111 Days - There is a light at the end of the tunnel
Today is day 111 and there is a bright light at the end of this incredibly long tunnel.
At the beginning of last week, we were still preparing for discharge around the end of October, but things have drastically changed. We were warned a long time ago that the feeding pathway would be their hardest challenge, especially since they were born so early. It seems easy to all of us, but suck, swallow, and breath is really tough for little guys, especially for ones that have had such extensive lunge trauma. The eating pathway has 4 phases. Phase 1 is where they have to eat at least 75% of their feeding volume by bottle one time per shift or in a 12 hour period. Once they do that four times in a row, they can start on the next phase. If they have one off shift, they start back at the beginning. Phase 2 is when they need to eat 75% of their feeding volume by bottle two times per shift. Phase 3 is exclusively bottle feeding on their own schedule and phase 4 is very similar, except they take out their NG tube (tube directly into their stomach) and just monitor weight gain.
From the very beginning, Elan had an easier time with eating. We are guessing it is because he has had an easier road in the NICU, but it is hard to say for sure. Little Quin wants to eat, but it has been hard for him. Whereas last week, Elan turned a corner. He made it to phase 3 and got to the second shift and then tired out. After that, it seemed like things just clicked for him. As of today, he is on phase 4 and rocking it. This means the discussion of going home is happening. We were thinking they would want to monitor him for a couple weeks after he finished the feeding pathway, but that might not be the case. At first, we were both a little shocked that he might be coming home soon, but we can tell he is ready.
Quin is also making huge strides, but he definitely needs a little more time. It's hard to imagine taking Elan home and leaving Quin here, but we have heard that is pretty typical with twins. The worst part is that you have the opportunity to room in with your child, or basically practice being on your own with them while still in the hospital. Since we are currently in a twin room, this means that Elan will move into the sleep room with us and Quin will have to move into another nursery with other babies by himself. It breaks my heart to even think about him being on his own, but I guess this is preparing us for the future. They will not always be in the same place and as awful as it will be to leave Quin behind when we take Elan home for the first night, I know it is for the best. He needs more time.
As you can imagine, this idea of going home put us into overdrive. The house is not ready, we do not have a travel trailer, and we have not bought a single baby item. While Geoff and my dad worked on the house and figured out where a trailer would go in our yard, my mom and I drove to Tacoma to find a trailer and loaded up on the basic baby essentials. We got a ton accomplished this weekend and will be ready for the boys to come home whenever they are ready. The only thing I really need is a single stroller with a Chicco infant car seat attachment. If anyone has one or knows of anyone who has a stroller I can borrow for a few weeks while we are going back and forth from the hospital, please let me know.
Before all of this transpired, we were planning to do a party at Kulshan CrossFit to celebrate on October 26th. Obviously, plans had to change, but we still definitely want to do something soon. We would love to celebrate with all of you that our boys are coming home.
The picture below is of Elan without any breathing support. We still do not know if he will need to come home on oxygen, but he has done pretty well on his room air challenge today. I also made some better transformation pictures, so you can really see the difference in how much they have grown.
At the beginning of last week, we were still preparing for discharge around the end of October, but things have drastically changed. We were warned a long time ago that the feeding pathway would be their hardest challenge, especially since they were born so early. It seems easy to all of us, but suck, swallow, and breath is really tough for little guys, especially for ones that have had such extensive lunge trauma. The eating pathway has 4 phases. Phase 1 is where they have to eat at least 75% of their feeding volume by bottle one time per shift or in a 12 hour period. Once they do that four times in a row, they can start on the next phase. If they have one off shift, they start back at the beginning. Phase 2 is when they need to eat 75% of their feeding volume by bottle two times per shift. Phase 3 is exclusively bottle feeding on their own schedule and phase 4 is very similar, except they take out their NG tube (tube directly into their stomach) and just monitor weight gain.
From the very beginning, Elan had an easier time with eating. We are guessing it is because he has had an easier road in the NICU, but it is hard to say for sure. Little Quin wants to eat, but it has been hard for him. Whereas last week, Elan turned a corner. He made it to phase 3 and got to the second shift and then tired out. After that, it seemed like things just clicked for him. As of today, he is on phase 4 and rocking it. This means the discussion of going home is happening. We were thinking they would want to monitor him for a couple weeks after he finished the feeding pathway, but that might not be the case. At first, we were both a little shocked that he might be coming home soon, but we can tell he is ready.
Quin is also making huge strides, but he definitely needs a little more time. It's hard to imagine taking Elan home and leaving Quin here, but we have heard that is pretty typical with twins. The worst part is that you have the opportunity to room in with your child, or basically practice being on your own with them while still in the hospital. Since we are currently in a twin room, this means that Elan will move into the sleep room with us and Quin will have to move into another nursery with other babies by himself. It breaks my heart to even think about him being on his own, but I guess this is preparing us for the future. They will not always be in the same place and as awful as it will be to leave Quin behind when we take Elan home for the first night, I know it is for the best. He needs more time.
As you can imagine, this idea of going home put us into overdrive. The house is not ready, we do not have a travel trailer, and we have not bought a single baby item. While Geoff and my dad worked on the house and figured out where a trailer would go in our yard, my mom and I drove to Tacoma to find a trailer and loaded up on the basic baby essentials. We got a ton accomplished this weekend and will be ready for the boys to come home whenever they are ready. The only thing I really need is a single stroller with a Chicco infant car seat attachment. If anyone has one or knows of anyone who has a stroller I can borrow for a few weeks while we are going back and forth from the hospital, please let me know.
Before all of this transpired, we were planning to do a party at Kulshan CrossFit to celebrate on October 26th. Obviously, plans had to change, but we still definitely want to do something soon. We would love to celebrate with all of you that our boys are coming home.
The picture below is of Elan without any breathing support. We still do not know if he will need to come home on oxygen, but he has done pretty well on his room air challenge today. I also made some better transformation pictures, so you can really see the difference in how much they have grown.
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