Friday, May 28, 2010

Ahhh, finally

Looking back on today, I must say it has been the best one in a long time. I went to the Dr today and am feeling much better, I got to hang out with some awesome ladies from Lifegroup and their 2 precious boys, and Bro Mark, Brookwood's Pastor, prayed for our little family. I just happened upon him. And actually, out of embarrassment, I wasn't even going to ask him, but one of my good friends stepped up and asked him to pray with me. He was so kind, listened to our story, and then took the time to give me 2 scripture verses that he wanted me to claim, so, here goes:

Psalm 34:7- The angel of the Lord encamps all around those who fear Him, And delivers them.

Psalm 32:7- You are my hiding place; You shall preserve me from trouble; You shall surround me with songs of deliverance

These 2 verses really do mean a lot to me. I am not worried that she will die. This I know for certain. Evangeline is surrounded by a constant medical care team who really do care about her well being. I speak with her Drs weekly and they always tell me if I have any questions or concerns to call and we can discuss the issue.

The issue that I am having, is the unknown. I live day to day, hour by hour, not knowing if this is the day that will land us a trip to the hospital. I don't know what her future holds. What our future holds.

These 2 verses remind me to let God be my hiding place. I should not fear the unknown, because God will always deliver us. Even if we do find ourselves in a situation that is scary and may perhaps be painful for her and for us, we can lean on God's understanding, and know that one day, we will see his hand in all of this.

My Dr reminded today that Evie is here for a reason. I may not know why God has chosen our family to protect this precious little one, but I know that she will touch someone's life. This whole time I have been thinking about how this will affect us, our family. But I had not thought about how we, as a family, could touch someone's life through our struggles. I truly hope that someone can gain from what we are going through. That would make it worthwhile.

We had a medical breakthrough today, as well.(I hope I am not getting excited prematurely) Evangeline has been sick for 11 days, and is still sick, however, her Pediatrician prescribed a new medicine that is an antacid. I must say, I believe this to be a miracle drug. Every evening, for several weeks now, from around 10:00- 12:00 she has been crying uncontrollably and is inconsolable. When I spoke with her Dr this morning I asked him about this. He immediately called in AXID. I am not one to want to medicate her unnecessarily, as she is already on 4 other medications/supplements. However, I am so grateful for this one. I gave it to her at 10:00. Then, She drank her entire bottle in 15 min. She has not done this in at least 11 days, since she has been sick. She immediately fell asleep and slept until 12:00 where I gave her another bottle, also finished in 15 min, then fell right to sleep. I am amazed. This night has been awesome. I am so used to her being so fussy and she ate really well, and went to sleep. As I stated before, I really hope I am not speaking prematurely. Afterall, it could be a fluke, and tomorrow she may go back to her heinous ways: screaming and crying. I am hoping this isn't the case.

I have decided to get Dr Vaughn a Christmas gift. He really deserves it. Heck, I may find out when his birthday is and give him a gift then as well. The bottom line is, I know we pay him for his services, but he does an awful lot for our family, for only $15.00 a visit. I can tell he truly cares for Evangeline, and his nursing staff as well. I could never thank him enough for the wonderful care he provides.

While they may never read this, I want to say thankyou to 2 men who really touched my life today:

Thank you Bro. Mark for praying with me today. Brookwood is so large, and even though we have only spoken a couple of times, you really touched my life and changed it for the better. Thank you for letting God use you to minister to the needy. You will truly be missed!

Thank you Dr. Vaughn for providing Evie with the best care possible. I am so thankful that God led us to you. I would hope that other Drs would be as caring and concerned for her well being, but I am so glad I don't have to find out. You will always be remembered in our family for touching Evie's life in such a positive way. By the way, I look forward to speaking with you, again, tomorrow. Thanks!

Friday, May 21, 2010

Visit #2 To the ER

I sometimes don't know why I bother to even post. It doesn't change anything, except to ease my mind and to vent a little about our experiences. Somehow, I believe writing about it is somewhat therapeutic, even if it doesn't help her to feel better. Feel free to skip this one as it may be long and drawn out. I just want to give you the picture of what we went through dealing with these people in the ER.

The Beginning:

Yesterday started like any other day, except she has a virus. All morning long she was crying and overall very fussy. She has never been like this. I couldn't put her down. She would fall asleep in my arms and I would go to put her in her crib, and all of the sudden she would wake up screaming to be held. She also would not finish any bottles. I would give her the option of eating a full bottle, and she could not finish it, so I would just hold onto it for an hour and then give her the rest. This was hard because that meant I was feeding every hour instead of every 2. So at 9:00 I fed her and held onto the bottle. Her Dr suggested giving her tylenol for fussiness and so we tried it. Up until this point she had no fever. I was actually able to lay her in her crib and she went to sleep! (Thank you makers of Tylenol!!!) I picked her up at 10:00 and sure enough she had a fever. It was a slight one at 99.1 but thats after having had the meds. So, I watched her and she was less fussy, but still had to be held for the most part and still wasn't eating right. So I called the Dr at around lunchtime to let them know what was going on, just in case. They offered to go ahead and admit her, but I was confident that I could handle it at home.

At 3:00, after her feeding, she threw up. I was beside myself. I panicked, because I was already feeding every hour, so its not like I could really wait a little bit to feed her. So I shoved some Oral Glucose Gel into her mouth so that her Blood Sugar wouldn't drop, and I called the Dr. I didn't hesitate, I just said we are on our way to the ER, and we are going to need the D10 IV. (concentrated glucose) when we get there. Well, of course I had no clean bottles, so I had to rush to get them washed so that we could have some food to give her, and knowing that the hospitals have no Portagen formula on hand, we usually bring our own. So that gave me time to get her stuff together for the overnight stay. We arrived there just about in time for another bottle, and she held it down. And she kept every bottle down for the 3 hrs we were in the waiting room.

I would have been really upset had she not been able to keep things down and we were still in the waiting room with no D10. So, we go back in the back and she sees a Dr. We speak to the him and he clearly did not know what LCHAD even was. Then he proceeded to ask me if I had ever, in all of this, checked her BS. Of course I hadn't because she had been eating all day so it would be ok. He patted my shoulder and said "this is when you would need to check her Blood Sugar". As if I don't know when to check it and what I should do. She wasn't right, hadn't been for days and I was at my wits end!! So condescending!

To make matters worse, we have an emergency management letter stating what should happen in the event of an Emergency. Of course, they did not follow the letter. She never at any point in the visit received D10. I was also aggravated because her Ped said I could call him on his cell if we had any trouble or if I just had questions. Well his phone was off! I would have been more understanding had he not said to call him. So I had to go over his head and call Dr Marble. (Whose suggestions always involve a long, drawn out hospital stay.) I finally got the ER Dr to not rely on the On call Dr from the Peds office, who we have never seen or even met, and got him to phone Dr. Marble.

The End of the Road:

Her labs came back normal and showed a slight elevation of her Ammonia levels and her lactic acid levels, but I don't even know what that means. So, after having spoken with Dr Marble, I knew she wasn't in a metabolic crisis because she had been eating all day, in pieces, and keeping all but one feeding down. He did suggest we keep her there for observation and to be seen by a GI Dr.

We took her home. I just made the wrong choice in bringing her in. I was exhausted from doing this for 3 days and then feeding her every hour, I made a desperate attempt to have a quick fix, when there is none. The fact of the matter is, she is sick, doesn't want to eat very much very often so if we have to feed her every hour, so be it. It keeps her out of the hospital, where the risk of further infection is always higher, and I can always call someone if we have a problem.

Day 2

Today she is much better. Patrick and I fed her through the night, every hour and finally at 5:00 she took the whole thing except for about 5 ccs. Which is hardly nothing and won't really matter. She took the whole thing at 7:00 too. It is such a relief. I am still exhausted, but knowing that tonight, Patrick will be at home with us the whole summer and can help out is what is getting me through.

Conclusion:
I am not good at making decisions especially when I am exhausted and just want her to feel better. I should have called and insisted someone come over to help me instead of trying to do it all by myself. I know I have a family who would help out, and a very central group of friends who could help out too. At what point am I going to understand when to take her in and when to manage at home? All I want is a healthy baby. I would give anything for her to be normal. It has been the toughest week yet as a parent. I am hoping today proves to be a much better day than yesterday.

Wednesday, May 19, 2010

My Many Hats

Wife: Taking the time to put aside all of Evie's current issues, I must take a moment to acknowledge my Husband. I read an astounding statistic the other day. According to some study done, by someone I can't remember, 80% of children with special needs parents end up divorced. (sounds real legit, huh?) I couldn't believe this. Then I stopped to think about it. Patrick and I do not see each other. He goes to sleep almost immediately when he finishes dinner at night. Then I stay up with her through the 12:00 feeding and he then wakes up at 2:00 to feed her through 6:00. We hardly talk about anything else but his horrible position at work and Evie. He hasn't even had the chance to really digest what our daughter and I are going though. We had a long talk last night, for the first time since she has been home, about G-tubes and her problems. I realized I talked more to people from Church about her condition than I talked to him about it! Thats just sad. He didn't really understand how emotional it can be and how scared I really was. It felt really nice to be able to share my fears with him. I knew having a baby would be hard, but who knew that it would be this hard? I love him very much and am so excited about the summer. Its bad that I am already dreading August.

Mother: I get the absolute pleasure of seeing her grow daily and take on new skills. This is so amazing. Coming from a time where she was in the NICU, hooked up to moniters galore, eating from a tube, and seeing her sleep for nearly 24 hrs straight, to now, where she is awake for most of the day. She eats so well, plays so much, and offers me many smiles. She knows her Mommy loves those!


Advocate: I was just recently reacquainted with this word. I have to think like this because I am her only advocate. She has no voice, and I have to learn to speak clearly and effectively to let the Doctors and nursing staff know how the cow eats the cabbage!

Our most recent problem: Evie got sick! Of course, the first time she gets sick, her regular Ped. isn't in so we have to go see the on call Dr., who knows NOTHING about LCHAD. This is so aggravating because I, again, have to explain it, and, of course, he then thinks he knows better than I do about her condition, which he doesn't. They have educated me enough about her condition to know that pedialite, while good for raising her BS, is not sufficient nutrition for an LCHADer. He tried to convince me to give this to her every 3 hrs for 6 hrs if she were to vomit again. Now, this would pose 2 problems: 1) She would get full off of the pedialite and not want to eat her reg. formula. 2) Her BS would no longer be a sufficient way to tell if she was in a metabolic crisis. In essence, it would be like giving a toddler only popsicles instead of real food. And I am sure there are several other reasons why an LCHADer should not receive pedialyte as a complete replacement for formula.

Another issue with being her advocate: making choices. After having spoken with the on call Dr, about giving her pedialite, I decided to call her specialist. He then recommended, if she were to vomit again, to #1 give her oral glucose gel, #2 take her to be admitted for an IV of D-10 (concentrated glucose), #3 get her a feeding tube so that we wouldn't have to worry about her appetite or her reflux. This is disheartening. Its hard enough seeing your child sick, much less seeing them sick in the hospital, hooked up to IVs and monitors. She would feel much better at home where she can sleep in her crib and play when she feels better, rather than being permanently attached to a machine and having a needle in her arm 24 hrs a day. Her disposition last time showed me this. Now, I understand, if she needs the D10 then she needs it. It wuld certainly help her to get over the illness better and help her to keep her food down. But the only way to administer this is to be admitted. So when should I make that decision? I guess when she refuses to eat at all and is vomiting when she does. Its so hard to tell. Everytime she has an issue with vomiting I play this over and over in my head.

Me: So with these 3 hats, where does that leave the 4th hat? I guess in the closet in a box. It is hard for me, because I have completely given up who I am. I love my husband and my daughter, but I miss the old me. #1 I miss exercising. I hate my post preganancy weight. I always told myself that I would never be one of those mothers who lets their child completely dictate who they are. They lose their body, they lose their time, they lose hobbies, etc. #2 I miss teaching. I desperately wanted to get my certification to teach music in public school full time. Right now, feeding her like we are, I hardly have time to shower, much less go to school again. #3 I miss singing. A good friend told me once that my abilities were now going into my daughter. I do sing to her all the time. It is one of the only things I can do to calm her down (that and some infant massage) My days and nights go into taking care of everything and everyone else other than me. I do sometimes steal 30 min to take a hot bath. Last night I was able to read the Bible some, which was nice. #4 I miss working at church. I see a need and I want to help fulfill that need, but then again, that would be another hat to wear. I really do understand fully the need to have Grace Respite: a night where parents of special needs kids can drop them off to enjoy a date, or even just some alone time at the house.

Summary: (its about time!) Even with these many hats that I seem to wear, I would not change anything. I love my sweet Evie Grace. She has such a sweet spirit and is so loving and kind. Her Dr was talking this morning about an altered enzyme that would help her to be able to digest and process fats. Scary, but it does provide hope. Everything has a season. Right now, I need to focus on my marriage and her. God will one day reveal his plan for us. Once again, thanks for listening.

Saturday, May 15, 2010

Amazing Grace

Amazing Grace,
How Sweet the Sound,
Amazing Love,
Now flowing down

From hands and feet
that were nailed to a tree
Your Grace Flows down and covers me.



This song now has so many meanings. As I was singing and rocking Evie Grace, I believe I was having an intimate conversation with Our Father. He reminded me of all the things that he has saved me from, and how his Grace has covered me. Then I began thinking about my sweet Evie Grace, who I was holding in my arms. My Amazing Evie Grace. And how much we have been through together. God seemed to say that his love is with us, and always will be. Even as I type this, I'm not even sure that it makes sense. But somehow, God has touched me tonight, in such a way that I have never experienced before.

I have so many doubts and fears about her. I keep wondering about her condition and how it will affect our little family. I sat in my rocking chair, silent tears falling, while silent prayers were sent upward. God brought to mind another song. This song is one that I'm sure everyone knows and sings, but for some reason, the words never really meant anything to me. That is, until tonight. This old hymn, Great is Thy Faithfulness. It was as if God was answering back to me about all my fears and questions, in this one, hundred year old song.

Great is thy faithfulness
Great is thy faithfulness

Morning by Morning New Mercies I see
All I have needed thy hands hath provided

Great is thy Faithfullness
Lord unto Me.

Music has always reached me. Ever since I was little, I can remember wanting to touch God's heart through music and sharing that with others. However, I am not sure if it will ever touch my heart, like it did this evening.I know I am scared, and still have many, many doubts. But I know whatever our family goes through, God will still provide all that we need. I still find it amazing that the God of the universe cares about our little family, living in our little city, and on our little suburban street.

Friday, May 7, 2010

Update

I just wanted to give an update on Evie. She is growing SOO much! Its hard to believe she has only been with us 3 mo. It seems like she has always been a part of our lives. The formula is working really well. She was born at 3lbs 5 oz and now weighs 8lbs 3oz. Almost 5 whole pounds in 3 months! I have had to retire some of her preemie clothes and newborn clothes as well!! She is getting soo tall too! She was born at 16 1/2 in. and now is just over 20in. She also has not vomited since Tuesday night at midnight. Whew! Maybe she is growing out of it!

(I am going to brag a little in the next paragraph. Just a warning in case you wanted to jump ahead.)

Along with weight,which is one of the most important things to look at for an LCHADer, she is also doing well developmentally. She has rolled over 2 times, is teething, knows her pacifier, smiles constantly, and stares intently at whoever is feeding her. She is brilliant lol! I am guessing she will start composing her first symphony at the age of 3. (Thats the goal, anyways) HAHA! She also has wonderful people skills: The Drs and nurses just love her, almost like she is a celebrity!


As far as her meds/supplements go, she is still on Reglan,(for Reflux/vomiting) although we decreased it last week because she was so sleepy, she wasn't waking up! She is also on DHA (for eye development/prevention of retinopathy.) We still have her on Iron(for low iron, obviously) and Polyvisol (a multi-vitamin) I also found out the oddest thing: she can't use too much sunscreen because of the oils! Thats just crazy.

We got some test results back, as well. We were waiting (for 2 months mind you) on a DNA Sequencing test (I'm not too sure what that means, really) But we found out that she has 2 mutations of LCHAD on one Chromosome and 1 mutation on the other. Basically, all this means is that she has the gene, its just not working properly (its mutated) Some LCHADers are simply missing the gene. Of these mutations, 2 are common , found with most LCHADers , and one that is found on only 2 other LCHADers in the world. Crazy that they have all this documented.

We are going this weekend to Alexandria to visit her Mimi and PawPaw. Of course I had to let her Ped know because we will be a few hours away. I am hoping the visit goes smoothly and we come back on Sunday, having had no problems.

Thanks for letting me brag on my little one. I am so proud.

Saturday, May 1, 2010

3 Months Old

Evie is 3 Months old today.It doesn't seem like she should be that old. She seems too small and delicate to be this age! She was born at a small 3 lbs 5oz and now, 3 Mo. later, she comes in at 7lbs 12oz. She isn't doing the things most babies her age are doing, but she is doing things at her own pace! She's smiling, she is awake and alert several hours out of the day,and I like to think she knows when her Mommy picks her up (and when her Daddy picks her up too).

She is the most precious gift aside from Salvation and my wonderful husband, that I have been given. Its hard to believe God trusts me/us with little this life to help guide, and mold and shape after his heart. Its a huge responsibility that neither of us take lightly. I hope one day she will grow to love Jesus as much as we do and also grow to want to serve him and other people. This is my prayer for her.