Lots of new & exciting things have happened since my last post! Since it looks as though Maia's next heart surgery, the Glenn, won't be for about another 2 months or so, we've been encouraged to help Maia be more like a typical baby her age. Maia also had another catherization procedure on the left side of her chest, which was an area missed during her bigger heart catherization. She also had her peritoneal dialysis (pd) catheter removed, which meant another trip to the operating room. Despite all this excitement, Maia was able to continue adding more hours on the trach collar, and less time on the ventilator.
When Maia's Drs say they want her to do more typical "baby stuff," one of the things they want her to do more of is sitting up. Since she has been in the hospital her whole life, she has spent most of that time laying down on her back. By this time I think most babies can roll over, sit up, and are beginning to crawl. So each day, Maia spends time sitting up on her boppy pillow. She still needs a lot of support and is still a "bobblehead" but everyday she seems to do better with her head control... it doesn't help that she has some big cheeks! We have also started sitting her down on the playmat on the floor. Sooner or later she will build up the muscles to hold her head up high and sit up all by herself. Last weekend, we also took her out of her room to go for a wagon ride around the 7th floor. She looked so nervous! I think she was so used to holding her either her trach collar or vent tube, that when they attached a small oxygen/humidifier onto her trach, she wasn't sure what to do with her hands. She held on to the small tube coming out the side. By then end of her ride, she had actually disconnected it from her trach! But it was such a treat for her since all the other times she's left her room was to have some sort of surgery or procedure done! This time she got to see the big fish tank in the family lounge.
Maia also went back to the cath lab last week to have another catherization on the left side of her chest. The Drs wanted and needed to know what her veins looked like on that side, since that area was missed during her big heart cath. They had trouble accessing her veins last time and had to go through her arteries, so they didn't get a good pic of the blood vessels on the left side of her chest. On her MRI, the Drs knew that Maia's innominate vein was blocked (vein that runs parallel to the collarbone). But they also noticed that she might've grown another vein, but they weren't sure where it led to or how big it was, but they wanted to know these things to see if they would be able to use it in her heart surgery. Dr. Teitel did the catherization again and he said it would only take 5 minutes... and it did! Maia needed no pain meds or sedation. They held her hands up and injected the dye while taking pics and video from 2 different angles. They allowed me to watch from the window in the room next door. After that short procedure, Dr. Teitel explained that her jugular vein comes down the left side and splits into two. One goes to her heart, which we knew, and the other loops around toward the back and connects to the superior vena cava on her right side. They were all pleased to find this out since it's all useful information they need for her surgery.
Today, Maia had surgery to remove her pd catheter. She was taken off dialysis last November but Drs wanted to keep the catheter as a precaution, just in case she needed it for future use. But her kidneys have done well enough that they all came to the conclusion that she didn't need it. Dr. Cohen, her heart surgeon was very passionate about getting this out because of its risk for infection. The only issue that came up a few hours before surgery, was her feeding tube. Dr. Oishi came in to talk to me because the pediatric surgeons had approached him about putting in a G-tube, since Maia would already be under anesthesia and it would save her from having a separate procedure done. This is a feeding tube that is surgically placed into the stomach, instead of passing it through the nasal cavity. However, the problem is that Maia throws up and doesn't seem to tolerate feedings in her stomach, so the G-tube didn't sound like such a good idea. She currently has an NJ-tube, which goes through her nose and down past the stomach, into the jejunum (small bowel). Other options mentioned was a J-tube, a G-J-tube, and also a surgical procedure called the Nissen fundoplication, which would help her reflux. So the pediatric surgeons, the ICU Drs and also Dr. Cohen, talked it over with us before coming to the conclusion that for now, they will only remove the pd catheter as scheduled. Any feeding issues will be addressed later, at a different time.
Throughout all these changes and procedures, Maia has continued to work hard at weaning herself off the vent. This past week she went from doing two 6-hr sprint sessions to a full 12 hour session. By the end of the week, they kept her off the vent for as long as she could tolerate... which was 17, 18 hours!! Then today, when the nurse updated us, she said that Maia made it through the entire night off the vent!!! Yay!! Amazing!... just for tonight they'll put her back on the vent as she recovers from surgery. Then it's back to being off the vent again!
Last but not least, Maia was baptized! We had a short little ceremony right in her hospital room! We originally had planned for a bigger party, with the baptism at the church. But since Maia is still in the hospital, we decided to go for a more low key type of celebration. It was short and sweet and Holy water was put into a syringe! We had 3 godparents present, and 4 with us in spirit. Maia also got to wear the same dress I was baptized in! It was a great day!
So it's been a fun-filled week, full of new and exciting changes. We're looking forward to Maia's future accomplishments, however big or little. We're at a good place right now and we're ready to keep moving forward and take more baby steps... these baby steps are finally adding up! We're so grateful to everyone for the love, support, and prayers. We are so blessed to have you all in our lives!
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| Maia relaxing |
When Maia's Drs say they want her to do more typical "baby stuff," one of the things they want her to do more of is sitting up. Since she has been in the hospital her whole life, she has spent most of that time laying down on her back. By this time I think most babies can roll over, sit up, and are beginning to crawl. So each day, Maia spends time sitting up on her boppy pillow. She still needs a lot of support and is still a "bobblehead" but everyday she seems to do better with her head control... it doesn't help that she has some big cheeks! We have also started sitting her down on the playmat on the floor. Sooner or later she will build up the muscles to hold her head up high and sit up all by herself. Last weekend, we also took her out of her room to go for a wagon ride around the 7th floor. She looked so nervous! I think she was so used to holding her either her trach collar or vent tube, that when they attached a small oxygen/humidifier onto her trach, she wasn't sure what to do with her hands. She held on to the small tube coming out the side. By then end of her ride, she had actually disconnected it from her trach! But it was such a treat for her since all the other times she's left her room was to have some sort of surgery or procedure done! This time she got to see the big fish tank in the family lounge.
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| Boppy time |
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| Maia's first wagon ride |
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| Maia looking nervous |
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| Watching the fish |
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| Maia looking around at all the machines |
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| Getting ready for her mini cath |
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| Mommy's view of the short cath procedure |
Today, Maia had surgery to remove her pd catheter. She was taken off dialysis last November but Drs wanted to keep the catheter as a precaution, just in case she needed it for future use. But her kidneys have done well enough that they all came to the conclusion that she didn't need it. Dr. Cohen, her heart surgeon was very passionate about getting this out because of its risk for infection. The only issue that came up a few hours before surgery, was her feeding tube. Dr. Oishi came in to talk to me because the pediatric surgeons had approached him about putting in a G-tube, since Maia would already be under anesthesia and it would save her from having a separate procedure done. This is a feeding tube that is surgically placed into the stomach, instead of passing it through the nasal cavity. However, the problem is that Maia throws up and doesn't seem to tolerate feedings in her stomach, so the G-tube didn't sound like such a good idea. She currently has an NJ-tube, which goes through her nose and down past the stomach, into the jejunum (small bowel). Other options mentioned was a J-tube, a G-J-tube, and also a surgical procedure called the Nissen fundoplication, which would help her reflux. So the pediatric surgeons, the ICU Drs and also Dr. Cohen, talked it over with us before coming to the conclusion that for now, they will only remove the pd catheter as scheduled. Any feeding issues will be addressed later, at a different time.
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| Before going into the operating room |
Throughout all these changes and procedures, Maia has continued to work hard at weaning herself off the vent. This past week she went from doing two 6-hr sprint sessions to a full 12 hour session. By the end of the week, they kept her off the vent for as long as she could tolerate... which was 17, 18 hours!! Then today, when the nurse updated us, she said that Maia made it through the entire night off the vent!!! Yay!! Amazing!... just for tonight they'll put her back on the vent as she recovers from surgery. Then it's back to being off the vent again!
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| Maia in her shirt dress |
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| Marcus & Maia |
Last but not least, Maia was baptized! We had a short little ceremony right in her hospital room! We originally had planned for a bigger party, with the baptism at the church. But since Maia is still in the hospital, we decided to go for a more low key type of celebration. It was short and sweet and Holy water was put into a syringe! We had 3 godparents present, and 4 with us in spirit. Maia also got to wear the same dress I was baptized in! It was a great day!
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| Maia with Nino Dada |
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| Maia with Nina Bel |
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| Maia with Nina Rena |
So it's been a fun-filled week, full of new and exciting changes. We're looking forward to Maia's future accomplishments, however big or little. We're at a good place right now and we're ready to keep moving forward and take more baby steps... these baby steps are finally adding up! We're so grateful to everyone for the love, support, and prayers. We are so blessed to have you all in our lives!
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