weight gain. Our understanding is that these will occur gradually (over weeks/months). As they start to happen, we will start to look more seriously at setting a date for the Glenn Surgery to begin the process of re-plumbing Sam's heart. For now, everything is as good as it can be, and we are just thankful to be HOME for Christmas, and not in a hospital. We are also so thankful to NOT need tube feedings, NOT need medications, NOT need supplemental oxygen...all these things may come in the future but we could not be more happy with these first few weeks of normalness!

My family (mom, dad, sister and brother) came up for Christmas and have had a blast spoiling Sam. He has barely been out of someones arms since they got here. I will update on Sam's first Christmas tomorrow!

Before I close this, I want to give a big THANK YOU to all of our neighbors who have been supporting us! We have received many dinners, goody baskets, and gifts during our first weeks home. They were greatly appreciated (and enjoyed)! They didn't have to do it, but they did and once again we are very thankful!

~Kathy and Chris

GREAT NEWS

Sam gets to come home tomorrow!!!

The cardiologist came by today while we were hanging out in the NICU. He said Sam's eating great with no signs of stress with feeding. He and the neonatologist agreed to take out his IV line, so no more connections to wires or lines! They said as long as we are comfortable we can take him home tomorrow with the understanding that we will be following up with the cardiologist very closely. I CAN'T WAIT UNTIL TOMORROW!!

~Kathy

Steady Improvements

I am home now. I got discharged today around noon. Sam's still hangin' in the NICU. And so far so good.

We have had some minor issues with communication delays between the cardiologist and us. The short story is that Sam's crazy heart condition is still appearing to be stable. There are signs that could point to the development of problems, but at the same time there are signs that any problems we have may be far off. Confusing, I know. The important thing to know for now is that they have pulled his arterial line out, and we have finally been able to feed him and hold him!! We had a blast tonight in the NICU...our nurse let us hold him for hours.

The current plan is to pull his venous line out (hopefully tomorrow) and then move him to the 'progressive' side of the NICU...from there we observe for a few more days and then head home with him. He will still eventually need surgery. Even when he comes home he will need constant observation for signs of heart failure. That's okay with us...we just want him home!

Oh...AND that kidney problem that they identified about a month ago has COMPLETELY RESOLVED!! Ahhh...one less thing to worry about...

As soon as he moves to the progressive NICU I'll update again! Thanks for all the prayers and positive thoughts! Keep them coming!!

~Kathy

SURPRISE!! SAM'S HERE!!

SO I was at work on Tuesday. Around 3 o'clock, while dealing with a particularly grumpy old man patient of mine, I suddenly got this curious feeling...of my water breaking! I called the OB and they wanted me to leave work and rest for a few hours and call back. I still had a slow water leak around 6 and they sent us on to the hospital.

We went to 'OB Assessment' in the hospital and they confirmed my water had broke, and that I was one centimeter dilated. I had no pain or contractions until that point. They decided to admit us and go ahead and start a Pitocin drip to speed up the process, since it is important to deliver ASAP after your water breaks. That Pitocin sucks. I didn't make it too long before I needed the epidural. And thank GOD for epidurals. Pitocin started at 10 pm, epidural started around 2am, and by 8am we were fully dilated. I pushed for 25 minutes and he was here! Once again, thank GOD for epidurals. Of course, my epidural ran out of juice literally minutes before we started pushing but there was enough good stuff left to get me through it all.

Chris was a trooper...didn't pass out or throw up or anything! He got some great photos in the room. Sam weighs 7lbs, 2oz and is 21 inches long. They took him almost immediately to the NICU so the doctors could assess his heart. It took most of the day, but the outcome of this initial assessment is nothing but good news.

As of right now, Sam is doing much better than expected. His vital signs are normal and he is keeping a great O2 saturation (which is really the most important vital sign in his case). His first Echocardiogram showed that his condition is actually not quite as bad as expected...they called it a 'stable defect.' After consulting with the doctors in Atlanta, it was decided that Sam would not need to be rushed to Atlanta after all!

Even better than that, they think his defect is stable enough to warrant us being able to skip the first of the three surgeries!! They are going to keep him here for observation for about a week, and then we can take him home! We will monitor him from there, and he will go in for his first surgery (which is technically the second in the original series of three) sometime between 3 and 6 months. We are playing a wait and see game, but so far so good.

We had him baptized today in the NICU since his future is still bound to be bumpy. The pastor from our church came to the hospital, and they allowed me, Chris, the pastor, my mom and dad, and Chris's mom all in the NICU at once (they only usually allow two at a time). We did the baptism with all the nurses standing behind us watching and smiling. I feel bad that his baptism wardrobe consisted of a hospital grade knit cap, a diaper, and an assortment of tubes and wires, but it was actually very touching and reassuring to have the baptism out of the way.

Chris hasn't gotten to hold Sam yet, and I only got to hold him for a few brief seconds before they rushed him to the NICU. We are on our way to tell him goodnight in the NICU right now, and hopefully they will let us hold him a bit tonight. Keep your fingers crossed! I will update as I can!

~Kathy

Nothing New...

We went to the OB today for our weekly appointment and non-stress test. Nothing new to report. Baby seems healthy and happy according to the non-stress test. We did discuss my 'birth plan.' Apparently there are some people who know exactly how they want to deliver...even down to what drugs they do and do not want to use. I told our OB that at this point, delivery is really secondary to us. What is much more important is getting Sam to Atlanta for heart treatment. I told her I don't care what drugs go in or what procedures they need to do, the most important thing to us is getting Sam out and to Atlanta. I think she was happy with that to some respect...I know I would totally roll my eyes if some woman came in with a typed up, contract-like birth plan when what is really important is not the mother's experience, but the healthy birth of a baby.

~Kathy

NO LSU???!!!

So we went to my OB today to discuss the cardiologist and perinatologist appointment results and how they will affect the rest of the pregnancy. There was good news and bad news.

The bad news...she won't let me travel to Baton Rouge this weekend for the LSU game. What a let down. I've been excited about this game for MONTHS. This will be the first season in 8 years that I will not get to attend a game in the stadium. Sigh.

The good news...we will be scheduled for an induction by the 39th week. So we will get to meet Sam a few days sooner that due date...unless he decided to come on his own earlier than that. I am going to try to work through December 12. December 13 (Saturday) is the beginning of the 39th week and if it were up to me we would schedule for that day. She wants to wait a few more weeks before we break out a schedule book though. Regardless, we will schedule induction for midnight...that gives us the best chance of delivering a baby during daylight hours (which is when the cardiologist will answer his phone...he's rich enough to be able to turn it off without consequence at night). The OB also confirmed that as soon as Sam is born, he will head straight to the NICU until he is transfered to Atlanta. So at least we can prepare for that.

No more appointments with the Cardiologist until after the baby is born (he will come see him in the NICU). No more appointments with the Perinatologist EVER. For now, we keep the weekly OB appointments with weekly non-stress tests to be sure everything is in check.

~Kathy

ANOTHER New Diagnosis

We went to our perinatologist today...you know, the guy who's a total jerk. Well we did our ultrasound with the super nice US tech and then waited on the MD. He came in and said that the baby's growth looks good, fluid levels look good, heart looks the same, aaaaaaaand by the way there's a problem with the kidneys. Now, we had a feeling something was wrong last time with the kidneys (if you recall), but at the time it apparently wasn't necessarily a big problem. Unfortunately now it is notably an issue.

What we have now on top of the heart stuff is Hydronephrosis. Basically, the kidneys are retaining fluid. It is apparently totally random (unrelated to either genetics or the heart condition), and it is also rare to have it both kidneys as we do. We just love rackin' up the rareness with this baby. For now, it just has to be monitored. There is potential it will clear up on its own, and there is potential it will need surgical intervention to avoid renal failure. This is a decision that will be made after he is born and growing...so the heart is still our primary concern.

Other than that, the baby weights 5lbs 7oz and has an estimated due date of Dec 15 based on the measurements taken today. Dec 20 is still our official due date per the OB but I'm leaning on Dec 15 as a more likely date. We see the OB tomorrow and we will get to discuss what we learned from the Cardiologist and the Perinatologist since our last meeting, and we'll see what she thinks about induction or natural labor.

~Kathy

Diagnosis Tweak

We went to the Fetal Cardiologist today. He did another echocardiogram to confirm the diagnosis of Tricuspid Hypoplasia with Hypoplastic Right Heart Syndrome, Pulmonary Hypoplasia, and Ventricular Spetal Defect. Sam's heart has gotten bigger as he has gotten bigger, but the tricuspid valve, right ventricle, and pulmonary artery have not. Our new diagnosis is officially Tricuspid Atresia with Hypoplastic Right Heart Syndrome, Pulmonary Atresia, and Ventricular Septal Defect. It actually doesn't change anything....either way we would be facing the same surgeries.

The doctor pretty much said he would like me to induce but is going to leave it up to me and the OB to decide. He said what he would really rather is that I deliver during the day time, not in the middle of the night when it is hard to reach specialists both here in Macon and in Atlanta. But since that is not a guarantee even if you induce, he is going to leave it up to the OB I suppose.

I did ask him about long term prognosis and outcomes of the three surgeries we will have. Long story short, Sam has about a 75% chance of surviving each of the surgeries individually, and about a 75% chance of making it to the 5 year mark after the last surgery (so that would put him at age 7-9). Outside of that age, there is really no reliable outcome measure. It sucks to start off life with such a prognosis, but I guess there are worse situations we could be in. We have no choice but to take it one day at a time.

We see the Perinatologist on Tuesday and the OB on Wednesday. Hopefully we will have a final decision on whether or not we are inducing by the end of all of that.

~Kathy

Showers and Such

It has been a bit since I added to the blog...not much has happened. We started our weekly non-stress testing. It's just a 30 minute heart rate and contraction monitor. So far so good. We are really looking forward to Friday...that is our next Cardiologist appointment.

We drove to Mobile this past weekend for two Baby Showers. One was thrown by my Mom and my friend from PT school, Melanie. It was really fun for me, since the people in attendance were people I have known from all stages of my life (grade school through the present). And two of my friends brought their two precious baby girls which is always highly entertaining! The second was a Wimberly Family Baby Shower. Much like the Wimberly Family Wedding Shower, I didn't know the majority of the people there!! I feel guilty for that, but their family is HUGE! I love that even though most of the people also don't know me, they still love and support their relatives, and sent me away with plenty of goodies to help with the newest member of their ridiculously large family.

Between the two showers we got just about everything we need to bring home a baby! Tons of clothes, car seat, stroller, swing, pack n play, towels, toys, bath stuff...we really are set now. Chris and I spent all night tonight putting things together, pulling off tags, and hanging clothes! We went from having nothing to having so much...we are both so so thankful!

~Kathy

Eh...

We went to our OB this past Wednesday. Keep in mind we actually have 4 OBs. It is four women who work in the same practice, and any one of them could deliver me (now that we know we will be delivering here). Because of this, we see any random one of the four at our appointments. Well this time we met one of the OBs we had not met before. She was SUPER nice and spent a ton of time just getting to know us and our situation.

I had gotten a little over excited about asking her when we could induce, since we now know we will be in Macon for the delivery. And naturally, that excitement was shot down. She said she had not received any notification that we would need an induction. She still hadn't received the cardiologist report though, and had not received a number of test results and reports from the perinatologist. She seemed a little angry at that, and she promised us she would get all of those missing pieces together for us. Being part of the medical community, I definitely understand that when too many doctors get involved, communication tends to break down. That is not an excuse...it's just what happens. As a patient you have to be an advocate for your own health care and be vocal about making the doctors pull all of the pieces together.

ANYWAY, according to her, she didn't think we needed to induce unless it was the expressed desire of the cardiologist or perinatologist. I hate that, but only because it essentially ensures that we will be in the Atlanta hospital over Christmas since we won't be able to have him early to avoid that scenario. She said we would wait on reports after our next cardiologist and perinatologist appointments to decide on induction. She also said that after our next regular appointment (at 32 weeks), we would be coming in once a week for non-stress tests. This is something they do with all high risk pregnancies. It is apparently just a 20-30 minute monitoring of the heart rate and movement of the baby. So, starting October 29, we will be in some doctors office at LEAST once a week...should help make the end of the pregnancy go by pretty quick!

Quick story about working while pregnant... I'm starting to show pretty bad now. I got a new patient this week who is a truly spoiled and rude old lady. She has some spinal cord damage and can't stand up or walk by herself. I was helping her move from her wheelchair to a mat table for therapy. She stood up nice and calm, but when I asked her to take a step she started to lose her balance. I was already holding on to her, but I asked her to hold on to my arms (just to steady herself and make her feel like she was more stable). She completely freaked out and started yelling "I can't I can't, I'll hurt your baby!!" Needless to say, she panicked and essentially allowed her knees to buckle so she landed back in her wheelchair...giving my back a good pull and most certainly hurting me much more than if she had just grabbed my arms like I had asked! I was fine, but it gave me some sad insight into how patients are going to view me and trust me as this baby starts stickin' out a little more!

~Kathy

More Photos of the Nursery!

I have been playing with an online photo program called Microsoft Photosynth. Its really neat. It morphs all your pictures to make one big interactive "picture wall". I've uploaded new photos of the nursery into photosynth. If you want to take a gander, go here:

http://photosynth.net/userprofilepage.aspx?user=Chris_Wimberly

But wait, there's a catch! It requires a quick download of the photosynth software to be able to view it. Once you get it up and running, it may take some time to get used to the controls, as they are kind of hokey. But once you get it down its a cool experience. Check it out!

~Chris

Cardiologist and Perinatologist Appointment Outcomes

We FINALLY made it to the day of our fetal cardiologist and second perinatologist appointments!!

We LOVE our cardiologist. He was so very personable and very upfront, but supportive! He and his nurse performed a fetal echocardogram, which is just an ultrasound that looks specifically at the babies heart. They were able to give us more detail into our condition. Sam has a Hypoplastic Tricuspid Valve (smaller than normal valve) which has cause the under development of both the associated right ventricle (hence the Hypoplastic Right Heart Syndrome) and the associated Pulmonary Artery. Although we HAVE a Tricuspid, a right ventricle, and a Pulmonary Artery (which some babies with this condition do NOT have), we still don't have enough there to function at a capacity which will support life without surgical intervention. As expected, we will undergo three open heart procedures before the age of 2. The first, a Blalock-Taussig Shunt (BT shunt) will occur immediately after birth, as soon as a bed is available in the Sibley Heart Center at the Children's Hospital of Georgia. The doctor also found a Ventricular Septal Defect, which is a hole between the right and left ventricles. There is a chance that this will close on its own, but regardless, the combination of our other conditions and related surgeries make it negligible that there is a hole in the heart (so it is a condition that we don't have to worry about).

The best news to us was that we apparently won't have to DELIVER in Atlanta. We will be able to deliver here in Macon (it will still be an early induction) and when a bed becomes available at the Sibley Heart Center in Atlanta, they will transport us up there (which will happen within a few days of birth). According to our cardiologist we will have been delivered, transported, had the BT Shunt surgery, and be back home in Macon with baby in hand all within two weeks of birth. SUCH good news. Of course, he did have to tell us that there is no guarantee...but this would be a best case scenario to pray for!

After that appointment, we headed over to our perinatologist (who we already know is a jerk based on our first encounter). His tech did a full ultrasound, again looking for any anatomical abnormalities. She told us we wouldn't see the perinatologist unless she saw a major problem. That kind of made me mad....I had questions for him....if I can show up for an appointment for him, I kind of expect him to show up for an appointment with me. Oh well. ANYWAY, she didn't SAY she saw any problems, but it appeared there may be a slight issue with the tubes that lead from the kidney to the bladder (the left tube was markedly smaller than the right). She made a note of the issue on her computer, but failed to include us in on the problem. We can only assume that if it is a big deal, they will call us. Jerks.

She did provide us with a few fun facts. For instance, I have a big baby in me. At our gestational age (28 weeks and 6 days) he should be close to 2.5lbs. He is, however, 3.2 lbs. Also, all of the measurements she took averaged out to an expected due date of December 13......7 days before our original expected due date of Dec 20. Chris was over 9 lbs when he was born on his due date...dear lord I hope we are not headed for that.

So where do we stand now? Well, we still have the same heart defect with a little added bonus defect. We will induce in Macon, transfer to Children's Hospital of Atlanta, have the first of three heart surgeries (BT Shunt), and hopefully be home for Christmas (assuming we induce early and it only takes two weeks to complete the surgery). We have a follow up fetal echocardiogram with our cardiologist on Nov 7, and a follow up ultrasound with our perinatologists on Nov 10. Hopefully I can start getting a better grasp on induction date approximation at my next OB visit on Wednesday. All in all, there's no bad news so we will accept that happily.

The photos are from the perinatologist visit. She turned on the 3-D view for us to see the face. The chin and neck look like one big unit, but we like the first one where the baby seems to be smiling. He wouldn't move his hand out of the way of his face so we didn't get a super great view. The third photo, however, seems to look like Chris. Actually I think it looks a lot like Chris's sisters son (Ben). Enjoy! And thanks for all of the prayers and support....I don't have a clue how anyone could survive without the kind of love and help we have received from our friends and family!

~Kathy

Spasms?

About two weeks ago I thought I was getting kicked in the side, as I usually do, from Sam. But something was different. It was a lighter feeling kick, and it was really rhythmic. The next day I felt it again, in the exact same spot. So I decided I was having some kind of muscle spasm, like when your eye lid spasms and you get the little twitches. I even checked to see if it could be my own pulse I was feeling, but the little twitches didn't match my pulse rate. THEN I started feeling it in different locations, and over the course of the last week I went from feeling it once a day to feeling it 3-4 times a day. I kind of got worried the baby was having seizures, but once again, the 'twitch' I was feeling had a really regular beat to it. It was only last night when I realized what it is.......HICCUPS! I can actually feel Sam hiccuping! It is extremely hilarious for about 5 minutes, then it gets annoying. But all of the web sites I have looked at say it is a good sign that the lungs are developing normally, so we will definitely take that kind of good news any day!

~Kathy

Nursery!!

Chris and I (although it was mostly Chris) worked hard on the nursery this weekend and we got all the painting done and the crib and changer put together! The bedding theme is 'puppies' and we used colors from the quilt to pick the colors we used in the room. I made two quick canvas paintings based on scenes from the quilt, and those paintings as well as the letters spelling "Samuel" will be hung above the crib. The maroon cove will be either the changer area or a book shelf area...we haven't decided. More photos to come as we decorate more! My next regular OB appointment is Wednesday to test for Gestational Diabetes...hopefully we won't have that issue!

~Kathy

A Heads-up

I got to speak with the Moore family this past weekend. I was given their name and number through a mutual friend. Their first daughter was born with the exact diagnosis as us over 18 months ago. She was able to give us a heads-up about some really important things that I thought I would share!

This family comes from Mobile, but they too were scheduled for delivery in Atlanta. They delivered at a nearby hospital and then the baby was transported to the Sibley Heart Center at Children's Hospital of Atlanta as soon as a bed became available. She gave me the names of her doctors (whom she recommends highly) so that when we have to start setting up our MD appointments up there, we will be with good people. Their baby was scheduled for the first of the three Hypoplastic Right Heart Syndrome surgeries on day seven of life. She had the surgery and came through it fine, which is comforting news for us. UNFORTUNATELY for them, they discovered their baby had an additional defect which went undetected until the first surgery, and she required a heart transplant. Thankfully, they did receive the transplant and their baby girl is happy and healthy today!

Assuming we don't have a heart transplant, our first weeks will go much like theirs. We will schedule a delivery in Atlanta, and be transported to the Sibley Heart Center ASAP. The first surgery (called a BT Shunt) will take place within the first 7-14 days of life. The Moore's were able to fill us in on some details we did not know about. For instance, Chris and I will be allowed to stay at the Ronald McDonald House next to Children's Hospital, which will be an extreme help financially. They were also able to give us a warning about the types of medicine and medical equipment we will likely be sent home with. For instance, most of these babies don't get to practice 'eating'...they lose the suck/swallow reflex that all babies are born with. So we will likely be sent home on a feeding tube that will last until the baby can pass a swallow study (to be sure he isn't aspirating his food into his lungs). Also, these babies have long term eating problems, as far as absorption of nutrients. The Moore's daughter is 18 months old and doesn't weigh more than 20lbs. Development isn't a problem, it's just size.

I didn't think I was too affected by the 'scary' details she gave us. BUT that night I had a ridiculous dream! I dreamt that by the time we were allowed to take our baby home from the hospital he was 2 years old, and didn't really recognize me as his Mom as opposed to just being one of the nurses and MDs. Then, in my dream, when I had been given the OK to breast feed, I couldn't because we kept getting interrupted or kept having MD appointments. I thought the whole thing was comical at first but I realized that it came from a true fear of missing out on all of the normal things that most other people get to do during their first days with their baby. Trust me though, if I have to bring home a two year old who doesn't know me from anyone else and who eats on a feeding tube for the rest of his life, I would rather do that than not bring him home!

I truly appreciate the help the Moore's gave us, and plan on keeping up with them for more advice as we get closer to planning the big day (which seems like years from now).

~Kathy

The Belly

Chris is so proud of my belly...I, personally, am in shock. We watched the baby kick last night. And I do mean watched...he made the whole thing shake and move!

On another note, we were given the name of a family who we actually went to high school with who still live in mobile. It turns out their daughter was diagnosed with the same heart condition and they too delivered and went through surgeries in Atlanta! I plan on calling her this weekend to get their full story and to get recommendations for doctors at the Children's Hospital of Atlanta. I think we're super lucky to have access to a family so close to home we went through the same issues as us! And they currently have a happy healthy year and a half old baby girl which is probably the best news to us!

~Kathy

The Nursery Begins

We decided to use our smaller upstairs room as the nursery. It is perfect baby room size. Only problem was it was originally painted dark chocolate brown by the people who built the house. It will definitely need three coats of primer. Too bad for Chris that the primer has big warning labels for pregnant women all over the front of the can! I braved the fumes for a few minutes to take some photos of his handy work though. Notice the look of total love and devotion he has in that second photo!

~Kathy

A Name...

Chris and I have pretty much decided on a name. Chris really wanted the first name and I really wanted ANYTHING else. But I gave into him and in exchange I got to pick the middle name and I get to decorate the nursery! So the most likely baby name is:

Samuel Conor Wimberly (Sam for short)

It's growing on us.

~Kathy

Amnio Results

I called and got our Amniocentesis results today...they are NORMAL!! Amnios look for any genetic and chromosomal problems with the baby. The MD wanted one done because heart conditions are apparently related to genetic problems. Thankfully for us, we have a totally NORMAL baby with a heart condition. That means we get to concentrate on this heart and fixing it and not worry about any other problems that could have existed. Good news for sure.

~Kathy

More Waiting

We finally received the appointment schedule for the fetal cardiologist. We will see him OCTOBER 3!! That is forever away!! We see the high risk doctor again right after the cardiologist appointment. We saw our regular OB this morning and had our usual 5 minute appointment to check the heart rate and check my BP and weight. His heart rate was 150 which is great...my weight, however, was RIDICULOUS.

So we continue our wait to hear more news on what we face in December. Until then, I do have an uplifting story to share. On Thursday, the day after we found out about the heart defect, Chris and I both received a 'sign'...if you believe in those sort of things.

I went to work, and was struggling with my new patient. He had a stroke that knocked out his cognitive abilities...I mean this guy takes his clothes off, has to be restrained to the bed, grabs at non existent objects...it's bad. He also had hardly spoken since being admitted. After an hour of struggling to get him to do ANYTHING in physical therapy, he turned to me and said "Sometimes God just gives you things and you just have to deal with it." I about fell off my chair.

Chris told me later that he woke up that morning and turned on the TV. The channel was already on CNN, and the story in progress was of Olympic gold metal swimmer Rebecca Soni. She had broken the world record for the 200 meter back stroke and won gold. The part of the story that meant the most to him was that she had done this after just having open heart surgery two years ago.

We know that we have a long way to go, and that many sad days may be ahead of us, but we also know that God doesn't give us more than we can handle. We are keeping the faith, and falling in love with our little special delivery...who kicks his mother constantly!

Bad News

We went to the perinatal specialist today. He specializes in general high risk pregnancies. His ultrasound tech did a great job with the US and got us some great profile shots and spent a lot of time explaining everything she was doing and looking at. It was pretty obvious though that she saw something wrong with the heart, since she got pretty quiet and spent about 15 minutes taking photos from every angle. She left and got the MD who did his own US look at the heart. Without telling us anything he said I'm going to review what we have seen and I'll be back to tell you what I have found.

After a good long wait he finally came back and told us it didn't look too good. The baby has Hypoplastic Right Heart Syndrome. It is really rare and can be really bad. He gave us a lot of anatomy review, but the basic thing to understand is that that right side of the heart is super small and that it's size is not compatible with life after birth unless there are open heart surgeries done.

What we are looking at is a planned birth at a pediatric hospital in Atlanta, where specialists there will likely perform the first of three open heart surgeries around 3 months of age. Two other heart surgeries will follow before he is 3-5 years old. The surgeries are meant to make the left side of the heart function as both the left and right side. Because of this, there is no guarantee of long term survival, since this will essentially double stress the left side. Every surgery has its own mortality rate, with the highest mortality being the first surgery.

Having said all of those bad things, there is some hope. Apparently the majority of babies born with this defect have NO right side to their heart. In our case, there is a right ventricle (although it is small) and it does appear to be functioning (although not at full capacity). If this turns out to be the case, then the surgeries wont be as severe, and will have much better outcomes for long term prognosis, since the left side of the heart wont need to be as stressed.

To give the doctors the best chance of diagnosing and fixing the defect, the MD suggested an amniocentesis to be sure no other conditions exist. We did the amnio (which hurt like hell) and now we are waiting for the results (two weeks). After we get the results we will begin consultation with a fetal cardiac specialist (probably in about 4 weeks). Until then, we will just proceed like anyone else would...plan a nursery, pray a lot, and prepare to spoil the crap out of this kid.

Please keep us in your prayers as we begin this long road. We are fine, shaken but fine. Whether it all ends tomorrow or 20 years from now, we will love him unconditionally (and it is a he...we had her double check!).

~Kathy

And the baby is a.....

Before I tell you what the baby IS, let me tell you (or rant to you) about our ultrasound.

We went to our US today at 5pm. The US tech performed the US, and she took all kinds of measurements on the baby. She explained that all the measurements gave a due date, and that she would average the due dates and then give us a more accurate, specific due date. Then, all of the sudden, the tech tells us "ok, let me go get your doctor"....

Well naturally at 5pm our doctor has gone home for the day. The tech proceeds to tell us that there seems to be a problem with the heart. She explained that she believes one side of the heart (the right) is smaller than the left side. But the heart is working fine, all the parts and pieces are there, she just thought the size was wrong. So Chris asked her what that means. Then she proceeds to tell us that it could mean any number of things, but what jumps out to her is Down's Syndrome. (Now, a former professor of mine would probably have jumped down her throat about her diagnosing ANYTHING because her job is not diagnosis...it is far out of her 'scope of practice' so technically she should have never said what she did. She should have just told us about the abnormality and that she would schedule us for a specialist).

She THEN proceeds to tell me that there was a test that they could have had done earlier that would have shown us for sure, but that I had turned it down because my insurance wouldn't pay for it. I almost slapped the lady. OF COURSE I didn't pay for it...because I don't CARE if the baby has Down's, we are going to keep the baby! AND THEN I explained to her that I DID pay for another test (quad 4 screen) that gives the same results although it is slightly less accurate (it is like 75-80% accurate) and that THOSE results came back normal. THEN she acted like she hadn't even looked in my chart to see that I had that particular test done OR what the outcome was.

She then started wiping the gel up and turning off the machine......without telling us the sex. So I promptly asked, and the baby is quite obviously a BOY!!!

But, this US tech didn't stop upsetting us the rest of the visit....she forgot to give us photos until the VERY last second, when she ripped the last three photos off and handed them to us...and they were probably the worst three of the whole set. One of them I'm not even going to scan into the computer because it looks like NOTHING although she said it was feet. AND THEN she didn't even give us that more specific due date she had talked about.

So all in all we are happy about the boy, but made about the US in general. We aren't mad about the results regarding the heart...we are mad at the US tech for being so unprofessional and pretty much ruining our idea of how ultrasounds are supposed to go. We could care less about the heart situation. We are going to love this little boy no matter what is wrong.

After all of that, we finally got to tell our parents the sex. For both sides of the family, we called our little sisters first (remember them, the ones that found out dead last that we were pregnant?). Well we told each of them first, and then told the rest of our family...so I guess we are all even now!

Look for another update soon...hopefully we will talk to our specialist very soon! Until then, just say a prayer and be happy like we are that we have a little boy to look forward to! Enjoy the US photos!! The first is of the face and belly (you can actually see the two dark circles under the face are the uneven heart spaces that the lady was talking about) The second is the money shot...if you will....

~Kathy

New US Date!

So Chris realized that he couldn't attend the ultrasound if it was on the 14th of August because he has a mandatory meeting for work in Birmingham. I was worried they would push the date back even more when I asked them to reschedule, but THANK GOD they found a date earlier...well, its only three days earlier but we'll take it. So now we will find out what we have on August 11!

~Kathy

The wait continues...

I went to the doctor yesterday for my monthly check-up. It took all of 5 minutes. We drew blood for more routine tests and we listened to the heart beat. It took her a while to find the heart beat which scared the mess out of me, but it turns out the baby was moving all over the place and she couldn't pin point it long enough to get a rate! You could actually hear the sound of swooshing as the baby moved away from the Doppler sound head. She did finally track it down and it was at 152 beat per minute which is great.

I've been feeling the baby more which is pretty alien. Chris THINKS he may have felt it the other day but it is still hard for him to feel. The doctor was surprised I felt it as early as I did but I think when you are really aware of what you should be feeling you probably notice it earlier.

The one big disappointment from the doctors appointment was that they forgot to schedule my 20 week ultrasound. This is the big ultrasound where they take measurements of all the limbs and organs and figure out if its a boy or girl. Apparently they forgot to set mine up and so they had to scramble to get me an appointment soon. There is a time frame of a couple weeks to get these particular measurements before the baby gets too big and crowded in for them to be accurate. So they got me the earliest date they could...AUGUST 14!!! Ugh. I thought I just had a few days let to wait, not a few weeks!! And so we will continue to wait and continue to hold off planning a room, etc. until AUGUST....

But other than that no complaints. Other than the number on the scale at the MDs is bigger than I ever thought I would see in my life....still on track with healthy weight gaining...it just sucks to see that number on the screen!!

~Kathy

Kicking

I started to feel kicking a few weeks ago, but now I know for sure that is what I am feeling. At first it's hard to decide if it's anything at all because it's so light and so infrequent. Now I feel something almost every day. Chris says he still can't feel it but I figure in a couple of weeks that will change.

We have a week and a half until the next MD appointment. Hopefully the 20 week ultrasound will be the week after that. Up to this point pregnancy has been rather dull for us...which isn't a bad thing at all. But I'm ready to find out what we are having and to start moving forward with plans for a baby room and things of that nature!

Heartbeat

I just got back from the MD. It was a much faster appointment than the last one. I was in there for about 5 minutes total! All we did was listen to the heartbeat, which sounded great...147 beats a minute. It was so freakin' loud, it actually shocked the MD a little! My next appointment is July 23. I'll be 18-19 weeks then, and we will schedule the 20 week US at that point.

According to the scale, I have gained 5 lbs since day one (the goal is to only gain 25ish). And I am relatively sure it all came on in the last week. I bought my first pair of 'pregger' pants...the ones with the big soft waist band...they are the greatest! Chris was a little bothered by them...he said they are 'mom jean training pants.' I'm hoping that starting work next week (now that I have passed the board exam and have a license) will keep me gaining just what I need to and nothing more!! I'm so tired of sitting around this house and doing nothing!!!

I tried to get Chris to write an entry for the blog. He said he'll write one when it's 'man time'....when the nursery gets painted and the furniture gets put together!

~Kathy

New Diagnosis

One of the first things my doctor did was a full panel blood screen for all kinds of crazy stuff. I thought it was just to look for pregnancy related issues. But I got a call from her saying that they found that I have a form of Hypothyroidism. TOTALLY unrelated to pregnancy, apparently hypothyroidism is a condition of low thyroid hormone that causes low metabolism and low organ function. She put me on a pill that will level out that issue. She said it is something that I have probably had since I was a kid and would have the rest of my life. Joy. But obviously I was doing fine not knowing I had it in the first place. I know I won't notice this now, since I will be gaining weight steadily regardless thanks to baby, but I am curious if these pills will actually increase my metabolism. We shall see.

She did tell me everything else checked out fine on the blood screen. Apparently these new screens are sensitive enough to pick up warning signs of things like the trisomy conditions and cystic fibrosis. So we can at least be relatively sure we won't have to deal with those now!

~Kathy

Cancelled Tests

I cancelled the elective tests that my doctor suggested to me. She is really young and obviously really into the technology out there and for some people I'm sure these tests are very important. They are meant to detect Down Syndrome and a number of other trisomy conditions, as well as neural tube defects. But in all honesty it doesn't matter to us what they find or don't find on the tests. We would continue with the pregnancy either way. I guess if someone felt differently then it might be worth doing them. On top of that, it is likely not covered by my insurance, as it is an elective procedure, and I would rather spend $600 on baby stuff rather than a few extra ultrasounds!

~Kathy

First Photo!

I just got back from my first MD visit with my Macon, GA doctor. She did an ultrasound, which I wasn't really expecting to do! She showed me the heart beating and the baby was moving a little bit so that was neat. She said the baby's length puts it at just over 10 weeks, which is a little smaller and younger than we thought (I thought I was at 12 weeks). She moved the due date to December 20 from our original date of December 15.

But other than that she said everything looked good. She recommended that I do some new screening stuff that her office offers. Basically it is another ultrasound and blood test done by a specialist. It checks for a lot of chromosomal abnormalities, deformities, and any neural cord defects. Not that she expects anything, but she said it's great technology and she suggests everyone do it. So we set that up and hopefully they will do that in the next two weeks. The best part is getting to do another ultrasound and getting another photo!

Speaking of photo, you can see our little nugget in the pic posted above! Notice the little white patch in front of the face. That is apparently one of the hands. And also notice the ginormous head....that comes from Chris's genes.

~Kathy

The word is out!!

For the most part, Chris and I successfully hid our news from the world for the last four weeks. Of course, all together we ended up telling about 20 people before we planned on it, but the big surprise is that the news did not make it to either of our families before we wanted it to!

I went to the MD in Mobile last Friday, and while she didn't do any diagnostic tests, she said I seem to be doing fine and gave me a due date of December 15! We went right after the appointment and bought two picture frames that said baby stuff on them to present to our parents.

We went to my parents' house first. My mom took the bag and pulled out the tissue paper. When she saw the frame in the bottom of the bag she just said, "Are you kidding me?!". Then, instead of pulling the frame out, she carried the bag over to my dad like it had a bomb in it and held the bag open for him to look in, too. Of course, they were thrilled. Mom felt a little left out when I told her I had already told my brother, and a friend of mine who works with her!

We went to Chris's parents' house next. His mom pulled the frame out of the bag and was reading it, looking fairly unaware of the significance of us giving her a 'baby' frame. His dad caught on right away though, and yelled, "ARE YOU??". This will be grand baby #7 for them but they were still plenty excited.

The best telling of the night was at my graduation banquet. For the most part, no one in my PT class knew my news. During the banquet, we all get called up on stage, and one at a time we get 'hooded' and then a professor tells the crowd where we got our undergrad degree, where we are moving to, etc. So I asked him (prebanquet) if he could slip in that I was pregnant during my hooding as a way to surprise my classmates.

Of course it surprised more than just my classmates! My sister and sister-in-law were late for the banquet, so Chris and I didn't get a chance to tell them. I asked my family not to tell them either, so that they could hear it when it was announced. My classmates were surprised, although I think some of them had caught on since I hadn't been drinking when we had gone out for dinner! Poor Amanda and Lydia were surprised, too. They are always the last to know (or so they say) so I just wanted to keep up the tradition!

Next step for us is our 12 week appointment with an MD here in Macon, GA!

~Kathy

Secrets are hard to keep...

So it has been two weeks since I found out I was preggers. My goal was to keep it a total secret until we went to the MD to find out for sure that everything was okay. Of course, it was hard to keep it from some people. There are a few close friends in my PT class that I told, mainly because when I DIDN'T order a drink at dinner, they pretty much knew what was up. But I made a careless error this weekend! I was talking to my friends a little too loud at TCBY and a girl I knew from high school over heard me!! She told me congrats, and then I had to tell her not to tell anyone!! I forget so easy that Mobile is the biggest small city in the world and that between my family and Chris's, we know EVERYONE! I actually don't care who know, I just don't want my parents to know yet.

I tried to explain that to my friend, who apparently told her parents before she even told her husband! I don't mind telling my friends that something happened and we lost the baby. But it would kill me to tell that to my parents. This will be their first grandchild, and the first great-grandchild for both of their parents. We have had 4 people we know have miscarriages at various times during their pregnancies and I want to be as sure as I can be that our pregnancy is going well before I tell my parents. Since I haven't had a MD appointment yet, I'm just worried that I'll tell my parents and then find out at the MD's that somethings really wrong.

Although, so far, everything has been easier than I thought. I get little hot flashes, and occasional cramps. I have felt a little nauseous two random mornings but it went away after a while. I'm 6 weeks along now, so I guess if I'm going to start feeling bad it aught to start hitting me soon! Everything is still a go for the MD appointment on May 2. Chris will be in town then and will go with me. Hopefully I can keep everything quiet until then!

~Kathy

POSITIVE!!!

So I just got back to Mobile for four weeks of studying and classes, and will be closing out that four weeks with graduation. I was pretty ready for some Margarita nights with the girls before we all become big kids with real jobs and get spread out all over the country. HOWEVER, two days after I get into Mobile, I take a pregnancy test....and it's positive! I'm super excited, but a little bummed about missing the margaritas.

The worst part I think was not getting to tell Chris face to face. I took a video of me and then ended it with a close up of the two bars on the positive pregnancy test. He called back right away and said, "My heart stopped...are you serious?!" I had some pretty good plans for how to tell him, but I guess I'll have to save those for the next baby!

So now I'm waiting to figure out when my first doctors visit will be. I called my former doctor in Mobile to ask if I need to come in right away or if I should just wait until I get back to Georgia. They didn't know what to do either. So the doctor and nurse are talking it over and they are supposed to be calling me back with their verdict. I hope they want me to come in because I would like to get some reassurance that I am DEFINITELY pregnant. Chris and I would like to tell our families at my graduation. I will be eight weeks along at that point.

UPDATE: So the doctor just called and said that she wants me to come in May 2 (the day before graduation) for the first doctors visit. I guess that works for me...it sucks because it is over three weeks away, but at least Chris will be in town for it, and it doesn't get in the way of telling our families for graduation. She also wants me to go get some prenatal vitamins. So I'm off to fill that order...I'll keep you posted of developments!!

~Kathy