Sunday, December 19, 2010

Eating With My LCHADder

Tonight brought the best of surprises. After all that complaining I did several days/weeks ago about eating out, with NO healthy options, Evangeline and I shared a plate, that was completely "Evie-Safe", as I like to call it. We went to Longhorns, I wasn't too hungry, but went along for the ride, as I often do. We arrived there, and Looking at the kids menu to see, and JUDGE, what unhealthy foods are offered our children, I was very surprised! They had grilled chicken and veggies! I was elated! So I ordered it, assuming the chicken does have added fats, I offered Evie Grace a small portion, but meats aren't usually her thing. (well lets face it, ANY food isn't her thing) She put it in her mouth, did the head shake bit and immediately spit it out. But she tried it, which is always a plus! We ordered the Veggies, which of course came with a "Veggie Butter Sauce" that I promptly asked the waitress to not add to ours, and they were great! It came with 2 orange slices, which were right up Evangeline's alley. She sucked the juice out of the orange, and tried bits of carrots and broccoli and some yellow squash. She even reached for some water towards the end of her meal and drank, Swallowed, and then went about her merry way. Of course, by this time she was extremely cranky, as she had worked VERY hard. Eating is not an easy thing for her, and she did well! I really feel like inserting an "applause" here.

Alexandra's Birthday Party (My 1 year old Niece)

Evangeline and I hosted Alex's party here, at our house, and of course there was cake, ice cream, sandwiches, etc that she was unable to eat, (due to both fat restrictions and inability to eat much by mouth) However, my wonderful sister was very accommodating and decided to buy her some FF Sherbet. I was very grateful. She didn't have to buy sherbet for her niece who doesn't eat by mouth! But she graciously offered it, and we accepted. We are always willing to try ANYTHING to get this child to eat, as she screams when she sees a bottle, and thrashes her head back and forth at the suggestion of food. (Obviously, she has gotten better, through much therapy, and prayer!!) I digress. She bought the sherbet and when it came time for Ice cream, I scooped some into a bowl, assuming it would get wasted, and thrown away, as do most of the foods I buy for Evie. However, she proved Mommy wrong! She ate several bites of the sherbet, without a fuss! No head turning, nothing. She even put the spoon into her mouth herself. This is something she hasn't done since before G-tube surgery.

All of this to say, we are no where near ready for eating whole meals by mouth, but we are making very slow progress. I am finding the more I work with her, the better she gets. I never force, but I encourage the MESS out of her to eat. Eat anything put in front of her.

Thinking back, to her surgery and what I was scared most about. This is it. I am living it. A bottle aversion, that has turned into food aversion. Something that we will deal with for several years. I remember texting friends telling them that I was afraid of this happening. All the nights spent holding a baby with an NG tube, crying, knowing that this was going to be the outcome. It certainly has been a very long road. And we have a long ways to go, but I am so grateful that I have a God who gave me such a wonderful support system. Moms that have tube fed kids. Moms that have kids with FOD's. Moms that have been through this and so much more. People that I can truly lean on for great advice, practical help, and just to be there when some things fall apart.

I am also blessed for other friends who have perfectly healthy kids. Ones that I can look and say, that will be us. ONE day! Maybe not today, or tomorrow, but someday things are bound to get better. These friends are so sweet and special to me! They uplift me, and pray for me! They comfort me when I have lost faith in God. (Which has happened many times) They may not even know it, but I look at their families, and I admire them and look to them for what we will be. They give me goals, insight on how to be a better christian, and parent. I used to look at them with envy, because they had "perfect" kids, but thankfully, prayerfully, I have grown, (...I hope!!) and now look to them for encouragement.

I'm not sure what inspired me to come clean about my feelings lately. Perhaps its Evie's 1 year birthday Celebration coming up. Perhaps its the Christmas Spirit, wanting me to tell all my friends how much I truly need them! Maybe its just time I thanked everyone. I am not sure.

I know that I have a long way to go as a Christian and wife and mother. Evangeline and I have a long road to travel. We are a long ways away from any meals that are ONLY eaten by mouth. But I look at where we came from. And.....WOW!

Tuesday, December 14, 2010

Medicines? Who needs Meds?

Well, having another issue lately with getting Evangeline the medicines she needs to function. We had run out of Amitriptaline yesterday, so I called the Dr had had it called it, supposedly. Later yesterday afternoon, I called the pharmacy, one of only 2 in town that could fill a compounded script, to see if it was ready, as it is across town, and I didn't want to drive over there just to see if it was ready. They, of course were still working on it. So last night we went without that med. Let me just say, that she has been having all kinds of stomach issues, and not having this med didn't help. She was awake till 12:30am, and just laid in my arms staring at me sometimes retching crying and having gas. So unusual. She smiled if I talked to her, but she was not feeling well at all, I could tell. We played the game to where I put her in bed, she cried for 10 min, I picked her up, rocked, walked, sang, talked, cuddled, etc, then put her back in bed, then she would cry again. For 3.5 hrs we did this. 9pm-12:30. Finally, I fell asleep in the chair holding her, and thats how she rested. Eventually she went to bed, but still woke up several times throughout the night.

There is no way I can tell if it was from a stomach bug or lack of meds, or both, but I know it didn't help.

So today, I go to pick up the script, assuming its ready. Guess what? It wasn't. The Dr never called it in. There was no script back there, nothing. I practically begged for 1 dose for the night, and they refused to give it to me, saying they had to compound it together, and the store was closing soon.

Not wanting another bad night for her (or me, for that matter,) I called Annessa to get advice, and help. She ended up calling the pharmacy, and low and behold, they had a bottle ready, just didn't want to dispense it to me without the refill script. They gave us the bottle on the promise that we would get the script taken care of first thing in the morning! I have no problems with that, I am just happy, to get the med in her! Tonight, she went to sleep at 9:30, per usual, and is happily sleeping, no retching, no crying, no gas.

Synergis: an RSV preventative shot

This shot has been a pain in the rear to try and get my child. They reccomend your child get this shot to prevent RSV, especially if they are premature, and have major health issues. Well, my child fits both bills. Born 2 mo early, and has LCHAD.

About 3 weeks ago. our Home Health Agency contacted me about receiving this shot. I had never heard of it, and frankly didn't really want her getting ANOTHER shot. It seems we are always giving her something. So, it apparently is a specialty shot that must be ordered through only a select group of pharmacies. This drug, without insurance, I found out, costs $2,500. For all the shots. It is a 5 mo long process, where she would receive 2 vials a month. Our insurance is going to cover most of that, Praise God. However, what it doesn't cover is $500. That is still quite a bit of money for a teacher, and a brand new 31 consultant/ preschool music teacher/ SAHM. I have called medicaid 5 times. 5 TIMES to see why they are not going to pick up the rest of the bill. And finally at 3:00 today, after telling them and being quite forceful, that I wanted answers. It is simply a ridiculous amount to pay for a shot, and quite frankly, it would be well worth medicaid to pick up the balance. If she didn't have the shot, and ended up with RSV, then hospital bills would go WAYYY over that amount anyways.

So, after finally getting in touch with someone, I found out that the reason they denyed the claim was because the specialty pharmacy that supposedly is one of only a few in the state that has the shot, does not accept medicaid as a insurance provider. That being said, I called everywhere today searching for a pharmacy that both carried the drug, and accepted medicaid. To no luck.

So, we may be out $500, or end up in the hospital. Well, obviously, I know which one is worse,The hospital. It just stinks to have to make that kind of decision. And to be put in that situation. So, I pray that God provides a way to let her get the shot that she needs, and let us find a provider for the shot that accepts medicaid. More phone calls are going to be made tomorrow.

I am tired. Tired of fighting with the system. Tired of having phone bills that are over my minutes because of these organizations that are supposed to help you, but treat you like dirt. Tired of waiting in line, for meds that aren't even there. Tired of Drs offices making mistakes that make my daughter's nights horrible.

It has been a long, long day. I am, however, grateful that the pharmacy gave us the prescription, just to get us through the night. Glad for the rest that I will be able to get tonight. And certainly glad for a nurse that is like family. That will stick up for Evie, when I am at the end of my rope. But most of all, glad for a God who isn't judgmental, and who listens when I complain about ordinary matters!

Friday, December 3, 2010

Eating out with an LCHADer

I can't sleep tonight so I decided to tell you about my first experience today with eating out with an LCHADer. We went to Southfield Grill. Usually, I would not post the name of the place/person that I am having difficulties with but these people were so incredibly rude and we so uncooperative that I am telling you, not to get you not to go there, but to explain why I will not go there, should you invite me with you.

We go in, and place our order. It is a down-home Southern country cooking restaurant, so ordering healthy is rather hard to do, as it is. I ordered smoked pork loin, which was apparently smothered in gravy, which I didn't know about, with butter beans, which apparently are cooked in butter(?), mashed potatoes and rice broccoli and cheese casserole, which obviously isn't fat free.

So, I went with my family, who had chosen to go there, on account of the short wait, and cheap prices.

I asked for some plain white rice for Evangeline. They bring out rice smothered, and I mean SMOTHERED in butter. It was yellow!!! And placed it in front of her and she reached her hand in and put it in her mouth. I, of course, was not expecting this. I asked the lady if it had butter in it, knowing full well the answer. And she, obviously said yes. So, I then asked if we could get some without butter. Just plain, white rice. Sans the butter. (Apparently, this is why we have such high obesity rates in Louisiana, and all over the south.) So, then I proceeded to find out that NONE of their veggies came cooked without butter. The waitress, not the brightest person in the world, bless her heart, asked me if I wanted her to eat Mashed Potatoes, COOKED IN BUTTER!!!!!! I said, "No Ma'am. She cannot process fats and I just want something for her to munch on, that is fat free". "Why?", the waitress asked, with an accusing attitude. My reply, "She has a metabolic disorder to where she will get sick if she eats fats". However, I lost her at the words "metabolic disorder". I couldn't get them to cook ANYTHING without butter. So they asked if I wanted toast. Without the butter. REally??? Toast??? Is that the best you can do for an INFANT? Needless to say, my child "ate" fat free crackers and a few Gerber pinwheels that I had packed for her.


Now, this wasn't our first time eating out with Evie. We have gone out numerous times, but I have never tried to order something for her. I always pack snacks for her to "eat" (throw on the floor, really) and to be a part of the family. But, she has been doing so much better lately, that I wanted to try something a little different.

So, why is it that I am embarrassed, when obviously, the waitress is the one who is ignorant and very unhelpful? She didn't try at all to accommodate Evangeline, and I have a feeling it is going to be like this for the rest of her life. I am going to try my best to protect her from situations like this in the future. I should have never agreed to go there in the first place, knowing Evie was going to try to eat with us. I can only be thankful that she will never remember this incident. I hope and pray that time will take the memory away from me.

Wednesday, December 1, 2010

Evangeline's School Options

I was raised in a public school. I learned to read, write, do some basic math, sort of. :/ Math is my weak spot as most of you know. But I was a relatively normal child. (I wish I knew another word for "normal") I had asthma. I didn't need constant monitoring by a teacher. Over sized classes are the staple there. I was placed in the back of the room because I was a "good" student (because I didn't talk, not because of my grades) I was able to eat breakfast at home, eat whatever sludge they decided to serve us in the Caf. and then eat a snack when I got back home, then supper. I did PE, like most other kids. Mumbling under my breath about this or that, but doing it anyways. I didn't have to worry about muscle breakdown, being too tired from not having physically enough energy and not eating adequately. I went about my day, "normally". We had a school nurse there to administer my asthma meds, should I ever had needed them.

Evangeline, on the other hand is different. She will have to worry about all of those things that I mentioned. She has to eat to have energy to do math, PE, music, and even talk. If we chose to put her in a public school, a school nurse would, initially, not be any more equipped to take care of her than I was. She would have to be well versed in the nature of LCHAD, as would all of her teachers, principals, bus drivers, same as in a Private school.

So why is it then, because she has a special condition that she, because of the nature of her condition,according to some, going to be even more difficult to get into a private school? When they have smaller sized classes? Teachers who who aren't over worked? (Not that I am saying Public school teachers don't care, by any means!!! But its hard to watch 31 kids like they need to be, as opposed to 17)

I guess what I am trying to say is that it is even more so important that she get into a private school where they can monitor her closely, where her opinions will be listened to, where her voice will be heard, and where the parent voice is respected as much as the teacher and child. And also to have her respected and not looked upon as being "weird" for being different for whether it be because she cant eat certain foods, or because she has a feeding tube. Where she will be INCLUDED. If, when she does get into school, and we do need a nurse, we can provide one.

Sunday, November 7, 2010

9 mo old And Still Not Eating

I last Updated a Whole Month ago. While my title may seem a little like a "Debbie Downer", the fact that I haven't updated in so long, is actually a good sign. Evie Grace, as I have take to calling her now, is 9 mo old. She last weighed in at a hefty 17 lbs and 14 oz. She is rolling, now on her belly more and more, and actually starting to put a lot of weight on her legs! We are getting "there". Not quite sure where "there" is, but I am sure happy to be "there" rather than "here".

When we last spoke, we started her on a new med, neruotonin, and we found that, that med alone, does no good. However, paired with the equally intense drug, amitriptaline, works wonders. She has been on both, now, for over a week. Before, only on the neurotonin, she would not take a bottle, she refused baby foods, crackers, Gerber toddler foods, and wouldn't even play with them. With the new med, amitriptaline, she is playing, tasting and has even swallowed a tinie-tiny amount of rice, milk, and perhaps bread and crackers. (Sometimes it is hard to tell where the small entity goes!) I will say, she does seem to be having some difficulty sleeping though, which is no fun for Mommy or Daddy!!

Occupational Therapy is going rather well too. We started seeing an OT as soon as we returned from NOLA. She has begun helping Evie Grace to learn to use her muscles better to help her learn to eat better. We have even started a new regimen where we no longer even offer a "bottle". We simply offer her a sippy cup. I don't even warm it up. By doing this I have gotten her to drink form it. Not much, but every little bit counts.

It is so hard to think of the fact that I have a baby that has a Food Aversion. When someone first gets pregnant and reads all the books, they become so insecure about everything they eat. No caffeine, no lunch meats, etc. Everything they do becomes about that baby. Even down to deciding whether or not to use pain management during labor. You don't really think about going home with the baby. No where in the baby books does it describe to you what kind of baby you may end up with. I would not Change Evie Grace for the World. What I am saying, is that it is hard. Breastfeed? Bottle feed? My child can't do either. If I breastfeed, my child will get too many fats and could have heart/liver/brain damage. However, now, my child can't even look at a bottle, much less drink from one. Tubes, Bags, pumps. Its all normal for us now. I look at pictures of babies. I hold my niece and tickle her belly. I hold kids in my Lifegroup. And I always find that I am shocked when I don't see/feel their G-Buttons. Weird, I know. I feel like this paragraph is rambling and I don't quite know how to tie it all in. Let me say this one last thing: We are all blessed to have such beautiful children in our lives. Count yourself blessed whether you have a sick baby, or a healthy baby. They are here for a reason. And even if God hasn't let me in on why Evie Grace has all the problems that she does, he still has his plan for her.

Wednesday, October 6, 2010

Trip #3 To New Orleans

The last time we were in New Orleans, they scheduled Evie for 2 follow up appts to return. We had to see her Geneticist and Hematologist. Luckily they were both on the same day. So we headed back down there, and made the long 6 hr trip, with Evie, again.

The ride down there was horrendous. I say this, not because Evie was overly fussy but because we ended up in the ER. Her Mic-key button came completely out. Thats right folks. I have never changed one, and I didn't have the right materials to do it, so Annessa, our nurse, couldn't even put it in. Praise God we were only 15 min outside of Alexandria when it happened, and my in-laws live there, so they gave us directions to the nearest hospital. Apparently, the hospital there, had no experience with G-tubes, because they had to get Annessa to put it back in. So we were there for 2 hrs, 30 min waiting, for Annessa to get the right type of syringe to re-place it. They didn't even have any clean, new ones to give us. Thankfully, the reason it came out wasn't because it was broken, but there wasn't enough water in the balloon to keep it in there. So, it simply popped out. Yes, she was bleeding and screaming. It was soo incredibly scary for me, and Annessa too, because we were afraid of losing the tract that goes from the Button to the Stomach.

Here is a little background information on the G-Tube Mic-key button. The button that is on her belly is attached to a tiny balloon that is filled with water. Apparently, eventually, the water can evaporate or something, causing the balloon to deflate. When it deflates it can come out more easily. The button on the outside and the balloon just popped out of her belly.

So, thankfully, the this was the reason it came out. However, it was starting to ooze fluids and leak milk, so we were concerned and ended up getting an X-Ray. Everything turned out fine. 2.5 hrs later, we were back on our way to NOLA. (with sterile water and the right syringes to replace it, should the need arise)


Round about Baton Rouge, she started screaming, and screamed the entire way to The Ronald McDonald house. (Which we eventually found, having gotten lost in the big city cause we misplaced our directions and couldn't find them!) We had to check in by 8, and we barely made it, but we did!

Once we got there, we all 3 breathed a huge sigh of relief. Whew! We had made it.

The RMH was a very pleasant stay. The people there were extremely nice and it really was like a huge family. They welcomed us in with open arms. The had tons of food to eat, and lots of places to visit. They even can take you to and from the hospitals, walmart, target, walgreens, etc. It was a 3 floor house, in the middle of downtown New Orleans. And it did have southern flair. I did find that there is not really any privacy because you can't eat in your rooms and there are 2 tv rooms, but no tv in the room. So, really there was a bed and thats it. However, it was great getting to visit with other folks, going through some similar times.

The next day we were to go to her 2 appts. We tried and tried to get a GI appt but they wanted us to come back in 2 weeks. There was NO way. NO way, I said. We arrived at the hospital at 8. So we got to the geneticist, and that went fine. He even tried to get us an appt, but they were "booked". There, we met with the dietician, and got the approval to try anything to get her to eat. Anything that is fat free, that is. So onward we went to her hematology appt. This, too, went fine. But we did find out that she has chronic Anemia and will be on iron for a long time, till it can get better. It may be an off and on thing. She also tried to get us a GI appt, but still, no luck. So they suggested we go to the ER, and then they would HAVE to see us. haha. So, we did.

We went and got checked in at the ER. By this time, it was around 3:00. WE had been at the hospital ALL DAY. And I was tired, Annissa was tired, and Evie was tired. But we prevailed and insited on seeing GI. It was here that we met the best Dr, so far of all. He came in with his shirt half un-tucked, sweaty, fat, and bald, and dirty glasses. He was very arrogant. BUT, he did offer us a solution. Something no other Drs have done. Everyone, so far, has said, that it would "get better in time". See, Evangeline has really bad problems eating. She will hardly take anything by mouth, now that we have had the Nissen and G-TUbe done. She retches, and wants to vomit, but physically can't. She refuses most foods, and only takes her bottle maybe once a week. And its only an ounce or so.

This Dr put her on a medicine that is regected by mainstream medicine. But has said, with other patients he has had awesome results. So we are hoping for the best. However, if it doesn't work, then he wants to do another med, in addition to the new one. This one goes to different pain receptors. SO, the theory behind it: if you can get rid of the pain associated with eating, then you can gain her trust in food, and she will learn to like eating again. This is our hope. However, if neither of these meds work, then when she turns 2.5 years old, and is still having difficulty eating, then they offer an eating clinic. It is 15 weeks long, and in New Orleans, and they will re-teach her to eat. It is a slow, slow process. But I have some hope now. Its not indefinite. I have a time line to look forward to. Yesterday, I learned that my child will not be 7 and still only taking formula, whereas before, this was my belief. We finally found a Dr who believes, like we do, that she is in constant pain when she eats.

So we left the ER, at around 7:00 last night and didn't get home till 1:30. It was a very long day. A long trip. But well worth it. If nothing else, I learned to never stop searching for answers for her. If these methods don't work, then we will go somewhere else. Atlanta, maybe, St. Louis. I won't stop till she is eating "normally" and is healthy.

So, to sum up: it was long, it was very hard, but I am sooooo glad we went. And I thank the Lord that it was THAT Dr that came to the ER, and not someone else who would have brushed us off again. It was truly a miracle. Lets pray that something works!

Friday, September 24, 2010

Advocacy for Those Who Cannot speak!

Yesterday, a young child lost his life due to a Mitochondrial Disease. I'm not sure about which specific one. But I know his mother, father, and sister know everything about it. This child is one out of many that have lost their lives due to a Mito/FOD disease. There are many wonderful charities out there that do research/education for childhood/adult conditions. To name a few, Susan G. Komen, Jerry's Kids, St Judes, Children's Miracle Network, etc. But how many of you have heard of Mitochondrial Diseases? Much less a place to facilitate funds as well as education on these types of diseases? There are 2 wonderful websites that I go to quite often for my own education and support with Evangeline's LCHAD (which falls under the Mito "umbrella" so to speak) The first one is a way to get facts and info as well as to be able to donate/be an advocate for these wonderful children who cannot, themselves, speak.

www.umdf.org

The second one is a way for family and friends of children with these disorders/diseases to connect. To share recipes, get support, etc. We are talking practical advice that the Drs don't tell you about. Day to day life living with a Mito/Fatty oxidation disorder.

www.FODsupport.org

These past few weeks I have had it on my heart to start being an advocate for not only my child but for others suffering from these disorders/diseases. We have been blessed beyond belief by being able to get a Nurse in the home for 30 hrs a week. So I now have more time and more energy to focus on finding me. While I do want to get a job, I also want to try and bring people information, clear, information about Mito diseases. The more people that are aware of the severity and the dangers that these particular conditions, the more likely we are to get a cure.

Perhaps if we came together, as a community of 1, we could work together to try and find a cure for not only my sweet Evie Grace, but for all children (and adults as well) living with these diseases.

What is my place in all of this? Starting next week, I am going to try and see if we can't raise awareness here in Shreveport. Denton, Tx had a 5k coming up that was for Mito. Perhaps we can find a way to have a 5k here? I am not sure. Many ideas are in the works, and God is helping me to figure all this out.

So, you may ask, "how can I help?" Firstly, you can pray. Pray for these kids, and their families that are dealing with this day to day. Secondly, if we can get a 5k here in town, get out your best sneakers and start preparing! Thirdly, know that while cancer, muscular dystrophy, cystic fibrosis, etc, are all known about, Mito diseases, while not as rare as you might think, are generally not. So begin talking about it!

There is also another need here in Shreveport. We have so many kids in the hospitals that need our support. Physically, mentally, spiritually. Not all kids are born with parents that are supportive. Some kids are simply left in the hospital for days on end. Other times the parent has other responsibilities and simply cannot stay with the child. Then, there is the need for the kids in the hospitals to feel safe and more at home. Again, you ask, "how can I help?" There are several ways. You can volunteer at Sutton Childrens, here in Shreveport and just do whatever is needed. You can also donate gently used toys or even brand new ones for kids of all ages. Then lastly, you can always pray. Pray for these kids as they are in an unfamiliar, often scary place, sometimes alone.

Thanks for listening and being a part of this chapter in our lives. Hopefully, we, together, can help minister to children and adults in this very practical and much needed way. Thanks again.

Thursday, September 23, 2010

Where do I begin?

Hey guys. We just got back from New Orleans from a weeks stay at Children's Hospital. For anyone that may not know LA, this is a 6 hr drive from Shreveport. So it was quite an ordeal. We went in on August 27th to a hospital here in Shreveport, where Evangeline had her G-Tube placed. WE were discharged 5 days later,where she was taking bottles so well, seemingly tolerating her G-tube. The next day, she spiked a temp, her BS was 206, and she was very lethargic. This is odd for an LCHAD child. Usually low BS is an indicator that something is wrong. So I ended up taking her back to the hospital. It was there, that she decided she no longer wanted to eat. At all. She began screaming every time we turned her pump on, and it was even worse bottle feeding. She was then on only D10, because her body could not handle formula. She began retching (she had a nissen done as well.) They transferred us to Children's after a week there.

Children's was somewhat better. She began tolerating some tube feeds, and we are still working on getting her to bottle feed. We have had her evaluated by GI specialists, who suggest to turn her G-Tube into a GJ tube, which I am certainly NOT a fan of. Meaning, they would internally, move her tube from her stomach to directly into her intestines, bypassing the stomach. Meaning she would eat only by tube. They would also give her meds to help with the pain of eating. They, however, can't do this until the G-tube tract has fully formed. Thank God, I don't have to make that decision just yet.

We also had her evaluated by OT and by speech therapy was well, and neither one noticed anything with her sucking/swallowing nor her gross/fine motor skills. Just having some difficulty with tummy time, because of the G-tube still being somewhat sore.

She was also diagnosed with Anemia, so it could be an issue of not having the energy to suck. We have her on Iron Supplements, for the time being, until we get the results of those tests back. We can then know if it is due to lack of nutrition, or other reasons.

Things are looking, up, however. She drank a little less than an ounce today and got 1/2 of her rice cereal from the spoon. She just loves that spoon. Anything can go in her mouth except that stinking bottle. We also received our Extended Care nurse. Things are working really well, so far. It is so wonderful to have someone who understands how to handle her and has experience dealing with special needs kids. Currently, we use her 9a-3p M-F. WE can also change hours up, if we have a special occasion or want to go on a date. It is kind of like having a Nurse for a Nanny. I am having difficulty letting her take over, but I realize that Evie needs to know other people than just her Daddy and Me. She will hopefully get used to Mrs A. pretty quickly. I would love to go back to school to work on getting either Alt. Cert to teach music in public school, or simply finish my Ed degree, only 22 hrs left. Either way, it means me finding me again and having peace in our marriage.

Friday, August 20, 2010

"Normal"

I'm not sure what everyone knows as of late, so I will try to give a *brief* update of Evangeline's health and issues surrounding this area of her life. Evangeline is having surgery next Friday, a week from today, to get a G-tube placed. This will help her to eat better, and also help her to sleep better at night. It will also help her stomach to stretch, enabling her to take more formula. At the same time they are also doing a Nissen: this is a procedure in which they are tying part of her stomach around the top of her esophagus, to prevent her from vomiting/burping. Enabling her to keep all formula down. She will, however, still have the need to dry heave/retch. Meaning we will have to do what is called "manual burping" where we use a syringe at the g-tube site to burp her and let the gas out. IF she is retching,we can try to get her mind off of it by running her hands under water or other things like that.

We are going into the hospital on Thursday morning, the day before, to have some tests run to see how big her stomach is, and since she needs to fast for that test, we are staying in the hospital and she will be on IV fluids. The Drs suspect she will be in for at least 4-5 days.

After returning home, she will continue to try to nipple first, then, if after 25-30 she doesn't finish her bottle, we will use the G-tube to feed her. We don't want her using all of her energy trying to suck on a bottle that she won't eat. Especially since she has LCHAD, and she needs all the energy from her food that she can get to keep her sugars high.

We are still in the process of getting an extended care nurse. Through all of this, I am a stay at home mom, who really does miss working, however, I do love spending time with Evie. Right now, we could really use help at night, but we have the NG Tube, which is sooo very dangerous. (You can look at previous posts). I learned that we can get an extended care nurse and once we get her in the home, we can choose whatever hours we want, so if I wanted to go back to work, after the G-tube is placed, to feel more like a human, instead of a Zombie-Nurse-Mother-Wife (in that order) we could use her skills to watch Evangeline and to keep her safe and healthy, without worries that she will get sick, like she would at a daycare. Of course, this could just be another pipe dream, and I may be stuck at home until she goes to school. But until then, there is always hope.

I hope you are well informed of all that is going on. All of my energy is going into trying not to worry about this "procedure" that everyone seems to think is a great thing. They think it should be easy for me to watch my baby go in the hospital like that. This will be her 3rd hospital stay in 6 mo. This has been anything but easy. However, as painful as it is for me to watch her go through this, and as little sleep as I am getting now, (and I would continue to do so, if it were in her best interest) I know that this surgery will help her in the long run. And that, is the ONLY reason I have chosen to do this to her. Not for my sleep, not for my sanity, but for her well being. I love her too much to let anything bad happen. And that is why I am dreading this surgery. I know the NG tube. I have done it in my sleep. I've learned it in and out, backwards and forwards, but this G-Tube will be brand new. I can handle that. But watching my little girl have something sticking out of her belly, for an indefinite amount of time, and seeing her with and IV in her arm for 4-5 days, laid in a hospital bed is simply too hard. And then knowing that she will have that Tube sticking out of her belly when we do finally eave, it is just heartbreaking. But, like everything else we have been through, I will adjust. We will adjust. And she, just like everything else that she will have to do, will think that it is "normal".

Wednesday, August 11, 2010

Operation

Ahh this one sounds like it should be fun. You know, the old game called "Operation" where the guy has all these different body parts that you have to insert back in his body and you have the tweezers attached to a wire? If you touch the metal side, the guy's nose lights up and makes a really loud beeping or I guess I should say honking sound telling you that you screwed up? Don't you wish that real life operations worked that way? That the patient's nose lit up every time you almost screwed something up?

In my last blog I wrote about how I received a phone call from Lady L talking about Baby Girl's Dr asking questions about a G-Tube. Well, I sucked it up and made an appt today. I was nervous because I didn't know how it was gonna go and I certainly had a right to be! Little did I know that when I did this he would want to do surgery right away. Meaning, my appt with the surgeon is in the morning and we are doing surgery, presumably next week, to get a G tube placed.

It was in the back of my mind, but I guess that I never really thought she would need it. I thought she would get better by now. That her reflux would get better, that she would start liking food more, that she would be more than in the 10th percentile in weight and height.But it hasn't. She has stayed the same. The only thing that has changed is the fact that we have been able to move from a 1 hr feeding schedule to a 2.5 hr feeding schedule, which, yes, is a heck of a lot better. But we are at a standstill. At the beginning of the NG tube placement, we said by August, if nothing had changed, we would consider something different, and the Dr came up with this solution. She has been on the NG tube now for 3 mo. It is so dangerous and is not a permanent solution. Not that the G tube is a great solution either, but it is a bit more safe for at home care.

All that being said our best outcome is us having this for less than 2 years. Our worst outcome is 10 years or more. No one will give us an estimate. I am hoping for the 2 year range. I pray that Baby Girl will enjoy foods and begin to eat more and more! But that was our prayer with the NG tube as well.

Now about the surgery:

With an ordinary child, this could probably be done as an outpatient procedure. However, an LCHAD child cannot go without fasting, therefore Evangeline will need to be admitted the day before so that she can be hooked up to IV fluids so that her sugars remain stable. Ordinarily they would ask that she not eat from say midnight till she gets out of recovery. For Evie, this is impossible. They will also need to be in close contact with Dr Marble, he specialist, during the surgery, should anything happen, like her sugars dropping for no reason, as commonly does with LCHAD patients. She will also probably have to stay the night that night to ensure that she tolerates the Gtube and the formula pretty well so that we don't end up right back in the hospital. And if she doesn't tolerate it, then we stay another night until she does. This is what is scary to me. All these "what ifs".

It is so hard for me to pray for "God's Will" because God's Will is not "Brittany's Will". My will would be for her to be perfect. Digest fats, no tubes, take all of her bottles, and be in the 90th percentile. But instead, she is in the 10th percentile, can't digest Long chain fats, needs a tube to help her eat, and is not "normal". I realize that the NG tube is dangerous for her and is certainly not helping my marriage or myself but this just seems so unreal. So permanent. The G tube will be better for all, if the surgery goes well.



I don't really know what more I can say. It is out of my hands.It really does feel like I am living someone Else's life. It is a very odd feeling.

Thursday, August 5, 2010

Pros and Cons

Let me simply state that Baby Girl is doing well. Very well, in fact. Developmentally, that is. She is, actually, according to Early Steps, an early childhood development program, meeting all of the 5-6 month milestones. We have met with these people several times and they have evaluated, looked, observed, and scrutinized her. She has played, and I have answered question after question, as honestly as possible. This particular program does not adjust or correct her age. Meaning that since she was born nearly 2 months early they take none of this into consideration. This is amazing, that she is doing everything a normal 5-6 mo old baby would be doing. She is just tiny. And I mean tee-tiny.

I have a almost 6 mo. old, 12 lb, 3.5 oz baby.I couldn't love her more. The only problem is her eating habits. I struggle daily with getting her to take what her dietitian says she needs to keep growing. She is staying right along the 10th percentile curve, which is great.

I received a phone call from....lets call her Lady L. Lady L is an office case manager for Baby Girl's Dr's Office. She has a daughter with a peg tube. She called to get some info on Baby Girl, which is normal, I get these calls all the time. And she and I have spoken before. Well, She also mentioned, at the end of our conversation that The Dr had come in a few days ago asking her about her daughter with the Peg tube. He also mentioned that he had a patient who he was thinking about recommending to get one. Lady L asked, "Is it Evangeline"? To which the Dr replied "Yes". She stated that he had mentioned this to her, because winter was coming up and there would probably be more issues with Baby Girl getting sick because it does go through the nasal passages that and we have had SO many issues with it.

I have no problem with Lady L or the Ped's conversation. What I do have an issue with is the Dr not calling me about this. He has obviously been thinking about it, and to hear it from someone other than him, is very disrespectful, in my opinion. On that note, however, when all of this tube business started, Patrick and I did say that if things were not better by August then we could start discussing other options. At least I know I tried my best, to try everything before jumping directly to the G-Tube.

Here are a few of the differences for those that may not know:

NG Tube:

Goes through the Nose
Is seen by everyone
has to be replaced weekly
Tape has to be replaced bi-weekly
Can be pulled out by Child
Not permanent-meaning if the situation gets better, then we simply don't insert it.
Requires Home health visits weekly
Has a pump that can be used for nightly feeds but is dangerous due to the fact that the child can inadvertently pull it out, meaning Child can aspirate.


G-Tube (AKA-Peg Tube)

Goes through the stomach
requires surgery for insertion and removal
Not visible
Must be kept clean
More Permanent than NG Tube meaning that if the situation gets better, the tube will more than likely stay, just to make sure that the situation stays stable and Baby Girl can eat everything she needs to by mouth, even when sick.
Has a pump that can be used for nightly feeds
Can also do another surgery at the same time to help ensure that Baby Girl keeps food down. This Makes her not throw up as easily.
Causes a scar
She will more than likely have this till she is at least 5 or 6.


This is not a decision we bear lightly. We have spoken about this at length. There are many, many benefits to getting the Peg tube, however, only time will tell if her stomach will get bigger to where she can handle larger volumes of formula. We were hoping that she would be better by now, to where we could extend her feeding time to 2.5 hrs, and then to 3, and then to 3.5, then to 4, etc. At the beginning of the summer she was able to eat every hr. We got to 2 hrs a few weeks later and are at a standstill there. It is exhausting to constantly worry about how much liquid your child is ingesting. Then, too, we had her on a feeding pump, but because of several issues with it, I no longer trust the saftey of Evangeline, so we are now bolus feeding her (feeding through the tube) every 2.5 hrs through the night. Meaning, we aren't sleeping again.

I would love to get an in home night nurse. However, we are waiting for paperwork to go through. These things take forever. Please pray with us, as we weigh these heavy decisions that will affect Evangeline for many years. Thanks.

Sunday, August 1, 2010

The Devil Works in the Night

It always happens at night. Those feelings of inadequacy, jealousy for wanting something I know I can't have, feeling that the 2 most important people in my life deserve better.

I try during the day to accomplish goals to make myself feel better about day to day life. For instance, yesterday, I wanted to finish up Evie's room, do dishes, etc. So when something happens and get in the way of letting me accomplishing my goals for the day it really bothers me. Not only not accomplishing the simple things like laundry and changing the sheets, but also not accomplishing mental goals as well. For instance, trying to accept that other families will have normal lives, unlike me and Patrick and Evie. It is a daily battle. What is the "norm" for us, is completely different from other people's norms.

We went to Dallas a few weeks ago to meet with some pretty awesome people. We stopped about halfway there to reinsert Baby Girls NG tube, on the side of the road, on a picnic table. (Good thing its not a sterile process!!!) We drove up to the hotel, after having had a 3 hr trip turn into a 5 hr trip. Proceeded to get all of our things out of the car, looked around and realized that no one else had an IV pole attached to their stroller so that their kid could eat. Little things like that.

The rest of the trip went relatively smoothly. We met at a little shop in Denton, and had beautiful Fat Free Yogurt, although I added a smidgen of granola to mine. IT was wonderful. I guess the most important thing that I got out of this trip was a wonderful friendship with another family that, hey, is just like mine!

These people, have a wonderful, funny, bright 18 year old daughter who has LCAHD. IT is so nice to see that she is normal, and can hang out with her friends. I guess I had it in my mind, that Evie would have a very select group of friends that knew and understood about her disorder, and would accommodate for that, and that still may be true,but she can go to school, she doesn't have to let the entire world know that she is Fat intolerant, so to speak. Fat content is a very big topic in our household, and I do get concerned about what how future friends and their families will handle Evie. I heard of one family who had really good friends who had a shelf in their house dedicated to their child. Its just nice to know that even if this family is 3 (er....5?) hrs out of the way, they are nearby and we can get together regularly. We ARE all in this together.

Literally, it pains me sometimes to look at healthy babies that are Evie's age. For whatever reason, I have no problem with older children, just the younger ones that are healthy. I think all sorts of horrible thoughts and I can only beg God to forgive me. Its not, necessarily, that I want something to happen to those kids. Its just that I want Evie to be healthy and "normal". I want Evangeline. I just want her to have all the enzymes necessary to process fats so that she can lead a normal life. The Dr told me Monday to keep her away from other kids , so I guess that solves that problem. The germs are too sneaky and can find their way to make baby girl sick. On the one hand thats great because I don't have to put myself in a situation, where I get upset and come home and cry, and Evie doesn't get sick. On the other hand, I need adult interaction, especially now that we are back to staying up at night. Patrick will be leaving to go back to work next week and also begin taking more classes soon, and I know these feelings will all get worse.

IT always happens at night. I am laying in bed trying to go to sleep, and I can't for many reasons. Fear, worry, just can't relax, then all of the sudden these feelings of inadequacy and jealousy creep in, as if i am simply waiting for them.

Thursday, July 29, 2010

Yes, It Could Have Been Worse, But Still....

This will be short and sweet as I have a toddler wanna-be in my arms.

Tonight began like any other night. We got home, I gave Baby Girl a bath, a bottle, which she struggled with, and then put her on the pump. She was kinda fussy. With Evie, she fusses for about 5 min, then usually goes straight to sleep. This time was no exception. Except that 15 min later I hear rustling, so I give it a minute and hear more fussing. So I go in and check on her, and she had pulled her tube out. She had been asleep i know, and then in her sleep, I guess, pulled it out. I figure the bath removed some of the adhesive on the tape and when sucking on her fingers/paci somehow she missed her mouth and grabbed it out. This poses 2 very different problems:

#1. Praise God she is still with us. I am so thankful she pulled it all the way out and not just part of the way because she would have died. No doubts. Because I wouldn't have heard her, and it would have slowly drowned her.

#2. Now she is awake, and playing, praise God, and I have to reinsert that blasted tube when I really dont want to, on account of her safety.

What do I do? Leave it out and not get sleep anymore, like before, or trust that she will be "ok"?

Saturday, July 24, 2010

I blame it on the Stretch Marks.

Evie woke up this morning at 5. That's right 5. An hour and a half later,she begrudgingly took her paci and fell back asleep. After that, she woke up screaming for a bottle, which I fully expected. So, I made up more formula, and gave her a bottle. She then played and played. This is the part that was good today. So, I jumped in the shower and got my daily 5 min scrub down. Hurriedly got dressed. Today is picture day!

See, after having had said baby, my clothes don't fit the same way. Things don't look the same, bodies are different, therefore, clothes are different. I had to find a new shirt to wear. One white shirt. That's all. No pants, no undershirts, nothing but one, simple white shirt. Evie had been fed, we were both ready to go. I rushed to get over there, knowing that the bright sunlight would soon be out and I didn't want my headache to get worse. So low and behold we got to Pennies without a hitch. My plan for the two of us was working fine. I drug out the ginormous stroller, packed in all of our gear. I fit her car seat on the safe and sound and rolled her on in. I started looking around. A few min later, I noticed a Nurse Practitioner from the NICU and I had to say hello and so I opened the the car seat sun visor so she could look at how tall and big sweet Evie has gotten and guess whose Eyes had popped open! Thats right... Evies... Smiling, as if she were up to something. A mischievous grin for sure. We said our goodbyes and went on our merry way when Evie started the first of many fusses. I looked at the clock and sure enough it was time to eat. I made our way toward the bathroom. We sat there, she was crying and I was starting to sweat. I got looks from people. Some were sad, like they felt sorry for the poor mom by the bathroom, trying to console her screaming child, others, I assume, thought I was beating her. So we gave up on feeding. I was holding her at this point and we began to walk around. Passed some sales associates, and she was smiling being happy with them, we looked at the lighting aisle, and the mirrors, where she had a blast, looking at all the beautiful babies looking back at her. And all the beautiful Mommies too. So I found us a comfortable seating area to try to eat, as we all know LCHADers have to eat, and at this point her NG tube was take out because we have Photos being done this afternoon. So as soon as I sit down, she starts screaming her head off. I try bouncing, I try swinging her like a mad person, I try everything. I just want her to eat. So I let her stand on my legs and again she is happy. This time, an older lady comes by and looks at her (of course she has a rash on her face,due to the tape, this time by her eye) and says "do you have lipstick on your face". I wanted to say, but didn't "yes, lady, I kiss my daughter right under the eye, and I wear that much lipstick, and buy the cheap kind that comes off and gets all over her face". I just laughed at her. I'm still sweating, I'm sure I stink by this point, so we walked back by the bathrooms, and I try to feed again. I am praying that she takes it this time, but nope. So I give up. She got a total of an ounce. We were there for over an hour and I still had not shopped. By this point, one of the associates that saw me, had asked if I needed help. I really desperately wanted to scream yes. But saved that for when I got home. I have a feeling that kind of help isn't in her job description. So I strapped her, loosely, in her car seat, and went in search of any white shirt, that would even remotely fit. I went toward the dressing room, and we both went in. I tried it on. I thought to myself, "The icing on the cake would be if they thought that I was using her car seat/stroller to try and take things". I worked in retail. People do some crazy stuff! So I really just wanted to get outta there!

SO I buckled her in nicely, checked out, and by the time I was pulling down the car seat visor, she fell asleep.

Monday, July 12, 2010

25 going on 2

Sometimes I feel like a 2 year old. Laying on the floor, flailing her arms about all the while, screaming "Life's Not Fair". Then God, the ever patient Father, comes in and says, "No, its not. I'm sorry, but this is for your own good, and I know how much it hurts, but things will be better for you in the end". The Father lets his daughter pout. Only, my pouts last for several hours, even days. I wish I could be like that 2 year old that quickly forgets her troubles, and accepts the decisions her Father has made.

It seems that, lately, I stay in this mindset of deep disparity. Today, a few things set me off. Firstly, somethings are truly personal and I cannot post about them. Secondly, I looked around the VBS room today noticing all the healthy kids, and again my mind screamed "Its Not FAIR"! Thirdly, they announced the snack. It was to be goldfish and juice. Evie cannot eat goldfish. Again screamed, "Its not fair". I am trying to train my brain to think about all the things she can eat, instead of all the things she can't. As you can read, its not going well.

I wish I could quit pouting. I wish I could accept this decision that God made about my family. I wish that I could be that mom that doesn't need help. I wish that I could sleep. I wish that I could keep up with the housework. I wish....I wish....

Well I guess you can wish in one hand and....well, you know how the old saying goes. I pray daily that this gets better soon. I am going to attempt to have goals for my day to day living. I think that may help. And to keep a schedule. I've heard that helps.

Thanks for going on this journey with us and letting me vent.

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!

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.