Saturday, December 7, 2013


When asked by family and friends, and well wishers too, on how Maia is doing, our automatic answer is usually "good." Whether or not we go further into detail about how she's doing usually depends on how much time we have to talk, the surroundings (party, shopping mall, etc.), or even something as simple as how we're feeling at that particular moment. Lately, we've been realizing more and more that using the description "good" can be very misleading! 

One of Maia's good days... she was upgraded to a crib!
As Maia's parents, the term good is all relative. We know the seriousness of her condition, so having a "good" day for Maia pretty much means her vital signs were good, her blood gases were good, she was stable and had no complications... sometimes it can even mean she survived another day! For Maia, things can change at any moment so assessing her each day is very important. When telling people that she's doing good, this usually leads to the question "when will she be coming home?" But of course our definition of good is completely different from someone else who's not in our situation. Their well-intentioned question is one that nobody has the answer to right now, not even the doctors. It's one of the reasons why Maia is assessed on a minute to minute, day to day basis because she is still very sick and any setback like a fever or infection can potentially be detrimental to her. Every time we're away from her and receive a phone call with a 415 area code, our hearts pound violently and we are terrified! So far, we've only had one middle of the night emergency phone call (knock on wood), when they had to reopen her chest. Unfortunately, there is no time frame on when she may be coming home... and we really are ok with that! For me personally, if there comes a time when the Drs. are able to give us some sort of date, I don't want to know! It's like setting myself up for disappointment! I might have my heart set on that particular date and when that time finally comes and she doesn't end up coming home, I will be so sad... so I would rather take things day by day and be pleasantly surprised when that day finally arrives!
Some of Maia's facial expressions


Many have asked if they can come and visit Maia. Since she is more stable than she was about a month ago, we feel a little more comfortable letting visitors come and see her. Please keep in mind that she is in the pediatric cardiac ICU, so it's important to follow their visitor guidelines, especially during flu season. We simply ask that you contact either me or Gordon and let us know when you would like to come visit. We are there everyday, but at different times, since we also try to spend time with Marcus. We also ask that anyone not be sick, or if anyone has been sick, to wait a few days, even if they're feeling better. Both Gordon and Marcus were sick during Thanksgiving week, and as much as it hurt them not to see Maia, they both had to stay away because it just isn't worth it to get her sick. Children under 12 years old are not allowed to visit, so please do not bring kids, if at all possible, for both their protection and for Maia's. Also, please keep in mind that Maia is recovering from surgery and has scars, tubes, wires, and IVs... it's one thing to see her pictures, but seeing her in person may be overwhelming for someone who's never been in a pediatric ICU.

UCSF Benioff Children's Hospital Visitor Guidelines

Parents may visit at any time. However, you may be asked to leave the PICU if there's an emergency or a need to perform a special procedure.

Sisters and brothers may visit after being screened by a PICU staff member. Please closely supervise your children at all times. Children under the age of 12 who are not siblings are not allowed in the PICU.

Family members and friends may visit if accompanied by a patient's parent. When a parent can't visit for an extended period, arrangements can be made to allow relatives or friends to visit unaccompanied by a parent. However, you must leave written permission with the unit service coordinator. Please keep in mind that we may need to limit the number of visitors to maintain a calm and safe environment.

For visitors, we have a waiting room with a TV. There also is a kitchen equipped with a microwave oven, refrigerator, freezer and cabinets that you may use if you wish to bring food to the hospital. Please ask your nurse if you have questions.

Visitors are not allowed if they have a cold, flu or fever or if they were recently exposed to a contagious disease.
Marcus chose a Charlie Brown Christmas tree for Maia

... and whether or not you're able to visit, we thank each and every one of you for all your prayers, love, and support. We are grateful and blessed to have you in our lives.

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