My husband A.J. has Tetralogy of Fallot--CHD and so he had a routine cardiology appointment a couple months ago. He was feeling extremely wore down but he wasn't thinking anything about it having to do with his TOF. The Echo cardiogram showed that his Leak in his Pulmonary Valve got considerably worse and so his Cardiologist wanted to perform another type of ECHO called a Trans esophageal echo cardiogram and that showed that his Pulmonary Valve would need replaced, the 2 small leaks around his patch would need stitched closed, his Right Ventricule is enlarged and would need to be surgically re sculpted, and a separation between the 2 Upper Chambers of his Heart would be stitched closed. And, it wouldn't be able to be performed in our hometown or anywhere close to Kansas but up in Minnesota at the Mayo Clinic. There is no medications that will help with his chronic fatigue until Surgery is done.
I am not going to be able to be there for my husband's Surgery and Recovery and it saddens me deeply but my 3 children need me also and it would complicate matters if I uprooted them and left when I know I will need to be away from Amanda and Lucas when Rebekah needs her next surgery. A.J. agrees that I need to stay with the kids and says he'll recover as quickly as possible. My In laws will be with A.J. but I wish I could be in 2 places at once.
The next step for A.J. is a heart catherization. That has not been scheduled yet. We are hoping he'll be able to have his Open Heart Surgery before the end of the year. That would make 2 open heart surgeries in 2010 for my family.
Please send prayers for the 5 members of MY Family; that 2010 will end with Everyone Healthy
Sunday, August 22, 2010
Tuesday, August 17, 2010
Rebekah-- 6 Months Post-Surgery and 7 months old Update
It is hard to believe that it has already been 6 months since her first surgery. And she is 7 months old tomorrow. When we left the hospital she was on the medications Zantac and Lasix twice a day. And she had monthly cardiology appointments. She no longer needs the Zantac and her cardiologist cut back to Lasix once a day. She has 3 small leaks now so she was put on Captopril 3 times a day but also got to lengthen her time in between cardiology appointments to every 2 months which she has another one next week. Her incision looks great as well.
She is 25 inches long and is 13 lbs. 7.5 oz. She sleeps very good at night about 10 pm until 6 am.; nap times are a different story. We call her our little "tumbleweed" because she loves moving all around on the floor; rolling and scooting. She is a fast little mover. We are struggling a little bit with baby food but I am sure that will get better soon. She is a very happy sweet baby that smiles all day. She adores her Big Brother and Big Sister and has everyone wrapped around her little finger. All in All, Bekah couldn't be doing any better. Our Prayers have been answered and our prayers are continuing that she stays healthy so the next surgery is as far away as possible.
She is 25 inches long and is 13 lbs. 7.5 oz. She sleeps very good at night about 10 pm until 6 am.; nap times are a different story. We call her our little "tumbleweed" because she loves moving all around on the floor; rolling and scooting. She is a fast little mover. We are struggling a little bit with baby food but I am sure that will get better soon. She is a very happy sweet baby that smiles all day. She adores her Big Brother and Big Sister and has everyone wrapped around her little finger. All in All, Bekah couldn't be doing any better. Our Prayers have been answered and our prayers are continuing that she stays healthy so the next surgery is as far away as possible.
Sunday, August 15, 2010
Coming Home
We were told at rounds on 2-28-10 that once A.J. and I went to a CPR class and Bekah got her staples out, another ECHO and The Car Seat Test was completed; we would get to go HOME. So, I called A.J. and told him to get up to K.C. and pick BOTH of us up.
We were than scheduled to take the CPR class on Monday 3-1-10 and her staples and ECHO would be done Monday also so it was just a matter of the Car Seat Test ( had to keep SATs up while in the Car Seat for the 3 hours it takes to drive Home). So , we prepared to do that overnight and so After 3 hours, we asked our nurse if we were okay with the test and if it was okay to get her out of her seat. She told us everything was good and so it was fine. She never told us that she didn't keep her SATs up enough in those 3 hours. She could have told us so we didn't keep her in that car Seat Longer than necessary. That 3 hours was ONE of the most nerve wrecking time. It was quite stressful because going home was on the line, you know? Anyway, She had a nurse the next day that actually requested to have Bekah again since we were still there. She helped us through and checked on us more just because we told her about her night nurse and that 2nd time through we got that test done so we were good there.
The Following Morning at Rounds, we were asked "Are you ready to get out of here?" Well, YES of Course we were. It was a "DUH!" kind of response. I don't know if the resident was trying to be funny or not.
On March 2, 2010, after 6 weeks of everyday, all day up at a hospital... 6 weeks of being away from Home...6 weeks of being away from Mandi and Luke... it was finally over and we would soon be home with my entire family. My parents didn't tell Mandi and Luke that Bekah and Mommy were coming home. They were so surprised and screamed and ran into my arms. It was one of the sweetest moments. Thanks Mom and Dad so very much, for the 6 weeks of taking care of my Older Babies so I could be with My Heart Baby!!
The adjustment period would now start. My Sweet Baby was 6 weeks old but felt younger due to bringing her home for the first time. Mandi and Luke weren't used to a baby around or sharing Mommy with anyone else aside from each other.
We were ALL Home Finally and that Is the greatest Feeling!!
We were than scheduled to take the CPR class on Monday 3-1-10 and her staples and ECHO would be done Monday also so it was just a matter of the Car Seat Test ( had to keep SATs up while in the Car Seat for the 3 hours it takes to drive Home). So , we prepared to do that overnight and so After 3 hours, we asked our nurse if we were okay with the test and if it was okay to get her out of her seat. She told us everything was good and so it was fine. She never told us that she didn't keep her SATs up enough in those 3 hours. She could have told us so we didn't keep her in that car Seat Longer than necessary. That 3 hours was ONE of the most nerve wrecking time. It was quite stressful because going home was on the line, you know? Anyway, She had a nurse the next day that actually requested to have Bekah again since we were still there. She helped us through and checked on us more just because we told her about her night nurse and that 2nd time through we got that test done so we were good there.
The Following Morning at Rounds, we were asked "Are you ready to get out of here?" Well, YES of Course we were. It was a "DUH!" kind of response. I don't know if the resident was trying to be funny or not.
On March 2, 2010, after 6 weeks of everyday, all day up at a hospital... 6 weeks of being away from Home...6 weeks of being away from Mandi and Luke... it was finally over and we would soon be home with my entire family. My parents didn't tell Mandi and Luke that Bekah and Mommy were coming home. They were so surprised and screamed and ran into my arms. It was one of the sweetest moments. Thanks Mom and Dad so very much, for the 6 weeks of taking care of my Older Babies so I could be with My Heart Baby!!
The adjustment period would now start. My Sweet Baby was 6 weeks old but felt younger due to bringing her home for the first time. Mandi and Luke weren't used to a baby around or sharing Mommy with anyone else aside from each other.
We were ALL Home Finally and that Is the greatest Feeling!!
Sunday, August 1, 2010
Recovery
The first 48 hours would be critical. They would keep her chest open for a few days to help with drainage and swelling so she would have to stay sedated. It was hard seeing her hooked up to the ventilator and so many medications and to know her chest was open still but I just had to keep telling myself it was temporary. This was also hard because I couldn't hold her like I had been every day thus far. She was a little anemic and so she did need a little blood transfusion. She was recovering very well and they were weening her off of oxygen and some meds that first night and her O2 SATs were holding strong in the upper 80s percent. She was truly my little "warrior" baby.
She was ready to have her chest closed on 2-22-10; just one more step to coming home. I was told it would only take about an hour to do the chest closure so I waited in the waiting area; which was fine but after about 3 hours I had to go to the front desk of PICU and ask IF anything was wrong and why couldn't I see my baby yet? The girl at the front desk of the PICU came back and said Bekah's nurse called about 10-15 minutes ago saying I could go back now and She apologized saying she couldn't FIND me even though I was in the same chair the whole time. So, I was happy that nothing was wrong but I was curious to know why it took longer then the hour. Bekah's nurse informed me that she was starting to wonder what had happened to Me and she called for me OVER an hour ago. I was a little more than upset to say the least.
It was amazing after her chest was closed how quickly she started losing all her tubes and wires and medicines. After 2 days, she just had a central IV line, nasal Oxygen and a NG tube. As far as post-op and her heart she was doing awesome. She was well enough to be moved out of PICU and into a regular room. We were back to square one with her feedings which was the biggest hurdle; so we starting working with OT again.
After rounds on 2-27-10, her cardiologist told the nurses that she shouldn't be on O2 anymore and get the NG tube out and start demand feeding. I was so happy because after asking them to do the exact same thing; they had to do it. You should know No Dr or nurse listened to me -Her Mother. After those tubes were taken out she was eating better; not her full bottle but over half. I was very happy with that.
We would be going HOME Soon!!
She was ready to have her chest closed on 2-22-10; just one more step to coming home. I was told it would only take about an hour to do the chest closure so I waited in the waiting area; which was fine but after about 3 hours I had to go to the front desk of PICU and ask IF anything was wrong and why couldn't I see my baby yet? The girl at the front desk of the PICU came back and said Bekah's nurse called about 10-15 minutes ago saying I could go back now and She apologized saying she couldn't FIND me even though I was in the same chair the whole time. So, I was happy that nothing was wrong but I was curious to know why it took longer then the hour. Bekah's nurse informed me that she was starting to wonder what had happened to Me and she called for me OVER an hour ago. I was a little more than upset to say the least.
It was amazing after her chest was closed how quickly she started losing all her tubes and wires and medicines. After 2 days, she just had a central IV line, nasal Oxygen and a NG tube. As far as post-op and her heart she was doing awesome. She was well enough to be moved out of PICU and into a regular room. We were back to square one with her feedings which was the biggest hurdle; so we starting working with OT again.
After rounds on 2-27-10, her cardiologist told the nurses that she shouldn't be on O2 anymore and get the NG tube out and start demand feeding. I was so happy because after asking them to do the exact same thing; they had to do it. You should know No Dr or nurse listened to me -Her Mother. After those tubes were taken out she was eating better; not her full bottle but over half. I was very happy with that.
We would be going HOME Soon!!
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