Many of you who follow this blog know that eating is a very hard thing for us. Lydia does not feel hunger and does not really understand why we keep piling her with food. We have struggled very hard getting her to eat and then gain weight too. It has been tearing me up. I long for the day when I can set my child down and allow her to eat and she will eat. Something most of us take for granted. Usually a child will drink or take something.
Lydia was just inpatient for about two weeks. She had RSV and was in the hospital for five days. We were discharged and a day and a half later were readmitted for pneumonia. She stayed there for another six days. During this entire time she had IVs and would not eat. Would not drink.
I was exhausted. Not just because we were in the hospital. Not just because they thought my daughter was having seizures. Not just because they thought her esophagus had a dilation. Not just because her heart rate drop below 40 beats over 50 times one not. Not just because she was on 4 liters of oxygen, struggling to breathe and super sick. Not just because she was having these horrible pain fits and there was nothing I could do to comfort her for hours at a time. Not just because a nurse felt the need to wake a sleeping baby. But also, we have just come off some VERY rough patches of eating. She was not really gaining weight and it was tough. She showed very little interest in eating and would not drink.
Let me back up a second and explain a little bit about why I became so "obsessed" about calories and intake and amounts and so forth. GI. There, I said it. GI messed me up at their approach, their not listening, their not looking at the patient, and their constant focus on calories and intake. Yes, we journaled, we kept logs, we added oil, we blended with very unhealthy things, we pushed purees, she was on concentrated milk products, we listened to them and did what they said. After all, they were the experts. When we brought up our objections they did not listen and they said that we HAD to count calories and she HAD to have a certain amount of this and that.
They basically scared us to keep the tube in and keep doing as we were doing. They were trying to convince us that she would never have these skills. They were scaring us out of what we felt strongly as parents who know our child the very best. They were the experts and two parents who had little medical training surely did not know anything.
After going against the medical advice from GI, we took the tube out. The rest of her team thought it was OK. That's not an easy choice to make and it certainly is not the easiest thing to do. But for our daughter we knew that she had to get out of this pain and we needed to give her a chance.
GI scared me so much that even after the tube was out I felt the need to push, push, push. I ignored her gestures and kept pushing. I was a freak at making her eat. Surely I could not give her a chance and show us what she had in her. Surely she needed 24 ounces of milk a day along with 1000 more calories. Surely Lydia would never figure out how to adapt to her body.
Talking to a great friend and mentor the other day, she reminded me again that Lydia is God's child and He will take care of her. I must let her go. I thought that I had. I read the Bible (most days if I am being honest), I pray constantly, we try to live in a Godly way, we rely on our faith for everything. But something was not right. I could not let go of eating issues, I was torn between what the world says I have to do (GI mainly) and letting God handle this very tough problem.
After much prayer and knowing that I thought I was letting God handle His child, something needed to change. Thankful eating was what I was going to focus on. I was going to be thankful for every bite, every drink, every taste, every new food she took. I was no longer going to focus on what she did not have, the calories that she should have had, the meat she should have eaten. She is on supplements and meal replacements to get what she needs in a day. She is growing and developing so she shows us she is getting what she needs.
I have a piece of paper that I keep track of what she is doing each day. On the top it reminds me to be thankful for what she is taking. It reads: "Eat, Praise, and Be Thankful. Give praise to the Lord for each bite and drink Lydia takes. For every time she refuses, throws up, pushes away, pray and remember that she is God's child, she is loved more than you love her, He will complete the perfect work He started, and He has plans to prosper her. Give thanks with a grateful heart for every bite she takes!"
It has transformed how I look at eating. It has relaxed me. It allows me to fully give her to God. I worried too much about what she did not eat and I did not give praise for what she was eating. She would take a drink and I would want her to take more. I was never satisfied.
Another key thing for us was that we have transitioned her to table foods 100%. Because she does not have a stomach and she does not feel hunger the way we feel hunger and she does not understand that feeling, we need to teach her that. However, we never allowed her to explore her body and let her have that sensation. Also, purees are 70% water. When our capillaries expand you have that "full" sensation. If you never allow them to contract, there is no hunger feeling. With her not being fed and turning the IV fluids off, we allowed her body to do that. She felt hunger for the first time. And when we allow her to tell us when she is hungry she is drinking more, trying more stuff. We are allowing the natural process to occur. And even though her body is not "normal anatomy" she can still experience this in her way. It is important for her to understand this.
Giving up control and allowing God to do what He needs to do is important. But giving up control and allowing Lydia to control, is working much better. We have not done this for more than five days, but I can't begin to explain the transformation that has taken place.
We have a long ways to go. But she is drinking much more milk, she loves toast, is eating yogurt, drinking yogurt, loves chips, eating some chicken, and tasting a lot of new textures and tastes. We are starting at square one and have a long battle, however.....HUGE strides.
That act of actually having faith....putting it into practice is huge. I know that she is ready now and my faith is at a place that I was ready. I praise God for this. I know we still have a long way to go, but I have learned so much and I am ready to learn more.
While I am so thankful for the advances in science, for the medical technology, there is no equation that my daughter can fit into. That is what GI is missing in their practice. I know it is easier to control calories and amounts with a feeding tube or with purees, but it is not natural. Sometimes, as much as it is hard to do, the control has to be given to the kids and we have to give them a chance. Sometimes the parents know best, they are with these kiddos all of the time and understand their needs and know their wants. I am glad that I learned this now, but I wish I would have known this before. This perspective could have helped us out so much before. But I praise God that He is growing my faith, allowing me to learn, and He continues to give me the wisdom that I need to raise this precious child of His.
I am thankful for her pediatrician and his support of allowing Lydia to show us when she is hungry, to explore new foods and textures. I am so grateful for that support. We are now ready to tackle this huge challenge in a whole different way. I praise God for the sips of milk she had this morning and I look forward to the new flavors she will take today. When it comes time to weigh her on Tuesday, I trust God will take care of His child!