I am sitting here catching up on some shows as little Case sleeps and Colt plays with his cars and trucks. Grey's Anatomy is on, one of my favorites by the way, a 15 year old has a baby, baby is extremely sick (with what I really don't know I was up doing things during that time). I know the baby does have some heart problems. The point of the story is mom leaves the baby. She says "There is something wrong with him." Can you imagine? Can you imagine saying that? Can you imagine walking away? I have told Bruce over and over that I am so glad this happened with our 4th child and not the one we had when we were 20. I don't think I could have handled it at that age. Don't get me wrong, I would never have walked away it would have just been even harder than it is now. In the NICU we saw so many teen parents and it breaks my heart because they just aren't ready to deal with that kind of stress.
Thanksgiving was truly a day of giving for our family. Although it was very hard to be split from some of our family because we can't travel and Case can not be around anyone who may be sick we were still joined by my mom and my brother. We had a small feast (as Kade calls it) and mom and I enjoyed much shopping (AH retail therapy)! Case slept through his first Thanksgiving meal!
Case is doing well and continues to gain weight, now weighing 9 lbs 3 oz. He had one week of slight weight loss because of a cold but he has definately recovered from that. Our weekly visits to our cardiologist are going well and cardiac wise everything is looking good. We do the cath lab on Jan. 9th, Dr. Khan is going to go in and make sure everything inside his heart is ready for surgery and Jan 10 is the big day. I am very very nervous about surgery but I know it is what we have to do. It is so hard to imagine this little guy in so much pain.
As for the rest of us our biggest baby has his first dance tonight! I am very sad and not ready for him to grow up. Bruce has been having some pain in his stomach and did a bunch of lab work yesterday and hopefully will get to see a dr today. We are fearing it may be gallbladder issues. So please throw a little prayer his way!
Friday, December 7, 2012
Sunday, November 11, 2012
Friends and Strangers
I must say that I am overwhelmed by the outpowering of help and love that we have recieved through this difficult time. I am not at all good at asking for help but through this I am learning people want to help in some way and I have to let them because lets face it, Bruce and I can not do all of this on our own!
Through the facebook posts and an onine scentsy sale of our friend Jamie Conn our lives were touched by strangers. Jamie's husband Jeremy was in the same unit as Bruce at Fort Hood. Although it has been years since we have seen them and both of our families have grown we have kept in touch with each others lives through facebook. When Jamie found out about our situation she approached me and asked if she could do an online scentsy sale in Case's honor. By her doing this a friend of hers saw our story and she approached The VA and Ladie's Auxiliary in Columbia Station, OH who both sent us monetary donations to help with our medical bills. Of course this is huge for our family right now. Then seeing Jamie's facebook posts about the Scentsy sale a former soldier of Bruce's, Chase Butler, sent an email to the Carolina Panther's about Case. They sent us an autographed football, a sideline cap signed by Greg Olsen, a youth size hat, and a shirt. We also have a very inspirational letter from their coach. Greg Olsen has twin boys that were born in October one of which has HLHS like Case. It was a very awesome package to open!!
There have been so many people that have helped us in the past couple of months. Whether it be by food, gift cards, babysitting, prayers, thoughts, visits or just listening we want you all to know every single one of you has been appreciated. Thank you all for being in our lives and keeping up to date with our Case.
Through the facebook posts and an onine scentsy sale of our friend Jamie Conn our lives were touched by strangers. Jamie's husband Jeremy was in the same unit as Bruce at Fort Hood. Although it has been years since we have seen them and both of our families have grown we have kept in touch with each others lives through facebook. When Jamie found out about our situation she approached me and asked if she could do an online scentsy sale in Case's honor. By her doing this a friend of hers saw our story and she approached The VA and Ladie's Auxiliary in Columbia Station, OH who both sent us monetary donations to help with our medical bills. Of course this is huge for our family right now. Then seeing Jamie's facebook posts about the Scentsy sale a former soldier of Bruce's, Chase Butler, sent an email to the Carolina Panther's about Case. They sent us an autographed football, a sideline cap signed by Greg Olsen, a youth size hat, and a shirt. We also have a very inspirational letter from their coach. Greg Olsen has twin boys that were born in October one of which has HLHS like Case. It was a very awesome package to open!!
There have been so many people that have helped us in the past couple of months. Whether it be by food, gift cards, babysitting, prayers, thoughts, visits or just listening we want you all to know every single one of you has been appreciated. Thank you all for being in our lives and keeping up to date with our Case.
Thursday, November 8, 2012
All Smiles for Mom
I got my first smile out of our handsome little man a couple of days ago. I was talking to him and he just grinned a huge toothless "I love you, mom," smile. I am thankful for these little moments as we were warned over and over again that there could possible be developmental delays with heart babies and even learning disabilities. We are praying that this simply will not be the case, he has enough obstacles to overcome.
We had a cardiology checkup today, our weekly visit and Dr. Khan says everything is looking good. He is gaining weight, 8lbs 3ozs, today and cardiac wise he is stable. YAY! Poor baby gets messed with alot at these appointments. First he gets his vitals done. His blood pressure is taken on all four limbs. Then he gets an echo and lastly the do an extensive ultrasound of his heart. He does really well until the last 20 minutes or so of the ultrsound. Colt loves the appointments...a very awesome nurse, Paige, has taken him under her wing and she plays bubbles with him and even brings out a very cool Buzz Lightyear remote control figure! Today the lady at the front desk even let him feed the fish. He loves going and soon I am sure they will have him very spoiled!!
We had a cardiology checkup today, our weekly visit and Dr. Khan says everything is looking good. He is gaining weight, 8lbs 3ozs, today and cardiac wise he is stable. YAY! Poor baby gets messed with alot at these appointments. First he gets his vitals done. His blood pressure is taken on all four limbs. Then he gets an echo and lastly the do an extensive ultrasound of his heart. He does really well until the last 20 minutes or so of the ultrsound. Colt loves the appointments...a very awesome nurse, Paige, has taken him under her wing and she plays bubbles with him and even brings out a very cool Buzz Lightyear remote control figure! Today the lady at the front desk even let him feed the fish. He loves going and soon I am sure they will have him very spoiled!!
Monday, November 5, 2012
NICU, the First Surgery and Cath Lab
Case was in NICU a total of 4 weeks and 6 days. The first day I got to visit was a day after his birth. It was terrifying to walk into that hospital and see my child lying there on a ventilator and with tubes everywhere but on the other hand it is absolutely the only place I wanted to be. There were so many ups and downs in there. He would do so good and then all of a sudden have a set back, what a roller coaster ride, but I feel our ride is just beginning. The wonderful thing about NICU though is the nurses. There are so many of them that hold a special place in my heart and I was sad to say goodbye to some of them even though I am more than happy we are no longer there. The back and forth to the hospital was exhausting and our last week there I kept breaking down and was not sure how we were going to do it much longer. I feel very selfish saying that as some people stay in NICU for months.
Case had the Norwood hybrid 11 days after birth, on Oct. 1. Luckily this operation is performed in the Cath lab and he wasn't placed on bypass. They still do open heart, they go in and stent the PDA (valve babies are born with that usually shuts soon after birth but in Case's situation has to stay open) and place two coronary bands on the coronary arteries to control the pressure of blood flow going to the lungs. He did wonderfully. I will admit though that the look of that baby after surgery was the most terrifying thing I have seen in my entire life. He was pale, the was not moving at all and there was a tube draining blood. I was unaware that it would be like that. Bruce had to stand behind me to keep me from running, I was terrified. They would sedate him and he would just lie there, it was horrible. Luckily within 24 hours they back the sedation meds off and he began to be more normal. Everyday after surgery tubes would begin to come off and he would look better. The breathing machine came out 3 days after surgey after a failed attempt a day earlier. 5 days after surgery we were finally able to hold our son for the first time, 15 days after birth. That's when it began getting hard because after getting to hold him I never wanted to leave.
Slowly Case got stronger and better but the next Monday,one week after his surgery, the doctors had to go back in. The PDA had began to close when they put the Stent in so they had to balloon that and then they had to balloon his arterial valve because it was narrowing also. He did extemely well and after a few days began eating. He never had a problem with his eating which sometimes is a major problem with heart babies.
Our Case is home now and if I was tired durning our hospital stay it is nothing compared to the exhaustion now!!! I wouldn't change it though. To have him home with us is a miracle. He is thriving, he gains a few grams daily and at his weekly cardio appointments we are being told we are doing great and that he is doing good heart wise.
Our second surgery is scheduled for Jan. 10 and already I am nervous but God gave us Case for a reason and I am sure he will continue to protect him.
Case had the Norwood hybrid 11 days after birth, on Oct. 1. Luckily this operation is performed in the Cath lab and he wasn't placed on bypass. They still do open heart, they go in and stent the PDA (valve babies are born with that usually shuts soon after birth but in Case's situation has to stay open) and place two coronary bands on the coronary arteries to control the pressure of blood flow going to the lungs. He did wonderfully. I will admit though that the look of that baby after surgery was the most terrifying thing I have seen in my entire life. He was pale, the was not moving at all and there was a tube draining blood. I was unaware that it would be like that. Bruce had to stand behind me to keep me from running, I was terrified. They would sedate him and he would just lie there, it was horrible. Luckily within 24 hours they back the sedation meds off and he began to be more normal. Everyday after surgery tubes would begin to come off and he would look better. The breathing machine came out 3 days after surgey after a failed attempt a day earlier. 5 days after surgery we were finally able to hold our son for the first time, 15 days after birth. That's when it began getting hard because after getting to hold him I never wanted to leave.
Slowly Case got stronger and better but the next Monday,one week after his surgery, the doctors had to go back in. The PDA had began to close when they put the Stent in so they had to balloon that and then they had to balloon his arterial valve because it was narrowing also. He did extemely well and after a few days began eating. He never had a problem with his eating which sometimes is a major problem with heart babies.
Our Case is home now and if I was tired durning our hospital stay it is nothing compared to the exhaustion now!!! I wouldn't change it though. To have him home with us is a miracle. He is thriving, he gains a few grams daily and at his weekly cardio appointments we are being told we are doing great and that he is doing good heart wise.
Our second surgery is scheduled for Jan. 10 and already I am nervous but God gave us Case for a reason and I am sure he will continue to protect him.
Getting Ourselves Ready
After hearing our fate we couldn't decide what to do. Do we stay in Corpus? Do we move him to Dallas or to Houston? Do we uproot our other 3 kids in the hopes of giving our baby boy the best fighting chance possible? Our next move was to meet the surgeon. I began researching online and found the doctors on the Driscoll Children's Hospital website....but the names I found just didn't sound like the man that Dr. Patel had told me about. I called the specialist and got his name, Dr. Durham, and I requested they give me an appointment to meet him. Luckily they got us in with him ASAP and immediately I knew he was the answer to our questions and prayers. Both Bruce and I loved him and after about 2 hours of talking with him he assured us he would do absolutely everything he possible could to save our child and give him the best possible chance at a fullfilling life. A little background into our surgeon....he came to Corpus from the Mayo clinic where he has done over 300 surgeries. He found himself back in TX because he was tired of the cold and he wanted to build the heart center at the children's hospital. I can not say more positive things about this man, he is the answer to our prayers.
Our next step was to make arrangements for our kids. Luckily God has placed some pretty amazing people in our lives. A good friend of mine selflessly took our beautiful 2 year old Colt to live with her for 2 long weeks (anyone with a 2 year old knows how trying they can be). I will forever be grateful to her for giving us that time so that we could be with our beautiful baby.
After taking it extremely easy for a few weeks so that there was no baby early situations the day was finally here.....
It was no sunshine and roses oh we are having a baby kind of day. Bruce and I were both terrified, we were not even sure our baby was going to live, we never let ourselves really get excited. In fact it took us until about the week before his birth to even really decide on his name. I had a c-section and and 10:17 am on September 20th our son was born. At the words of, "Look dad, your son is here," and after Bruce assured me he was alive and breathing I completely broke down and instantly fell in love with our little angel. He was absolutely beautiful. The doctors had all told us he would be born very blue, but it wasn't that way at all, he was amazingly pink and perfect. If we had not been told there was an issue it wouldn't have shown in his appearance. I had also been told I probably wouldn't be able to see him because they would get him to nicu so quickly but luckily he was stable for the moment and I was able to get a quick peek and a kiss. My parents also got a quick peek in the hallway.
Once in recovery I again got to see my son. The transport team from the children's hospital brought him by for a little visit before they moved him. Bruce traveled with Case and I stayed in the hospital for another 24 hours until I could break free and be with my child.
Our next step was to make arrangements for our kids. Luckily God has placed some pretty amazing people in our lives. A good friend of mine selflessly took our beautiful 2 year old Colt to live with her for 2 long weeks (anyone with a 2 year old knows how trying they can be). I will forever be grateful to her for giving us that time so that we could be with our beautiful baby.
After taking it extremely easy for a few weeks so that there was no baby early situations the day was finally here.....
It was no sunshine and roses oh we are having a baby kind of day. Bruce and I were both terrified, we were not even sure our baby was going to live, we never let ourselves really get excited. In fact it took us until about the week before his birth to even really decide on his name. I had a c-section and and 10:17 am on September 20th our son was born. At the words of, "Look dad, your son is here," and after Bruce assured me he was alive and breathing I completely broke down and instantly fell in love with our little angel. He was absolutely beautiful. The doctors had all told us he would be born very blue, but it wasn't that way at all, he was amazingly pink and perfect. If we had not been told there was an issue it wouldn't have shown in his appearance. I had also been told I probably wouldn't be able to see him because they would get him to nicu so quickly but luckily he was stable for the moment and I was able to get a quick peek and a kiss. My parents also got a quick peek in the hallway.
Once in recovery I again got to see my son. The transport team from the children's hospital brought him by for a little visit before they moved him. Bruce traveled with Case and I stayed in the hospital for another 24 hours until I could break free and be with my child.
How It All Began
I am going to start at the beginning..........
In January of 2012 we learned we were pregnant with our fourth child. The honest truth is that we were not happy, 4 children was never in "the plan." I felt overwhelmed and that life would never be anything more than kids. I love my kids but was looking forward to the day they would all be in school and I could finally start my own career. I feel selfish saying it but it is the truth.
In May we had our ultrasound, I never ever let myself think that FINALLY we would be having a girl and we learned that sure enough it was another boy.
After my monthly visit to my doctor she told us that she wanted us to do another ultrasound because she just couldn't see all of the heart like she wanted. At the second ultrasound still the heart could not be seen. My doctor tried to reassure us that it was probably the position the baby was in but wanted us to see a Fetal Monitor Specialist just to be sure. At that visit the specialist said he was 90% sure there wasn't a problem and that he just couldn't see the heart well enough to determine if anything was wrong. He asked us if we wanted to just go ahead and see a cardiologist and we both felt that would be best. Before our cardiology appointment we were sent back to the specialists and saw a different one, he was wonderful, and he told us yes there was a problem he was just not sure how serious.
In August, the 8th to be exact, I will never forget that date we saw Dr. Patel. He is a pediatric cardiologist. He did an fetal echo (that lasted over an hour) and when he was done with tears in his eyes he turned to us and said,
"Your baby has Hypoplastic Left Heart Syndrome." To most parents a definition would be needed but to me I knew exactly what it was. For almost 2 years our family had been faithfully praying for littly Rylnn Riojas who also has HLHS. I felt like I had been punched in the face. So here is where our journey began.........
In January of 2012 we learned we were pregnant with our fourth child. The honest truth is that we were not happy, 4 children was never in "the plan." I felt overwhelmed and that life would never be anything more than kids. I love my kids but was looking forward to the day they would all be in school and I could finally start my own career. I feel selfish saying it but it is the truth.
In May we had our ultrasound, I never ever let myself think that FINALLY we would be having a girl and we learned that sure enough it was another boy.
After my monthly visit to my doctor she told us that she wanted us to do another ultrasound because she just couldn't see all of the heart like she wanted. At the second ultrasound still the heart could not be seen. My doctor tried to reassure us that it was probably the position the baby was in but wanted us to see a Fetal Monitor Specialist just to be sure. At that visit the specialist said he was 90% sure there wasn't a problem and that he just couldn't see the heart well enough to determine if anything was wrong. He asked us if we wanted to just go ahead and see a cardiologist and we both felt that would be best. Before our cardiology appointment we were sent back to the specialists and saw a different one, he was wonderful, and he told us yes there was a problem he was just not sure how serious.
In August, the 8th to be exact, I will never forget that date we saw Dr. Patel. He is a pediatric cardiologist. He did an fetal echo (that lasted over an hour) and when he was done with tears in his eyes he turned to us and said,
"Your baby has Hypoplastic Left Heart Syndrome." To most parents a definition would be needed but to me I knew exactly what it was. For almost 2 years our family had been faithfully praying for littly Rylnn Riojas who also has HLHS. I felt like I had been punched in the face. So here is where our journey began.........
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