Just eat my love, please

I always thought I would be a good mother but I am sure not feeling like I am. Illyana is on hunger strike. She has been for a while. The cold that started it has come and gone. Another round has hit. We have started cheering for every morsel she puts in her mouth. It's still such a small amount. She is so skinny. I'm terrified for our next pediatrician appointment next week. I dont want her back on a feeding tube. I dont want to go back to the hospital.

I was at my doctor for myself and he asked about Illyana. I said that she wasnt eating again. She has never ate breakfast. He asked what I give her - breakfast doesnt need to be cereal you know. I said that morning I had given her ice cream and she still didnt eat it. He told me to get back to the dietitian but i know she has nothing else to offer me. I saw her about a month ago. I have called to make an appointment but missed the office before the holidays. My doctor said I needed the appointment to cover my ass basically. He said he didnt want anyone to say "what did the parents do for this kid". The parents have done everything. Everything.

Do you have any idea how hard it is to watch your kid not eat day after day? How hard it is to not lose your patience when she says no to 20 different meal items at every meal? I offer everything I can find. I'm currently allowing cookies at every meal because at least they have soemthing in them. I dont know what else to do. I'm at a loss. I dont have any more to add amd she wont take anything. If she doesnt want it she throws it at me. They tell me that kids wont starve themselves but it sure feels like she is. Her energy level is still high and she still has wet diapers. So maybe she isnt but she sure isnt growing. She remains in 12-18 month clothes. She is 19 lbs. I know the pediatrician isnt going to be happy.

We are seeking an autism assessment for her. Toddler autism often shows as minimal food intake, lack of sleep, mixed development, speech delay. Illyana has always been different. She went on the speech language waitlist before she was a year and we have just started seeing the pathologist. She is still up every couple hours in the night although she is finally napping most days. Her eating skills have been deemed appropriate. Her eating problems are behavior and not medical. I'm hoping the pediatrician acknowledges all of this and will do whatever I need to seek a private assessment. We could have a private assessment within 6 months and put in more supports for her. We are on the waitlist for a sensory profile with the occupational therapist. She will be receiving extra one on one support at daycare in the next month or so. I am seeking all these things but they will not make her eat better. They will not take away the stress it causes me when she wont eat.

I know I am doing everything for her. I know that she is lucky to have us for her parents. I know she is ahead of the game because we have had all the issues we have had. We are ahead because I work in child and youth mental health and my team leader encouraged us to pursue an assessment. But my patience is thin and I feel like such a garbage mom. I want to be more for her. I want to be everything she needs. Maybe I am but I dont feel it. Mostly I just want her to eat. Nothing else about her bothers me except that she wont eat. Please eat my baby, you are mama's world.

Mom Ramblings

Illyana is sick.  It is just a cold but she has been sick for 2 months.  It’s so hard watching her be sick.  I know every parent can attest to that.  What I am really struggling with is what illness means for Illyana.  Like most of us her appetite decreases when she is sick (fevers seem to be the worst).  But Illyana has been 15 pounds for 4 months.  We have  weigh in next week that I am not looking forward to.  I am afraid that because she is sick and not eating again we are going to be re-hospitalized.  This is something the pediatrician hinted at when I saw him last week.  He said that he would have left Illyana on a tube until she gained substantial weight.  He figures that Children’s Hospital ignored the fact that she had been 15 pounds since December and focused on that she had a cold and lost weight.  Based on these comments, I don’t know what a poor weight gain will mean.  So the fact that Illyana is sick (again? Still?) Is worrisome.  She had been doing pretty good with eating, despite having a runny nose, but since the fever started a week ago she has done far less well.  I’m not sure shes eaten a full meal in a day in the last week.  She is drinking milk and I am putting as many calories as I can into her milk.  Milk with whipping cream; milk with milk powder.  She won’t drink chocolate milk or milk with yogurt.  The last couple days she has been less energetic and less happy, making it that much harder on me.  I  am hyper aware of her caloric intake and it stresses me out when she doesn’t eat.  I then find myself frustrated that she isnt eating.  Part of encouraging her to eat is making mealtime enjoyable and cheerful and happy.  Me being stressed and frustrated makes for none of those things making it a unhelpful cycle.  I know this but I still end up there.  I know that knowing I end up there is the first step in trying to change my reactions but its hard when I m so worried about her.  I don’t want to go back to the hospital for tube feedings.  Illyana is finally starting to settle into some sort of a routine and to be calm again.  The last trip to the hospital really screwed us up.  Not to mention my job.  I want to be at work.  I am excited about my position and think I will really enjoy it.  But I have successfully worked 2 full weeks of the last 8.  And I want to be there.  In January and February I felt like something was missing in my life.  I realized it was having a purpose beyond my home (which is an incredible thing to do I just needed something more, including adult conversation).  Me not working is not an answer to our problems right now.  My Team Leader has assured me that I am not going to lose my job because I have to be with my child (I know that should be a given but I feel like a crappy team member and crappy  hire).  I felt like I was skipping work when I saw my manager at the store on the day Illyana couldn’t be t daycare.  Annoyingly I thought illyana wa feeling better at day and then she got worse 
I realize this is rambling, my life is rambling.  I don’t know how to help Illyana.  I don’t know how to make her healthy.  I don’t know how to get her to eat more. I think she gets so sick because she is so little.  Her 15 pounds just cant fight all these colds at daycare.  I can’t pull her from daycare because I don’t have a support system that can take her and allow me to work.  Nick works night shift and can’t be awake all day to watch her.   We only have one family member in town and he is not well.  My peeps work.
I know there are no easy answers and I know that every parent struggles in some way with all of this in one way or another.  I’m just struggling right now.  I am also realizing that these struggles are maybe just beginning.  I’m afraid (not terrified but worried?) That eating is just the beginning of our struggles and that more is coming down the line.  There is just something different about illyana.  Don’t get me wrong, she is perfect, just different and that’s okay.  We just need to keep doing our thing and dealing with whatever as it comes our way.

But today, I am struggling.  Illyana hasn’t eaten well since last Monday.  She is an unhappy sick today.  I would do anything to make her happy but I don’t know what to do besides wrap her in hugs and cuddles.  Maybe that’s enough but it doesn’t feel like it.

Grief

I talked with  mom of a “unique needs" child today and she helped me understand a lot.  I need to let go of the idea of what parenting looks like and accept our reality.  Illyana is not quite your typical kid and she needs to be treated for who and what she is.  And I need to make her needs work for me.  Cheering for her is unnatural to me but she needs it.  Illyana is so socially motivated and I am an introvert.  We find a level that works for us.  And I might be cheering lots of things I never dreamed I would cheer for because that’s what my kiddo needs.  But the part that really got me is that I don’t just need to let go of my ideals, but I need to grieve them as well. This is not what I expected and its not what the majority of my friends have dealt with, but obviously it is what our adventure is.  Illyana may or may not grow out of her unique needs and we may or may not add other unique needs to who she is.  But she is perfectly Illyana.  I am still kind of in denial so the grief is still to come but its getting closer.  Maybe the grief will live quietly or maybe it will explode out (I’m kind of a one or the other type girl).  But when that grief does come, I already know today’s conversation will make it that much easier.  It’s not grieving my child; its grieving expectations that don’t match reality and moving on to accept and embrace our reality.  I’m in the perfect job for a unique needs child as I get to learn a lot about mental health and some healthy means of coping for all of us.
It really does take a village to raise a child (and support a mama) and I have learned how big and wonderful our village is in the last month.   Thanks for being part of our village

Calories

I’m frustrated. What else is new? As you know, Illyana and I spent 18 days on the hospital recently. All sorts of tests were ran and it was decided that there is nothing wrong with Illyana, she simply does not consume enough calories. Except that it took 18 days of trauma for this to be determined. She had a tube in her nose forcing formula into her. The tube had to be inserted multiple times because they struggled to tape it to her face in such a way that she couldn’t pull it out. She had blood work done three times. Eating became a bigger deal than I would like it to be. Our sleep schedule was disrupted. Daily she would be woken up after falling asleep by a medical professional needing something. At night she was still poked and prodded although she, thankfully, slept through most of those. She got even less sleep than she does on a regular basis. I had to hold her flailing little body down until she would relax into sleep. If she awoke in the night, she sought me out, seeking reassurance she wasn’t alone. And after 18 days of unknown territory, with stressful visitors, we were told to carry on as we were previously. Except those 18 days changed everything. Nine months of sleep training is out the window. Illyana is terrified if I am out of sight. She will still only fall asleep touching me. She slept through the night at the hospital. Last night she was awake every hour. Our routine is gone and we are re building it. But our routine also took months in the making. We took 2 weeks to get used to going to daycare. He went for half day last week but our getting there routine is gone. We are back to work/daycare tomorrow and I don’t know how our morning will go (let’s be honest, I never know, but I m even less sure now). We missed Illyana's vaccinations because we were in the hospital. Vaccinations have never bugged her, she’s always carried on with her life. This set has her with fever – is that the vaccinations, that she is run down or that it scared her more? I don’t know but fevers are not conducive to getting more calories in her as she doesn’t eat when she's not feeling well. Maybe the mot frustrating part is that I have been told to carry on with what I was doing. There is nothing medically wrong with her and physically, there is no reason why she doesn’t eat well. This means that there are no suggestions to offer us. The best suggestion is to cheer loudly every time she does something good eating. It is so unnatural and uncomfortable for me to do this. I get that she respond to social praise but it cant be the only way can it? I’m also supposed to eat the same thing as her so that she see me eating it and wants to eat it too. But shes on a high fat diet that I don’t want to be on. She doesn’t sleep so things like dishes don’t get done s much as I would like. I don’t want to cook two (or 3, depending on Nick’s diet)meals. I struggle to make meals as it is. Then I get told that all food is good food and I am a role model for my daughter in how I view food. Sure but adults don’t need the same fat and they wouldn’t be telling m it’s good foo. The whole give her straight fat is a bizarre concept to me. I feel so alone in this adventure. There is so much pressure to gain weight and eat enough food that I stress out when she doesn’t eat well. We are doing weekly weigh ins. What happens if she doesn’t gain appropriately? I still have so many professionals in my life but no one has any concrete suggestions for me. I have been trying g for 7 months, clearly it I not working! I get that it is me and Illyana the need to figure it out together, I just wish someone could help me. I feel like I’m failing. I feel like I’m failing Illyana. I need help but it I not something anyone can help with.