First, the good news. Evelyn did awesome with her feeding therapy portion! Usually she doesn't cooperate at all. Today she ate a quarter of a Nutella sandwich, 1/2 a container applesauce, 1 whole Nature Valley granola bar, 1 small chocolate rice cake and like 1/4 string cheese. The best part? They got her to drink milk! 2 ounces by mouth. That hasn't happened in years! She hated it but she did it. I was so proud of her. :) The first goal is to get her to take more water my mouth. They said she'll never get off her tube if we can't keep her hydrated by mouth. So I need to get 12-16 oz of water by mouth in her. Then the goal is to add other liquids. Eventually we hope to get her formula in her by mouth but we'll start with chocolate milk first, then white milk, then slowly introduce the formula (I wouldn't want to drink it either. It's nasty!)
I had a speaker in my ear and they told me everything to do and say and it worked perfectly! Another good note was we went out of town last weekend and I forgot her feeding supplies (mother of the year!). So she didn't get her tube feedings. That child ate more than I've ever seen her eat! She had fried chicken, a hot dog, burger, fries, coleslaw, roll, potato, tons of cereal, snacks and raisins. She tried everything she never would touch otherwise. I think the tube feedings fill her up so much she never wants to. I was amazed!
I was hoping today she would weigh enough to stop her night feedings. I also wanted to talk to them about going to cheaper formula. As everyone knows by now, insurance stopped paying for formula in May. We are on our own now. We are thankfully getting a case for very cheap from a wonderful mom who sends us one left over case of her daughter's every month for just shipping costs :) And it's the good formula that she was supposed to be on (Peptamin Jr) and it's extremely expensive. So for her to send it to us is so amazing! Another wonderful mom sent us a leftover case of her daughter's supplement drink as well. So our first month we didn't have to buy anything :)
Unfortunately when she went she had lost a little. I thought she gained alot but either our scale is wrong or she's playing outside so much she's burning too many calories to keep up. She was exactly 34.0 today and 43". No height growth in a month and 1.5 pounds weight loss. Strange to say the least (I still think their scale is off!)
So no dropping night feeds. But they did put her on a cheaper formula called Nutren Junior. It's about half the price as our other stuff but they don't make a 1.5 version so we have to use a little more and add a powder called Duocal to it. They also upped the speed of the pump at night. Instead of taking 12 hours, we will slowly increase it and within a week or two she'll hopefully be at fast enough to only take 5 hours! That means that she'll have atleast 6-7 hours after with no food and that will hopefully increase her appetite. She gets fed until 8am now and she has no appetite for breakfast or even lunch really. She isn't real hungry until afternoon so hopefully that will fix it
The worst news? They say she will need intensive feeding therapy to wean off the tube. They don't think we can do it at home. What that means? It means she will be inpatient in the hospital 2-3 weeks. I almost started crying. While I know this is what has to be done and I'm thankful she possibly could be off her tube completely by Christmas, I am still very scared. How in the world am I supposed to have my sweet baby in a hospital for almost a month? The logistics of it all stress me out too. Who will watch our other kids? What if we can't be there all the time? What about work? What about her school? I think of how upset and scared she will be there and I am very very scared of it all. But I'm trying to think positively and realize that this needs to happen and it will help her. And in the end it will be worth it. And I'm just praying for strength for us to get through it and courage for her to get through it. They don't' think it will happen until fall or winter. I hope to actually do it before January since our deductible is already met this year (I don't even want to think about what a 3 week stay would cost!). But after the 2-3 weeks is up, she should be completely fed by mouth.
She has to have a few other things done first. We go to see an ENT next week (or maybe the week after, I can't remember). We want E's tonsils and adenoids removed. She has no problems with them sickness wise (in fact she's never sick at all!) but they are huge. And her swallow study showed some food getting stuck on them and that might be what's causing her to feel like food is getting stuck and not want to eat. Also she still sleeps excessively, sweats profusely in her sleep (like drenched), snores and mouth breaths and has horrible breath. They think she probably has some sleep apnea going on from the enlarged tonsils. So because of her failure to grow, food getting stuck on them, and the sleep issues (she probably burns tons of calories just trying to sleep!), we all think it's best to get them out. I hope we can get that done this summer still. Her ENT thankfully is her pediatrician's son :)
She also needs a esophageal monomentry done (or something like that). They basically shove something down her throat to record the strength of her esophagus while swallowing to see if there are any problems there. Yeah, I don't even want to think about that. I'm not sure I am even able to go to that. She'll be awake the whole time. I honestly think I'm not strong enough to be there with her and would be more of a problem than a help :( I hope Patrick can have the stomach to go along.
Once the tonsils are out, the esophageal test is done, then she will go inpatient to get weaned.
I thought our lives were getting easier, but it seems the hard parts are just beginning. I'm so thankful for the progress she made this year. I can't believe we've had this tube as a part of our life for a year! I am so thankful I found a pediatrician who helped us. He saved her life. I honestly think things could have ended very differently had we not found him. We went to see him for the first time since her surgery this week. She told him "thank you for helping me get my button" and he got teary eyed :) He said "Looking back, I wish I could have been there sooner. But I have no doubt we made the right choice and I am so amazed at the little girl she is. I was beyond worried. Even scared when you brought her to me last June. I had never seen a child so sick or so malnourished before. And to just see her now, it makes my job so worth it." So thank you Dr. Martin for saving Evelyn's life and giving us our little girl back. We will always be forever grateful to you and will never be able to repay you. Within ONE week of seeing you for the first time, crying to you to help us, you had done everything every other doctor had failed to do. While they wanted to try this first or that first or shove a tube down her nose and throat to see if that worked for a month, you yelled and screamed and got your way :) ONE week after seeing you my baby was in surgery getting her G tube. And our lives have never been the same since. So thank you. From the bottom of our hearts. I wish you weren't retiring so I could refer everyone to you! :)
In other news, the girls started T ball this week and really enjoy it. Sophie doesn't get it but Evelyn does good! Evelyn also starts swimming this week. EEK!
I also am considering going back to the ER. I applied at a few places. I really don't want to. I love my job now. But my hours keep getting cut and I got moved from Sussex to Waukesha. Now there are rumors I might be getting moved back to Sussex and I might be one of the employees bought out by Freodtert. So with so much uncertainty and the fact that my job just isn't paying enough for us to live, I had to make that decision to leave a job I love to go to a job I know I didn't enjoy last time. I'm hoping a change of hospitals will help though. The hospitals I applied at are all in better areas than St. Francis was. I got burned out on the clientele there so hopefully this will be better. So cross your fingers I get one of them!
That's it for us!
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