So many wins last night. A great feeding and Gesina took 70 ml with her nighttime nurse, even though she was nearly asleep, and 95 ml from her morning nurse. But when I went down to see her at noon today, the doctor said Gesina had lost weight yesterday. The doctors have decided to face the facts and do what they think is best for Gesina. On average, she has been eating only 2/3 of her nutritional needs since the feeding tube came out. Functioning at this nutritional level means she is more tired, which is getting in her way of eating. So, the doctor told me they are putting her feeding tube back in and her soonest possible time to come home is Monday. At first, I thought they were messing with me. When I realized that the nightmare wasn't over and what he was telling me is real and going to happen, I decided that this is what's best for Gesina and it's about her. I told the doctor this, that I understand that this is what's best for Gesina and that I'll take care of me and get over it. But every hour I seem to have to repeat this to myself to keep from losing it.
There are a million reasons that this is good for Gesina. We will continue to focus on getting her to eat large amounts with the goal of not needing the feeding tube to "finish" her feedings with. With a feeding tube, we can do two things. We can focus on solving her feeding issues without the frantic need to figure it out quickly before she loses too much weight. We can also get her weight back to where it should be so she is awake and alert more often, allowing her to stay awake for her feedings. With this additional time, I plan on staying the night at the hospital Thursday night as well to continue working on nighttime feedings. So it's important to remind myself that we may have lost a battle but we haven't lost the war. I don't know too many teenagers walking around with a feeding tube so eventually, we will figure this out.
Emotionally, this is quite a blow. As I like to say, this is going to leave a mark. At 7 weeks Gesina should be smiling at me and starting to use her voice by cooing and other random vocalizations. Instead, she barely knows me from the various nurses she spends most of her time with. She doesn't vocalize because she has no one to vocalize with. She spends 24 hours a day in a crib with bars and stares at the ceiling. I need to get this child home so she can develop and bond with her family. I really hope by tomorrow I can get my perspective back. I'm just going to keep repeating the positives of the doctors' decision to myself every time I get down or become overwhelmed by emotions. I'll also keep in mind what Adrian says, that in 6 months Gesina will be making up for lost time and running this household like a champ. But until I can get my head around this, I'm just going to be sad for one night. I'll be better tomorrow, promise, for Gesina's sake.
Oh Sweety, I'm so sorry...:( I thought after last night For Sure, she'd be almost home...:( I agree, she needs to be home. She's basically on hold in an environment with limited human contact:( I just believe she'd do better NOT being so bored...:( Cry, be sad, be disappointed, be angry, be down hearted...all of these are normal, and all are okay. When you've had your time, blow your nose, wipe your face, look yourself in the eye(mirror) and tell yourself, you're a good mama and your beautiful baby will be home soon. She needs stimulation, she's got to be bored, And she needs it soon.
ReplyDeleteWe aren't giving up. I know this is just breaking your heart. Mak said to tell you he is so sorry, but not to give up! What ever it takes to get her home so she can start living a real family life!
Jackie, when you're there to see her, are you allowed to walk around with her? Like in the hallway? Do they let you have "time" just talking too and interacting with her? Would they let you walk her in the hallway? Just to break up the monotony? If not, I might would ask the Doctors how they expect her to progress if she's basically kept in a "lab environment"? In a bed, bored, nothing to do. Nothing to stimulate her to make her use energy to be truly hungry?
ReplyDeleteI have a friend who's son 11 yr-old has CP...he ate on his own for quite awhile, but was getting lung infections all the time (because food would drop into his lungs) and would occasional choke...they had to go back to a feeding tube a few yrs ago...they've adjusted..just to show you it became a "new normal" for them & not considered a set back. Hope you and Adrian are well! Luv reading all the posts
ReplyDeleteJackie you have got to be the strongest woman I know. All the ups and downs that Gesina has had and you just keep bouncing right back. Gesina is very fortunate to have a mommy who is so strong. Just keep telling yourself that it will be better soon and she will be home where she belongs with or without the feeding tube.
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