One week ago today Ashley and I along with our family and those who have been following Landens story entered the day with hope of something miraculous. We knew we had an amazing God on our side, and lets face it....Landen is a Hatch!! He was bound to surprise us. :) That was exactly what he did! We walked into that day expecting that by days end Landen would be delivered, rushed to a NICU to be stabilized, then rushed to the catheter lab for an emergency procedure to open his ASD (atrial septal defect) and would face a very difficult start to his life at the Children's CICU because he literally had half a normal heart, with two other major complications. Instead, Landen was delivered and semi-calmly (although it didn't seem it at the time) brought over to Children's CICU. From there he stabilized on his own...no intubation, no central lines, no supplemental oxygen and best of all with no procedures or surgery. He was breathing on his own, and even though all of his "defects" still existed, they seemed to work together in some ways, and where they didn't, he compensated on his own. For the last week Landen continues to be the talk of the CICU here at Children's. He is cherished by the nurses to the point where every morning I wake to new nurses starting there shift and dropping in to see him (more like swooning over him), and those who have worked with him before coming by just to have some time with him!
In addition to Landen delivering successfully and starting life much better than expected, Ashley has recovered so well! She was up walking much faster than the girls and has adjusted so well to the transition of life between Boston and Raynham. Its a very hard thing to endure, but I think we have a system in place to maximize our time with the girls while supporting Landen as well. With the amazing support of family at home and Ashleys parents Skip and Lori staying with the girls, they have embraced the excitement of having a new brother, while also continuing to support a "normal" life at home. Lyla loves asking about Landen and looking at pictures, and Maddie is constantly asking what is new with him. She wants to know every step and continues to be a partner in this process. As a husband and a father, I cannot tell you how amazing it is to see the family you love and support rise up to the occasion like this! I truly am a very blessed man and I will never take that for granted!
We did have a great visit from our friends Ray and Joy today. Landen had just fallen asleep so we had lunch first at my new favorite BBQ place here in the city called Sweet Cheeks Q (thanks auntie Darla for the referral!). After a great lunch we made it back only to have Landen in the middle of another echo...so Ray and Joy got a much shorter visit with Landen than anticipated :( and no pics...we will have to make up for that sometime :)
So here is the real update...I know, I know...everyone wants to know whats next?!?!! Well, we do to honestly. At this point it is still a little complicated but here is what we do know. As I have mentioned before in a previous post (click here to read), his PDA is still open, his ASD is still to small and his heart is still....well half a heart. He has been eating so well, and doing everything a "normal" baby would be doing, yet his little body is still under a lot of stress while he compensates for the increased pressures in his heart. His respiratory rate is much higher than a typical newborn (his is typically 80's and spikes to 105 where typical is 30-60 bpm) and this is due to the increased blood flow coming back from his left atrium. The pressure is building up because his ASD (samll hole between the atrium's which is typically a defect that would need to be closed) is to small, and currently the only real outlet for the blood to flow through either of his major arteries. Over time this would create damage to his lungs, and reduce blood flow to the other critical organs. With that all said, he has really thrived during this first week, and is prepared for the next steps.
Dr. Tworetzky and his staff feels that it is now time to do the catheter procedure. This procedure is currently scheduled for sometime this afternoon (May 28th), and its purpose will be to inspect the pressure inside the left atrium while also increasing the size of his ASD. This will mean sedation, intubation and recovery. All in all he could possibly be eating by mouth by the end of the day, but we need to be open to changes. Once he has had a couple of days to stabilize from that procedure they will need to assess his condition. It may seam counter intuitive, but by increasing his ASD we reduce the pressure in the left atrium, but we will not necessarily be reducing the blood flow to the lungs yet. It will now just flow through the pulmonary artery as that will be path of least resistance and back into his lungs. If that blood flow is to much, he will need to be opened up and have his pulmonary artery restricted. It's important to know that he already has a slight restriction on that artery, so it is possible that after the catheter procedure is done, the restriction will be enough to balance blood flow to both arteries and that is what we want. Only time will tell....and lots of prayer!
What does all this really mean? Well, tomorrows procedure is something that at this point is inevitable. Waiting would increase risk of damage to other organs, but doing it now could make him appear worse before he can get better. We are in such great hands hear and we trust the opinions of the Doctors and staff at Children's. It is obvious to us that God has us here because they are the best and we wouldn't change that for anything. Lets pray that all goes well tomorrow, and if its in God's will to just fix this tonight...well then lets do it! :)
Thank you for your continued support and prayer, it means more than you may know!
Enjoying the journey,
George, Ashley, Madison, Lyla and Landen...oh ya, and Silver probably likes us too ;)
In addition to Landen delivering successfully and starting life much better than expected, Ashley has recovered so well! She was up walking much faster than the girls and has adjusted so well to the transition of life between Boston and Raynham. Its a very hard thing to endure, but I think we have a system in place to maximize our time with the girls while supporting Landen as well. With the amazing support of family at home and Ashleys parents Skip and Lori staying with the girls, they have embraced the excitement of having a new brother, while also continuing to support a "normal" life at home. Lyla loves asking about Landen and looking at pictures, and Maddie is constantly asking what is new with him. She wants to know every step and continues to be a partner in this process. As a husband and a father, I cannot tell you how amazing it is to see the family you love and support rise up to the occasion like this! I truly am a very blessed man and I will never take that for granted!
We did have a great visit from our friends Ray and Joy today. Landen had just fallen asleep so we had lunch first at my new favorite BBQ place here in the city called Sweet Cheeks Q (thanks auntie Darla for the referral!). After a great lunch we made it back only to have Landen in the middle of another echo...so Ray and Joy got a much shorter visit with Landen than anticipated :( and no pics...we will have to make up for that sometime :)
So here is the real update...I know, I know...everyone wants to know whats next?!?!! Well, we do to honestly. At this point it is still a little complicated but here is what we do know. As I have mentioned before in a previous post (click here to read), his PDA is still open, his ASD is still to small and his heart is still....well half a heart. He has been eating so well, and doing everything a "normal" baby would be doing, yet his little body is still under a lot of stress while he compensates for the increased pressures in his heart. His respiratory rate is much higher than a typical newborn (his is typically 80's and spikes to 105 where typical is 30-60 bpm) and this is due to the increased blood flow coming back from his left atrium. The pressure is building up because his ASD (samll hole between the atrium's which is typically a defect that would need to be closed) is to small, and currently the only real outlet for the blood to flow through either of his major arteries. Over time this would create damage to his lungs, and reduce blood flow to the other critical organs. With that all said, he has really thrived during this first week, and is prepared for the next steps.
Dr. Tworetzky and his staff feels that it is now time to do the catheter procedure. This procedure is currently scheduled for sometime this afternoon (May 28th), and its purpose will be to inspect the pressure inside the left atrium while also increasing the size of his ASD. This will mean sedation, intubation and recovery. All in all he could possibly be eating by mouth by the end of the day, but we need to be open to changes. Once he has had a couple of days to stabilize from that procedure they will need to assess his condition. It may seam counter intuitive, but by increasing his ASD we reduce the pressure in the left atrium, but we will not necessarily be reducing the blood flow to the lungs yet. It will now just flow through the pulmonary artery as that will be path of least resistance and back into his lungs. If that blood flow is to much, he will need to be opened up and have his pulmonary artery restricted. It's important to know that he already has a slight restriction on that artery, so it is possible that after the catheter procedure is done, the restriction will be enough to balance blood flow to both arteries and that is what we want. Only time will tell....and lots of prayer!
What does all this really mean? Well, tomorrows procedure is something that at this point is inevitable. Waiting would increase risk of damage to other organs, but doing it now could make him appear worse before he can get better. We are in such great hands hear and we trust the opinions of the Doctors and staff at Children's. It is obvious to us that God has us here because they are the best and we wouldn't change that for anything. Lets pray that all goes well tomorrow, and if its in God's will to just fix this tonight...well then lets do it! :)
Thank you for your continued support and prayer, it means more than you may know!
Enjoying the journey,
George, Ashley, Madison, Lyla and Landen...oh ya, and Silver probably likes us too ;)
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