Today Maia turns 2 months old today!!! Hard to believe I gave birth to this feisty bundle of joy 2 months ago already! Although she's still in the hospital, we are all so happy to have her in our lives. She has brought so much joy to us... and also everyone around her, especially the nurses.
I'm also happy to report that this past week has been very good for our baby girl! She has been very stable with no complications (KNOCK ON WOOD!). Most of her week was spent resting and relaxing, all while taking those very important baby steps! Maia has been on 3 heart meds, epinephrine, dopamine, and milrinone. She was taken off epinephrine over a week ago, and taken off dopamine a few days ago after an echo was done to check on her heart. One of her cardiologists, Dr. Robertson said her heart looked great, especially the way it squeezed! Sounds funny, but squeezing plays such a big part in the way your heart functions. Maia's heart was doing well including the repaired aortic arch. I got the chance to watch the echo being done... and I had no idea what was going on! I thought I was familiar with the way the heart looked, after having so many echos done while I was pregnant, but after Maia's first heart surgery, I really couldn't identify anything!! So even after the doctor pointed things out to me, I wasn't seeing what she was seeing so I just smiled! Ha ha! But I could tell by the look on her face that she was very happy to see Maia's heart working so well!
Maia's renal (kidney) doctors have also started talking about adjusting her dialysis since she's beginning to pee more regularly now. They are still giving her Lasix to help her produce more urine but they would like her kidneys to take on more of the work, and not rely too much on the dialysis. The doctors are still "talking about it" which means they might start this anytime from a few hours, to a few weeks. So who knows when they'll try to start weening her off dialysis! But we're patient, no need to rush anything... if the time isn't right then we can wait!
Maia also has a new room! After her surgery to put in a Broviac catheter to access a central vein, Maia was moved into a bigger room... a room with a view! I don't think she can appreciate the beautiful view of San Francisco and the Golden Gate Bridge just yet, but now she can see some blue skies or some of that infamous fog! We're hoping a change of scenery will help her forward progress and keep her moving in the right direction. Plus, it's not only good for Maia to have a different view, because we all like looking outside the big window... when it's not foggy!
Meanwhile, back at home....
We're still somewhat trying to adjust to a different schedule with Gordon having to return to work full-time. Lately I've been going to the hospital by myself in the mornings on Mondays, Wednesdays, and Fridays. On Tuesdays I wait until Gordon comes home from work and we go together for a late night visit. Thursdays, Gordon works half days so that we can attend our weekly meeting with Maia's team of doctors and nurses. He also tries to visit after work by himself sometimes despite being tired and driving through traffic. So we're really trying to make an effort for at least one of us to be there at the hospital to spend some time with Maia. We feel it's good for her to see us and know we're there, especially since Maia's nurses mentioned that she really responds to people interacting with her at her bedside. Maia seems to be a people person as opposed to some babies that don't like to be touched or disturbed, so this makes us want to be around her even more. On the other hand, big brother Marcus is beginning to feel left out... he's been asking why we have to go to the hospital all the time. So we've told him that it's because Maia is sick, and if anybody else were sick, like himself, we would do the same thing and try to visit as much as we could. We've also been trying to spend more time with him, which is one of the reasons I've been going visit Maia in the mornings while Marcus is at school, so my afternoons are free to spend with him. This past Saturday, while I did a Dirty Girl Mud Run with my girlfriends, Gordon and Marcus had some father-son time at Dave & Busters. Aside from playing games, they were able to spend some quality time together and talk about Maia being in the hospital, and how he feels about it. By having a day with daddy all to himself, hopefully he can feel that he's still important and that we didn't forget about him! Fortunately for us, he's one of those kids that adapts well to change! We also take him with us to hospital only once or twice a week and ask him beforehand if he wants to go, and not always force him to go. So it's been a challenge trying to balance our family life. We want to be there for Maia at the hospital and also be there for Marcus and keep things normal for him at home. We're still trying to figure things out... but as long as family comes first, we're willing to do whatever it takes.
I'm also happy to report that this past week has been very good for our baby girl! She has been very stable with no complications (KNOCK ON WOOD!). Most of her week was spent resting and relaxing, all while taking those very important baby steps! Maia has been on 3 heart meds, epinephrine, dopamine, and milrinone. She was taken off epinephrine over a week ago, and taken off dopamine a few days ago after an echo was done to check on her heart. One of her cardiologists, Dr. Robertson said her heart looked great, especially the way it squeezed! Sounds funny, but squeezing plays such a big part in the way your heart functions. Maia's heart was doing well including the repaired aortic arch. I got the chance to watch the echo being done... and I had no idea what was going on! I thought I was familiar with the way the heart looked, after having so many echos done while I was pregnant, but after Maia's first heart surgery, I really couldn't identify anything!! So even after the doctor pointed things out to me, I wasn't seeing what she was seeing so I just smiled! Ha ha! But I could tell by the look on her face that she was very happy to see Maia's heart working so well!
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| Maia napping with her friends Otto & Ducky. |
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| Wide awake with her double binky. |
Maia's renal (kidney) doctors have also started talking about adjusting her dialysis since she's beginning to pee more regularly now. They are still giving her Lasix to help her produce more urine but they would like her kidneys to take on more of the work, and not rely too much on the dialysis. The doctors are still "talking about it" which means they might start this anytime from a few hours, to a few weeks. So who knows when they'll try to start weening her off dialysis! But we're patient, no need to rush anything... if the time isn't right then we can wait!
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| The view from Maia's window. |
Meanwhile, back at home....
We're still somewhat trying to adjust to a different schedule with Gordon having to return to work full-time. Lately I've been going to the hospital by myself in the mornings on Mondays, Wednesdays, and Fridays. On Tuesdays I wait until Gordon comes home from work and we go together for a late night visit. Thursdays, Gordon works half days so that we can attend our weekly meeting with Maia's team of doctors and nurses. He also tries to visit after work by himself sometimes despite being tired and driving through traffic. So we're really trying to make an effort for at least one of us to be there at the hospital to spend some time with Maia. We feel it's good for her to see us and know we're there, especially since Maia's nurses mentioned that she really responds to people interacting with her at her bedside. Maia seems to be a people person as opposed to some babies that don't like to be touched or disturbed, so this makes us want to be around her even more. On the other hand, big brother Marcus is beginning to feel left out... he's been asking why we have to go to the hospital all the time. So we've told him that it's because Maia is sick, and if anybody else were sick, like himself, we would do the same thing and try to visit as much as we could. We've also been trying to spend more time with him, which is one of the reasons I've been going visit Maia in the mornings while Marcus is at school, so my afternoons are free to spend with him. This past Saturday, while I did a Dirty Girl Mud Run with my girlfriends, Gordon and Marcus had some father-son time at Dave & Busters. Aside from playing games, they were able to spend some quality time together and talk about Maia being in the hospital, and how he feels about it. By having a day with daddy all to himself, hopefully he can feel that he's still important and that we didn't forget about him! Fortunately for us, he's one of those kids that adapts well to change! We also take him with us to hospital only once or twice a week and ask him beforehand if he wants to go, and not always force him to go. So it's been a challenge trying to balance our family life. We want to be there for Maia at the hospital and also be there for Marcus and keep things normal for him at home. We're still trying to figure things out... but as long as family comes first, we're willing to do whatever it takes.
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| Marcus being silly and posing for the camera. |
Prayers For All Four. You Three Have So Much Strength, Very Admirable. Marcus Is So Adorable And Smart. Maia Is So Beautiful And Alert. Take Care Of Each Other. Lots Of Love.
ReplyDeleteThanks again and again for the updates. You and Gordon are doing well. Keep holding onto each other and God and you will continue to make the right decisions with each other and Marcus. Love & prayers are with you. Aunt Noni
ReplyDeleteThank you Oh Lord for Maia's recovery. This little angel will give joy to the whole family and to all who follow this blog. We love you Maia! We love to see you grow to a beautiful little princess!
ReplyDelete