Our Holland Baby

As most of you read this you may come to understand where my thoughts come from. Having a child that is 100% healthy and one with a disability I have come to know both sides of the playing field. As you read this story you will come to know how much I would have loved to have an "Italy" baby. I am jealous of those who have healthy children and I am jealous that they get to go out and do "normal" things. I have spent many days and nights crying about how much I miss just going to the grocery store when I want. I am jealous when parents take their babies home after 2 days in the hospital. I often get angry and upset when others can be happy during their pregnancy because mine was full of worry and "what if's." I love our sweet baby boy and I am truly blessed that God trusted me with a "Holland" baby.

WELCOME TO HOLLAND
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
By Emily perl Kingsley

The Glenn: Post Op. Day 2

Stockton is doing relatively well. They took out his breathing tube last night and removed his NG tube. He had a spell of atrial tachycardia and his heart rate shot up to the 200's. The doctors assume it was because his heart was irritated during surgery. They put him on a Esmolol to help control it. This afternoon Stockton was able to have his first bottle. He ate so fast that it made him fall right to sleep. He is on pain meds as needed and seems to be tolerating it well. He had a pulmonary artery line that was placed in his neck so they could measure the PA pressures. During this surgery pressure changes so much that it is very important to measure it. The nurse, Jana, removed the PA line a few hours ago. All of the nurses and doctors keep telling me how big Stockton has become. They are really impressed with his progress and that makes us very happy. One thing I wanted to mention was that Stockton had a leaky tricuspid valve that caused some blood to regurgitate backward in his heart. Dr. McKenzie, Stockton's surgeon, was able to fix that because he found a little cleft that was causing it. Dr. McKenzie sewed up the cleft and he said Stockton has NO MORE regurgitation! Well, at least we hope not. I am sure we will have many echocardiograms to really see. Setts and I are doing well. We are both really stressed but joke around to lighten our mood. I couldn't ask for a better husband.

The Glenn: Day 1

As I sit here holding my husband's hand I felt the need to share a blog post. Yesterday we showed up at TCH at 8am for Stockton's pre-op day. He was pricked for some labs in his foot then later received an IV in his left hand. Our little Houdini always wants to rip out things so we taped a small towel around his arm. Tylee was with us all day and she was such a trooper. That little girl truly amazes me. I just love her. Stockton was able to have breast milk until 3am and pedialyte until 5am. Thankfully! Usually, they can't eat after midnight. Once again, another huge reason I am pro breast milk. Those few hours make such a huge difference in his rest. Stockton went back to surgery this morning at 7am. We received an update at 8:30am that the intubation and sedation process went smoothly. Stockton has an arterial line in his neck which will help measure pressures in his heart for this surgery. Seth and his father gave Stockton a blessing last night and it has helped us feel so calm this morning. We were able to fit in an hour nap which was very helpful for two exhausted parents. We will get our next update in a few hours. Thanks for your prayers.

New Date

We are to report to TCH on the 28th of December. Stockton's surgery is scheduled for the 29th with hopes that all of his blood work comes back normal.

Postponed

I wanted to update you all real fast. Stockton's surgery was postponed. All of his blood work and cultures came back negative for any type of virus until this morning. They did two RSV screens and the second one came back positive. Apparently, our little guy has a minor case of it but it will still show up positive. Stockton is doing great except he has a light cough. During the Glenn procedure the lungs are put under a lot of pressure so they want him to be in optimal health. (Which is totally understandable.) We spent the night in the hospital thinking we were going to have the surgery and we brought him upstairs this morning to the operating room. He had an IV placed and we said our "see you soons." Stockton was on the operating table and had already been given his first sedative before they looked over his results. This test was finished last night so I am not sure how they missed it. We believe God works in mysterious ways and that this was not Stockton's time. We will reschedule in about a month. LOVE TO ALL!

The 2nd Surgery

We are definitely scheduled for November 30th to have Stockton's second open heart surgery. We will enter the hospital on the 29th and he will have a few tests done. We are full of so many different emotions and it makes us really nervous. Please keep our Stocky boy in your prayers.

THE GLENN....

We are tentatively scheduled to have Stockton's second open heart surgery on November 30th. Yes, this is right around the corner and yes, every night since we found out I have cried in a corner. I just feel terrible for him. I feel terrible that he has no choice. My heart breaks for him and the struggle that he is about to go through. He literally got out of the hospital two months ago and now we have to go back. This process is going to kill me. There have been so many wonderful moments in these last few months that I really try to hold onto them. It is so hard to go through this and I am just having one of those down days. It is so hard.

Heart Cath

I can't believe I am blogging from home. We only had to stay one night. That is seriously a miracle. Dr. Petit promised me that Stockton would only have to stay one night, if nothing went wrong of course. Stockton went in for the procedure at 9am and they were done by 10:30am. We were so glad that things went smoothly. Stockton had to be intubated for the procedure so his voice is a little raspy. Dr. Petit showed us some pictures of Stockton's heart and explained a few things. Stockton has moderate regurgitation between in right atrium and right ventricle. This means when the blood is pumped about 30% of the blood pools then finally leaves the heart. This puts some pressure on his heart and makes it work harder. They want pressure levels in that area to be about a 6 and Stockton's are measuring between 10 & 12. They were also were about his aorta narrowing. We are happy to say that it is not. Dr. Petit also told us that having Stockton wait until he is 6 months to have his 2nd surgery is not the best case for him. He said that there is no benefit in waiting. The pressures in Stockton's heart will either remain the same or get worse, they never get better. With the second surgery they usually don't have to open up the actual heart itself like they did with the first one. However, since Stockton has these high pressures they probably will cut out some more tissue to make the pressures go down.  Even though December is a busy month of holidays it is really good for our schedule. Continue praying for our little. He is such a trooper.

Here is the updated total on our insurance bill: $514,287.63
One of the pharmacies we get Stockton's prescriptions from called me today to tell me that I owed $24 for his upcoming re-fill. She tried to tell me that we had not hit our deductible. It was rude but I totally laughed at her. :)

Our Halloween

Was spent in the TCH hospital. I know! Well, on the 30th Stockton started sweating while he was eating to I got nervous. We took him to the ER after calling the cardiologist because this is a sign of heart failure. 4 days later we are home and Stockton is doing great. Everything went well and nothing was wrong. I would rather be safe then sorry. On Monday Stocky is scheduled for a heart cath so please keep him in your prayers.

10-18-2011

Stockton had an echo early this morning and he had to be sedated for it. I was so glad that they had oral sedation because I didn't want them searching for a vein. He has the smallest veins and they always have a really hard time getting IVs in him. The appointment went well and there were no changes to his medications. Stockton has been gaining about 23 grams a day, which is good, but they want him around 30 per day.  Stockton is scheduled for a cardiac cath on November 7th and the procedure with take about 3-4 hours. Usually, this procedure is a cake walk but you never know with HLHS babies. Please pray that all goes well. If the doctor need to place a shunt in his aorta then we will need to stay at the hospital over night. We pray all goes smoothly and that we come home when the time is right. This past Wednesday we also had had his vaccinations scheduled and he was such a trooper. However, the last three days he has been throwing up a lot. We changed his bottle nipples back to slow flow and that seems to be working. He is not happy about it because he has to work harder.

I can't believe he is almost 3 months old. I can't help but cry as I write this post. Stockton has become such a good baby. My only complaint is that I wish he would sleep a little more during the day. He loves to be in the action and loves getting attention. Yesterday morning he was on the verge of giggling. He is so close. Stockton just loves his big sister, Tylee. Anytime she looks at him he gives her a smile. Our little guy hit 11 pounds this week, YEAH! We are so happy. We want him to get even bigger. The bigger the better! I have been brave enough to take Stockton to the park a couple of times. He loves being outside. I walk him around in the stroller and he just falls right asleep. We love having this little man in our home and we continually gain strength from him.

Announcement

2nd Single Ventricle Visit & A Bearing Of Testimony

The appointment went smoothly and was on time. That is saying a lot considering our first visit a few weeks ago. Stockton's current medication schedule is like this: 12am Propanolol (P), Mylicon (M), 6am (P) & (M), 9am Prevacid (Pr) and Aspirin (A), 12pm (P) & (M), and finally 9pm (Pr) and (M). As of today we added one medication and we can now give the Mylicon "as needed." (Which is for gas relief.) Our new schedule is a bit better. We added Enalapril, which is a heart medication that will help his high blood pressure. The Propanolol was not doing the job so we have to give him both now. New schedule: 1am (P), 9am Enalapril (E), (P) and (Pr), 5pm (A) & (P), 9pm (E) & (Pr). The stretch between 9am and 5pm is so nice. If we have any doctor appointments or errands I don't have to carry his meds. IT IS SO NICE because some of them need to be refrigerated. 

P.S. I usually bear my testimony once a year during Sacrament services. I often feel that the Lord gives you these amazing experiences because he wants you to share them with others. I often feel that if you don't share those experiences with others that you are taking something away from them. You know that feeling that you get when you know you are suppose to go up and something is just tugging at your heart and pulling your legs to just get up to the stand? Well, that means that the Lord knows you have something to say and that something could be just what another person needs to hear that day. Last Sunday I shared with the congregation what a struggle the last year has been. The last year has been physically, spiritually and emotionally draining for me. Life as come so easy to me and all of a sudden I have hit this brick wall and trials just keep coming and coming. Most of which have been about Stockton. I shared stories where I have these casual conversations with God and I talk to him as if he was right there. It often starts when I am having a hard time or experiencing a lot of emotion. I say, "Seriously, this is happening to me now. Haven't I been through enough? Please help me." I have said this exact sentence numerous times out loud and many times during my prayers. It was probably one of the most emotional testimonies I have ever given. I continue to pull strength from those around me and I know that God only gives you what you can handle. I am hoping that God doesn't think that I can handle very much more. :) I need everyone to know that through these experiences I have become stronger, I have become a better mother, I have become a better friend and I have become more in tune with the spirit. The Lord is with you always and he continues to be by your side. I know that this experience with Stockton is a crucial part of my life and it will be forever. If I can get through this then I can get through anything, so can you. Christ knows us personally.Mosiah 4:9 "Believe in God, believe that He is, believe that He has all wisdom and all power, both in heaven and in earth." In the name of our beloved Savior, Jesus Christ, Amen.

Totals

I looked over our bank statements and we paid a total of $417.00 in just parking alone. I have tallied up our food costs and it looks like it is around $200 but that does not include the $300 plus dollars we received in giftcards. We were fortunate to get 3 meals a day for free because I am breastfeeding. Who knows how much it would have been if that were not the case? We spent about $100.00 in gas but that does not include what my mother spent in filling up our cars while we were away. The bills have started to flow in from the physicians and the hospital. The grand total for his visit is $103,381.00! Wow! Well, we already paid my $3,000 deductible and now we have to pay Stockton's $3,000. Luckily, every visit until the end of the year is free. We are so grateful for insurance!

1st Single Ventricle Visit

We went to our first single ventricle clinic visit this past Tuesday and it went relatively well. The problem was that I had a 7:30am appointment and was not see until 10am. Then Stockton's 9am appointment was pushed back to noon. It was sort of a nightmare but we had to do it. Stockton had an echo, an x-ray and an EKG. The doctors discovered that his tricuspid valve is leaking a little. (Meaning some blood flow is going the wrong way then pools then goes out the right way.) The increased his Propanolol to see if that would help. The doctors said this is a common finding but they like to see it very minimal and Stockton's is moderate. Everything but that seemed to check out. Stockton weighs a whopping 8.8 pounds. He is doing so well at home. His schedule could be a little better but we are working on it. We have another visit in two weeks.

We are home!

We have been home since Tuesday night.We are so blessed to have both our babies under one roof. We just love having Stockton in our home. We are so busy that I can't even remember what life was life with just one child. I am lucky to take a take a shower before Seth gets off of work. We will continue to update as we go to Stockton's appointments. Thanks for supporting us through this crucial time.

UGH!

I know I sound like a complete pessimist but I am really trying to pull through each day. I look at Stockton and just think about how strong he is. Well, today he actually lost a few grams so we are not being discharged. We have been told that we were going home for the last 5 days. Everyday seems to get a little bit more disappointing. Stockton will gain weight for a few days then when we are ready to go home he loses a few grams. Yes, I am talking about little grams. You wouldn't think that was a big deal but it is. He lost 30 grams today after gaining 90 grams yesterday. The doctors came in today and told us to not plan on going home until after the long weekend. So as for now my mother is coming for the day so I can have a break. Seth has been such a rock through this and I am so glad I have him. Please keep praying for Stockton. We love him!
 

Still here

Yes, we are still in the hospital. Stockton is still strong and they are just watching him. They continue to watch his weight closely. I have to tell you that it is so frustrating that the doctors tell you everyday that they want to watch him "one more night." They have said this everyday for the last 3 days. Yes, I have hit my breaking point. I can hardly stop crying and I just want to get out of here. I am a little disappointed in the attending physician and nurse practitioners on this floor. I find that they don't really look at the family's needs and just go about their day. Stockton has been progressing much better than anyone had thought but I think he will do even better at home. Sometimes the doctors wonder why he is not gaining weight rapidly but I finally told them that people bug him constantly. He is woken up from almost every nap because someone needs to do some lab or some test. I told them to just leave him alone and that I would call them when he was awake if they needed to do something. I am sure they think I have a bad attitude but I do. He is ready to go home!

Another Room

They have moved us to another room that is in the "stable" cardiac area. This is just another step to us going home! I can't believe it! The end is in sight. (Well, for this go-around anyway.) We may go home tomorrow or on Tuesday. Please pray that Stockton stays strong. We are learning to draw up his medicines and learning what his schedule is. We have called in his prescriptions to the pharmacy and we only have a couple more things to be done. Thank you for all of your support and continue to pray for him.

DAY 27

I can't believe that this Saturday marks 4 weeks that we have been in the hospital. I have to tell you that the last few weeks have just blended together in a daze. Sometimes I don't even know what day it is. Stockton is improving with his eating habits and seems to be on a bit of a schedule. He has maxed out at 61cc but continues to remain in the mid 40's. We came into the hospital with two other hypoplastic left heart babies and they have done really well. One of them has only been here 3 weeks and he was discharged today. We are so happy for their family and we hope to keep in touch with them. Stockton was a little fussy last night but has seemed to catch up on his sleep this morning. He is only waking up to eat every 3 hours. Stockton's acid reflux medicine has seemed to really help. THANK HEAVEN! The poor little guy was just getting too upset after eating. This morning he pulled out his NG tube, again, and they replaced it. The doctors are going to take it out tomorrow permanently. YEAH! Our mornings are quite busy and sometimes they can get a little draining. Today we had visits from just about every person in the hospital: occupational therapy, x-ray team, the Attending Physician, our nurse practitioner, the phlebotomist among many others. Mornings are so draining but it's nice to know there is end in sight! Hurray Stockton!

A litte frustrated

As I have gone through my life I have had moments where I pray to God and tell him that I just can't take anymore. Many of these moments have been in the last few months and I am sure more are in my future. I look at what I have gone through and then I think about Stockton. The little guy has such huge obstacles to cross and was born with an imperfect body. Lately, has been quite the struggle for him. Stockton is up to eating 40cc which is exceptional. (Sometimes more but sometimes less.) Last week they started giving Stockton some extra calories in his bottles. He seemed to be tolerating them well. Last Friday after he pulled out his NG tube they replaced it on the other side. Stockton has really not been the same since then. I am not sure if the NG tube is bothering him but something is. They changed the brand of calories he is getting so hopefully he wouldn't be so fussy after eating. Well, that didn't work. We were giving him gas meds and the poor little guy would just scream after each bottle even though he was so hungry. Sometimes he would get so upset he would just throw up his entire feeding. Stockton is now on an acid reflux medicine and we will see if that helps. I just get irritated that there are so many factors for why he would be fussy. Yes, he could have acid reflux, but what about the new brand of calories? What about the NG tube, that could be bothering him. What about the doctors thinking that he needs all these calories. Have they looked at my husband and I? We are little people. Tylee has never been in the upper percentile for weight. We are lucky if she is in the 30%. There are so many things going on and I am to the point where I think the hospital is doing more damage than good. I just want to go home and feed Stockton with plain breastmilk. He was doing great on it before. With these heart babies they are so worried about weight that I just get bothered. I just want Stockton to be ok and not be bothered all the time. The poor little guy has gone through enough in his first 3 weeks of life.

The Last 7 days...

We have been in the step down unit for a week now and Stockton is doing really well. The doctors changed his NG (nasogastric) tube feeding to bolus feedings each day. This means that he is getting 2 ounces in a short amount of time so that he can start feeling hunger in between. I told the doctors yesterday that I wanted to start feeding Stockton more bottles. He now starts each feeding with a bottle and we put what he doesn't finish in his NG tube. Stockton started getting 60cc (3 oz.) but it was just too much for him. I noticed that with the last 10cc that he would get fussy and sometimes even spit up. I changed his feedings to 50cc and the doctors agreed that it was better. It is very important for heart babies to gain weight and Stockton has been doing really well. We put less than a teaspoon of formula in my breast milk so they can boost his calories. On Tuesday night Stockton managed to tug on his NG tube a little so they just put it back down. Then on Wednesday he spit it completely out of his mouth. They replaced it a few hours later down his left nostril this time. Stockton has his stitches taken out of his belly from where the dialysis and chest tubes were. They are healing really nicely. The nurses say that he is the loudest crying heart baby that they have heard. They took Stokcton off telemetry and they told us they will take out his PICC line on Monday. HURRAY! He has had that stupid thing in since August 3nrd. (The same PICC line that caused his body to crash. We hate that thing.) Stockton still can't take his entire feeding by mouth but it up to taking 30cc at a time. We are so proud of his improvement.

 We have started the discharge process but we will most likely be here another week or so. They are very careful with Norwood patients and want to take things very slowly. They give us a little information each day. The doctors and nurses basically told us to be hermits for the next few months until his next surgery. They gave us a huge list of "not to do's" and important contact information. For example if he has diarrhea or is throwing up and get dehydrated then we need to bring him to the hospital and he bought himself 24 hours on IV fluids. They said any sickness he gets can push his next surgery back 4-6 weeks. We are not to take him to any public places especially in the next 4-6 weeks. )No church, no grocery store, no family reunions) They also told us to do our shopping during off peak times and to change our clothes once we got home and then wash our hands. This is making us second guess letting Tylee go to nursery. We are not to let children touch or hold our baby and the recommended not to have any other children in the home. We know many people want to see Stockton but that is just not possible. We can't have every person come over and shower nor can we trust where they have been. We basically just need to protect this baby from everything we can. The docs said that it is so important to keep this little guys healthy that it would be best to limit how many times we open our front door. They really are so worried about this that they try to scare you straight because it is so important.

On Monday night I was going to stay at the hospital by myself. This was going to be Seth's first night away since Stockton was born. I started to feel a little chest pressure so I took some Tums to see if it would go away. Well, after a few more minutes I realized I was starting to have a gallbladder attack. Ugh! This would be my third one now. I didn't have my pain medicine that the doctor prescribed me so I called my Mom and Seth. My mother said she would stay the night at the hospital so I could go home. I can't tell you how painful these are and how thankful I am for pain medication. I slept for 6 hours straight which is the longest stretch in almost a month. I am so thankful for my mother and Seth. My Mom has helped us out more than she will ever know. Seth continues to be the stronger one of us and I am happy to lean on him. I am so grateful to be apart of such an amazing family.

Step Down

We are officially blogging from the cardiac step down unit! Yeah! We were able to start holding Stockton again on Wednesday. It was so nice to hold our baby after a long week of just looking at him. I can't believe things are moving so fast. They took us to the step down unit yesterday and it is so nice to stay with him during the night. The past 2 weeks we have been staying at the Ronald McDonald House which has been such a blessing. The doctors are still worried about his kidney function. Usually, they like to see kidney function post heart surgery at 50-60%. Stockton's kidneys are only working about 25% but seem to be doing better everyday. Stockton seems to have his nights and days mixed up. Our first night with him left me exhausted and I didn't sleep hardly at all. He is still getting continuous tube feedings but I got to feed him a bottle today for the first time. The occupational therapists are trying to build his mouth muscles because he has never received anything by mouth. He is doing such a great job and they are really impressed. Bottle feeding is our only obstacle from going home. I can't believe it. I am so scared to bring him home. Sometimes I get really frustrated with the way they do things at the hospital. I have really started to speak up about how I want things done. I get really irritated when they don't cluster their activities. Just this morning Stockton had a EKG, a echocardiagram, an x-ray, 2 doctors visits, a PICC line specialist visit, occupational therapy, a bath and a few other things. From 4am until about 9:30am he was bugged every half hour and it was getting really irritating. I finally told them that they needed to start clustering stuff because it really pissed me off that they would wake him up every time he had just fallen asleep. You can't forget that the nurse is taking his vitals every four hours and random alarms are going off. I think I got a little short with people today but I don't care. Another thing I mentioned to them was about some adhesive remover. Sometimes the staff will just take off his leads that are stuck to his skin without using the adhesive remover. HELLO! Obviously he is crying and it hurts him. That drives me crazy! All of his tests he took today came back normal and the doctors are really pleased. Dr. McKenzie came by today and he said Stockton looks great. I love Dr. McKenzie. He is truly a miracle worker. Well, that is all for now. We just want our little guy to start gaining some weight!

Why the name Stockton?

Well, I am asking myself the same question. I think that boy names are rather hard to come up with. To be honest I like more traditional names like Zachary, Steven or Benjamin. I also pondered the names Ryker and Mason. Before Seth and I ever got married I would tease him that he would probably name his child Michael Jordan, John Stockton or even Karl Malone. During this pregnancy we joked a lot about calling the baby Sloan (after Coach Sloan) and we started to joke about calling him Stockton. There was no way I would ever give into that, right? I took a trip to Utah and I joked with family and friends about the name. The name kind of started to stick and that is what I started calling him when he was in my belly. Seth actually became a little hesitant and we both became rather unsure of what to call our baby boy. Well, when I went into labor Seth put up a few names on the dry erase board. Stockton just seemed to be his name.When Stockton was born he wasn't a Steven or a Zachary, he was our baby Stockton. Who would have thought that I would name my son after my husband's favorite NBA player? Not me, that's for sure. Seth is overjoyed about our son's name and I am happy that he is happy.

Tuesday, August 9th

Stockton seriously is a little trooper. Our little champ was taken off dialysis yesterday and they removed the tubes out of his stomach. They also removed his urinary catheter. YEAH!!! He no longer has any tubes! He did really well on the high flow oxygen yesterday so he is on a normal nasal cannula now. He also had his first feeding today! He will eat through a nasogastric tube until they feel he can eat orally. I got to change his diaper today. We are so happy. Love you Stockton!

Monday, August 8th

Today Stockton is doing rather well. Like before we are taking a few steps forward and a couple steps back. Stockton is stable and wakes up whenever he wants to. He is off of dialysis and his kidneys are perfusing very well. He finally had his umbilical line taken out today and we are so happy. They have told us since last Thursday that it would be taken out. Stockton has had some problems with tachycardia. His heart rate shoots up to 180 or so for just a minute then comes back down. His blood pressure has also been borderline high but they have been giving him some medicine to keep it down. The cardiologists met today and decided that Stockton would be put on Propanolol to keep his heart rate and blood pressure down. Unfortunately, this medication he will need to be on until his next surgery in a few months. They placed a nasogastric tube in him today so that they could administer the Propanolol. It is kind of sad to think about because that medicine is the first thing that his stomach has had in it. They also said that he may be able to start feedings tomorrow! Stockton has been doing really well on the CPAP machine and we are going to try the high flow cannula again tonight. We pray and hope that he can go to a normal cannula tomorrow. He really hates the huge prongs up his nose. They were also able to take an IV out of his foot. We are so blessed to take these few steps forward but we still have a long road ahead of us. Please pray for him and keep him in your thoughts. I truly think we all gain strength through positive thinking.

PICTURES!

Probably a picture of me in between contractions.

Life is easy!

Welcome to the world tough guy.

Daddy got to change the first diaper.

The first time I got to really hold our son.

Seth's first time holding Stockton!

We love you little guy!

*Due to the content of his post surgical pictures I don't feel comfortable posting them. If you weren't truly prepared to see them then you would be overwhelmed.

Introducing Stockton Seth Watson!

My Labor
Mr. Stockton was scheduled to come into the world on August 1, 2011. We felt comfortable having my mother fly in on the 29th. I was even a little hesitant to have her come 2 days early because I didn't want to waste her time. Luckily, she was here! Around 9:00pm on the 29th I was having some minor contractions. They were pretty consistent so we decided to go to the hospital. Under our circumstances I wasn't sure how fast I would go into full labor so we drove 40 minutes to St. Luke's. Once again they said I was 1-2cm dilated. I was so worried that he would come and we wouldn't have time to get to the hospital. They sent us home and I didn't have any contractions on the way home. Once we walked into the house I ate a little food and I took a little shower. We got home around 12:30am so we were really tired. That night there happened to be a bull frog outside of our window. It was so loud. It kept me up and my contractions started again. I did not sleep one bit and my contractions were every 15 minutes. I did not want to wake Seth because he was so tired. I took a bath and they seemed to calm down but once I got out they started again. I went to lay down in bed because I was just so exhausted. I just closed my eyes but then a contraction would come. I got up and decided to just get ready for the day at 5am. Seth woke up around 8am and my contractions began to come a little more frequent. Once Seth was done getting ready I told my Mom that I guarantee this baby will be born by 4pm today. My contractions were 3-5 minutes apart and I told Seth that we had to go once again. We got to St. Luke's about 9:30am I was dilated to 6 centimeters. They admitted me and they asked if I wanted an epidural. In Texas they have to check your blood before you get an epidural. The anesthesiologist decided that he would just give it to me early. I was so thankful. The epidural started to work and I could feel my legs getting a little numb. By this time it was about 11:30am and I was just waiting to be completely dilated. Dr. Kirshon, my OB/GYN, was not on call so one of his associates was called to deliver me. Around 1:30pm I started to feel my contractions come back. I called the nurse and the nurse anesthetist came and gave me more pain medication. He told me to call him in 30 minutes if it didn't work. Well, I continued to feel my contractions very strongly because they added a little pitocin to my IV. He gave me another narcotic and another medication through my epidural. He told me that this was the most he could give me in this time frame. The pain did not stop so they stopped the pitocin. They did a few tests on my body to see where the epidural was working. I could not feel hot/cold on my legs, arms or chest. I could feel my contractions and all of the pain down below. I have to tell you that this was excruciating. I seriously thought I was going to die. They told me that my body created a "wall" against the epidural and it just wouldn't work. I was so scared that I couldn't do this naturally. Around 2:30pm I could feel the urge to push. The doctor was no where around and she was not even in the building! Can you believe it? I literally can't remember what I was saying but I remember yelling and screaming at all the people in the room. I could laugh about it now but I was telling everyone to "be quiet" or "shut up." Around 2:50pm the urge to push just became so strong. We were all just waiting for the doctor to come and I kept telling them time after time that I had to push. I couldn't wait any longer. The nurse let me begin to push and the doctor came in, FINALLY! Stockton was so low that I only pushed for 5 minutes and he was out! Relief! They let me hold him for just a couple seconds and they brought him out of the room. He was beautiful, he took my breathe away. He is amazing. We just love him. They immediately put two umbilical lines in so they could start with his prostaglandin (PGE). After they were done getting him all set up they told us he was 7.7 pounds and 19 1/2 inches long. They brought him back to me in an incubator and he was so calm. He just looked at me for what seemed like forever. They quickly took him and Seth up to the cardiovascular ICU at Texas Children's Hospital. I was able to see him a few hours later and he is so beautiful. We are so grateful that he is finally here and we can share these precious moments with him. We love having a son and we are over joyed that he is doing well. We love you baby Stockton!

Post Op Day 5

Tomorrow I am planning on updating this blog in detail. Today we are going to spend some time with our daughter and I am thinking about sleeping at home to catch up on my sleep. Last night we went to dinner and came back around 10:00pm. Stockton's oxygen levels were starting to head into the mid 70's so they tried to reposition him to see what was going on. Stockton became really agitated and his oxygen levels dropped to the high 40's. This was very scary because his lips and body started to turn purple. The respiratory therapist put him on high flow oxygen and they used the ambu bag to bring him back to the 90's. With Stockton's heart condition a normal oxygen saturation should be around 85. Stockton responded very well to the oxygen until early morning. The doctors put him on a CPAP machine and that is where he is today. They did an x-ray of his lungs and noticed some fluid build up around his lungs and they also discovered that his left lower lung lobe had collapsed. Since they discovered this they have turned him and the fluid and lung have since re-expanded. We were supposed to start nasogastric tube feedings today but we have been set back. Our goal is to get him back to the nasal cannula and far away from being intubated. Ugh! This is truly a roller coaster. All of this is up to Stockton and up to his precious body. We continue to pray for him and we hope we are headed in the right direction again.

Doing Well

Stockton continues to do very well. He is off quite a few medications and we are trying to get him off the breathing tube. They have done a few breathing trials and he is doing really well. The concerns we have are about his kidneys but he is on peritoneal dialysis which is normal for a post open heart surgery. They will continue to monitor them closely and the doctors said that they will rebound soon. We continue to be at his bedside almost all day. We have caught up on some much needed sleep and we are doing well. Stockton is such a trooper and he has started to open his eyes. He is rather sleepy but when he hears Mommy's voice he tries to become alert. We sing to him, talk to him, read him books and touch him as much as we can.

Our baby is here!

Wow, I have never been so physically and emotionally drained in my entire life. We know many of you are concerned and we want to update you all. We literally have not had any time to sit down since our baby boy was born. Here is a quick update. As I have more time I will update each day one step at a time.

Stockton Seth Watson was born on July 30, 2011 much to our surprise. He is the cutest thing ever! We were waiting to do the surgery until he was about 7 days old. Well, Tuesday morning he took a bad turn and was in critical condition. We literally pleaded and cried to Heavenly Father to save our baby. He had some fluid around his lungs that was making it hard for him to breath. This was not his fault. The fluid was IV nutrition that was inserted through a PICC line in his right arm. So the doctors intubated him and that is where he stayed the rest of the day. Because of this episode we were scheduled for surgery today, Wednesday. He went in this morning at 8am and we just got news at 3:30pm that he is out. The surgery went perfectly and there were no surprises. We have not been up to see him because it takes awhile to get him all set up and cleaned. We felt calm and comforted by our Heavenly Father all day. I can not tell you how much the Lord has helped us these last few days.

We know many of you are concerned and want more information. I would love to talk or e-mail each one of you but that is just not possible. When I have a minute to myself I am running to the bathroom or going to downstairs to pump. I love you all and I am so grateful for all you. Stockton is a trooper and we feel so blessed to have this angel in our lives. Keep praying for him and our family. Thank you.

*We have so many pictures of our little guy but at the moment I don't have my camera cord. 

LAST OB/GYN Visit!

I can't believe we are finally here. We have reached the end of the pregnancy road. Can you believe it? There really has been no drastic change in my progress. I am 1-2cm dilated and 70% effaced. Dr. Kirshon is planning an easy delivery and we are hoping for the same. Dr. Kirshon takes care of notifying all the doctors and teams that will be around for the delivery. We were told to call labor & delivery at 5:30am Monday morning and see if they had a bed for us. They most likely will have a bed ready for us by 7:00am but we are not promised one. The L&D nurses just have to see how busy they are and then they will let us know. Please continue to have positive thoughts and keep us in your prayers. The next post will be about the delivery of Baby Boy Watson!

This is why I love Texas Children's Hospital

First Pediatric Artificial Heart

click above to read this story

It is getting close...

Feeling overwhelmed...

2 weeks left...AHHHHH!!!!

So much is going on in my brain that I can't even comprehend that our little guy will be here in no time at all. I am so excited to meet him. I met with Dr. Kirshon today and I am dilated to 1cm and 70% effaced. (Which doesn't mean much.) I am still scheduled to be induced on August 1st in the early morning hours. I feel good, the baby looks good and I am sure going to miss being pregnant. I have really taken advantage of every little kick he gives me and every little nudge that he gives to my tender gallbladder, OUCH! I am really nervous about him breathing on his own and doing everything by himself. We still haven't decided on a name but I know it will come to us. My last and final visit is July 27th!

36 week OB appt.

Today we met with Dr. Kirshon for my 36 week appointment. I meet with him again next Monday. We had an ultrasound done and besides the heart issue everything looks great. Dr. Kirshon said something about the bones being mature, meaning that the baby is ready. The little man is estimated to be 6 pounds 9 ounces. 54% percentile for a 36 week old fetus. The baby is measuring a bit further along, not by much though. It is set in stone that August 1st will be my induction date. That really makes me nervous because I have so much to plan! He checked my cervix and I am not dilated. He did not mention anything about effacement. That is all for today. :)

Fast Sunday

We will be doing a family, friends and ward fast this Sunday, July 3rd. Please add our baby to your fasting prayer. We appreciate all of you and your concerns. We are surrounded by a wonderful group of people.

33 Week OB visit

There is not much to post about except I had my 33 week appointment today. No news is good news, I guess. The baby's heartbeat was 142 and sounded strong. While we were listening to the baby's heartbeat I asked if it sounded different than a healthy heartbeat. He said that the heartbeat sounds the same as a healthy baby. He said you could never tell something was wrong my listening to just that. I am up 15 pounds this far and I am back on track for weight. Haha, I told him I gain all my weight at the end of pregnancy and now my doctor believes me. :) 6 weeks from today this little one arrives.

I no longer have any more cardiologist appointments. After months and months of appointments I am looking forward to the break. I have my next doctor visit July 13th and  I will be 36 weeks 2 days pregnant. We will meet weekly after that.

TCH Visit

Seth and I woke up early on Thursday to start our day long visit with Texas Children's Hospital. I forget how bad traffic can be and I ran as fast as I could to my appointment which happened to be on the 20th floor. While Seth parked the car I got signed in. I immediately noticed all the kids in the room with patient wrist bands that matched mine. I got a little curious and began to tear up. Luckily, Seth came up the elevator and was there to hide me. We were called back to see Nancy Ayres to do my fetal echocardiogram. Once again we were told things that we have never heard before. Sometimes I wonder if we are simply just blocking things out. Dr. Ayres is amazing and I wish we would have seen her since the very beginning.

The picture above shows what an HLHS heart looks like. I try to make it easy for you all to understand. I added an X over the atrial septal defect because this is still a concern for us. Normally blood is flowing from right to left but in our baby the blood is flowing from left to right through this defect. You can see the arrows that show the blood flow. I also placed an O over the aorta. Dr. Ayres said that normally an aorta is 10-12 millimeters but in our baby it is only measuring 2 mm. (I can't remember if they said centimeters or millimeters. I am pretty sure it is mm.) These are two more obstacles in our way and we left the appointment, once again, upset and confused.

After the visit with Dr. Ayres we met with the neonatology team. We met with Dr. Moise and she informed us of what will happen once we deliver. She explained to us that once Dr. Kirshon delivers the baby they take him away and stabilize him. They do what the cardiac surgeons ask them to do. They will most likely place an IV or two through his umbilical cord to start administering medicine. They will check him physically and make sure that nothing else seems to be a problem. The neonatology team is only there to stabilize the baby and once they do that then they turn him over to the cardiac team. The cardiologist then will check the baby and see what interventions need to be done. When we were first told about HLHS they said that the baby usually has open heart surgery around the 5th day of life. We were informed that because of his narrow atrial septal defect that he may have to go have a heart catherization immediately after birth. They would widen this defect by placing a balloon there. They also informed us that he may have his open heart surgery within 24 hours of delivery. The doctors informed us that all of this won't be decided until his birth. It will depend on his oxygen saturation levels.

After the neonatology visit we met with the cardiac surgeon. Dr. McKenzie said they TCH performs this surgery about 20 times per year. The Texas Children's Hospital has a great success rate compared to other hospitals in the country. They have an 88% success rate which is about 8% higher than we were told in the beginning. This is comforting news to us. We were also informed that I will be induced on August 1st or 2nd. I am not a fan of inducing but there are many advantages in our circumstance. I am just worried about having a C-section but they assured me that that was the last thing they want. A vaginal birth helps clear fluid from the baby's lungs so that is what we want. It will help the baby breath easier after birth. The neonatology team, cardiac team and OB team will all be informed about my delivery. They will all be present and accounted for rather than going into labor on my own and waiting for the team to drive into town and get ready. They also informed us that by delivering on a Monday has its advantages. All of the teams are fully staffed Monday-Friday so that our baby will have at least 5 days with the full team before the weekend. This made Seth and I feel much better. We are praying for a successful and easy delivery.

Throughout our day we were placed with a fetal cardiac coordinator, Carmen Watrin. She has been with TCH for 25 years and has been in the cardiac center for 15 years. She is our personal "go-to-person" throughout this process. She is the person that guides us through this process. She will place us at The Ronald McDonald house on days that we need it, she comes with us to all of our appointments, she coordinates the delivery with all of the doctors and she even will be my personal informant after I deliver the baby and he is taken away. She is truly fantastic and I am so glad that she is good at her job.

After delivery I will be stay at St. Luke's to recover. Once I feel good enough to get up and into a wheel chair they will let me go see the baby at TCH. (The hospitals are attached.) Seth will go with the baby immediately after delivery and stay with him. He will take a few breaks to come see me but they want someone with the baby for at least 6 hours after the delivery. I will recover in the hospital for 2 nights then I will be discharged. Our baby will get his first surgery sometime that week and he will be put back into the cardiac ICU. Once the baby is well enough he will go to the cardiac acute care center. The acute care center (ACC) is great. We get a private room with our baby and we can sleep there. This is a great advantage for us.

At TCH they have a milk bank as well. They have pumps for you and they mark and freeze your milk until you go home. This was one thing I was worried about. I am very happy with the facility and the way they take care of you. One of the downsides of the hospital is that you have to pay $13 a day to park. We are thinking about getting a month pass because it will get really expensive. When we stay at the Ronald McDonald House the parking is free.

I can't think of anything else that we were told. It was a very long and exhausting day for the both of us. We pray and hope for the best.

Tomorrow...

Tomorrow is the big 9am-5pm appointment.

9am: Echocardiogram with Dr. Nancy Ayres

11am: Neonatology consultation with Dr. Alicia Moise

1pm: Congenital Surgeon consultation with Dr. Emmett McKenzie

3pm: Tour of Heart Center @ TCH and St. Luke's Labor & Delivery Floor

It is going to be one exhausting day!

Medical Technology

As I thought about this weekend it reminded me that it was Fast Sunday. For those of you that don't know what that is then I will share it with you. It basically allows the members of the ward to stand up and share their personal testimony of our gospel.

A few months ago I shared my testimony in church and I was overwhelmed with the spirit. I could have blabbed about so many different things but one thing I brought up was that I was thankful for medical technology. I knew I was pregnant back then but I didn't know the circumstances of our little boy. As I went through nursing school I often thought about how awesome God was to give us the intelligence to provide us with such technology. I know that doctors and medical staff have studied for centuries about the body and the things that can go wrong with it. As I worked in the hospital environment I couldn't count how many lives were saved by the use of this medical technology. It is truly miraculous. I never knew how much my testimony would grow about this certain subject.

As time has passed we have had countless doctors say that when they went through medical school HLHS babies would not survive. The medical technology was simply not there. These precious gifts would pass away in a few short days and their families would be left devastated. In the last 20 years research for HLHS has really improved and so has the technology. The surgeries that are performed are miracles. I feel that the doctors that do these amazing surgeries have hands from God. They have studied and studied these procedures and with the advancement of medical technology they have discovered ways to keep HLHS babies alive. Can you believe this? I have always thirsted for knowledge and I am so grateful that I can continue learning. I am so grateful that I live in a time where knowledge is power. I am so thankful that God has placed these special doctors and this technology before us. I am so grateful He gave us the knowledge and power to strive for things and to make goals. I can not express to you how much I am grateful for knowledge. I never knew that his knowledge was going to help save our little boy. I can not explain to you how thankful I am that I know that this little boy is coming to a wonderful home where his mind will be challenged. I can only hope that our little boy may give doctors more answers to the things they have been searching for. I am so grateful to have the opportunity to have this sweet baby boy. I am so thankful to be apart of his life whether it be long or short. I know that I am going on and on about this but I am just so thankful.

I have my days where I still break down in the shower or during a special moment in church. I still have those days when I wonder why God chose us. I still have moments when I cry at the drop of a hat. I still pray for a healthy baby boy every night. I still wonder if I can pick a name that will be suitable for such a sweet boy. I still have days that I just cry and cry but when Seth comes home he would never know. I still spend hours online researching HLHS and read stories about other patients. I still have days that I thank God for rewarding me with such an opportunity. Does God really think I am strong enough for this? To be honest, I know I am strong enough and prepared for this opportunity. I can not explain the calmness that I get when I think about my son. I can not explain what it feels like to know that this little spirit will be here in just 9 short weeks. My life is going to change forever. I can only end this by saying that I know God lives. I know that The Church of Jesus Christ of Latter Day Saints is the true church. I know God has a plan for me and I know that this baby is coming to the right family. I know that I will forever remember how I feel in this very moment and remember that I was strong. With Heavenly Father by my side I know I can do this. We can do this. In the name of Jesus Christ, Amen.

29 weeks/OB appt.

We met with Dr. Kirshon today for a follow up ultrasound. He said everything is measuring well and that the baby is growing well. The baby weighs approximately 3 pounds 6 ounces. I went in a little early for my glucose test and drank about 5 ounces of what seemed like orange Kool Aid. Dr. Kirshon is not as personable as all of the other OBs that I have visited. I swear he forgets who I am every time I go in. I think it clicks in his head when he reads that our baby has HLHS. We will meet with him every 2 weeks until I am 37 weeks then it will be weekly. We are a little worried about my weight gain. I have only gained 9 pounds this far but with Tylee I gained all my weight at the end so I am not too worried. I just need to make sure that I gain at least one pound a week until the birth, if not more. After my ultrasound I went back down to the lab to have my blood drawn. I haven't received a call yet so I am assuming I passed the gestational diabetes test. I am past 28 weeks so it was time for another Rhogam shot. I can't believe this pregnancy is going by so fast. This little guy will be here before we know it. Next week I have the 9am-5pm appointment at TCH. We were able to fit all of my visits and the hospital tours into one day.

June Appointments Set

I finally made our appointments for the month of June. We will have another echocardiogram done at Texas Children's Hospital. This will not be done by Dr. Falkensammer but it will be by the same group of cardiologists. I will be around 31 weeks during this visit then I think I will have only 1 more before delivery. We also made an appointment with a neonatologist. He will explain to us (again) about our baby's heart condition and let us know what to expect after delivery for the baby only. We made an appointment with a surgeon, FINALLY, who will lead us through the baby's first surgery and let us know what to prepare for. We were told that this is a consultation appointment and that he may not be the heart surgeon operating on the baby. Our last and final appointment we made was for the hospital tour. We will take a tour of TCH and the cardiac floor the baby will stay on. I am relieved to finally have all these appointments. They wouldn't let us make any until I was in my last trimester. So, here we are, 3rd and final trimester.

Cardiac Visit 5/6/11

We had an appointment with Dr. Christine Falkensammer today and it went relatively well. Usually, the ultrasounds take about 30-40 minutes but today it was only 20 or so. After about 15 minutes it actually starts to hurt. He is a very active baby so they usually have to push on my stomach to get a clearer picture but luckily today that was not the case. Once we were done Dr. Falkensammer explained the whole HLHS process again. I think she likes to do this because she can answer any new questions that we may have. We were worried about the size of the baby's foramen ovale but it has continued to remain the same. We didn't want it to get any smaller. From the 1st to the 2nd visit the f.o. had actually improved in size. They call the small opening a restrictive atrial septum. We talked about the 2 openings of the baby's heart; the ductus arteriosus and the foramen ovale. The ductus arteriosus usually closes shortly after delivery. We need the d.a. to remain open until his first surgery so they will administer Prostaglandin to help keep it open until then. The foramen ovale usually closes around 3 months of life but with an HLHS heart they will use this opening to help blood flow for the rest of his life. They will make his f.o. a permanent pathway for blood to flow between the right ventricle and pulmonary veins.

I find that it is easier to explain with a picture. I have labeled the formamen ovale and the ductus arteriosus in orange. You can also see that our baby's left ventricle is almost non existent.

Once her explanation was over she reiterated that all the babies she has dealt with make it through the 1st surgery. They usually lose the babies that have chromosomal problems which our baby does not have. She then told us, again, that they lose most babies between the 1st and 2nd surgery. 20% of babies pass away during that time from blood clots or other problems. We are trying to stay positive and think of the 80% that make it to the 2nd surgery between 3-4 months. After the 2nd surgery the chances of losing our son are very minimal. I don't even want to know how much sleep I am going to lose by checking on him every 2 seconds. She also explained to us that there has not been any long term research on HLHS babies so it is still a case by case basis. Around 20 years ago they started saving HLHS babies and performing these miraculous surgeries so in the medical world this technology is still new and risky.

I enjoy going to these appointments only because it helps us get a better look at what we need to prepare for. The hardest thing about these appointments is dealing with reality. We live a normal life for a couple weeks then we go to these visits and we are reminded time and time again. I stopped reading my Pregnancy Week by Week book because it gets depressing. Every week they tell you what the "norm" is and it gets too frustrating. On the other hand we are doing extremely well. There has been less tears, less emotional stress and more praying going on in our home. Seth and I will never be prepared for what is to come but we pray to be strong. We take each day at a time and sometimes I really forget about all the stress. The hardest part about this is choosing a baby name. Ugh!

26 Weeks

I met with Dr. Kirshon today for my 26 week appointment. We didn't really discuss anything out of the ordinary. We just confirmed that I will be delivering at St. Luke's Hospital. Apparently, Texas Children's Hospital actually owns the Labor & Delivery floor over there. Dr. Kirshon will only deal with the delivery of the baby and then I will have follow up check ups at 2 and 6 weeks post delivery. They have a bridge that connects both of the hospitals and they said I can visit with the baby almost any time. Next time I go see Dr. Kirshon I will have my glucose testing, another Rhogam shot (RH negative) and a follow up ultrasound. I enjoy the ultrasounds with Dr. Kirshon because they have the 3D imaging so hopefully we can get more pictures of this little guy.

Foramen Ovale

As I discussed at the very bottom of this blog our baby has narrow foramen ovale. If it were rated on a scale of 1-3 his would be a 2. It is not the best but not the worst. A complete zero would mean that it is completely closed. (The f.o. helps blood flow in utero.) We have an appointment scheduled with the cardiologist on May 6th. I will be 26 weeks 5 days pregnant. At the Boston Children's Hospital they perform an intrauterine procedure that would place a balloon in our baby's f.o. that would help open it. You are only a candidate for this procedure up to 28 weeks of pregnancy. So please pray that this part of our baby's heart stays open and that it does not get more narrow. The last 2 check ups have been the same and there has been no more narrowing so our prayers have been heard. Let's just keep praying about this and thinking positive. Thanks for all of your support.

Rooming In

Once I deliver our little guy he will be taken to Texas Children's Hospital. The hospital I deliver at is right next to it and I can walk over there when I feel up for it. I am assuming I will stay in the hospital for at least two days so that I can kind of recover and relax. (I'm not sure how much relaxing I will do.) We have been a little worried about where we would stay when our baby was going through this process. We looked into hotels and the Ronald McDonald House. There are actually 4 Ronald McDonald Houses in Houston. At least one of us has to stay downtown to be with the baby. Our doctor contacted us and said that on the cardiac floor they actually have "room in" accommodations for parents. They want the parent's to be as involved as possible in the care of the baby. They also use this time as a teaching opportunity for parents. We are so thrilled that they will have room for us and that we don't have to leave the hospital. I have heard that taking a few breaks is really needed so I am hoping some of you will want to come meet me for lunch or dinner. Any takers? :-) This is one less thing we have to worry about.

Pictures of our little man

This one is my favorite.

IT'S A BOY! When the doctor showed us this picture Seth said, "That doesn't look like Tylee's." I chuckled a little bit.

Our babies little foot.

A Month's Worth

Who would have thought that in one week of doctors visits we would have hit our $3000 deductible? So far to date we have been billed $13,451.01!!! They don't call them "Million Dollar Babies" for nothing. The photo below shows what a month is like in the Watson home. All of my appointments from just mid March to May 5th. (One card is for Tylee.) Does anyone want to go to one for me so I can stay home? :-)

Faith Perfected

"When someone has an ailment or an illness and they are healed as the result of a blessing, their faith is being strengthened. But for those who aren't healed but continue faithful, their faith is being perfected. The first is a faith-promoting experience. The second is a faith-perfecting experience." -Melissa Merrill (Ensign)

From the beginning...

When Tylee was 18 months the thought of being pregnant again started to appeal to me. I was so baby hungry that I couldn't stand it. Our neighbors had a 6 month old, Lyla, that I wanted to hold and cuddle with all the time. It also was a little hard because we put Tylee in Nursery at 20 months. Can I really enjoy church and my meetings? That thought was just crazy to me. Seth had started a new company and that meant no health insurance, so we waited. When summer rolled around I truly enjoyed being with friends and playing with Tylee. I wanted to have a summer with her that she would enjoy. As a first time Mom I thought she would remember this first summer in Texas and I wanted it to be memorable. Well, as fast as summer ended I quickly found out that that she'd forget just as easily. Once July came around Tylee turned 2. I definitely wanted a baby now! We often looked over our finances to see if we could pay for a pregnancy/birth out of pocket. We decided that no matter what our finances were that we would make it work. We then recalled a talk that someone gave about preparing for a family. All the reasons not to have a baby were selfish reasons, mainly money. We decided to put our future in Heavenly Father's hands and start trying. July came and went, NOT PREGNANT! I thought the beginning of April was perfect for a baby. With Tylee I got pregnant the 1st month so for me this was a little discouraging. August, not pregnant. September, not pregnant. I definitely started seeing a pattern. October, not pregnant. By this time I was consumed with taking pregnancy tests and using ovulation tests. I was obsessed with becoming pregnant. I know that some of you have had a very hard time getting pregnant and my journey was nothing compared to yours but this literally crippled me at times. Ok that is it, an appointment for a fertility specialist was in the works for January 2011.

The test: We flew to Utah to spend Thanksgiving with our families. It was the best 2 weeks ever. We also were taking some of our salesman on a cruise to Mexico on the 29th. We were in California staying with my sister, Courtney. Remember, I said I was obsessed with taking pregnancy tests. I took one, a week prior at my parent's house, not pregnant. I hate those 2 words. I still had packed one more pregnancy test, my last one. After buying the really expensive kind for months and months I decided to change it up and purchase 7 or so at a time from the dollar store. This would cure my obsession and be less expensive right? Well, I went into Courtney's bathroom and like every other test I prayed. We were leaving for the cruise that afternoon so I thought this was it. Well, the stupid dollar test gave me a faint line, a really faint line! It was so faint I thought I was imagining it just like I had done with so many others. So at 7am I jumped in our rental car to go get another test. My little brother, Colton, ran out and asked if he could go with me. Meanwhile, I have not said anything to anyone about why I was going to the store. Could I really buy a pregnancy test without Colton knowing? Well, when we got to the drug store the pregnancy tests were behind locked glass doors. Are you serious? They had to go get a manager to open it and get an employee to escort me to the check out. Why on earth do they do that? Well, Colton got up to the check out and quickly noticed what I was buying. He let out a few laughs and said, "Are you seriously buying those?" He made me promise that if I was pregnant that I would tell him. After a 20 minute drive home I ran into the bathroom. Waited, waited, waited...then I saw 2 lines! Success!!! I was thrilled and I had my own little party in the bathroom. I jumped up and down and told Heavenly Father thank you. I am such a geek.

November 29, 2010: Well, we headed to the cruise port and we got all settled into our cabin. I love surprising Seth and my mind was racing with thoughts. When I was pregnant with Tylee I waited almost 2 days to tell him. I couldn't do that this time. I waited until the ship sailed and took Seth outside to the back of the boat. My brother took a picture of us and I looked at Seth and said, "Guess what?" He smirked and I said, "I'm pregnant!" His eyes immediately filled with tears and he gave me a big hug and held onto me for what seemed like forever. Colton was so happy but we swore him to secrecy.

Sickness: The holidays came and went so fast this year. We were struck with two different sicknesses and they wiped us out. I laid on the couch for weeks. Tylee was sick also so she laid with me. It was a little rough because I was really nauseous and tired all the time. This lasted until I was about 8 weeks. During this same time I thought it would be a good idea to potty train Tylee. Ugh! She did great but I really exhausted myself. I slept from 10pm to 7:30am, then took a 2 hour nap at 3pm.

This pregnancy: This has been a lot like Tylee's pregnancy. I am really tired and nauseous but not sick enough to throw up. I was finishing up a semester when I was pregnant with Tylee so I was really busy. I feel just as tired but more nauseous with this one. I had acne with Tylee but not with this one. It could be due to Texas weather. Even into my second trimester I have to eat every few hours.

Insurance: God really does work in mysterious ways. As of January 1, 2011 we officially have health insurance. Blue Cross Blue Shield only allows new enrollment for our business once a year so we jumped on it. It costs $1000 a month! Yes, that is three zeroes. Plus, we have a $3,000 deductible. Talk about crazy. By the end of the year we will have paid $15,000 in health insurance. Don't even get me started. I guess this is the downside of owning your own company, insurance sucks!

January 12, 2011: I had my first doctor's appointment and we had insurance starting 12 days before. Talk about a miracle. I quietly asked around church what OB/GYN was good in the area. Everyone recommended Dr. Castillo. (Oh, how I miss Dr. Doyle though.) I met with him and he delivers at a hospital within 5 minutes of us. I love that. We heard the babies heartbeat, 172. It was so nice to hear it. Seth was right by my side the entire time. Dr. Castillo is amazing. He has nice short visits and gives you a hug as you leave. Due date was set at: August 7, 2011! However, he did tell us that he would be gone August 1-10. Ugh! By the way I am totally thinking GIRL!

Our Secret: We decided from the very beginning that we were not going to tell people we were pregnant until we knew the sex of the baby. I know it's a girl but we decided to wait. Seth's family has so many grand children that we thought this would be a bigger surprise. My family wants another baby so bad that we decided it was better to tell them in person. My Dad booked us a flight to Utah during my 20th week of pregnancy and we will reveal all of it then. (Yes, my Dad does knows. There were some things that happened around Christmas time when it became a need to know. My mom is going to kill me.) Plus, this pregnancy has gone by so fast because no one is asking how far along I am.

February 9, 2011: My 2nd doctor's visit I was really excited about. We were having an ultrasound! It was so great to see our little active baby moving around. Dr. Castillo talked to us about inducing at the end of July. We aren't against inducing at all but I don't think it is for me. If I were to reach 41 weeks then that would be a different story. This got under my skin a little bit. I talked to Seth and we decided to switch doctors. Heartbeat: 168, Weight gain 2 lbs.

There is a sweet lady in our ward named, Melissa Stone. She has had 4 pregnancies and 2 sets of twins. I know, right? She recommended Dr. Hulme. She said he is fantastic so I made my appointment. He is also LDS, score!

February 23, 2011: My first appointment with Dr. Hulme had me on edge. I was a little nervous because Seth was in Utah and I was all alone. I met with him and I got another ultrasound, yes! I was very excited to be looking at our baby until Dr. Hulme got a face of concern. He kept focusing on our babies heart. He told me that one chamber of the heart was oddly shaped. He then proceeded to tell me that he was by no means a cardiologist but that I should have it looked at. He then proceeded to tell me that under the circumstances he would recommend that I had the full panel of blood work done including the triple screen which detects Down Syndrome and other neural tube defects. As I walked out of the room I could have broken down into tears but I didn't. I wanted my husband, I wanted my parents and I wanted to pray. The nurse gave me a card for the cardiologist that would be doing the test. I quickly made my next appointment and walked to my car. I got into my car and started crying. I wasn't sure if I would make it home. I had so many emotions running through me that I was shaking. I was truly scared to death. Heartbeat: 162, Weight gain: loss of 2 lbs. Total: 0

Telling Seth: This was the hardest thing I had to do. He got home from Utah that night and he knew something was wrong. We were outside watching Tylee play and I just told him. I told him something could be wrong with out baby's heart and could possibly have Down Syndrome. He comforted me like he always does and he was really strong. He really is such a great person to lean on. I love him. He told me everything would be okay and that we would pray about it.

Hospital Visit: The night of my appointment I scheduled a hospital tour. Again, I was by myself because we couldn't find a babysitter for Tylee. Instead of the hospital being 5 minutes away it is now 35 minutes. Ugh, but I love Dr. Hulme. So I drove down to what I would call the ghetto and I parked my car in a security guarded parking lot. It has "Welcome to Houston" written all over it. The facility is great, I was really worried before. I stood in the hospital with our tour guide and she kept talking and talking about labor. I don't know if it was hot or I really just got sick but I totally was about to faint. I have never in my life felt that feeling. I think it was just too many emotions in one day. I started to sweat profusely and feel weak. I was getting really dizzy and I asked for a chair. She told me I didn't look good. I sat down and began to wipe off drips of sweat. I started to feel better when I felt the air conditioning kick on. Phew. We were finally done with the tour. The one down side of the hospital is this; you have to have blood work done before you have an epidural. This could take up to an hour. Are you kidding me? I am so scared of that now. I am sure there will be a few false alarms by the time this baby comes. I will have an epidural!

March 9, 2011: I had all my blood work done. After 9 tubes and a cup of pee later I was out of the office. Now the waiting begins.

March 5, 2011: Can you guess what I wished for on my birthday? If it involves a healthy baby I am sure you are right. Plus, I finally felt the baby move tonight! What a great gift. 17 weeks 6 days.

March 7, 2011: A Texas phone number was coming through on my phone that I didn't recognize. I never answer random numbers. Well, I answered it. "Hi, this is Nurse (blank, can't remember) from Dr. Hulme's office and we received your blood work today." Meanwhile, in the back of my mind my thoughts are racing. I am not suppose to find out my results until the 16th. "It looks like you had a triple screen done and that tests for neural tube defects and Down Syndrome and they came back NEGATIVE. We also checked all your other tests and they all came back NEGATIVE. We do have one concern about Vitamin D. Your levels are too low and we need you to take a supplement." At this time I am completely in tears and then I hear a knock on my door. It is Seth! Why is he home? I answer the door with tears streaming down my face as I continue to talk with the nurse. I tell her how thankful I am that she called and did not make me wait. Have I told you how much I love Dr. Hulme's office? I hang up the phone and run to Seth and just cry and say, "All my tests are negative!" We both cried and Tylee asked us why were were crying. Seth picked her up and we had a family hug. I cannot express to you the feeling that came over me. I have lost endless amounts of sleep and I have prayed harder than ever. I just wanted to pray to Heavenly Father and just thank him for answering our prayers. This hurdle is still not completely over until after our cardiogram on the 15th.

March 10, 2011: I am leaving for Utah on the 23rd of this month and we wanted to share the big news with our families when we got there. My 1st doctor, Castillo, was going to do my big ultrasound tomorrow and we were going to find out the sex of the baby. Well, since I switched I found out that Dr. Hulme doesn't do the sex ultrasound until 21 weeks. I have a doctor appointment with him on the 16th. I usually don't bother my doctors too much but I am paying him so why not? I called the office today to check and see if I had an ultrasound scheduled. Well, I didn't. I quickly told them that if there was a way to persuade my doctor into doing it a week and a half early that I would love that. They told me they would call me back. I got a call this afternoon and they scheduled me an ultrasound. YEAH! I am so excited. So in 5 days we will know for sure if our baby is a boy or a girl. Seth thinks we are having a boy but I am still thinking girl. We still have our cardiologist appointment on the 15th and we are a little anxious about it. We are going to try and go to the temple this Saturday so we can feel better about it. I have been praying really really hard that everything will be okay. We already leaped over one hurdle now we just need to get through this or know what we need to expect. Seth gave me a blessing a few days ago and it felt really good. I am so thankful for the priesthood and the calmness that it brings to me. 5 more days!

March 15, 2011: Hmm. Well, today did not go as expected. We felt so good about this cardiologist appointment that we did not even worry about going in. I wonder if God was keeping us strong for the news we were about to hear. We found out that we are having a BOY! We were so thrilled and I was so excited for Seth. Once we were done with the hour long ultrasound our doctor left the room. Dr. Christine Falkensammer is part of an elite group of cardiologist here in Houston. She was very thorough and looked at our baby's heart with a critiquing eye. She came back to the room with a few diagrams. She quickly told us the devastating news that we were not expecting.  "Your baby has a severe heart defect, hypoplastic left heart syndrome." I turn to Seth and he begins to sob. I tried to be strong and didn't let a tear fall down my face. We were both in shock. I knew that if I began to cry that I wouldn't be able to comprehend what the doctor was saying. I wanted to know everything and every last detail. I had questions, many questions. I wanted them answered. I wanted to know what we were dealing with. Every question we had was hard to ask and it came with a just as devastating answer. We were hearing things like, "100% fatal, heart surgery, very risky, passing away, long road, terminate." All of these things were very hard to hear. Our doctor told us we would need to be seen once a month for the rest of the pregnancy. My pregnancy was now high risk and I would need to deliver at the downtown hospital. Remember how I complained about the hospital being 35 minutes away? Well, now it is almost 45 minutes away. During our drive home Seth and I just sobbed. Wasn't there an easier fix? Wasn't there a pill that I could take to correct this? Am I being punished for the life I have lived? Why us? Why our sweet little baby boy? All of these questions were screaming inside me. That night we decided to break the news to Seth's parents. They didn't even know we were pregnant. Seth had a hard time letting them know what was going on. He was so strong and did such a great job. This was the worst day of our lives. As we were going to sleep Seth cuddled with me. I began to cry uncontrollably and began telling Seth how pissed I was. I was so mad. I am still so mad. I cried myself to sleep.

March 16, 2011: I woke up crying. I cried in the shower and hunched over like a big baby. I cried when I got out of the shower and I tried not to cry once I put my make up on. We had an appointment with Dr. Hulme to have an ultrasound later that afternoon. On the way there I told Seth that I was crying in the shower and he quietly expressed that he did the same thing. We got to the appointment and we sat there as I picked up People Magazine and of course Seth picked up Sport Illustrated. As I was reading I came across the story of a child actor. It was a short story how he overcame heart surgery at birth. This story hit home with us and how maybe our child could lead a normal life. Dr. Hulme called us back to his office. His nurse, Trudy, asked how our appointment went and I said, "Not so good." Dr. Hulme talked to us and told us how sorry he was. He felt bad that at my first appointment he made this discovery. I told him that we felt like we were sent to him for a reason. He tapped my knee and gave me a hug. He wanted us to meet with a perinatologist immediately. He knew I was going to Utah on the 23rd so he contacted Dr. Kirshon himself. I love Dr. Hulme. They got us in that afternoon. Can you believe it? We drove downtown to meet with Dr. Kirshon. He did a full ultrasound checking every part of our baby's body. Everything looked great. He spoke to us about having an amniocentesis and we decided to do it. This test would help us find if the baby had any chromosome abnormalities. Talk about the worst pain ever! The doctor did not get the amniotic fluid the first time so he had to do it again! I seriously felt like I was being stabbed. I cried and cried during the procedure as Seth held my hand. I asked Seth what he was thinking and he told me he wanted to punch the doctor in the face. I told him so did I. Once we were done with that we went to another room to get some shots in my butt. Lovely! I am RH negative so I needed my first round of Rhogam. I was in so much pain by the time we left this appointment. Once again we cried all the way home and ended up laughing after I called my Dad. He always makes light of the situation and compared my pain to people on Funniest Home Videos. We got home and I was on bed rest for 2 days. Remember when I talked about our lovely $3,000 deductible? Well, in one day we spent almost $700 for doctors visits! Talk about draining our bank account. Luckily, we just received our tax money.

March 17, 2011: Bed rest, ugh! Seth has been taking such good care of me. He asked me what I wanted for breakfast and I said Eggos. He went to the store and brought me home breakfast and even made lunch as well. He made me a bed on the couch and we watched all the basketball games for March Madness. Who would have thought that 4 channels would be playing college basketball. Ugh! I was in a lot of pain today. My entire stomach hurt and for some reason my right arm hurt. I think it was because I was so tense during the amnio. The day got a lot better and we decided to write a family and friends e-mail. I will link it right here. The letter goes into further detail about what I didn't talk about above.

March 18, 2011: I went to Old Navy this morning to buy some gauchos. I loved wearing those when I was pregnant with Tylee. They are so comfortable. I walked into the baby isle and I looked at all the boy clothes. They were so fun and not pink. I really wanted to just buy the entire boy section.. I stood there in the baby section almost in tears. I looked at the sizes for babies 0-3 months, 3-6 months and 6-9 months. Would my baby boy make it to all of these stages? Would he even be able to wear anything that I bought. I quickly became depressed and left the baby section. I did not buy one thing. I don't want to buy baby clothes for a baby that may not even wear them. This brought up so many emotions. Do I set up a crib? Do we buy clothes? Do we have a baby shower? All of these questions I would be so excited about if we didn't have the possibility of losing our baby boy. Once again I became angry and upset. This is going to be a long road.

March 19, 2011: Talk about being frustrated. Seth and I decided to call a last minute babysitter and go to the temple. We are fortunate to only live a few miles from the Houston Temple. We went to the 8pm session with a lot of questions on our minds. When we finished the session we were sitting in the celestial room and began to pray. I was in there a few minutes before Seth came so I had already said a long prayer. Seth sat down and started to pray silently. I looked at a big bouquet of flowers and it hit me like a ton of bricks. I knew my answer. I became somewhat irritated inside which is a feeling I have never felt before in the temple. Once Seth was done praying we discussed what we felt. I was hesitant to tell him what I was thinking because it wasn't very comforting. He began to tell me that he wasn't feeling the comfort that he came looking for. We both felt the love that Heavenly Father was giving us but we did not feel at peace. I told Seth that as soon as I finished my prayer I felt like God came down on me with an iron fist. The answer I got is really hard to explain but it said, "It is what it is." Weird, right? We both felt the same feeling. Like God wanted us to stop asking for some huge miracle to happen and that the card we are being dealt is what we are going to have to play. We felt that God has a plan for us and he is not going to change it. God has chosen this path for us and our little boy has agreed to come down and deal with this. We feel that the way we pray needs to be changed. We now feel like our baby is in God's hands and only God will be making the decisions. We kind of left the temple a little discouraged and a little mad, but we went to the temple looking for answers and we got them. God wants us to trust him and the plan he has set. And that is exactly what we are going to do. It is what it is.

Seth, We will get through this. This plan is for us and I am so glad to be your wife. You continue to inspire me everyday with your strength and love. I am so happy to be having your second baby and I am so happy to be able to give you this little boy. I am so glad this little man has such a great example in his life. I know as he sits in heaven waiting to come down that he knows he is coming to a good family who will love and take care of him. I know that this little boy chose to come to us because we are a strong couple. He is so lucky to have us as parents. I couldn't ask for a better spouse and I am so thankful for your support. I know that I have been an emotional wreck the last few weeks and I am so thankful for your support. You are an amazing man and I know I gain strength from you. Thanks for letting me lean on you. This experience has already made us so strong and I know it will only make us closer. You will never know how much I love you.

March 20, 2011: Today we went to church and felt eyes staring at us all day. We knew that after we sent the e-mail to our Bishop and a few others that we could expect it to spread like wild fire. Let me just say this before I go on. If someone has a traumatic life event happening in their lives then you do NOT start a conversation with them by saying, "We feel so bad for you guys." We don't want people to feel bad for us. We want people to take this circumstance and appreciate that they have healthy children. We want people to pray for us and we want people to grow from hearing about our experience. By no means do we want people to feel bad for us. This will make us stronger and I can promise you that!

March 22, 2011: Telling Courtney: Well, I talked to Court earlier that day and I told her to call me when she got home. I told her that I wanted to send her an e-mail but I wanted to make sure that her fiance was around to read it with her. She new something was up but didn't know what. I sent her the e-mail when she got home and I waited an hour before I called her. I was a little nervous because I didn't know how she would take it. I called her and I could tell she had been crying really hard. She quickly told me that she was sorry and that she was so sad that we had to go through this without anyone knowing. I felt really close to Quarter at that time and I was so glad that I did it this way. I don't think I could have gotten through the full conversation without crying or confusing her. Courtney and Phil had a few questions that I was prepared to answer. They had a lot of spiritual questions that I was so happy to answer. We spoke on the phone past midnight and I felt so comforted after I told her. Can I just take a minute to tell you how awesome my sister is? She is seriously incredible. I could not ask for a better sister and she is always there when I need her. Sometimes I call her 10 times a day and we can chat about anything. I am so fortunate to have someone like her in my life. The next morning I called Courtney while she was at work. I could tell that she had a rough night and she still seemed really upset. She told me that she went to work and talked with her supervisor. Courtney asked if she qualified for a leave of absence and if she could take it during the month of August. Courtney wants to be able to help out with Tylee and make sure that we have enough time at the hospital. (The average HLHS case is in the hospital for 6 weeks.) I am not asking Courtney to leave work but I love that she will be there if I need her. I couldn't ask for a better sister, seriously! She is amazing. I have an amazing sister who I can lean on, cry on and talk to for hours. I am so lucky!

March 23, 2011: My trip to Utah: When my Dad had purchased our flights in the middle of January we were coming to surprise my family. We had no idea the ball we would drop on them. The trip really became bitter sweet and I wasn't sure how I could tell my sweet mother. My mom has so much to worry about and I don't like putting this weight on her shoulders. My mother has always gone above and beyond any of my expectations. Tylee was an angel on both of our flights. We got in around 7:30pm and my dad was there to pick me up. It was really hard to keep the tears from falling from my eyes. We walked to the car and I quickly changed Tylee into her "Big Sister" shirt. I love that shirt. I bought it awhile ago and I am so happy I did. We drove to my parent's house and we walked up to my mom's room. She was so excited to see Tylee and I. She didn't even realize what Tylee's shirt said. We told her to read it and she gave me a hi-five. I told her I was 20 weeks along and that we were having a boy. She was so happy and even happier when I told her this little one is due on my parent's anniversary. We quickly walked around to everyone's rooms and surprised them. Kelsey started crying and we asked her to read Tylee's shirt. Kels was super excited. I picked up Chad later that night and he thought I was my mom. He got so excited when I told him that Tylee was here. Colton knew I was coming so he was excited too. After a few hours of excitement and talking we decided to gather everyone around. We decided the best and easiest way to break the news was to read the e-mail again. (Seth and I put a lot of effort into the e-mail so that people could understand what was going on. I really feel that this was the best way to break the news to everyone.) My mom was really upset that Seth and I had to go through this alone. The kids cried and I joined them. My mom's attitude quickly changed and she told me how excited that she was. She told me that I needed to start planning and that we needed to go shopping. She told me to stop crying and just focus on the fact that this baby is coming to us and we should be excited about it. At this point I felt a lot of negative feelings leave my body and I began to get excited. I am excited. I am still upset but that is ok. Life is hard but God is with me.

March 24, 2011: We told out extended family today and sent out "the" e-mail. We were quickly replied with a lot of comforting words. One inparticular came from my cousin, Richard. He said, "You've got a huge crew of family supporting and thinking of you. Keep your chins up!! You will be in our prayers." We got many others saying that they would fast for us and that we would be in their thoughts and prayers. This got me thinking more positive and we felt so good inside. I also got a few messages about family who knew others with HLHS and how their boys were young and striving. It was so good to here about all of this. I have the best cousins, aunts and uncles. No one compares to them and the way they support me.

March 25, 2011: Candice came over today and we were driving to get some lunch. As soon as I got in her car I got a call from my OB/GYN, Dr. Hulme. I knew he has the results of my amnio. I took in one deep breath and I answered. He told me that our baby's results were 46Y which means NORMAL BABY BOY! Dr. Hulme informed me that he would be switching my prenatal care over to Dr. Kirshon. I told him that I was happy to be his patient and that he will be seeing me in the near future. I was almost in tears by the time I was off the phone. I called Seth and he was so happy. Our prayers were answered. This was such a good feeling because we knew that this heart defect wasn't genetic. I know it is too soon to talk about but this means that everything looks good for having future babies. This was a great day in the Watson house. Now I am going to enjoy my trip. It has been an emotional roller coaster.

March 27, 2011: Today we received the most touching e-mail from my cousin's husband, Brian. Diane and Brian have a daughter who was born with a heart defect and he wanted to make sure we were prepared. He talked to us about insurance, the stress, his testimony and many other things. This e-mail was so powerful that I could hardly read through it. It was so thoughtful and generous. Once again, I am surprised by the kindness of others. When I read blogs or stories about other heart babies I instantly have a connection with them. I know what they are feeling and I know how stressful it is. I find strength in the stories I read about other HLHS patients. I find that some of the simplest things encourage me. I have found that most kids live completely normal lives. They play basketball, they go to school, they graduate college and they get married. I love reading stories about adults in their twenties who survived HLHS and they are succeeding. I am so grateful to be apart of a heart community and I feel so blessed that they share their lives with us on the internet. It truly makes everyday bearable. This little boy is so active. He kicks me all the time and I can feel how strong he is. I know this baby is a fighter and he will fight for every breath. I believe that maybe I knew I would be dealt with this before I came to earth. Is that so weird to think? I often wonder if I got my degree in nursing because I knew subconsciously that I would need the knowledge for my life. I can't tell you enough how much I love that I understand what is going on with this baby's heart. I may not know everything but I know my schooling has helped me deal with it. Once again, another day has passed and I am feeling blessed.


I do have to say thank you for all of those that have supported us the last few days. You will never know how much love we have felt. I strongly believe in the power of prayer and in fasting. I know we still have a long, long road ahead of us but I know that Heavenly Father is on our side.

April 6, 2011: On my flight back to Utah I had a connection in Pheonix. I have been begging Seth for months and months to let me go visit my cousins in Arizona. After a few phone calls I was on my way. Tylee and I are here in Arizona loving life with our cousins. I love hanging out with my cousin, Jenny. She truly is one of my best friends. I have to thank my parents for a wonderful trip to Utah and helping us with this detour to Arizona. I couldn't ask for better parents.

April 8, 2011: Meeting A Miracle: Jenny & I packed up the kids in the car and headed over to her sister's house. Shauna e-mailed me last week telling me that her good friend, Molly, had a 2 year old with HLHS. What a small world? It just so happens that Shauna was at her friends house and Molly was there with her son, Mark. Mark is Molly's 6th baby and they did not find out about his condition until he started to go blue 2 days after birth. Talk about scary. Well, Shauna came out to the car and asked if I wanted to meet Mark & Molly. I hesitated. I almost said No. I was a little nervous and I just began to cry. Was I ready to meet this little boy? Would he look normal? Would I ask questions? Shauna began to cry with me and then Jenny joined in. Molly reached the car in tears with Mark in her arms. Mark looked like every other little boy. He had blond hair and was even a little stocky. I thought heart babies looked ill all of the time. He looked perfect. As I cried I asked her questions and she talked to me every kindly. She told Mark to show us his belly and there it was...the most beautiful life-saving scar I had ever seen. Mark has been through the 2 of the 3 surgeries and he is preparing for his third. He was smart and funny little boy. I just wanted to hug him. Molly gave me so much information and I instantly felt such a connection with her. I have never even met her before. It was so overwhelming to meet Mark and I wish Seth was there. I love little Mark and I only met him for a few minutes. This gives me hope and gives me some security. I hope we can have that miracle. I know I went to Arizona for this purpose and this purpose only.

April 9, 2011: Cursed Arizona: One of the things I have discovered about Arizona is the food. I love the Mexican food and I love Pete's Fish n' Chips. Did I know all this spicy, fat food would end me up in the Emergency Room? Well, not exactly. After a few weeks of my "vacation diet" I ended up in the E.R. with severe upper belly pain. Last night was the worst pain I have ever gone through in my life. Jenny took me straight to the hospital and was there to comfort me. As I was registering I would answer a question then run to the bathroom and puke. I then answered another question and it just kept going until I was all registered. It did not help that I was dying of pain and every time I puked I would pee my pants. (Oh, the joys of being pregnant.) I probably looked like a train wreck. They finally took me to the maternity floor and monitored the baby. He was looking good. Meanwhile, I was still shaking from all of the pain and I was literally at my wits end. I remember leaning over in a pretzel shape thinking that I was going to pass out. Next thing I know the nurse told me I had fainted and it took me a few seconds to come back. For an instant the pain subsided but it came back full force. I dressed in a gown and they put me back in the bed. They wheeled me to the E.R. and say me there in the hallway! I bet all those people just loved hearing me moan and stare at my beautiful backside. I did not care, I was dying remember? After almost 90 minutes from check in I was escorted to an E.R. room. Where was my IV and where was the freaking doctor?!? I began to throw up again and again but my wonderful Aunt Shirley finally arrive. Oh, how I love her. I began to sob just asking God why I had to go through this and told him this was all I could take. Hasn't my life been hard enough lately. I just cried and cried. They did an EKG and inserted my IV. I had to sit still for all of this so I just went to the deepest meditation state that I could possibly go but it wasn't that far. Shirley went out and told the doctor that I was ready and the doctor came in soon after. What a wonderful lady she was. I told her I fit all the symptoms for gallstones and she agreed with me. She talked with me a bit and I was then taken to another room. I FINALLY got a does of Demerol after 3 hours! HEAVEN! I thought epidurals were great but this was heaven. A gallbladder attack is way worse than having contractions! Don't believe me? I hope you NEVER find out! I had an ultrasound and the results came back positive for gallstones. Duh! Now I am on a wonderful fat free/low fat diet. I hope this never happens again. I am really sore and I am really tired. I am even scared to eat. Luckily, I love fruit and veggies so I don't think this new diet will be hard. Let's hope the rest of this trip is smooth sailing.

April 12, 2011: Can I just tell all of you that I have the best cousins. I really do. They have been so helpful and caring through this ordeal that I have grown to love them even more.

April 14, 2011: Back in Texas: I don't want to be here but after almost a month away from my hubby I decided to finally come back. Miss Tylee was going through withdrawals. Ask any of my cousins in Arizona, she was ready to come home. Today we are back in the routine of babysitters and doctors visits. I had a "normal" OB/GYN visit with Dr. Kirshon today. The baby's heart rate was 156 and he was looking strong. Everyone that feels him can tell how active he is. It kind of makes me sad though. I just wish our baby boy had no limitations and could run and play like everyone else. Well, at least no bad news at this visit.

April 15, 2011: Tax Day: This post has nothing to do with taxes and everything to do with another doctor appointment. We met with Dr. Falkensammer today and she did another 30 minute ultrasound of the baby's heart. She said that his foramen ovale looked good but it was still something they wanted to look for in the future. (Our baby's foramen ovale is a little smaller than they would like it to be.) There was no change in the f.o.'s appearance. Good sign. His pulmonary/lung pressures decreased from last time which was a good sign. They did find a little hole next to his f.o. They said it is fine but that it is actually helping with blood flow through the heart. Weird, right. It was a good visit. We knew we weren't getting a miracle but we are taking baby steps. We did go in depth with her about the surgeries and life expectancies. She said as long as his f.o. remains the same they will do surgery between 5-7 days of life. The chances of losing him to the first surgery are very, very small. She said the biggest place they lose babies is between the 1st and 2nd surgery. (2nd surgery is at 3-4 months) She said most babies pass away at home from natural things. This concerns us a lot but we know our baby is in God's hands. We shed no tears today so that is a good sign. We are growing and improving with each prayer and each little miracle.