Wednesday, June 30, 2010

Mixed Emotions Part Deux

Review: In case you are just joining us, or need a refresher, our baby girl, Evie, has a rare metabolic condition called LCHAD. This condition is one that causes The Papoose to not be able to digest certain fats. Meaning, we #1 Must monitor her diet very well, to ensure that she gets the correct amount of the right fats that she can have and #2 make sure that she eats very often, as her body has no real fat reserve that she can get her energy from. So feeding her often ensures that she has the right Blood Sugar and energy levels that a growing baby should have. So, she is on Portagen for her formula, as breastmilk is too fatty, and when she gets older she will have probably no more than 5-10 grams of total fat for the day. She also has reflux. This means that occasionally, when her stomach is too full, she will vomit. So when she vomits, she loses what she has already eaten. This is bad for an LCHADer because she isn't getting the right amount of nutrition for the day that helps to keep her Blood Sugar up.

Problem: Because of this, we have been feeding her very regularly. Ranging from every hour to every 2-2.5 hrs. depending on her tolerance for the day. We just received a pump that goes with her feeding tube that we can use at night that lets us all 3 sleep. About a week ago, she vomited in her sleep and it got into her lungs, meaning she almost drowned in her own vomit (aspirated). Because of this I have been very, very, cautious when using the pump. We dropped the recommended amount down so that she isn't getting as full, and won't feel the need to vomit. This, of course, means that she isn't getting the adequate nutrition that her Dietitian says she needs as a 5 mo. old preemie.

Solution: So, as a result of all this, we have requested an Extended Care nurse come to the house and watch her at night, while we all sleep. I am torn. I believe that this is the best thing for all of us involved, however, at the same time, I also feel like a very inadequate mother for not being able to care for my own child the way she needs to be cared for. The nurse will be able to monitor her throughout the night and we can slowly increase the amount of formula she receives on the pump. My mind can be set at ease, knowing that a trained professional is in the room with her keeping her in the raised position and making sure that if she does vomit, she stays safe. On the flip side, I am a SAHM (Stay at home Mom) and should be able to care for her. I am feeling guilty. I shouldn't have to have someone come and look after my child. Is she going to be a glorified babysitter? Is this how other parents in my shoes would react? I feel like I could keep going on like this. Sleeping very little and handling it. After all, Like my wonderful hubby says "I went to handling school." However, again, on the other side, everyone keeps telling me I need my rest. I am wondering why I need rest. I don't work, I hardly keep up with the house, and I barely remember to take out the dogs. I can take care of her, just nothing else. Is that really a bad thing? I'm not convinced that even if I do get more sleep that I would be able to keep up with the laundry anyways. I am so completely against this in so many ways. Shes our child, We can take care of her. Or not. I don't know. I've been this long without sleep, whats a few more months? Although, I AM terribly excited about this. The prospect of getting sleep seems so marvelous. Does that make me selfish? I hate feeling selfish. I have been called that by a few people, and ever since then, I really try to not be that way. Things are so confusing right now. I wish I could see a clear cut answer. God seems to have dropped this in our laps, so, for now, I will go along with it. Just know, that I am doing the best I can, and please don't think I am a horrible mother for requesting extra help, even though I am a SAHM. I guess I just need a little reassurance.

Wednesday, June 23, 2010

The Neverending Story

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.

Sunday, June 20, 2010

The Future

A group of 7 and 8 year old girls were sitting in a restaurant giggling and whispering really close to one another. They all had huge smiles on their faces, speaking of some fun, mysterious plot they were concocting for their slumber party. They seemed to be having so much fun, creating these normal childhood memories. They didn't even notice me watching them. They were wearing hot pink and purple, with cute little girl earrings, not having a care in the world other than what they were planning!

It may sound creepy, but I couldn't help but watch these 4 girls. It was like seeing the future. The only difference is that we weren't in a restaurant. We were sitting at home and worried about our little girl away for the night. Not knowing whether she would behave herself at a friends house. Not that she would pull elaborate pranks, or steal the car, or anything like that, but rather, would she eat when she needed to, the right amount, and the right kind of food? Would she remember to take her medicines, and to check her blood sugar if she wasn't feeling well? Would the people she was with watch her carefully to make sure she doesn't sneak any foods?
Would she even be able to go without having a feeding tube at night?

The future for us is so daunting. I know all mothers have their own fears and concerns. Mine may seem unreasonable and full of doubt. I really like to hope that Evie will lead a normal, healthy life. The reality is, life for her, will be very different and very hard. Seeing those 4 girls really made this reality hit home for me. She won't be able to eat out. She won't even be able to go over to a friends house to spend the night without having proper snacks and meals prepared.

Sometimes I have to stop myself from worrying about the future. I have to take each minute, hour, and day, one at a time. One feeding at a time. A wonderful pastor at Brookwood told me that God gives us grace for the very second that we are living it. Sometimes its hard to believe we have even come this far. I read on another friend's blog "I think if I didn't live my life ,I would wonder if all this could possibly happen within one family". I know that we are truly blessed. God has his hand on our family, thats for sure. It is hard to fathom. As I retell our story to others, it does seem hard. And it is hard. I just find that living minute to minute is what gets me through. I can't worry about tomorrow, because tomorrow isn't here.
I realize that her condition is very stable and not as bad as others. I pray daily for other, more sickly children around the world. We are very blessed.

I ask for patience as we go through these hard times. I get down about it a lot, and I am looking forward to the day when I finally accept this diagnosis for our family. I was thinking today that I do want more children. I honestly do. I would go through this again, just so that our family would be complete. God is not done with us yet. I am, however, very ready for him to reveal his plan to me. Its in his timing. I pray that we can get through these next few hours and to tomorrow. It is, afterall, a brand new day.

Saturday, June 19, 2010

Our Saving Grace

So much has happened since I last posted. Evangeline is now on an NG Tube. This is a tube that goes through her nose and into her stomach. It may be early to celebrate, but she seems to be doing very well on it. Before the tube, she was drinking every hour and a half day and night, not finishing most of her bottles. Now, she is only eating every hour and a half during the day, and we are all able to sleep some at night. She is also doing much better with finishing her bottles.

I debated for a long time about whether or not to take pictures of her. I decided that I, as a mother, would remember this anyways, and I need to document how she looked, and how we felt about all of this, and, if for nothing else, for her later. How amazing will it be to be a teenager, being able to look back at all she has accomplished? It will be a miracle. I can't wait to share this with her when she gets older.

Today we went out in public with the feeding tube for the first time. We went to the bank first, then lunch, then the boardwalk. I found out today that Most people assume its because she is so little that she has the tube. This is not so. I hate to get into details with perfect strangers, but they asked, so I have to tell them. Most don't really get "it". I even had someone tell me that she will grow out of it and that I needed to have faith.

I thought this would upset me, but rather, I secretly smile and know that yes, she will be OK, amazing even, even though she will have this for the rest of her life. There is no talking to some people, and it does no good to try to reexplain what I just told them. They can have their own ideas. We don't know them anyways.

I found that most people are very interested and really do care. I don't know if it is because we live in the south, or if people everywhere would genuinely care about her condition. I had hoped it would be like this, instead of just getting whispers and weird looks from people. At least now I can educate people about the importance of Newborn Screening and LCHAD.

I am so excited about this new phase in our little family's life. We may finally be able to get some much needed rest. I am so grateful to modern medicine. If she had been born even 50 years ago, she would not have survived. This little tube is going to change our lives. Already she is sleeping better. For example, last night she went to bed at 2. Tonight, she went to sleep at 11:30. Hopefully tomorrow night it will be 8!! We are hoping to be on a better "sleep and eating" schedule, instead of simply an "eating" schedule. We are tremendously blessed. I love my baby and I think she is so beautiful and so strong. I couldn't be more proud to be her mother.

Tuesday, June 8, 2010

Monday, June 7, 2010

Mixed Emotions

These past few weeks have been tough. 4 weeks ago Evie Grace got some sort of virus and has been sick ever since. That, of course, means that she hasn't been eating the way she needs to. Her Ped. said that she has been getting 38 ccs per Kilogram per day when she needs to get 50 ccs per kilogram per day. Thats really not too far off from where she needs to be.

So, today we got some exciting and scary news. Her ped wants to try whats called an NG Tube. This will go through her nose and into her stomach. It will be taped to her face and is completely removable. It will come with a pump so that at night time she can sleep (and so can we!!!) and still be fed. We can start at 6 hrs. This is amazing because we have never let her go more than 3 hrs to eat. Thats not to say she won't wake up. If she does, we simply turn the pump off, and give her a bottle. We still will have to give her a bottle during the day so that she doesn't get whats called food aversion. We need her to be able to still "nipple" well. (or take a bottle well).

For me, this comes with mixed emotions. On one hand, I would love to be able to sleep for more than a few hours a day. I would also love for her to sleep more than a few hours a day. I know how hard it is on her eating every 2 hrs much less, every hour! Poor baby gets tired of sucking, I'm sure. On the other hand, I want her to be as normal as possible. Its hard for me to see her with a tube in her nose, covering her pretty face. Now, she looks fine, but with the tube comes many questions, I'm sure. I worry about going into the grocery store and people saying things to me, that I really don't want to hear. Shes my baby and its tough enough without harsh criticism from others who don't know what she has been through. I was talking with the Hubby about it and while I know that I shouldn't care what others think, it will be hard for me to take her out because I don't want them feeling sorry for her, or even picking on her for being different. The one downside to the NG tube is that you can see it, unlike the g-tube. We are going to get family pics done soon and I would hate for that to show up. Its also going to be hard to just snap photos because this, I'm not sure I want to remember. I guess its just motherly instinct to want to protect her from unkind words. We both, however, do like the fact that its completely removable. If she doesn't need it, then we can take it out, unlike the G-tube.

I hope that this is the best thing for her right now. Its not as invasive as the g-tube, but its not as tiring for us trying to force feed a child who doesn't want to eat. Plus it lets Baby Girl rest too. I think part of the reason she isn't getting well is because she isn't sleeping. Everyone knows you need rest to get better.

Thanks for all you have done. It has been making my life a little better, a day at a time. I can finally see an end in sight. If this works, I may be able to start school in the fall to finish getting my second degree, enabling me to teach public school. Who knows what the future holds?

Please still keep us in your prayers. This is a very sad and difficult step to take. I know I shouldn't feel like this, but I think that if I wouldn't get tired, then I could keep going, preventing her from having to go through getting this. If I could just keep it up, and feed her like she needs to, or if I could get the formula down her somehow, then she wouldn't have to go through this ordeal. I feel as though I have failed her. Its hard making this decision. I hope its the right one.

Saturday, June 5, 2010

Every Hour

Evie is supposed to drink/eat about 24 oz in a day. However, lately she has not been eating the whole amount. As of 1:00pm yesterday afternoon, her Diatician said to feed every hour, even during the night, at 1 oz per hr. and to save the formula that she doesn't drink, so that we can see what she isn't getting. Now this may be a little confusing. So let me try to explain.

I make up enough formula to last an entire 24 hr period. Supposedly, Evie is to get every drop that I make, in order for her to be 100%. Roughly it translates to 1 oz per hour. 24 oz in a 24 hr period. Usually she would take 2oz, every 2 hrs. Since she has not been finishing her bottles, we need to see what she isn't getting. Essentially, to make sure she isn't in a metabolic crisis.

So, if there is 3 1/2 oz or more, by 1 pm sat. then Evie will more than likely go into the hospital. However, on Sunday we kind of get a second chance to see if she can do better. So basically if she does it Sunday, she will be in the hospital Monday.

We have been diligently feeding her, trying not to wake her up, and letting her rest as much as possible. For whatever reason, be it prayers, a miracle, or she is just feeling better, there isn't even an ounce yet in the bottle!!!

This means that she is getting the right amount and isn't wasting as much as we thought!! I am super excited, yet I know that Sunday could be a different story.

I know its very methodical and it may be difficult to understand! Its hard for me to sometimes too! Especially on no sleep. And trying to figure out meds now, is simply impossible! I am just happy because yesterday, things seemed impossible and downright despairing. Today, she seems to be better, so I'm better!

Thanks for all the prayers and the help. The Hubby and I were talking, and we both know that this family would fall apart had we not had you this past week. Thanks for all you do!