As the days went on.....
As the days went on, it became harder and harder for us as parents and Meah. We could visibly tell that she was getting weaker by the day. If you could stop for a second and picture one of your children on one side of a room (perfectly healthy & doing all the newborn stuff that newborns do..... and then looking on the other side is your child who is struggling for her life & getting fed nutrients through a tube, oxygen through her nose, and a tube down her throat because there is no where for her saliva to go.......My heart was completely breaking into two. I cry as I write about these bitter sweet moments.
We knew Mylah was only going to get bigger and stronger and be discharged to home while Meah was going to continue to get weaker and frailer until she passed. Not only was this situation difficult, the NICU was no environment for our situation. By talking with the Dr.'s, Social Workers, & nurses we were recommended to visit the Childrens Home of Pittsburgh Mario Lemieux Center on Penn Ave. This was the best thing we could have done. I fell in love the CHP's family friendly home like environment as soon as I stepped into the building. Our next step was to get our girls both moved to CHP together. After lengthy conversations with the Dr.'s, we were told that the insurance may not cover Mylah going to CHP because she will soon be discharged and it would be a waste of money to move her for only a few days. I cried and told them, her discharge is not known and I want our girls TOGETHER, and we could not take the fast uncomfortable environment of the NICU for our child whose days are numbered. My biggest fear at that time was loosing our Meah in craziness of the NICU.I did not want that to be where my daughter took her last breaths. My prayers were answered a few hours later while Matt was visiting the girls; our insurance approved both girls for The Childrens Home of Pittsburgh. They were moved from the NICU on Feb 2, 2011 in the afternoon to the CHP.
During our first visit with the girls at the CHP, I felt like a weight had been lifted. Both girls were in the same room in a spacious, quiet, calm environment with only 2 other babies who were distantly spread apart from them. We were welcomed very kindly and immediately got the sense of things being less hectic and more inline of what our family needed to get through this time. Shortly after checking in on our girls we were welcomed by the nurse practitioner on the floor and asked if we could join her for a meeting with the "palliative team." At the time neither Matt nor I knew that palliative is another word for hospice. The meeting that we had with the palliative team and nurse prac will remain as a very memorable time for us in Meah's life. Basically, we discussed Meah and her life expectancy being unknown and our thoughts and feelings in regards to our situation. They reassured us that they have unfortunately walked "this path" with families before and could give us some insight. We discussed that our wishes were for Meah to be as comfortable as she could be and we did not want her to suffer. They said they would not advise us on what to do for Meah, but would support us. Ultimately, the palliative team ended up being a good source and support.
SOME DECISIONS THAT WE ARE BLESSED THAT WE DID NOT HAVE TO MAKE OR
RESORT TO FOR MEAH'S CARE:
1. Giving her a small dose of morphine if need be to help with any pain that she was displaying--we did notice that she was beginning to pull for air while breathing,
2. Cutting back on the IV liquids--- we were told that the liquids may be making her more uncomfortable (lung saturation)---We did not want to do this, because in our eyes it would be like starving your child.
3. Removing the monitors so we could focus on her and not the fluctuation of the numbers when her breathing was going up and down.
4. Possibly removing her oxygen.
The morning of February 3, 2011, I did my usual morning visit with the girls for about 4 hours. I held them both together, sang to them, and took pictures of them. During my visit, Meah's heart rate fluctuated, but came back up with the help of a little oxygen, calling her name, gently stroking her face, and giving her a little nudging on her feet. I was so exhausted from the 9 previous days, that when Matt came home from work, I decided to take a nap before going back to do my evenings visit with the girls. At 5:15 p.m. I heard the phone ring and Matt say "Mylah" oh no "Meah, ok." He called my name and said that Meah's heart rate was slowly dropping. All five of us were out the door and in the car by 5:25p.m. and arrived at the CHP in time for me to hold Meah in my arms as she passed. Meah was amazingly beautiful! I cried, cried, and cried because I was terribly sorry that she/we had to go through this, I was relieved not to see her or us in a state of helplessness, I was sad for our loss of yet another child & family member.
We held Meah for many hours after she passed. Matt and I sat and explained to the kids that Meah has passed away and will no longer be with us. We explained that Meah was sick and there are no medicines that can fix her. I remember Matt telling them about her heart etc... Both boys cried and hugged us tightly and wanted to see their sister to say goodbye. Unfortunately, they understand death and its permanence meaning forever gone and in heaven. They handled it well and are still doing great in regards to Meah's passing.
We were blessed to have had family members meet Meah, but decided to keep Meah's funereal arrangements private.
We knew Mylah was only going to get bigger and stronger and be discharged to home while Meah was going to continue to get weaker and frailer until she passed. Not only was this situation difficult, the NICU was no environment for our situation. By talking with the Dr.'s, Social Workers, & nurses we were recommended to visit the Childrens Home of Pittsburgh Mario Lemieux Center on Penn Ave. This was the best thing we could have done. I fell in love the CHP's family friendly home like environment as soon as I stepped into the building. Our next step was to get our girls both moved to CHP together. After lengthy conversations with the Dr.'s, we were told that the insurance may not cover Mylah going to CHP because she will soon be discharged and it would be a waste of money to move her for only a few days. I cried and told them, her discharge is not known and I want our girls TOGETHER, and we could not take the fast uncomfortable environment of the NICU for our child whose days are numbered. My biggest fear at that time was loosing our Meah in craziness of the NICU.I did not want that to be where my daughter took her last breaths. My prayers were answered a few hours later while Matt was visiting the girls; our insurance approved both girls for The Childrens Home of Pittsburgh. They were moved from the NICU on Feb 2, 2011 in the afternoon to the CHP.
During our first visit with the girls at the CHP, I felt like a weight had been lifted. Both girls were in the same room in a spacious, quiet, calm environment with only 2 other babies who were distantly spread apart from them. We were welcomed very kindly and immediately got the sense of things being less hectic and more inline of what our family needed to get through this time. Shortly after checking in on our girls we were welcomed by the nurse practitioner on the floor and asked if we could join her for a meeting with the "palliative team." At the time neither Matt nor I knew that palliative is another word for hospice. The meeting that we had with the palliative team and nurse prac will remain as a very memorable time for us in Meah's life. Basically, we discussed Meah and her life expectancy being unknown and our thoughts and feelings in regards to our situation. They reassured us that they have unfortunately walked "this path" with families before and could give us some insight. We discussed that our wishes were for Meah to be as comfortable as she could be and we did not want her to suffer. They said they would not advise us on what to do for Meah, but would support us. Ultimately, the palliative team ended up being a good source and support.
SOME DECISIONS THAT WE ARE BLESSED THAT WE DID NOT HAVE TO MAKE OR
RESORT TO FOR MEAH'S CARE:
1. Giving her a small dose of morphine if need be to help with any pain that she was displaying--we did notice that she was beginning to pull for air while breathing,
2. Cutting back on the IV liquids--- we were told that the liquids may be making her more uncomfortable (lung saturation)---We did not want to do this, because in our eyes it would be like starving your child.
3. Removing the monitors so we could focus on her and not the fluctuation of the numbers when her breathing was going up and down.
4. Possibly removing her oxygen.
The morning of February 3, 2011, I did my usual morning visit with the girls for about 4 hours. I held them both together, sang to them, and took pictures of them. During my visit, Meah's heart rate fluctuated, but came back up with the help of a little oxygen, calling her name, gently stroking her face, and giving her a little nudging on her feet. I was so exhausted from the 9 previous days, that when Matt came home from work, I decided to take a nap before going back to do my evenings visit with the girls. At 5:15 p.m. I heard the phone ring and Matt say "Mylah" oh no "Meah, ok." He called my name and said that Meah's heart rate was slowly dropping. All five of us were out the door and in the car by 5:25p.m. and arrived at the CHP in time for me to hold Meah in my arms as she passed. Meah was amazingly beautiful! I cried, cried, and cried because I was terribly sorry that she/we had to go through this, I was relieved not to see her or us in a state of helplessness, I was sad for our loss of yet another child & family member.
We held Meah for many hours after she passed. Matt and I sat and explained to the kids that Meah has passed away and will no longer be with us. We explained that Meah was sick and there are no medicines that can fix her. I remember Matt telling them about her heart etc... Both boys cried and hugged us tightly and wanted to see their sister to say goodbye. Unfortunately, they understand death and its permanence meaning forever gone and in heaven. They handled it well and are still doing great in regards to Meah's passing.
We were blessed to have had family members meet Meah, but decided to keep Meah's funereal arrangements private.