Well, we have a feeding tube in. In some ways its been nice, in others, its a complete horror story. I absolutely dread putting that thing in and taping her beautiful face. Imagine how it feels to take your baby to get shots. Now imagine that you are the one giving the shots, sometimes 2 or 3 times a day. I'm not saying I don't appreciate modern medicine, by any stretch of the imagination. I am just saying that I wish I weren't the one that makes Baby Girl cry for hours on end. Any time her tape comes up, which is often, because dirt and formula, etc. get underneath it, we have to re-tape it. Her face gets all red from the sticky stuff we have to use to help it stay sticky for longer, not to mention the fact that she hates being held down. WE have the tube in and its going well, and we are supposed to change it tomorrow. I think for her sake, and mine, I am going to try to prolong that as long as possible.
We also have a pump. We can use this at night to help her sleep through the night and us as well. For those of you that haven't heard, our 3rd or 4th night on the pump, she aspirated. Meaning that she choked on her own formula and it got into her lungs, causing her to almost drown in her own vomit. God is so good and he knew exactly what he was doing. Evie just so happened to be at her Mimi's house. It was Father's day, and part of my gift to Patrick was a night off from feedings and worrying about the baby. Well, at her Mimi's house she sleeps in a pack-n-play in her Mimi's room. At our house she sleeps in her own room in a crib. Her Mimi heard her vomiting and was able to save her from drowning. If she were at home, there is no guarantee that we would have heard her through the baby monitor. Praise God Evie is still with us. I will never again take her for granted. My mom called me at 4:14 in the mornining crying and upset because of what happened. She was so worried I would blame her for what happened. On the contrary, My mom saved Evie's life.
This poses a 2 fold problem. I have difficulty putting her back on the pump especially in her room. Because I cannot trust that she will be OK on the pump, I feel like we should stay up with her while she is on it to ensure that she doesn't aspirate. Meaning, that we don't get sleep. Patrick has come up with a temporary solution that I hope works. We moved her back into our room for the time being. We also lowered the amount so that she will not get as gross full and feel like she has to vomit. We are currently in the process to see if we can get an extended care nurse to come and watch her at night so that we can sleep. I just do not feel very comfortable leaving her in her room to sleep with that pump going. I just shutter to imagine what could happen. I am praying the extended care nurse idea actually happens and happens fast.
We have had a very rough couple of days, however God has still been faithful. While we are having difficulties in this area of our lives, he has proven himself to me in several very real and practical ways. This story starts back a couple of months ago.
Our dishwasher broke about 2 months ago. Maybe longer. It has made it rather difficult to wash bottles and dishes with a broken dishwasher. Especially since we go through a ton of bottles in a 24 hr period. WE have been feeding her every hour and a half meaning that we go through about 16 bottles a day. Not just any bottles, Dr Browns Bottles. If any of you don't know about Dr Browns, they have 5 different parts to them, making washing them a very long process.
Not only did our dishwasher break, but our year old Lawn Mower broke too! Its kinda hard to cut grass with no lawn mower. We made it through one season of grass cutting before it bit the dust.
God, however, has provided for us. We had some very awesome people help us by #1 Buying us a dishwasher. Brand Spanking New. Its so beautiful. I stood there crying in the middle of Sears because I was so overwhelmed with gratitude. #2 Some people volunteered to cut our grass. Now, I'm not going to lie. It looked like a jungle, but because we really are swamped taking care of Evie, Patrick and I agreed. Little did we know, they were going to end up giving us their lawn mower. Uhhg. Again. Overwhelmed with no words to express how I feel about it. Even as I sit here I am getting teary eyed.
God has also given us a huge support group at Brookwood Baptist Church in Shreveport, La. Several Moms got together and decided they would help us. It means so much to me because I am not one who usually asks for help. I love giving help and doing for others, but these ladies have gone above and beyond what I ever could have imagined. In case I didn't post about this before, or if you are just now joining us, these ladies have:
Hired a cleaning service to clean our house once a week, at no charge to us.
Created a Bottle Cleaning service that comes and picks up bottles daily and drops them off later on in the day.
Planned a way to provide us meals to us every night of the week through July.
Gave me a $40 gift card to the most amazing coffee shop ever, The Well.
Have made it possible for me to call any one of them for help with taking care of Evie
Pray for us daily. We also receive texts and emails asking how we are doing.
I only hope that one day I can be in a place to where I can do for others what these ladies and gentlemen at Brookwood have done. They have shown Jesus to me in a very real way. This is exactly what the Bible was talking about when it said to Love thy Neighbor. I believe Jesus would be so pleased with these Brothers and Sisters in Christ. I feel as though we don't deserve any of this. Our house didn't burn down, we didn't lose everything, we just have a sick child. God is so good. There are times when I feel like God isn't there. Everytime I start to feel depressed, God shows me how truly amazing he is. Even through all of these Ashes, came come beauty. I was thinking something earlier: Brookwood may not be perfect, but we all serve a God who is. Thankyou, God, for being omnipotent and knowing exactly what we needed.
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This will sound insensitive, but you know that I above all people don't mean it that way, but is Evie very developmentally delayed? I mean, will she be able to eat from a spoon within the usual time frame? I'm ignorant about LCHAD, so I don't even know if she could eat regular baby food, so I'm just being a nosey, curious person. I know that that will pose it's own challenges, but it will at least be a change of pace. When she's able to feed herself it will be even better. I'll bet the LCHAD moms who correspond with you can offer some encouraging insight on that topic. Point being--hang in there. It won't be like this forever. Also, this post reminds me of the song "Praise You In This Storm."
ReplyDeleteYes she will be able to eat from a spoon and fork and eat normal baby foods(the only ones' Lauren didn't eat were the ones' containing meats or cheese). As she starts to eat table foods her genetics doctor will inform her on what foods to feed her and how many fat grams she can have. This varies based on the child and how elevated their long chain fats are.
ReplyDeleteShe will walk,talk, and play just like any other child(she may have less energy than the normal child though). Developmental delays usually happen (that are caused from LCHAD and not some other source)if a child has had low blood sugar for long periods of times. Most of the kids that have had developmental delays were because they weren't diagnosed at birth. Their parents didn't know what was wrong. They knew they weren't reacting like a normal child does to illness and probably acted more lethargic than most babies. Unfortunately some of the kids that weren't diagnosed, b/c this disorder wasn't included on their states newborn screening, passed away. The saddest part is it could have been prevented with a simple blood test. This is why expanded newborn screening in every state and country is so important!! But this is why Brittney has to feed her SO often. This is complicated when you have a child that throws up all the time. We try to avoid a "fasting state" in our kids. Usually a normal child will break down fat during the "fasting state" to create energy but our kids can't. If their body burns all the sugar then it looks to other sources for energy. This is usually the muscles of the body which is typically their legs and arms but can include their heart. Any kind of stress or illness to the body causes their body to work harder for energy. It is all a balancing act. We have to make sure they eat enough but not eat the wrong things. It does get easier as they get older though.
Candise
Hey Apples and AutoBots. IT doesn't sound insensitve. Candise did a great job explaining things to you. The only developmental delays she currently has are from her being born 2 mo. early. She is 4.5 mo old, 10 lbs 10.5 oz. and is holding her head up really well, rolling over, standing, with help of course. AS far as her eating is concerned, she will be on this formula for a while, but as a supplement to regular foods. She will be able to eat normal fruits and veggies, and portioned meat. All the sugar she wants. For Evie, she will probably eat solids at about 8-10 mo. Only because she was born early. Had she been on time, she would be able to start at 6 mo or so, like a normal baby. Thanks for asking!
ReplyDeleteBrittany, that's awesome how your church family (& your blood family!) is supporting you! I'm glad to hear you have some help & that you're willing to accept it. Those people have truly gone above & beyond to be there for y'all & are showing exactly what the body of Christ is meant to be like! I'm glad y'all are taken care of & are not alone.
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