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Mending Jacob's Broken Heart

$24,963 of $25,000 goal

Raised by 304 people in 13 months
January 5, 2018, we found out we are going to have a little boy, unfortunately right after that the doctor informed us that he has a severe congenital heart defect.  To say this news was devastating would not start to explain the pain and sorrow.  The obstetrician  quickly set us up to see a pediatric cardiologist to get a firm diagnosis and begin planning what we could do to help our child.  Between doctors appointments we choose the name Jacob for our son, we didn't want to refer to him as a fetus. He is our son that we already love so much.
The very next week we were in the pediatric cardiologist's office for an fetal echo cardiogram.  The doctor explained that Jacob has hypoplastic left heart syndrome with aortic atresia.  Which mean his aortic valve was almost completely fused shut causing blood to back up and over stretch his left ventricle.  The doctor then went over that there are surgeries that can be completed after birth to compensate for this defect and in 85% of the case the children survive.  He also said there is a surgery that can be completed in utero, however, he wasn't sure we were candidates. He said he would send our information up to Boston Children's Hospital anyway since he does not do this experimental surgery and the  protocols are always changing.
One week later we get a call saying that Boston had reviewed our case and that they believed we were candidates and would like the pediatric cardiologist to complete another echo cardiogram with focus on specific images and measurements.  I rushed into the doctor's office and had those fetal scans done and that night I receive a call from the Cardiologist in Boston going over the procedure, the risks and the benefits.  We took the week end to think these things over and sent a few questions to the doctor, by Monday we had decided that we wanted to do this to give Jacob a better chance of survival.
Thus began what felt like a very long time of back and forth of information, registering, and waiting.  However, we finally got the call they needed us up in Boston on February 4 to be seen by the doctors at Boston Children's and Brigham Women's Hospital.  We drive the 9 hours from Richmond, Virginia, to Boston, Massachusetts, that Saturday the 3rd. We get there and begin the process of making sure that indeed Jacob is a viable candidate for the procedure and again go over the risk and benefits, for us there is no going back this is what our child needed.
February 5th the procedure was performed.  The exact procedure is a fetal aortic dilation, where the doctors position Jacob just right so they can stick a needle into his left ventricle, thread a wire through the needle and then a balloon into the aortic valve to expand the valve to allow for blood to flow out of the heart and hopefully to allow the left ventricle to start to develop more normally.  The procedure took 3 hours after several hours of delays due to having 4 sets of twins being born that day in that same hospital.  The procedure was a success even after Jacob decided he did not want to be cooperative and get in the right position without a struggle.  I was kept over night for observation and the next day they took more ultrasounds and scans and deemed the procedure to be a high success.  Jacob's aortic valve had been opened and he was showing no adverse side affects from the procedure.  We were sent home with the instruction to follow up with the doctors to continue monitoring Jacob's condition with the understanding this did not fix his heart it only gave him a better chance of having a fully functional heart.
Well fast forward and we are coming to the end of this pregnancy.  The pediatric cardiologist here in Richmond has recommended we deliver back in Boston as they are the best at this and would have many different techniques to address what ever may come up.  So we are heading back to Boston.  I have to be there an entire 3 weeks before Jacob is due meaning I will be out of work sooner than expected and will need to stay an additional 4-6 week after Jacob is born for postnatal care and possible surgery.  This places us in tight financial circumstances, we will have additional travel, housing, food, and medical  expenses.  On top of these expenses we have been hit with other health expenses including my diagnoses of gestational diabetes and gestational hypertension, on top of Kevin's own health struggles that put him in the hospital for a couple days.  So not only are we dealing with the additional expenses of delivering a child with health issues we have been hit with so many more complications and unforeseen expenses.  We hope that you will help us at this time with a contribution to assist with these expenses to be able to give Jacob the best possible chance at being a healthy, happy child.
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We are working on planning Jacob's Celebration of Life. It will be on April 27th, and at this time it will be at Four Mile Creek Baptist Church. If we get a large number of people that say they are going we may need to change venue. Event can be found here https://www.facebook.com/events/2124624190947213/
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As many have heard on Jacob's Facebook page, Jacob passed away on Saturday February 23, 2019 at 12:50 pm at 9 months and 4 weeks old. Our lives feel immensely empty with out his smiling face and him suspiciously side eying the nurses. We have been so blessed by everyone's continued support and words of encouragement. One of the things that has touched us the most has been the post about how Jacob has affected those that have followed his story. In the coming days, maybe weeks, we will be putting together a memorial service for Jacob. We continue to welcome your prayers and words of encouragement as we try to find our footing and our purpose after losing our precious son. Thank you again for all the love and support.
-Rachel
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I have been slacking on the GoFundMe page. We have had a huge influx of donations. We want to say thank you so much, because of you Kevin is able to stay up here a little bit longer and we don't have to worry how we are going to make ends meet.
We also have been so bless that we have been able to spread some of that blessing to other families we have met here. For Christmas we sent out 3 pack of snap-up onesies to our first roommate Thomas and to a sweet North Carolina girl Charlotte, both of them have feeding tubes so snap-up onesies make it easier to manage the tubing. We also purchased some light weight blankets, fitted sheet, and specialty baby wipes for our friend Hanna, because she has some sensitivity issues with the hospital laundry and wipes. We were able to do this because of all of you.
Jacob continues to baffle and amaze with his slow progress with weening sedation and the ventilator. We are actually looking at possible extubation on Wednesday. Also we are hoping sometime this week to sit down with the team to discuss the next steps. If there is nothing more surgically we are hoping to transfer closer to home sooner rather than later.
Thank you everyone for your continued support, love, and prayers.
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It has been a long time since I last updated the GoFundMe page as I have been focused on the Facebook page, @teambabyjacobwoods. We have an influx of new supporters and followers so I am going to do a run down of what has happened since the beginning of this year.
January 5th we found out we were having a boy and that he had a severe heart defect. The following week we were given the diagnosis of hypoplastic left heart syndrome with aortic valve stenosis and atrial septum defect. What that meant was that Jacob’s valve that leads out of the heart and sends blood to the rest of the body was almost completely closed causing the blood to flow backwards over stretching his lower left chamber of his heart and causing it to not squeeze. Also the wall between the two upper chambers was closing, this is not supposed to close until after the child is born. Our pediatric cardiologist in Richmond, Dr. Albrecht, sent our information to Boston Children’s Hospital for review and to see if we were candidates for an in utero surgery. A week after that, 2 weeks after finding the congenital heart defect, Boston said they wanted more imaging to verify that we were indeed candidates for the surgery. So on February 4th we were in Boston for a fetal echo to confirm that we could have the in utero surgery and on February 5th we were in the OR having a fetal aortic dilation. The surgery was a success.
The pregnancy continued with new drama, gestational hypertension, gestational diabetes, low amniotic fluid, and eventually Jacob stopped growing in the womb. We weren’t sure if we wanted to go back to Boston for delivery because we really wanted to stay near our immediate family and home. However, Dr Albrecht encouraged us that our best chance would be go back to Boston for delivery because they would have many techniques to address any complications that could come up.
I left April 22nd to Boston, April 25th I was admitted to Brigham and Women’s Hospital because Jacob was under sized, had stopped growing, and was showing signs of distress. April 26th Jacob was born via emergency c-section at 1:25 am. During his first day of life he had to go to the cardiac catherization lab twice, once to open his aortic valve further and open the atrial septum, and then went back to place a stint in the atrial septum to keep it open.
Since then Jacob has had pulmonary bands placed, stage 1 modified Norwood procedure and take down of pulmonary bands, 3 times have had bradycardic episodes requiring CPR with the third placing him on ECMO, pacemaker placement with coronary artery mobilization, many trips to the Cath lab, stage 2 Glenn, and a take down of the Glenn with placement of a central shunt due to pulmonary artery stenosis and poor blood flow to the lungs.
Recently Jacob was place on ECMO again after his take down of the Glenn. They gave him a couple days of rest before going back to the Cath lab to make sure everything that could be optimized had been while not placing to much strain on newly placed sutures. They attempted clamping the ECMO, essentially clamping the ECMO tubes to see if Jacob to do it on his own and all three times his levels started going in the wrong direction even with maximal medication and ventilation support. We made the decision to take Jacob off the ECMO because it wasn’t improving anything and it was only placing Jacob at higher risk for clots and a stroke, and we made the decision to withhold heroic efforts if his heart starts to fail. The expectation was that Jacob would not last long after removal of the ECMO. Since then his labs have comeback improved and they have been able to ween his ventilator. We don’t know what this means for the long term, whether if it is just a little extra time or if there is possibility of something further down the road. Right now we live in the moment and enjoy every minute of time with Jacob whatever time that means.
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Raised by 304 people in 13 months
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