Doctor's visits

Today Gabe and I spent most of the day at M.C. Children's Hospital for his follow up appointment with the surgeon and an ultrasound. Dr. Christian, his surgeon said everything looked great. His shunt sounds good, he looks good and his incision is healing good. All good! I like that! We do not have to go back to see her until the next surgery.

After that we stopped to see Gabe's nutritionist. He has been having a rough couple of days with his bottle intake. He seems to be having trouble swallowing. He gets choked and becomes very gassy and fussy. I believe it has to do with the volume of the new alimentum formula that I am using to supplement my milk. The nutritionist seems to agree and has lessened the amount of calories he is taking in at each feeding. I am to increase it slowly as tolerated until he is back to where he was prior to his milk allergy reaction. Regardless of this latest hiccup, he still continues grow. He now weighs in at 9 lbs and 6 oz!

And lastly, we went to diagnostics for the hip ultrasound. Thankfully, everything looks good. There is no sign of hip displaysia! I was so relieved! I didn't realize I was holding my breath until after I got the good news. My little guy has been through so much already, I am so happy he caught a break!

Getting Settled

Forgive me for not having written lately. Things have been a little crazy as we try to get situated here at home. It's not been difficult, just tiresome. The Lord has blessed Jeff and I with two wonderful and easy children. Jessie has adjusted to having a new brother fairly well. She has her moments from time to time about why this new kid is stealing some of her spotlight, but for the most part, she is doing very well. She worships her new "baby Gabe" and wants to be a part of everything to do with him. She really loves him so much. And the feeling is mutual with Gabe. Anytime Jess gets within his range of sight his little face lights up into the biggest grin. You can tell these two are bonded for life! Co-conspirators against Mommy and Daddy and their "rules"!

Gabe is gaining. He is so big! At his last Dr.'s apt on Monday, he weighed in at 9.02 lbs. He eats so well. I am still supplementing my breast milk with formula although our diet has changed severely since first arriving home.

Initially, Gabe seemed to be tolerating his feedings quite well, but slowly Jeff and I began to notice that he was getting fussy and was beginning to show signs of reflux. On Monday morning I noticed a large amount of blood in his stool. Also, he had three dirty diapers in less than 15 minutes. I called his pediatrician and the worked us in immediately. As it turns out he is allergic to milk. Not to be confused with lactose intolerance. These are two separate and completely different things. Gabe's milk allergy prohibits him from eating anything with dairy in it because he is allergic to the proteins found in milk. In order to continue breastfeeding, I can no longer have milk, ice cream, yogurt, CHEESE and much, much more. You would never guess how many products contain milk! Even some deli meat! It's a whole new world for me. They also changed Gabe's formula to Alimentum, which breaks down the proteins in milk to make it more tolerable for a baby with allergies. Needless to say, he's adapted better than I have! But so much more worth it! He is such a happy baby now. Poor guy, as if he hasn't been through enough as it is!

On Monday we also had a follow up with his cardiologist, Dr. Parra. They are pleased with Gabe's progress. He is doing very well. They noted that the shunt sounds terrific and there is no sound of interference in the blood flow running through it. A clot in the shunt could be very dangerous. We discussed his next surgery, the Glenn operation. As of now, it looks like this may be occurring in November. He will have a catheterization a week or two prior. This will require a night's stay in the hospital. Until then, he is to remain quarantined with minimal contact with the outside world. And until then, we will continue on with that surgery day looming over us. There are so many mixed feelings that come with that day. I dread everything about it. What my son will go through and endure. But at the same time, I look forward to Gabe getting the help he needs in order to come as close to a normal life as possible. The Lord is what is keeping us going through all of this. Please continue to pray for our son.

On the bright side, we do not have to see Dr. Parra again until November. Not that we don't like Dr. Parra. He is marvelous. We just don't like the circumstances that led us to him. One less Dr's apt. to deal with!

Here are some new pictures of the big guy. He is just so cute!!!


His first bath...if he looks a little mad, that is because he was!



Team "Jess-Gabe"

"What are you lookin at?"

Pediatrician Appointment

Today Gabe, my mother and I went to see Gabe and Jessie's pediatrician, Dr. Mehrotra. Gabe now weighs 8 lbs and 8 oz. He is doing so great! Dr. Mehrotra said Gabe looked good. There were no underlying concerns that he had. He was very happy with his progress.

As most of you know, our daughter Jessie was diagnosed with hip displaysia at birth. This is a genetic trait that was corrected with an aggressive treatment using leg braces. Thanks to the good Lord, this was all corrected before her first birthday without the need for surgery. Because this is a genetic trait, there is the possibility that Gabe could also have the same problem. (His chances decrease greatly since he is a second born and also a boy. Apparently it is prevalent in females more so than males.) So because of this, Dr. Mehrotra's office scheduled an appointment for an ultrasound for Gabe. This is set for the 23rd the same day that we follow up with his surgeon, Dr. Christian. We hope and pray that this is one less thing he has to go through. But if so, this is minor to what we are facing with his heart. The Lord will guide us through.

I am including a picture of Gabe in his little outfit today. He looked so cute! With a daughter and 5 nieces, I am so not accustomed to dressing little boys! I've also included a picture of my little helper. She is so proud of her little brother!

We are home!!

We were discharged last night. Gabe is such the fighter that he had to show those Doctors what was up! He is putting down 60ml's of milk every 3 hours with no problem! We have begun to fortify my breast milk with formula for added calories and he seems to be pleasing them all with his weight gain. He is up to 8 lbs and 5 oz. His body is tolerating the shunt well. His oxygen saturations seem to be a little high. They range between 80-90 (75-85 is normal for a heart baby). This means that his veins are expanded slightly and this allows a little more blood flow in/out of his lungs. Normally, you would worry if his body could handle that much blood flow, but the Dr's say that it is handling it well and everything looks good. They took out his feeding tube and we can finally see all of his handsome little face without the interference of tubes or machinery. He smiles so much now- mostly in his sleep but it is so sweet! I wonder what babies dream of? Freedom from tubes is my guess in his case!

So now that we are home, the Dr's appointments begin. Tomorrow we will go see his pediatrician for the first time. I will post an update after we get home.

The cardiologists, dietitians and nurses all gave me strict instructions on Gabe and being home. Fortunately, he only take a quarter of a baby aspirin and a multivitamin a day. I thought he would have to take more medications!

Another issue discussed was Jessie starting school and visitors. They said it would be OK for Jess to begin her preschool year next week but the teachers would have to be very careful with the amount of contact she may have with sick kids. She will have to be meticulous about hand washing and will have to bathe and change clothes when she gets home from school. If she gets sick, we will have to keep them separated at home and pray that neither Jeff nor I get it from her.

Visitation was brought up as well. The Doctors think it best if everyone wait until we get the go ahead for Gabe to be introduced to you all. He cannot get vaccinated for a few weeks and he needs to continue to grow and gain strength for his next surgery- which will come up within a few months. Getting sick would change everything. So, we are quarantined for the time being!

Jeff and I want to thank everyone for your continued support and prayers. We know that you all have had a hand in Gabe's quick recovery from his first surgery. It means so much to us that you all care. The Lord has blessed us incredibly.

We have been moved up!

Today, we were moved out of the PICU and up to the patient rooms on the 6th floor! This is the final resting spot before going home! Gabe is no longer on any lines. The pic line was removed this morning. He still has the IV port in his scalp, in case they need it. They checked the vein and it is still good, although possibly not for long. Of course, he still has his saturation and blood pressure monitor as well as his leads measuring his heart rate but none of those are invasive.

We did get some bad news today. We had thought that since he had eaten well yesterday, that he would have no problem gaining weight. Weight is a big issue with heart babies. It is important that they consume so many calories daily. Well, Gabe decided that he would not eat well today. He would latch onto the bottle for a few swallows but then make faces and quit eating. Because of this they put in a feeding tube tonight. Hopefully, temporarily. To me, it looks as if his throat is sore from the ventilator and it hurts to swallow. We hope that this will change before going home. They taught me how to insert the tube through his nose, but it still makes me very nervous. I really am hoping that this will not be something I need to worry about once we go home. Regardless of this, he now has a full belly and is sleeping peacefully in his crib right beside me. He is such a sweet little angel.

Gabe's Busy Day

My little guy is exhausted! He is sleeping so soundly. Let me tell you about his busy day! We were moved to another pod this morning. There was another more critical baby moved in that needed immediate surgery. Gabe is doing so well that they put him in a less critical area where he shares a nurse with another baby. (He had his own nurse all to himself earlier). Right after they moved him, they extubated him. Yes- you heard right, extubated!! As in "removed his breathing tube!!" I thought that was a rather large victory, but oh no...Gabe didn't. He couldn't just stop there. He improved so much that he even got his chest tube, central line and an IV out of his shoulder. So all that is tied to him is his blood pressure monitor and his pic line. (They did keep an IV port in his scalp, in case they needed it. Oh- but he didn't stop there! He also, proceeded to try some pedialyte to see if he could keep it down. And he did! So a couple of hours later, he got an ounce of milk in a bottle. He did fantastic with that and followed up the rest of the night with more feedings. He really is such a strong little boy. Thank you for your prayers, everyone! Keep 'em coming! And while we are all praying...please take a minute to pray for all of the sick children in the PICU. They are all in similar if not worse situations as Gabe. They need all the prayers they can get. Lets pray that they all get to go home and be with their families soon enough.

Below are some pictures of the little guy and some of his victories.

He's settled and stable!

My little munchkin was placed in his pod this afternoon at the PICU. He is very stable and very swollen. He didn't seem so bad initially, but as the evening progresses his little face and body gets fuller and fuller. They say it is only temporary. It is the body's reaction to what it's been through. He is doing incredibly well. (Told ya he was tough!) His vitals are fantastic and they are slowly weaning him from his breathing tube. There is minimal drainage from his chest tube and if it continues this way, then he may be rid of that soon enough as well. That is the worst- the chest tube. I can barely stand to look at it. It looks so uncomfortable.

Of course all of this fantastic news can always change in the blink of an eye so please continue to keep Gabe in your prayers. He is such a cutie!

Out of Surgery and in Recovery

Dr. Christian just came out. Gabe is doing great. He is stable and in recovery. He did really well. "No big surprises" (no little surprises, either- I asked). She said that he may have his ventilator removed tonight or tomorrow. We are now waiting for him to be moved to the PICU so that we can see him. It may be a while. The pod they had for him was given to another child that was critical. I will give you another update later. THANK YOU for your thoughts and PRAYERS. They were answered. Now lets pray for a good recovery and that he will be home soon!

First Update

The nurse just called. Gabe is stable and doing well. They had a problem getting his arterial lines in but everything is well now. They are in and Dr. Christian has completed the incision and is currently working on him. Keep him in your prayers.

Day of Surgery

Here we are in the waiting room waiting for our first update from the surgeon. After a futile attempt at sleep last night, Jeff and I were in Gabe's pod at 6 am this morning. They were running behind so they actually did not come for him until 8 am. We met with the anesthesiologists and they returned soon after to take him back. They allowed Jeff and I to walk with him up to the OR entry. They said we should get an update within an hour. So here we are...waiting.

Please, please if your reading this blog- pray for our little boy. He is so tiny and seems so fragile but yet he is the strongest person I have ever had the great fortune of loving. I would trade places with him in a heartbeat, but can't. Pray that the Lord guides him through all of this safely and that his guardian angel is right there holding his tiny hand.

I will post as soon as we hear from them.

Update for Tomorrow's Surgery

We were notified this afternoon that Gabe's surgery has been bumped up to 7 am. So he will now go first. Please, please pray for our little baby. We are terrified and nervous but ready to get on with it. I will keep the blog updated as they notify me during the surgery.

Here are some pictures I wanted to share

A close up. He sleeps with his mouth open like his sister!

Here is Jessie's gift from Gabe.. A KIT-TAR!!!

Jessie and her Big Sister shirt.

My little guy with his eyes open!

Update for yesterday and early today

Well yesterday started out pretty uneventful. Gabe had managed to stay stable for most all of the day. He is so sweet. When he gets upset, his little brow puckers and he looks like he could tear up something (wonder who he gets that from??) But he just tosses his head around and turns red. He cannot cry because of the breathing tube, so it looks so pitiful. I will really welcome the sound of his cry when I get to hear it again.

Jeff and I were able to hold him for several hours yesterday. The nurses are great here. They want to give us as many chances to hold him as possible before surgery. Jeff was really excited. He hasn't held him since the brief minutes after his birth. Here is a picture of the boys together.

His surgery is tentatively confirmed for tomorrow. He is a case 2, which means there is one surgery ahead of him, then he will go in. Of course, this is all subject to change, based on the status of the other heart babies awaiting surgery. We met the surgeon. Her name is Dr. Karla Christian. I have heard good things about her. I hope they are all true since my babies heart will be in her hands tomorrow. She explained the procedure. They will be placing the Blalock Taussig shunt via an incision into his right lower back. This means no open heart and no bypass machine!

We signed the consent forms, which was really hard to do. I think that may have been one of the hardest things I have ever done. I didn't want to upset Jeff but I think he saw through me. It's done, and I can't look back. He needs this surgery and we have no choice. But I know that the Lord will be with him every step of the way.

Last night was a little more eventful- to say the least. There was a funnel cloud over the Vanderbilt campus. The nurses all rushed to cover the incubators in the pods and put blankets over them. It was a little unnerving. Then right in the middle of the chaos, Gabe decided to have his oxygen sats drop. He was very fidgety and his color began to change. I started to panic! The alarms were going off and of course, the nurse was trying to protect babies from the impending tornado. She came to his rescue quickly and basically gave him a gas treatment and then suctioned his breathing tube out. He settled down and got his color back. His levels have been where they need to be ever since! This was so terrifying. It is a reminder of how vulnerable he is and how quickly things can change.

This morning all seems well with my little guy. Just counting down the day until surgery. Every minute I get more and more nervous. The staff here is fantastic. His nurses are wonderful. They are trying to get us a sleep room for tonight. There are rooms here with little twin beds for families that have critically ill children and live far away. Although Gabe is sick enough, our proximity to Nashville has not allowed us to have access to one of these rooms.

That just about covers it for now. I will post more information as we know it tonight and tomorrow during the surgery. Thanks again to everyone for your support and prayers. We would not be as strong if not for you and the Lord!

The highlight of my weekend

Gabe was so stable throughout the day yesterday that they let me bathe him and hold him!!!!!! It was so amazing and wonderful to actually be a mommy to my little boy!! Jeff got to change a pee-pee diaper! He was so good at it, that I think he should be on permanent diaper duty!


They did adjust his ventilator again yesterday. It seems he was doing so well breathing on his own that it would require that they extubate him. Ordinarily this would be awesome, but since he is still on the Alprostadil to keep his valve open, he will still have moments of apnea. We don't want another "thursday night" so they have changed the ventilator to do most of the breathing for him. Hopefully he will be well enough after surgery on Wednesday to breathe on his own. We'll see... in the meantime here are more pictures of the little guy. I will update on today's events later on this evening or tomorrow morning.

Well we are learning a lot about the world of the NICU. Everyday we learn a new word or a new term used. It's very insightful, although I would rather be completely ignorant and be sitting here in the hospital room with Gabe waiting for our discharge!

As of yesterday, Gabe was doing well for the most part. He is having trouble with mucus buildup in his chest from the breathing tube. This is causing a slowdown in his respiration. They suctioned him very often. They also said that they were planning on doing a heart catheterization on Monday to get a closer look on how his heart and blood flow operates. Basically to get a clearer picture on the game plan for surgery, which they are planning for Wednesday. Of course the surgery date is not set in stone. It may get pushed back or pushed up depending on how he does or others with greater or more serious needs. They have been keeping a close eye on his lactate acid levels. Apparently, this is something they monitor because a high level alerts that there is something wrong within his bodily function. They were high Thursday night but with careful monitoring and gas treatments, they can get it under control. Normal range is between 1 and 2. His oxygen saturations have been excellent in the normal range. A chest and head xray found an air poket in one of his lungs but it cleared itself on its own. And lastly, they found a small bruise between his skull and brain but they are not concerned. They say this comes with over-monitoring. It is fairly common in newborns but typical healthy newborns are not xrayed so it goes undetected. If it were a larger bleed or bruise it would be cause for alarm but that isn't the case. I should also mention that Gabe was baptised yesterday. This is a huge relief for Jeff and I. We appreciate Father Mark having come down to perform this and also do a quick annointment for the sick. We will celebrate his baptism in a good spanish tradition when he is home!

Todays update is a little different: Although, he is still having problems with mucus build up, they are suctioning him regularly. They have lowered the amount of help he gets from the tube and he is basically breathing on his own. The tube only kicks in when he forgets to breathe every once in a while. This is to wean him from the tube and get him accustomed to breathing on his own. he seems to be doing very well with that. They are going to keep the tube in however since he will need it for surgery on Wednesday. They have cancelled his catheterization, which is fantastic news. The cardiologists think that there is no need for it and that they have a game plan for surgery. His lactate levels are down to 1.4 which is great news. They are going down so they are only giving him gas treatments every 8 hours now. They are using a pic line now and have taken one of his IV's out. Basically, as of this morning, he is doing fantastic. That is the little fighter in him. He's been a fighter since the beginning!

We appreciate everyone's phone calls and texts. We are very grateful for your support and prayers. Your support means the world to us. A lot of people have asked about visitation. The thing is, that he is in such a vulnerable situation right now, that Jeff and I feel that we should keep visitation to a minimum from immediate family only. There are a lot a sick babies in the NICU and a constant flow of traffic through there interferes with the caregivers and their jobs. Also, they are all so vulnerable to germs and sickness. It would just be simpler to stay updated through this blog. We will post as many pictures as possible and we promise that you will get to meet Gabe as soon as this is all past and the Dr's allow it. I will post more updates later!

First Night

Isn't my boy handsome????? He reminds me in some ways of his big sister yet they look so different! Yesterday was such a long day. Jeff and I finally fell asleep at 9 last night. It was very busy and neither of us had slept well the night before since I went into labor at 1:00 that morning. We aren't completely well-rested and probably won't be until Gabe is home with us. I was up at 4 this morning anxious to head to the NICU and visit my little buddy.

His night went well. There was no change in his stats. They stayed along the same lines as yesterday. It is so hard to see him with that horrible breathing tube. It breaks my heart. We came back to our room to eat breakfast and are about to head back to the NICU. His Dr's are making their rounds and we want to try to catch them to get an update. I will post more when we have spoken to them. In the meantime, here is a picture of my boys that I took this morning. What lookers, huh????

The big guy is finally here! He was born at 10:09 weighing 7lbs 11oz. He has already made the trip to the Childrens Hospital but we did get to hold him for a little while. We will not be able to go see him for about an hour. He has to see the cardiologist before we can go see him. Everything looks good right now but we won't know anything else until the doctors have seen him and done all their tests. Please keep Gabe in your prayers. Thanks for all the calls and texts.

Sandra is now at 8. Shouldn't be to much longer!

Today is the day

Sandra woke up this morning about 1 with contractions so the doctor told us to go the hospital. She is currently at 5 and doing well since she got her medicine. Stay tuned for more info as the day progresses.

OK- I'm horrible!!
I know that I have not written as promised. Let me begin by apologizing. It's been a very busy last couple of months. I love summer, its my favorite time of year, but it sure does keep you on the go!

Let me update you on what has been going on. As I mentioned in my last entry, I have been going to the Dr for bio-physical profiles and non-stress testing twice a week. (Sometimes three times a week- with my maternal fetal apts from Vanderbilt thrown into the mix). Besides a hiccup a couple of weeks ago, Gabe has passed these tests with flying colors!! He is showing no signs of fetal distress or heart failure. There is no fluid build up and he is practicing his breathing. And boy is he growing!! They approximate his weight to currently be around 7 lbs and 12 oz. Of course, this could be off by a pound since it is an approximation based on how he is measuring in his bio-physical profiles (an ultrasound, where they measure everything and look closely over his organs and movement.) His Doctors are happy with his size. They say that it is common for heart babies to not be very big. (These kids must not have daddies with "Moose" for a nickname!) So the fact that he is gaining well is fantastic! This will be a huge benefit going into his first surgery! Let's just pray that he continues to gain this well outside of the womb! The hiccup I mentioned earlier was a little arrhythmia. They noticed an extra little beat in his heart rhythm. That was an eventful day! At first the Dr's seemed a little worried. But upon further inspection, my Ob and Gabe's Cardiologist, where not overly-concerned. Dr. Brown, my OB, thinks that this comes with being monitored too closely. He has seen other situations in completely healthy babies where there was an irregular beat this late in pregnancy. It usually corrects itself. The cardiologist, thought that it may also be due to some preterm contractions that I had been having. Anyway, they told me to stay off the caffeine (which I have) and the following week the arrhythmia was gone. Guess they were right!

In June my girlfriends threw us a baby shower. (I should also mention that one of my gf's is my sister-in -law, who is amazing!) It was so much fun! It was wonderful! We ate good food, the kids swam, and had excellent company. It was a fun evening at the Big Kahuna. Thank you all so, so much! Everyone has been so supportive. Jeff and I realize how lucky we really are!! You guys are a huge part in how we have managed to get through the past months so smoothly.

Which now leads me to where we are now. Today I am 38 weeks. At my apt yesterday, everything went well, during the non-stress test but they did notice that i was having contractions about 8 minutes apart. I felt them, but they aren't crazy-crazy painful, so I thought they were simply braxton-hicks. I am dilated at 2 and possibly almost-30 % effaced. Basically, from what he could tell, he was concerned that I would go into labor this weekend. The concern is because he is not on call so he would not be delivering Gabe if this were to happen. He told me to rest and not do anything physical. He said swimming would be wonderful, because it would relieve the pressure on my cervix. So, I guess, we'll spend the weekend at the Big K! I did meet the Ob on call. She seems very nice, but obviously, I would prefer that Dr. Brown be around for the delivery. Therefore, I will do exactly as he said! If I make it past this week, my induction date will be the 27th. So basically, everything is set! We are just waiting....excited to meet our son, yet terrified of what he has to go through upon his arrival. It's a good thing we have God in our corner!

Whenever Gabe does decide to make his arrival, please know that we will keep this blog updated and keep everyone informed on what is going on. This labor and delivery will be very different from Jessie's. Although, everyone means well, we ask that you all stay home and keep us in your prayers. It will most likely be very emotional for Jeff and I and it would be easier to keep visitors at a very minimum. Gabe will not be accessible to anyone in the NICU other than us, and our focus will be to be with him. I am planning on spending minimal time in my own room! We will post pictures for everyone to see and when he is home and released to go out in public you guys will all get to meet him!

Again, thank you for your prayers, love and support. Please continue to pray for a miracle!!!

Last three Dr Appointments

I'm sorry I haven't posted in a while. I am not the best at keeping a journal! I guess I need to update everyone on the last three visits to the doctors. Balancing the many appointments with work and our home life is getting tough, but worth it. The Doctors are doing an outstanding job on keeping up with Gabe and how he is growing. The visits haven't been very eventful, but normal and uneventful in this situation is wonderful news!

On May 11th, I went to see Dr. Parra, the Cardiologist. He performed another echo on Gabe's heart. With Gabe's growth, it was much easier to look at his heart and arteries a little better. Although his heart is still unchanged, we did get some news. With his transposition of the arteries, it was first thought that they would have to switch his two main arteries back to the way they should be. (in case you don't remember, his aorta and superior vena cava are transposed). But it turns out that his aorta is large enough to do the job of the vena cava and they will leave them as is. This is one less detail to work on in surgery. It also increases the possibility that his first surgery won't have to be open heart with bypass. They can do the Taussig shunt procedure through an incision on the right side of his back. An echo upon birth will determine this more clearly. We also found a VSD (ventricular septal defect). This is a hole or opening between two of his lower chambers. Typically, this isn't a good thing, but in his case it helps the blood flow into the right side of his heart. I am not sure if this is something that we will have to deal with later with his other two surgeries. Dr. Parra said that he was happy with the results of today's visit and he seemed much more optimistic than our last visit. We really felt good when we left his office. He said that he would not have to see Gabe anymore until the day of his birth. So that's one less appointment to worry about!

After this appointment, one of the Vanderbilt social workers took us on an indepth tour of the NICU (where he'll be upon birth), the PICU (where he'll be after surgery), the 6th floor (where he'll be right before going home), the surgical waiting room, and the Labor and Delivery wing at the Medical Center. I had heard stories about the distance between the labor and delivery rooms to the Childrens Hospital, but upon taking the walk, it wasn't bad at all. I had a bit of a hard time in the PICU. The reality of the situation really set in. It was tough seeing the babies and children recovering from heart surgeries or waiting for transplants. I wondered about the fairness of it all. Why them?? It's heartwrenching. But I realized that it is not my place to question the Lord. There is always a reason. Even if its one we will never understand. I just need to continue to have faith in him solely. To let him carry the burden and trust that regardless of what happens, he loves us unconditionally. I will never give up on a miracle.

On May 19th, we went to see the high risk OB at Vanderbilt. They performed an in-depth ultrasound. We got to see so much of the little guy! He has gained a little over a pound. He weighs 3 lbs and 6 oz so far. He is not as big according to the growth chart. Last month he was at 73% in growth. This month he is only 36%. But the doctor was still very happy with his growth. She said that the percentile will fluctuate a lot in utero. We'll have to wait and see what its like next month! The best part of this visit was that we got to see a clear close up of his face!!! And Let me tell you....he is soooo stinkin cute!!! He looks a lot like Jessie. But his cheeks are a little chubbier and he definitely has my nose (poor guy). He seems to have my mouth too, but Jeff's dimple chin. I cried when I saw him. He looked a little pouty about being disturbed. It was so cute! Besides seeing his little cherub face, they looked at his everything. And he seems to be growing well. His limbs were proportioned correctly for his size and weight and with the rest of his body. I will go back for follow up next month.

On May 21st, I went for my "every two week" appointment with Dr. Brown. This is the fastest and easiest of all appointments thus far. They simply keep up with the typical OB type stuff. Weight, size of my belly and they listen to his heart rate. It was in the 140's. You would never know...
We discussed the non-stress tests again. They will begin soon. So that will mean that I will be going to see him twice a week. Initially, it was going to be at 32 weeks but they are going to wait until I am around 33-34 weeks. I am currently 30 weeks. These tests will monitor Gabe a little closer to make sure that he is moving, swallowing, etc. as he should be.

Well folks, there you have it, a recap of the past two weeks. Fairly uneventful, but no news is always good news in Gabe's case. I also want to add in closing, that my thoughts and prayers go out to the Bibb family, whose little boy, Ethan, passed away last weekend from a long battle with cancer. He was a very courageous little boy. No parent should have to bury their child. I pray that the Lord keep them strong in the minutes, hours, days, weeks, months and years to come.

A Wonderful Mothers Day Weekend

What a great weekend we had! On Saturday Jeff and I along with my parents and Jeff's mom went to the American Red Cross to get certified in Infant/Child CPR. Despite some joking around from Jeff that I had probably allowed my dummy to suffer severe brain damage for forgetting to hold his nose while blowing into his mouth, it went pretty well. The class was interrupted briefly by the Mayor, the Governor and the Director of Homeland Security, Janet Napolatino and their visit/ photo opp at the American Red Cross. Some in the class where really excited. I'm glad it made their day.

On Sunday, Jeff and Jessie surprised me with my beautiful gift! They planted a variety of Dahlia's into a planter for our back patio. As you can see they are gorgeous. And Jessie was so proud even though she admitted that her daddy really bought them and did most of the planting. It was a wonderful day. There was a time in my life when I questioned whether or not I was ever going to become a mother. Despite how badly I wanted it, I thought that it wasn't in God's plan for me. Then Jeff came along and completely changed my life. I am so blessed to have been chosen as the mother of my two children and wife to my husband. They are truly special in their own way. Although, Gabe hasn't quite made an entrance into this world, I feel that I already know him so well. My family is my world and there is no better or more rewarding job than to be a mother.

Below is a poem that was posted on one of the blogs I've been following. I felt that it couldn't be more accurate of what it feels like to have a child with CHD. It reads:

The Day I became a 'Heart Mother' by Stephanie Husted

One day my world came crashing down, I’ll never be the same...They told me that my child was sick...
I thought, am I to blame? I don't think I can handle this...
I'm really not that strong... It seemed my heart was breaking...As, I'd loved him for so long.
I will not give up on this child... Despite your best "advice"... I will give my child a chance...
No matter what the price... And I will learn all that I need... To help my child to thrive...
I'll even use that feeding tube... My child will survive!
Will he require therapy? What if he can't gain weight?
Alright God I can do this... I will not curse our fate.
The feeding pump beeps, (at 3:00 a.m.) It serves as my reminder...
How many parents would welcome that sound? Tomorrow Lord, I will be kinder.
Another angel earns their wings... and I run to my sleeping child's bed...
I watch him then, for quite awhile... (Bend down and kiss his head)
Then I cry for the parent's whose lives have been broken, and I look to God wondering why?
Oh Lord, I just can't know your ways... No matter how I try.
And yet, I trust YOU hold his life, (and guide us through each day)
My mind says savor each moment he's here... But my heart whispers, “Please let him stay”.
From... pacing the surgical waiting room... to sitting by his hospital bed...
From... Wishing for a good night’s sleep... to learning every med...
From... wondering will he be alright? To watching him reach out his hands...
with every smile, my heart just melts... (despite life's harsh demands)
For all who see that faded line... I look to them and smile... You see my child is loved so much...
I would face any trial... That same scar I trace with my finger... (It's the door to his beautiful heart)
I never guessed how much I'd love him... (Just as YOU loved him right from the start)
A heart mom is always a heart mom... (Now wise beyond her years)
And for those who have angels in heaven... Our hearts share in all of your tears...
Every day I will strive to remember...
You chose me for him (and no other)
and I will embrace that beautiful day...
When I became a "heart mother".

The Flood

Jeff and I wanted to post that our thoughts and prayers go out to all that have suffered a loss in the devastating flood. We were very lucky in White House. I am so proud to say that I am a Tennessean. Our state and its people have really shown an immense amount of class in the face of such a tragedy. Their resilience and determination to overcome this devastation should truly be applauded.

I have attached a few pictures of the flooding in downtown Nashville. I took these from my office window the Monday after the rain had moved out. The first is of the Cumberland River. At this stage it was still rising.

This next one is of the Cumberland River at Riverfront Park. Across from LP Field. The parking lot at LP was completely underwater and the water was making its way to the field.

The one below is of the Farmer's Market on 8th Ave.

28 Week OB Appointment

I went for my first of many appointments this month. This was just a normal obstetrical visit with Dr. Brown. It was basically uneventful. Considering the emotional havoc of previous doctor's visits, I'd have to say that uneventful is great!!! We discussed the non-stress tests I will have beginning at 32 weeks. And also the aches and pains that I have begun to feel that I seemed to have blocked out from my pregnancy with Jessie. It is all so worth it! I cannot wait to meet my little mini-Moose! He moves around so much now. It's really neat to watch my belly jump and pop. Probably more neat to me than the average person because it's a reminder that Gabe is thriving and doing so well. So, I'm still gaining weight with no end in sight! Dr. Brown says my gain is great, but between us, I feel like I am the size of 3 huge men! My belly is measuring normal and the baby's heart rate is in the 140's. So all looks great! I go back in two weeks. Of course I will see two other doctors before then, so more updates will follow!

Three Appointments in One Day!

April 21, 2010- Today I went to my first appointment with my new OB(s). Dr. Brown comes highly recommended. He will be the one to deliver Gabe. He is in a private practice near Baptist but has privileges at Vanderbilt. He is exactly what I am looking for in a Doctor (since I can't have my beloved Dr. Kyzer). First and foremost I liked him. Also, he is in a private practice. No residents or students to worry about. Although, Vanderbilt is the best place for Gabe to be, it is a teaching hospital, so there does tend to be an audience at times during treatment. Secondly, he has delivered babies with CHD. He explained that he would be in constant communication with Dr. Parra and the new high risk doctor I will be seeing later this afternoon.

My appointment went well. They drew blood after I drank the yucky orange sugar drink (glucola) to check for gestational diabetes. Again, I am gaining, gaining, gaining. I won't mention how much! Gabe's heart rate was in the 130's. Still in the normal range. I am to see Dr. Brown every two weeks. Everything seems to be going great! My glucose check came back negative for diabetes. Woo-hoo!


My next appointment that afternoon was with Dr. Kelly Bennett with the Vanderbilt Junior League Advanced Maternal Fetal Medicine. This group will monitor the baby very carefully. I will have an ultrasound at every visit. (once a month until 32 weeks, then twice a week). I love the thought of seeing my little angel boy. He is so cute! His profile reminds me of Jessie's. They measured every inch of him and made sure that everything was growing as it should be (from Brain to Spine). Afterwards, they were able to tell us how big he currently is. He is 2 lbs and 4 oz. This puts him in the 73% on size in utero. He's pretty big! I like that. I really want him to be on the big side at delivery. This will be a huge benefit going into his first surgery. I also want to add that the staff at the Advanced Maternal Fetal Office are wonderful. They were very concerned with our comfort. A very nice lady even came in and offered a basket of refreshments and drinks. Jeff and I didn't know what to think initially! I believe that the Junior League partially runs on the generosity of others. I will have to make it a point to bring in snacks and to help to support all other parents in our situation.

We then met with a geneticist. She basically met with us to answer any questions we might have had about the causes of CHD and the chances of having another child with CHD. (We laughed and said our chances were highly unlikely since Gabe will be our last! I think we will have our hands full with Jessie and him!) The chances are less than 5% for those of you that would like to know. It was nothing Jeff or I carried or did. 1 out of every 100 babies are born with a congenital heart defect. It is the #1 most common birth defect.

Afterward, they gave us a tour of the NICU and part of the Children's Hospital. We stopped by the Family Resource Center on the way out. It is a family information center created to help provide information to families of children with medical conditions. They have a library and we found a book titled "The Parents Guide to Children With Congenital Heart Conditions". We thought it might be enlightening. There is a forward from Sylvester Stallone, whose child was also born with a heart condition.

I probably will not write again until my next appointment with Dr. Brown on May 5th. Until then, please continue to keep Gabe in your prayers. I had wondered at times that since it had been a month since Gabe's diagnosis, if the prayers had continued. People forget in time and life goes on. But let me say that anytime that thought has crossed my mind, someone has always called to check on us or sent a card or left a beautiful pot of Daisies (my favorite! Thanks again my dear friend, G!) Or even mentioned out of the blue that someone else we don't even know is praying for us. I think that through your prayers, God has given me the strength to look past the agony and heartache and look forward to the days when my sweet angel is playing side by side with his big sister! We love you all! Thank you for your prayers. Keep 'em going!

My first OB Visit Post-Diagnosis

On April 5, 2010 I went to see my Obstetrician, Dr. Kyzer. This was my last visit with Dr. Kyzer (until post-delivery). Dr. Kyzer does not have Vanderbilt privileges, therefore, I am being referred to a new OB that will be able to deliver Gabe there. I am also being transferred to a second OB that I will be treating with as well. This other OB is with a high risk group at Vanderbilt. They will monitor the baby a little more closely, whereas my principal OB will handle routine obstetrical care and deliver Gabe once I am in labor. I am really saddened by the fact that Dr. Kyzer will not be delivering Gabe. I have been with her for 18 years. She delivered Jessie and quite honestly, I only trust her. It will be difficult for me to open up to another doctor (especially under these circumstances).

The appointment itself went well. I'm gaining weight quite well (too well)! Gabe's heart rate was in the 150's and the growth of my abdomen measured normal.

Dr. Parra- this is a long one

March 25, 2010- Our fist visit to Vanderbilt Children's Hospital for the first (of many) echocardiograms. We met Gabe's cardiologist, Dr. Parra. Jeff, Mama and I liked him very much despite the bad news he gave us. At least now we have a name for all that ails my little Gabe. He has been diagnosed with Hypoplastic Right Heart Syndrome which, in his particular case, consists of Tricuspid Artresia, Pulmonary Artresia, and d-Transposition of the Great Arteries.
Defects vary from individual to individual and although, one may be diagnosed with Hypoplastic Right Heart syndrome, their specific defect could be completely different than what Gabe has.

Let me try to explain these conditions as best and as briefly as possible:

Tricuspid Artresia- there is no tricuspid valve so blood can't flow normally from the right atrium to the right ventricle. As a result the right ventricle is small and not fully developed.

Pulmonary Artresia- No pumonary valve exists. Blood can't flow from the right ventricle into the pulmonary artery and on to the lungs.

d-Transposition of the Great Arteries- The pulmonary artery and the aorta (the major blood vessels leaving the heart) are switched so that the aorta arises from the right side of the heart and recieves blue blood (Unoxygenated blood) which is sent right back out to the body without becoming oxygen rich. The pulmonary artery arises from the left side of the heart, recieves red blood and sends it back to the lungs again. The result is that babies with this condition often appear very blue and have low oxygen levels in the bloodstream.

Dr. Parra basically explained that I would now be delivering at Vanderbilt (originally planned to deliver at Baptist) so that Gabe will have access to immediate cardiac care. Upon birth, he will immediately be taken to the NICU, where they will stabilize him and give him medication that will keep his patent ductus arteriosis (PDA) open (this valve closes upon birth to begin breathing oxygen) so that he will be able to continue breathing as if he were in the womb. They will continue with this medication until his first surgery within the first week of his life outside the womb.

Surgeries:

Gabe will have a series of 3 surgeries (all open heart). The first, as mentioned, will take place within his first week of life. It is called the Blalock Taussig Shunt. They will connect the aorta to the brach from the pulmonary artery with a shunt or tube.

The second, will likely occur at around 3 months of age. It is called a Bidirectional Glenn Shunt. In this surgery the main pulmonary artery is tied off and cut away. The superior vena cava is connected with the right pulmonary branch artery. The head, neck and upper body blue blood is sent to the lungs without going through the heart. The hole between the two top chambers is enlarged. The original shunt is removed.

The Third (and hopefully final) surgery will be around Gabe's 3rd birthday. It is called the Fontan Procedure. The the blue blood from the lower part of the body is directed to the lungs. This is done using the inferior vena cava, the right atrial wall and artificial material (gortex). A tube is fashioned through the top right part of the heart and connected to the right pulmonary artery branch. This rerouting allows the blue blood to enter the lungs without being pumped by the heart the heart remains available to receive the red blood from the lungs and then pump it to the body.

He will have a heart catheterization before the 2nd and 3rd surgeries to make sure that his lungs can handle the extra blood flow.

All in all, it was a good visit. Jeff and I felt better afterwards. It helped us to see what to expect and it was nice to have answers to all our questions. It was a lot to absorb and I was exhausted emotionally and physically after it was all over. We are very blessed to live in Nashville and have the resources that Vanderbilt offers so readily available. So many families have to uproot their lives and families to seek the treatment required by a state of the art facility. My prayers are with them as well as my dear boy tonight.

2nd Set of Good News this Week!

On March 24, 2010, I got the rest of my amnio results. They are also negative. Ahhhhh the relief! Now we know that we only have Gabe's heart to worry about. We go to the pediatric cardiologist at Vanderbilt tomorrow. They will perform an echo cardiogram to look at Gabe's heart. Of course, we'll have more news by then. Until then, please continue to pray for our sweet angel as Gabe needs as many prayers as possible. We are still hoping for a complete misdiagnosis of the original ultrasounds. We would love to hear "sorry guys, your son was laying in an awkward position and his heart appeared abnormal. We were wrong, he is perfectly healthy!" We'll see...

Finally- Some Good News!

On March 15, 2010, the 1st part of our Amnio results came in. They were negative for Downs Syndrome, Trisomy 13 and Trisomy 18! It was such a joy to get such news! I know my coworkers must have thought I was a crazy basket case and over-emotional pregnant lady! I just sat in my office and cried with relief. Finally some good news. Now for the rest of the results...

Amniocenteses

On March 12, 2010 we went to see Dr. Fortunato at Maternal Fetal Group for an amniocenteses. As mentioned in my earlier post, we were hesitant to do this. I have been on the fence, wondering would it matter? I love my son so much already and the possibility of risking his life with a test is terrifying. After speaking to my OB, Dr. Kyzer (who is wonderful, I might mention), she explained that some chromosomal abnormalities were fatal. And if Gabe tested positive for any of these, we may want to prepare ourselves. After deliberating for a long time, it was decided to go ahead and follow through with the procedure.

The procedure was a cakewalk. The worst part about it was the anticipation and fear. Dr. Fortunato was kind enough not let me see the needle prior to penetration. They used an ultrasound to make sure where the best possible point of entry was without coming close to the baby. It was so odd to sit and watch this needle on the ultrasound screen. They told me to lay perfectly still as they did the procedure. At one point, it looked as if Gabe was touching the needle. I began to panic but stayed perfectly still. Through closed lips I mumbled "he's touching it!!! He's touching it!! Stop!" The Dr. just smiled and assured me that although it looked like Gabe was right next to the needle, he was quite a ways behind it and was not touching it. Within two minutes it was over. Now for the wait! They told us that we would receive the results for the 3 most common abnormalities (Down Syndrome, Trisomy 13 and Trisomy 18- the latter 2 are fatal) by the following Monday and the rest within another week. Thank you for your continued prayers. The Lord will see us through regardless of path we must take. Of this we are sure!

Our 20 Week Ultrasound

On March 9, 2010 Jeff and I went for my 20 week ultrasound and OB appointment. This being our second child, I was very excited to find out if we were adding another girl to our family or could it possibly be...a boy! Imagine our surprise and elation when we found out that we were having the boy that Jeff, my father and brother all had hoped for! Finally more testosterone in the family! Our happiness was short-lived and quickly turned to fear when my Doctor explained to us that there may be something wrong with his heart. They immediately sent us to a maternal fetal doctor that specialized in reading ultrasounds. Unfortunately, this visit confirmed our fears. Our son had what appeared to be a malformation of the heart. We would know more after an echo cardiogram could be performed by pediatric cardiologist. They set up an appointment with a cardiologist at Vanderbilt Children's Hospital for the following week. We were also asked to consider an amniocenteses to rule out the possibility of any chromosomal abnormalities. It appears that congenital heart defects are common in babies with these abnormalities. Although, it seemed reasonable to find out. I was unsure about proceeding with this because of the possibility of miscarriage. We agreed to think about it and to get back with Dr. Fortunato's office the next day. So this is how our day ended. As I look back I wonder how I made it through that day. It was truly one of the worst in my life. It's through God's love, Jeff's strength, my mother and father's support and my 3 year old daughter's unconditional devotion that I got through that day. I am truly blessed. And although we have a hard road ahead, I feel it in my heart that our dear angel boy will still be smiling with us 20 years from now.