I've had the worst childcare week ever and sadly, I'm learning that this is just business as usual for working mothers everywhere. First, I find out Monday night that the daycare teacher that promised weeks ago to watch Gesina on Wednesday and Thursday night and on Monday nights during the semester can't watch Gesina... no reason given. Just sorry, can't do it. I'd had this settled weeks ago and every teacher in Gesina's daycare class knew I had work-related obligations starting this week. So I spend Tuesday reeling and trying to find a replacement for the next two nights. Thankfully the front desk employee at my daycare scrambled for me and found someone that can watch Gesina the next two nights. Yay, crisis averted... or so I thought.
Wednesday morning I drop Gesina off at daycare and drive the hour to school for a 6 hour mandatory department meeting. This is a big meeting as there are some very major changes in my job, including who will be my boss in a few months and where my office will be located a year from now. As I drive into the parking lot at work I get a call from daycare, Gesina has a rash and must be picked up immediately. I laugh as I think this has to be a joke. But no, a random child in a completely different room has contracted hand, foot and mouth disease so Gesina must be checked out immediately. This seems very understandable until you add to the story that Gesina has had this rash on her chest, shoulders and back for 3 weeks. In fact, her home health nurse looked at it and told me it was just from the heat and sweating and as her home health nurse was visiting her the next day, I could have her look at it again tomorrow. This doesn't appease the daycare director so I have to turn around and drive the hour back to daycare to pick Gesina up and take her to urgent care. Seventy-five dollars and hours later, I have a note saying Gesina has HEAT RASH and return her to daycare. I drive the hour back to school and walk in the door just as the meeting is adjourned. I haven't been so angry in a really long time. Every parent I've talked to has said this is NORMAL. I can't believe our society is so accepting of such unreliable childcare arrangements. I totally get the public health concerns about sick kids, but to not have a process in place to ensure kids are taken care of in a safe manner and parents can continue to work and financially support said kids is beyond unacceptable. I've found my next research topic on work-family issues...
All that aside, once my emotions calmed down I decided the director of the daycare did not mean me any harm. While she did inconvenience me greatly and really should know the difference between heat rash (on chest and back) and symptoms of hand, foot and mouth which include visible sores on the HAND, FOOT, OR MOUTH, she is just doing her job and has many policies and regulations guiding her decisions. And if she had called me about a symptom I didn't know about, I would have been grateful. So because her heart is in the right place, I decided to be mature and let it go. Blah, adulthood sucks. What I did learn is that in the future, anything I have the home health nurse look at, I'm going to get a note saying what it is and that it is not contagious. I'm also going to start building my emergency backup care ASAP. I may end up with 5 backup babysitters but if I take the train to work, I may not physically be able to pick Gesina up in this situation in the future. I could be stuck in the city with no way to get back home for hours.
On a positive note, Gesina's acid reflux is getting better :-) She has maintained her weight through all of this to remain in the 12th percentile. I do understand the way a G-tube works versus the NG-tube that I had previously experienced. My hesitation with a G-tube is that there is no clear exit strategy for the G-tube. The "Gesina will let us know when she no longer needs it" response doesn't cut it with me. As a psychologist, I know that if she gets dependent on a G-tube (which is essentially the purpose of the G-tube), then she will likely remain on it indefinitely. I won't count on Gesina magically deciding one day that eating is great so she's going to do that now and won't need the tube. Gesina may never be conscious enough to enjoy food. Of course I hope and plan for Gesina to develop into a happy and fully functioning adult, but I also have to accept that she may not get there. That said, if she can currently eat of her own accord, then I'm going to let her. Until her weight declines and she dramatically changes percentiles, I will celebrate her ability to eat and sustain herself. It's also fun to note that Gesina is now in the 75th percentile for height!
Up next is another GI visit where I hope we can continue to work on her nutrition. I'm hoping that at 9 months we can work on adding more real food to her diet and have her start experiencing textures. I'm always a bit sensitive about her missing out on "regular" experiences because of doctors' or therapists fears or lack of faith in her abilities. To that end, she and I went swimming in a pool last week! No crying or whimpering so I think she liked it :-) I need to plan for more adventures in the near future. I'm determined to try new things with Gesina and let her show me what she can and can not yet do. I hope I never get to the point where I assume she can't do something. I have always optimistically believed that obstacles only really exist in your mind. I'd hate to create artificial boundaries for my little fighter as she's already overcome so many obstacles! She really is my inspiration :-)
Friday, August 22, 2014
Thursday, August 14, 2014
Non-stop cuddles
So I've been absolutely horrible with keeping up with Gesina's "brushing therapy" and I think it is starting to show. In my defense, she is vomiting up bottles (5 times in one day!!) so I have to keep her upright at nearly all times. This makes brushing difficult. The brushing is supposed to "desensitize" her and allow her to remain calm at any given time. Since I've been lax on it, she startles easily and is adamant about being held at ALL TIMES to feel calm and secure. I don't mind but I did have one of her new daycare teachers complain about it :-( Apparently Gesina's demands don't fit when there are 8 babies in one room and only 2 teachers. I can't believe Gesina is the first baby they've had that likes to be held all of the time but who knows. I've taken her complaint with a grain of salt but if pushed, I may have to let her know that when one doctor is telling you your baby may not make it to her first birthday, then you cuddle her every chance you get and be grateful. But again, I haven't gotten annoyed enough to get grouchy... yet.
Here's a pic of Gesina sitting upright... She is definitely a chip off the old block as I commandeer the lazy boy in my house, and I got that from my dad. Of course, my dad would kick me out of his lazy boy and so far, I haven't done that to Gesina. Though I can absolutely see me yelling at her to bring me something from the fridge in the future ;-)
Next up I am hoping that upping her Prilosec will get the vomiting under control. Even sick, Gesina has gained a pound in one month which is the upper end of what she needed to do. The being sick all of the time has impeded progress on therapy and "inchstones". I'm trying to incorporate sitting up as much as I can to help build up her muscles but tummy time is pretty much impossible. When your baby vomits 3-5 times a day and in large quantities, she ends up sitting up the whole day. The only time she is not sitting up is during clothing and diaper changes. There is no time for her to be horizontal and in fact, she mainly vomits while sitting up (on me of course). Either way, when we get that under control, back to brushing therapy and tummy time.
While we wait, wish me luck; Gesina and I are going on a road trip to see papa play fastpitch at nationals. Three and a half hours in a car with a baby who is only happy being held and vomits quite frequently may do me in. But alas, I'm a problem-solver and I'm going to bring ear plugs :-)
Here's a pic of Gesina sitting upright... She is definitely a chip off the old block as I commandeer the lazy boy in my house, and I got that from my dad. Of course, my dad would kick me out of his lazy boy and so far, I haven't done that to Gesina. Though I can absolutely see me yelling at her to bring me something from the fridge in the future ;-)
Next up I am hoping that upping her Prilosec will get the vomiting under control. Even sick, Gesina has gained a pound in one month which is the upper end of what she needed to do. The being sick all of the time has impeded progress on therapy and "inchstones". I'm trying to incorporate sitting up as much as I can to help build up her muscles but tummy time is pretty much impossible. When your baby vomits 3-5 times a day and in large quantities, she ends up sitting up the whole day. The only time she is not sitting up is during clothing and diaper changes. There is no time for her to be horizontal and in fact, she mainly vomits while sitting up (on me of course). Either way, when we get that under control, back to brushing therapy and tummy time.
While we wait, wish me luck; Gesina and I are going on a road trip to see papa play fastpitch at nationals. Three and a half hours in a car with a baby who is only happy being held and vomits quite frequently may do me in. But alas, I'm a problem-solver and I'm going to bring ear plugs :-)
Friday, August 1, 2014
Downtime with family and fall transitions
Gesina and I have been busy enjoying the few warm days of summer lately and beginning our fall transitions. Normally fall is my favorite season of the year but with such an oddly cold summer, I feel a bit cheated!
Gesina's first transition was to visit a new GI doctor and see a nutritionist. We got the "g-tube" lecture which was annoying. Granted, the doctor didn't receive Gesina's records (of course, that's hundreds of dollars wasted on a general consult because neither my pediatrician or prior GI doctor, both of whom referred me to the new GI, sent over Gesina's records), so the GI doc used the time to tell me what he could do for me... insert a g-tube. I listened like a dutiful mother but was seething inside. My daughter is at the 12% for weight and is not even 8 months old and is wearing 12 month old clothes! I think we are way past that drama. Grrrr. The nutritionist was very helpful though. She was amazed at the diet we had Gesina on because it is very nontraditional. I don't mind it because it WORKED but do agree that due to the low volume of liquid, it is not sustainable in the long-term. So we came up with a plan to get us off the crazy diet and move toward a more sustainable diet. Gesina now takes 20 ounces of formula at 27 calorie per ounce INSTEAD of 12 ounces of formula at 44 calories per ounce each day. We are also lowering the amount of oatmeal from 1 Tbs per ounce to 1 1/2 teaspoon per ounce. The goal is to get it to only 1 Tbs of oatmeal per BOTTLE. So, how is she doing with all this?? AMAZING! She is taking her 20 ounces or more each day and is even showing signs of being hungry :-) Can't wait to tell the GI doc that we won't be needing the g-tube thank you very much! She is vomiting a lot though. I may have the GI doc switch her from Prilosec to something else to see if that helps with the vomiting up of whole bottles.
Gesina has also had some therapy transitions. I finally fired my PT and the new one can't start until next week. We also have a new OT that I've never met because my usual OT is having surgery. Finally, we've added an additional OT through a private company that follows a "medical" model versus the "coaching" model that early intervention (EI) uses. This caused some drama with EI as they claimed it's not best practice to use both... ummm, yeah, right. My private OT has been calling them trying to get their records to ensure they are on the same page. Further, most moms I've talked to online with kids with similar histories as Gesina use both. Finally, my insurance doesn't cover private so I'm not going to stop EI because I can't afford to go all in with private. Sounds like turf wars to me. Either way, I've applied for a secondary insurance through the state that if we qualify for, will pay for the private therapy instead of EI. Fingers crossed on that as it takes about 4-6 MONTHS to find out if we qualify.
Gesina's daycare has had transitions as well. She and all her classmates have graduated to the next room. This means new teachers I've been training and new schedules. I'm transitioning Gesina to 4 days a week in daycare instead of 3... it's killing me :-( I need to do that as I have to start getting back on track at work this fall with more (and new to me) classes to teach, 2 new PhD students to train, 30 new MA students to matriculate, and I'm again heading my local professional society. I'm a sucker for punishment but I've often found that the more facets I have in my life, the more centered I am when things don't go "well" in any given one. In other words, I'm probably a better mother if I have a full life outside of mothering... at least this is what I tell myself!
And finally, Gesina got some serious family love this past weekend at the family reunion! She was held the whole time by every cousin I have and when not at the reunion, my sister and her grandma and grandpa got some snuggles in. In fact, she was so spoiled with family cuddles that she spent the whole first day home demanding to be held. She's incorrigible but as usual, I loved every minute of it. She was also amazing on the ferry ride and just slept, played with my hands, and even drank her bottles (I was seasick by the end but she held that formula down like a champ). Of course while she was at grandma and grandpa's, the "diet" went out the window with her first tastes of mashed potatoes and gravy, ice cream, and chocolate frosting. That's mashed potatoes in the picture below.
She was so good on the ferry and at grandma and grandpa's that we'll have to get a few more visits in before the ferry stops for the year.
Next up, rest and relaxation! We are finally caught up on doctor's visits for a few weeks. Just transitioning to daycare more often, more therapy, and more cuddles until the fall semester begins. I'm going to be horrible at more daycare... I think I'll pick her up early today... Oh how I love that little girl!
Gesina's first transition was to visit a new GI doctor and see a nutritionist. We got the "g-tube" lecture which was annoying. Granted, the doctor didn't receive Gesina's records (of course, that's hundreds of dollars wasted on a general consult because neither my pediatrician or prior GI doctor, both of whom referred me to the new GI, sent over Gesina's records), so the GI doc used the time to tell me what he could do for me... insert a g-tube. I listened like a dutiful mother but was seething inside. My daughter is at the 12% for weight and is not even 8 months old and is wearing 12 month old clothes! I think we are way past that drama. Grrrr. The nutritionist was very helpful though. She was amazed at the diet we had Gesina on because it is very nontraditional. I don't mind it because it WORKED but do agree that due to the low volume of liquid, it is not sustainable in the long-term. So we came up with a plan to get us off the crazy diet and move toward a more sustainable diet. Gesina now takes 20 ounces of formula at 27 calorie per ounce INSTEAD of 12 ounces of formula at 44 calories per ounce each day. We are also lowering the amount of oatmeal from 1 Tbs per ounce to 1 1/2 teaspoon per ounce. The goal is to get it to only 1 Tbs of oatmeal per BOTTLE. So, how is she doing with all this?? AMAZING! She is taking her 20 ounces or more each day and is even showing signs of being hungry :-) Can't wait to tell the GI doc that we won't be needing the g-tube thank you very much! She is vomiting a lot though. I may have the GI doc switch her from Prilosec to something else to see if that helps with the vomiting up of whole bottles.
Gesina has also had some therapy transitions. I finally fired my PT and the new one can't start until next week. We also have a new OT that I've never met because my usual OT is having surgery. Finally, we've added an additional OT through a private company that follows a "medical" model versus the "coaching" model that early intervention (EI) uses. This caused some drama with EI as they claimed it's not best practice to use both... ummm, yeah, right. My private OT has been calling them trying to get their records to ensure they are on the same page. Further, most moms I've talked to online with kids with similar histories as Gesina use both. Finally, my insurance doesn't cover private so I'm not going to stop EI because I can't afford to go all in with private. Sounds like turf wars to me. Either way, I've applied for a secondary insurance through the state that if we qualify for, will pay for the private therapy instead of EI. Fingers crossed on that as it takes about 4-6 MONTHS to find out if we qualify.
Gesina's daycare has had transitions as well. She and all her classmates have graduated to the next room. This means new teachers I've been training and new schedules. I'm transitioning Gesina to 4 days a week in daycare instead of 3... it's killing me :-( I need to do that as I have to start getting back on track at work this fall with more (and new to me) classes to teach, 2 new PhD students to train, 30 new MA students to matriculate, and I'm again heading my local professional society. I'm a sucker for punishment but I've often found that the more facets I have in my life, the more centered I am when things don't go "well" in any given one. In other words, I'm probably a better mother if I have a full life outside of mothering... at least this is what I tell myself!
And finally, Gesina got some serious family love this past weekend at the family reunion! She was held the whole time by every cousin I have and when not at the reunion, my sister and her grandma and grandpa got some snuggles in. In fact, she was so spoiled with family cuddles that she spent the whole first day home demanding to be held. She's incorrigible but as usual, I loved every minute of it. She was also amazing on the ferry ride and just slept, played with my hands, and even drank her bottles (I was seasick by the end but she held that formula down like a champ). Of course while she was at grandma and grandpa's, the "diet" went out the window with her first tastes of mashed potatoes and gravy, ice cream, and chocolate frosting. That's mashed potatoes in the picture below.
She was so good on the ferry and at grandma and grandpa's that we'll have to get a few more visits in before the ferry stops for the year.
Next up, rest and relaxation! We are finally caught up on doctor's visits for a few weeks. Just transitioning to daycare more often, more therapy, and more cuddles until the fall semester begins. I'm going to be horrible at more daycare... I think I'll pick her up early today... Oh how I love that little girl!
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