Boone is home
Hugh drove Boone and I home on Friday!
There were 3 blood tests that needed to be done to test for Neonatal Hemochromatosis. They tried to do the blood work twice on Thursday, but didn't get all the results they needed, so they tried again on Friday morning. They had to poke Boone at least 15 times to get enough blood for these tests (all 4 limbs and multiple places in his head). His blood is quite thick and as the nurses said, "He doesn't like to give it up." In the end we only got results from 2 of the 3 tests, because his blood in the vials kept clotting making it unusable.
Both test results we did get had levels that were slightly above "normal", but these levels were no where close to NH levels. For example, Ferritin levels in newborns are around 70, Boone's level was 137. NH levels are above 800. Boone also had an ultrasound on his liver Friday afternoon that was normal (this wasn't shocking, because we had such positive results on the blood work). The neonatal hemotologist didn't want to poke Boone anymore on Friday afternoon, so we are heading back to the hospital on Wednesday to run the last test. She will also re-run the other 2 tests to confirm that the levels are decreasing (She spoke to Dr. Whitington about Boone's results and he felt they were so positive he wouldn't bother with the re-test. Our hemotologist is being very thorough and I'm not complaining.) The last test that needs to be done measures the blood's ability to clot. The hemotologist wants the "number" from this test, but we (her included) feel like it's a formality since his blood was clotting too quickly to get the test results!
Boone is our 30% baby. He had a 70% chance of spending time in NICU being treated for NH. We spent one night in the hospital. We are feeling incredibly lucky.
I apologize for the delay in the update. Boone is a super baby (so far :-). I have been having some challenges with my recovery from his delivery and with breast feeding and haven't felt like connecting with ANYONE! In this moment I don't physically feel better, but my head is in a good place. My challenges won't last forever.
I have so many things to write about. Hopefully I am on the mend and can find a happy place to sit and write!
There were 3 blood tests that needed to be done to test for Neonatal Hemochromatosis. They tried to do the blood work twice on Thursday, but didn't get all the results they needed, so they tried again on Friday morning. They had to poke Boone at least 15 times to get enough blood for these tests (all 4 limbs and multiple places in his head). His blood is quite thick and as the nurses said, "He doesn't like to give it up." In the end we only got results from 2 of the 3 tests, because his blood in the vials kept clotting making it unusable.
Both test results we did get had levels that were slightly above "normal", but these levels were no where close to NH levels. For example, Ferritin levels in newborns are around 70, Boone's level was 137. NH levels are above 800. Boone also had an ultrasound on his liver Friday afternoon that was normal (this wasn't shocking, because we had such positive results on the blood work). The neonatal hemotologist didn't want to poke Boone anymore on Friday afternoon, so we are heading back to the hospital on Wednesday to run the last test. She will also re-run the other 2 tests to confirm that the levels are decreasing (She spoke to Dr. Whitington about Boone's results and he felt they were so positive he wouldn't bother with the re-test. Our hemotologist is being very thorough and I'm not complaining.) The last test that needs to be done measures the blood's ability to clot. The hemotologist wants the "number" from this test, but we (her included) feel like it's a formality since his blood was clotting too quickly to get the test results!
Boone is our 30% baby. He had a 70% chance of spending time in NICU being treated for NH. We spent one night in the hospital. We are feeling incredibly lucky.
I apologize for the delay in the update. Boone is a super baby (so far :-). I have been having some challenges with my recovery from his delivery and with breast feeding and haven't felt like connecting with ANYONE! In this moment I don't physically feel better, but my head is in a good place. My challenges won't last forever.
I have so many things to write about. Hopefully I am on the mend and can find a happy place to sit and write!
This makes me so happy! You guys deserve this and it brings the biggest smile to my face! Oh so happy for you..he is beautiful!
ReplyDeleteJordan - we are all so happy for you, Hugh & Calder. I am anxious as everyone to meet Boone and to celebrate your miracle. Love you all.
ReplyDeleteWonderful news! I am so happy for you. Take care.
ReplyDeleteThanks for the update Jordan! Glad you are all home:) The best things in life don't come easy, but they are worth it 1000 times over. Happy for you all!
ReplyDeleteI am so happy for you guys! Take care of yourself, looking forward to hearing about your journey :)
ReplyDeleteCongratulations!! :) :) :) So happy that everything went well and you're at home already. Thank you too, for being so honest and letting me feel like I'm normal. <3
ReplyDeleteThank you for the update, we have been thinking of you all. A big congrats to you and the family on the arrival of Boone! My heart is filled with happiness for you guys :)!! xo
ReplyDelete