Last night we got some clarity with some of the questions foremost in our minds. The neurosurgeon was able to visit Maggie and review her CT scan. He saw nothing of concern suggesting the need for immediate surgery. Maggie's ventricles seem fairly typical and the pocket of fluid at the rear of her brain is not under pressure indicating that it is not a concern at this point either. The doctors will continue to monitor her fontanelle and head circumference in the coming days to determine if anything changes, but for now, no worries with her brain.
Yesterday Maggie was receiving pressure through her breathing tube but was breathing room air (so no oxygen was being pumped in with the pressure). After the neurosurgeon saw Maggie he said she could take nutrients through her feeding tube until the pressure through her breathing tube could be reduced at which time she could begin taking a bottle and start nursing. Through the night the nurses systematically reduced the pressure until now she's at the lowest setting. She's progessing well and we expect (hope) that she can start taking a bottle and nursing later today. Her IV started to leak in her hand so they moved it to her head but that's no big deal. If we had a nickel for every time Davey had to have his IV moved to his head we'd have like four nickels. Maggie will have to be on her side or tummy for some time until her back is deemed good to go. We anticipate that we'll be able to take her home at some point but will have to deal with the complexities of caring for a baby that can't lay on her back or be held upright. The same was true for Davey and we're gearing ourselves up for that eventuality. It won't be permanent, however, and we know we'll be up for it.
As for her back, we emailed some pictures to our Houston doctors to get some answers. That yellow area is, in fact, the patch that was placed during the fetal surgery. Her skin has grown (is continuing to grow) under the patch and at some point the patch will slough off like a scab. You can guess who wants to keep it for the scrapbook and who wants to throw it away when that happens. Potential risks with the patch all deal with the condition of the skin underneath it. The hope is that when the patch comes off the skin underneath will be healthy and whole. Any leaking or incomplete healing would require some type of additional repair. We'll also be meeting with the plastic surgeon later today to see what his take on her back is and may find out more.
We're so grateful for our Houston team. (We know they have other cases and patients, but they make us feel like we're the only people they care about). They continually call us and our doctors here, and they consult with other doctors at the San Francisco fetal surgery site, they're just the best.
Millie is doing so well. Her pain is being managed completely by the wonderful nursing staff at the University Hospital and she is walking and moving with all the grace and speed of a retired Russian gymnast. She keeps talking about how good she feels---I think a lot of it has to do with how much better her recovery has been in comparison to the aftermath of the fetal surgery.
As for questions dealing with physical attractiveness, studies dealing with the subject typically look at face symmetry as the most salient feature in individuals deemed "attractive". I've never thought my face was particularly symmetrical though when I lived in the Philippines on my mission my big nose was definitely an asset and culturally very desirable. Maggie's features on the other hand, whether obscured or stretched by tubes, tape or syringes are unquestionably attractive. I am madly in love with her and can't wait to take her home unfettered by the trappings of the NICU. She, like Kate, Josie, and Davey is an angel and Millie and I are overwhelmed by the blessing and miracle of having such wonderful children.
Yesterday Maggie was receiving pressure through her breathing tube but was breathing room air (so no oxygen was being pumped in with the pressure). After the neurosurgeon saw Maggie he said she could take nutrients through her feeding tube until the pressure through her breathing tube could be reduced at which time she could begin taking a bottle and start nursing. Through the night the nurses systematically reduced the pressure until now she's at the lowest setting. She's progessing well and we expect (hope) that she can start taking a bottle and nursing later today. Her IV started to leak in her hand so they moved it to her head but that's no big deal. If we had a nickel for every time Davey had to have his IV moved to his head we'd have like four nickels. Maggie will have to be on her side or tummy for some time until her back is deemed good to go. We anticipate that we'll be able to take her home at some point but will have to deal with the complexities of caring for a baby that can't lay on her back or be held upright. The same was true for Davey and we're gearing ourselves up for that eventuality. It won't be permanent, however, and we know we'll be up for it.
As for her back, we emailed some pictures to our Houston doctors to get some answers. That yellow area is, in fact, the patch that was placed during the fetal surgery. Her skin has grown (is continuing to grow) under the patch and at some point the patch will slough off like a scab. You can guess who wants to keep it for the scrapbook and who wants to throw it away when that happens. Potential risks with the patch all deal with the condition of the skin underneath it. The hope is that when the patch comes off the skin underneath will be healthy and whole. Any leaking or incomplete healing would require some type of additional repair. We'll also be meeting with the plastic surgeon later today to see what his take on her back is and may find out more.
We're so grateful for our Houston team. (We know they have other cases and patients, but they make us feel like we're the only people they care about). They continually call us and our doctors here, and they consult with other doctors at the San Francisco fetal surgery site, they're just the best.
Millie is doing so well. Her pain is being managed completely by the wonderful nursing staff at the University Hospital and she is walking and moving with all the grace and speed of a retired Russian gymnast. She keeps talking about how good she feels---I think a lot of it has to do with how much better her recovery has been in comparison to the aftermath of the fetal surgery.
As for questions dealing with physical attractiveness, studies dealing with the subject typically look at face symmetry as the most salient feature in individuals deemed "attractive". I've never thought my face was particularly symmetrical though when I lived in the Philippines on my mission my big nose was definitely an asset and culturally very desirable. Maggie's features on the other hand, whether obscured or stretched by tubes, tape or syringes are unquestionably attractive. I am madly in love with her and can't wait to take her home unfettered by the trappings of the NICU. She, like Kate, Josie, and Davey is an angel and Millie and I are overwhelmed by the blessing and miracle of having such wonderful children.
She's adorable and I'd love to reach in my screen right now and kiss her! I'm glad to hear that things are falling into place. We continue to pray that everything works out and that Millie and Maggie both recover remarkably! Thanks for the great update!!!
ReplyDeleteThanks for taking time to update all of us, Matt! Maggie is so beautiful. I especially love the picture when her eyes pop open. Wow! I'm glad you're getting some answers and pray answers will come soon for the rest.
ReplyDeleteRetired Russian gymnast??? Just one more reason NOT to mess with Millie Killpack.
ReplyDeleteThanks for taking time to post. We feel apart while being so far away. Maggie is just precious and we can't wait to meet our new niece/cousin. xoxo
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