Monday, March 28, 2011

From Second surgery to present

When we arrived at the hospital for surgery again it was once again hectic.. He surgery was scheduled for January 31st, 2010.. So after the first night the next morning we were told her surgery had been moved up to January 28th.  She was to have the Bi-directional Glenn.. We got to walk her down to the OR waiting room until they took her in for her surgery.. When they took her in, once again I prayed and cried.. God keep her safe again.. This surgery was to take 4 hours again but it took much longer because of scar tissue..When the dr. came in after surgery and told us all was well I just thanked God again.. She was such a pitiful sight.. Once again my little girl was in pain..They removed the vent within 12 hours and her stats and all stayed good.. By the third day after surgery they let us walk her around. All that was left was her drainage tube..She was smiling and doing great.. And she wasn't blue anymore.. That was a proud moment.. They took her drainage tube out on day 5.. We left the hospital for home on February 4th, 2010.. Seven days after her surgery.. What a surprise that was.. We came home and once again I was scared.. But day by day we went.. She had her first check up 2 weeks after we came home and everything looked real good.. Bethanne started crawling finally.. She also started holding her breath when she cried and the cardiologist said that is because now she can, before she didn't have it in her.  That in itself was scary.  If she cried would she catch her breath or not.  Bethanne had her 1st birthday party.. She started walking at about 15 months old.. At first she would stand and not walk.. Then one day she just took off.. We went to the cardiologist again in July 2010 and once again she is fine.. In January 2011 she was seen again for an echo and ekg and all looked great.. She is gaining weight and growing.. We will see the dr. again in July 2011 for another echo and ekg and if all is well he said 1 1/2 years.. Then it should be time for her 3rd open heart surgery which is called the fontan.. Not a day goes by that I don't pray to god to keep her safe but to also thank him for all the blessings he has given us.

From first surgery to second surgery

When we arrived at the new hospital it was chaotic.. We arrived on May 10, 2009 and her 1st open heart surgery called the Norwood was scheduled for May 12, 2009.. I cried so much.. The day before her surgery I got a surprise. They finally let me hold my baby girl for about 10 minutes. Oh how I longed for this.. She was so fragile, I was scared to hold her with all her wires and tubes.. On the morning of her surgery we had a minister come in and say a blessing over her..To help God guide the dr.s hand durning her surgery.. When they took her off to the OR, I just sat and cried and cried and prayed so much.. It was like a 4 hour surgery.. When it was over the dr. came out and told us it all went well.. Thank you god for keeping her safe. After about 4 days we came in and she was off the vent.  We were totally shocked. But we got too excited because she d-stated and had to go back on the vent.  We were told we would stay at that hospital until her recovery to go home.. Well that was not to be the case.. They sent her back to the original hospital 10 days after surgery.. We got to the hospital about an hour after she arrived.. The dr. met us and said Bethanne was in bad shape. They sent her back with septisemia.. Her stomach was bloated and they infiltrated a calcium drip in her left arm and she almost lost her arm.. The dr. was so mad because they didn't know the cause of the stomach or anything.  Things did not look good at all..She was in worse shape now then before.. She was in the NICU for a long time..She was d-stating about 8-9 times a day.. The beepers and sounds of the machines was very scary and mind boggling.  After about a month of being back at this hospital the dr. ran some tests to see if Bethanne had cystic fibrosis.. If she did they feared she would never come off the ventilator..So I told my friend I was going to ask the drs. to remove the vent and let whatever happened, happen.  I didn't want to keep seeing her live like this.. It wasn't fair.. Well I never did ask them to take her off.  So each day her belly just wasn't getting better. It wasn't getting worse either.  We would come home on the weekends to get a break from the hospital which is 3 hours away and her cardiologist called me a few times and said things weren't good and he didn't expect her to pull through.. Oh dear God, what can I do?  How can I save my baby?  The answer was, I couldn't. If God wanted her home she was going.  Then one morning we went in and the vent was gone.. Oh my god what are they doing.. After they removed the vent and some of the pain meds she started getting better.. The first time to hear her cry was just so heart wrenching.  But I could finally hold my little girl now.. It had been about 1 1/2 months after her surgery.  Our next obstacle was getting her to feed.. She would not take the bottle for long and then she always threw up.. She didn't take well to the formula so they tried using breast milk.  She did no better on that.. They put in a NG tube in her nose to feed her.. She was doing well with that.. They started out with very little bits of formula.. Then we started small feeds with the bottle, still not real good with that..Finally the day came when she came off the oxygen. Oh what a thrill that was.. Our daughter was getting better.. She would soon be coming home.. They decided in order for her to come home she needed a mickey button (feeding tube) So another surgery to put that in. We had to learn how to feed her through the button.. That was a scary experience.. But we did it.. It was time to bring our little girl home.. Finally..On July 29, 2009 it was time.  I was so happy to get Bethanne home but so very scared too.. What is something happened? What would I do?  But I just took it day by day.. We worked on bottle feeding her also.. After a month of being home she only ate from the bottle. No more feeding tube feeds.. That was so great.. When we got her home she thrived. She grew and she is so very loved.. She had lots of company.. She has liked the attention.. It was nice to hold her all the time and not to hear any beeps.  At her 6 month check up with the cardiologist and kidney dr. all was well.. They removed the mickey button.. That was a great day.. Bethanne continues to thrive and learn.. In January when Bethanne was 9 months old she had to go in for a heart cath.. They were hoping they could wait about 6-8 weeks for her second surgery but overnight they could not keep her oxygen above 70, so she was sent to the same hospital that did her first open heart surgery..

Sunday, March 27, 2011

From birth to first surgery

When Bethanne was 12 hours old they did some exploratory surgery to find out about the fluid in her bowels and they found her small and large intestines were not connected.. They connected them and while in there they removed her appendix. We had Bethanne baptized before her surgery.  She was then on a ventilator, and high doses of morphine for the pain.  It was touch and go.. She was in serious shape.. I kept praying for god to keep her safe..We were just waiting to find out when her heart surgery would be. If she was strong enough to even make it.  I still hadn't got to hold her again.  How my arms longed to hold my little girl, kiss her and tell her all would be okay. Every day she just was not getting better. Then the day came for them to transport her to the hospital she was to have her surgery in..

Bethannes Birth

 I had a normal delivery but with pain meds as I had horrible back labor.. I layed on my side. I didn't want to lay on my back.. I was so drugged up that my friend kept telling me to get on my back because they had lost the babies heartbeat..For almost an hour they did not have a heartbeat.  .Bethanne is born at 2:02 am on April 27, 2009.. The cord was wrapped around her neck 4 times.. She was beautiful.. I get to hold her for around 30 seconds before they whisk her away to the NICU.. She goes on oxygen and all kinds of medicines to keep her ductus valve open.. My daughter has Tricuspid Atresia w/ VSD, pulmonic stenosis, Left multicystic kidney and vertebral anomaly.  How is was explained to us was that she needed to go on prostaglandins to keep her ductus valve open. It would have closed otherwise and she would have passed away..

My Pregnancy

I had a pretty normal pregnancy for Bethanne.. I went for all my dr. visits and all my tests.. I know I was excited to hear her heartbeat for the first time.. Sometime I guess around 4 months pregnant at one of my dr. appointments the dr. told me I had a non-viable pregnancy and I should have a medical abortion.. I don't know why she said that. I heard the babys heartbeat.  So there was no way I was aborting my baby.. During all my sonograms they told me her heart was fine.  We found out at like 6 months that she had a Left Multicystic Kidney.  They also informed us that she had fluid in her bowels and they weren't sure why.. 2 weeks before she was due I was sent to a perinatal center for a more thorough ultrasound on her kidney and I was told I needed to go immediatley to see a peds cardiologist.. Why? Was the question.  So we went and cardiologist did the ultrasound himself and we found out Bethanne was going to be born with a CHD..A CHD called Tricuspid Atresia w/ VSD and pulmonic stenosis.. along with her only one good kidney.. I kept asking why?  What did I do wrong?  About a week before I had her I ended up having an amniocentesis and it ended up coming back she had no chromosomal abnormalities.