Blessed

I have always had a hard time accepting things from others.  I felt uncomfortable when people would give me things or serve me (with the notable exception of my parents).  I think it is because I am independent and strong-willed.  I hope I am not proud.  Lately, the Lord has been helping me to learn to accept and appreciate gifts from others.
When Isabelle was born I expected to have the same nursing relationship with her that I have had with my other children.  I already had a picture in my mind of what it would be like.  When she refused the breast, my heart broke.  I knew she was not refusing me, but somehow I couldn't meet her needs.  When I finally weaned her off of finger feeding I felt vindicated.  You just have to try hard enough.
At four months she had lost weight and we were sent to the hospital.  When I attempted to pump for her I couldn't get nearly enough.  What happened?  I felt betrayed and disillusioned.  This wasn't supposed to happen.  While I struggled to come to terms and to get my supply back up, Stephanie, my wonderful sister-in-law stepped up and using a hand pump, changing her diet, and loosing sleep, she brought us milk about every other day.  She did this for about a month, and I struggled to accept this wonderful amazing gift.  I tried many times to tell her how much it meant to me, but I don't know that you can understand unless you are recieving .  I felt relieved when my supply finally caught up.  I'm sure she did too.  (:
More recently, I have had my supply go down some and her needs increase.  I was going through my frozen milk supply fairly rapidly and had tried a hypo allergenic formula to supplement.  I found that while I could get her to accept it by mixing it with milk, if I gave it to her straight she would throw it up.  I didn't want to give it to her, I knew that especially with her challenges she needed the most help she could get and so I started working again to get my supply up.  It has worked only to a point, and then it stopped.  Short of what her needs are.  My family and I started to feel the strain of constant pumping.
Then another wonderful friend, Anaise, offered to pump once a day for me.  To her it is a small inconvenience.  Extra dishes, keeping track of a pump, 15 minutes or so.  She has assured me that it does not interfere too much with her life.  This is important to me because she already has a lot on her plate.  To Isabelle it means better nutrition, more brain growth, and less stomach trouble.  To me. . .to me it is an amazing gift of love.  It is someone doing for me what I cannot.  It is relief.  Time with my other kids.  Time with my husband.  Time to enjoy and hold my baby.  Peace of mind that even though there are so many things that I can't do for my little girl, so many things that I can't effect or change, so much wondering if I am doing enough, in this one area I know she is getting the very best nutrition possible.  With the help of others and the help of a all knowing all loving Father in Heaven we are giving her the absolute best thing for her.

Thank you to everyone who prays for her.  I feel those prayers.  Thanks to all of those that have served us in a hundred different ways.  Who have asked about her, who care about us.  Thank you.  I am learning to accept that I cannot do it all, but with the Lords help and the help of his angels on this earth, the important things can get done.






Merry Christmas!

 

Nutcracker Madness!

Joseph is in there if you look carefully. (:

Wow! Thinking back on the last three days I am happy.
Happy they are done.
Happy we had the oppurtunity.
Happy for friends and family supporting us.
Happy.
We have just finished 7 performances of the Nutcracker. Two on Thursday, Three on Friday and two on Saturday. The kids worked hard. They practiced and worked to get their parts down right and in the end it was worth it. Sometimes everything went smoothly other times we hit some bumps but in the end we came through it.
Joseph Ammon was an Older Party Guest (others his age were the younger ones- which he said was more exciting, but when you are 5 foot 7 it is hard to act the younger parts), a mouse, a page and a Russian Dancer. His Ballet teacher complimented me that his russian dancing has come a long way and it has. He is more confident, more flexible and faster.
Alayna was a fairy attendant, a buffoon, and a wind-up doll (this part was only through perseverance since it was already given to someone else but Alayna kept showing up to rehearsals and stood in for this other little girl who never came so she got the part by default). She did a wonderful job in all her parts and is very talented. By the last performance she did much better at looking out at the audience and Smiling.
Evelyn had her first experience with the nutcracker. She wanted to be in it last year, but it was too late to put her in. She was a snow bird and a Merry Maid. She was adorable and loved to be early to her post so that she could be absolutely sure to make her part. She smiled and acted and delighted in the attention.
Noah wasn't technically in the nutcracker this year. But every time we went to a show he would ask me "where is my Jake the Plumber hat?" or "Mom, I need my overalls." "why?" I asked. "So I can be Jake the plumber."
A little background for those of you who do not know. Jake the plumber is mentioned in the song "Second Hand Rose" that Alayna, Finoula and Evelyn sing for our Co-op. So in our last performance he had a cameo part walking accross the stage as 'Jake the Plumber'. Anyways, he feels that his performance and part is second to none in importance, and I know I'm not going to disagree!
He also felt compelled, we do not know why, to get up and walk accross the stage Friday night when the audience was all there. Luckily, the curtains hadn't opened yet. *sigh*
Thank you to Rachel for taking him on Saturday so that I could go about my business without having to stress about "Jake the Plumber" Making a suprise appearence in The Nutcracker. (:

Jake the Plumber in his dress rehearsal. With the hat but without the overalls.

Evelyn as a Merry Maid. She is next to Kelda the older ballerina and our friend.

Alayna as a wind-up doll. She is the red-cheeked doll on the far left.

Alayna bowing as a fairy attendant.

Gaining ground

We finally went over the 13 pound mark! As I mentioned in an earlier post Joseph and I are Not fans of the NG tube. For those who are unfamiliar this is the tube that they slide up your nose around the curve at the top and down to your throat, then you have to swallow it down, but not really because it stays in your throat and hangs out while the other end of it is in your stomach. This type of thing definitely has it's uses. Those are mostly for the short term because it can be very uncomfortable depending on the person and can cause scarring and/or oral aversion. Many times it hurts or tugs everytime you swallow. These tube are also considered more dangerous in the long term because they can become dislodged and end up in the lungs. Some people adjust quickly and life goes on. With Isabelle, her multiple sensitivity issues made us worried that she wouldn't. The only other option for putting food in and bypassing the effort of getting it down was a g-tube. This is a surgery where they put a small tube through your skin and into your stomach. On the outside it looks like a button with a blowup beachball type lid.

Our concern with this was that it is a surgery and Isabelle is showing signs of and is at high risk for developing cortisol insufficiency. If she had a borderline case and went through surgery without cortisol replacement she could have gone into shock. So we tried to talk to the doctors about it. One of them agreed with us and one of them didn't. We spent from July to November trying to get Izy to gain and keep the weight on, while trying to get someone to address this concern. Every time that she got sick (which was 2-3 weeks out of every month) she would lose the weight that she had gained while she was well. We kept bouncing between 12 and 13 pounds. We just didn't feel like it was time to do something yet.

Then Nov 5th we went to the endocrinologist's and told them our predicament again insisting that they do something or we would get a second opinion. They agreed that short term stress dosing for the surgery wouldn't do any harm and so said they would. Two days later she got sick and we felt strongly that we shouldn't let her loose the weight this time. So when she started to go down again we decided to get the NG tube (they can't put a gtube in when she's sick) for a short time. I thought it wouldn't be a problem, we have had many doctors ready to do it before. Her primary said to talk to the hospital and no department of the hospital would do it for us. I called back her primary and they spent 2 hours calling around only to call me back with 'they said they can't do it today, and the earliest they have available is Dec. 2nd.' Ummmm. No. Not helpful. So I got back on the phone and called everyone I knew that was connected with her care to try and find someone who was comfortable putting an NG tube down. In wracking my brain I thought what about the in-patient doctor who was ready to put in the NG tube back in July. Unfortunately the nurse called me back about an hour later and said that the earliest she could call me would be in two days because she was at a conference. I had about had it and I know she could hear the distress and tears in my voice. She was the most sympathetic person I had talked to all day. She could tell that I needed someone right then and asked if I would like to talk to Dr. Queen's colleague. I said yes and he called me about 15 minutes later after reviewing Izy's records. Yes, something definitely needed to be done and no he wasn't comfortable waiting until December. He called my primary and since the doctor wasn't in and the others weren't comfortable taking responsibility he recommended an in-patient stay to put the NG tube in and make sure she tolerated it.

Finally! Someone was going to help us. The funny thing was that after spending literally all day trying to get someone to help us- the doctor that came in to see us at 8 pm after reviewing her case said. "I'm sorry to say this, but I really think we need to put an NG tube in." Seriously!

She didn't react well to the NG tube. She kept swallowing and swallowing her eyes would get big because she couldn't get that something out of her throat. She didn't seem very interested in taking things by mouth although she tried. The next day we had a surgery consult and they scheduled us for surgery on Friday pending anesthesiologist approval. Long story short they approved and after 9 hours with out food and ten minutes in surgery and 1 and 1/2 hours in recovery we got our little girl back with an accessory. I can't explain what it is like to look at your little girl drugged and upset with oxygen in her nostrils.

My heart dropped, did I make the right decision? I knew I had, but seeing her like that was enough to break my heart. I clung as I have clung repeatedly in the past months to blessings and answers to prayers. I am so grateful that that day is over, that she is coming back to herself, gaining weight and moving onward. That in a nutshell is what makes me prefer the gtube. Yes it is more invasive in the short term, but she will probably need supplementation for at least a couple of years to catch up. So we've taken the aggravation pain and annoyance of the first few months to year and condensed them. Now we are done. She is growing and eating and we are happy.

Now I just have to get my milk supply up. Pressing forward.

Halloween fun

Halloween this year was fun. Despite the fact that we didn't go trick or treating so that we could try and avoid most of the germs and sugar that weakens our immune systems (yes we are going overboard). For our first time dressing up our family was the rainbow. Izy was yellow, Noah was Orange sun man, Evie was Pink (ballet pink she'll tell you), Alayna was purple, Joseph was green, I was Red and Hubby was Blue (which he had to talk Noah out of). We went to the church party coming late and leaving early on purpose, but we still had fun.
The highlight of halloween though was our family halloween pary. We made witch rings (Fruit loops), Eyeballs (cooked carrots with cut olives stuck to them by cheese), monster fingernails (pumpkin seeds), vampire fangs with blood to dip them in (triangular apple pieces dipped in strawberries mixed in yogurt), and dinner in a pumpkin. We ate snacks and played balloon volleyball over the island. Then we made slime from cornstarch and water with blue food-coloring. We played a game where we split into teams to see who could bring the slime across the table in our hands to a bowl on the other side fastest. The team that emptied their bowl first won. The girls won volleyball and the boys won the slime contest. Then after eating dinner we had some candy and watched The Littlest Vampire. We all had a lot of fun and I'm not sure about the kids, but I enjoyed it more then the years that we trick or treated and nothing else.
I will post pictures sometime, but our camera broke and I can't get the pictures off my cell right now. (:

Childhood games

The wonderful thing about childhood is freedom. Sometimes our kids don't think that they have this. After all they have chores, school, and parents that tell them what to do. Really, when you look at it objectively, I don't know it's that they have more free time, but the way that they use it is different-- O.K. they have more free time too (: but they use that free time with more abandon. They don't worry about wasting time, or being efficient, relaxing, or saving up strength. They have a freedom in their play that is beautiful to watch. A lack of pressure or worry that would be wonderful to emulate. That is why a child's laughter is so beautiful to us. It echos with joy and freedom. *Once they get past the "What should we do" phase of the day.*

We recently bought a trampoline and the kids have a lot of fun on it. They love to take turns bouncing high. We already have two girls whose backs hurt. So we are probably going to have to make visits to the chiropractor for them. All of the sudden the trampoline casts a lot more then I thought it would. ):

Joseph has a game that he has made up all the rules to. It is using a globe and they take turns conquering countries. I think maybe Risk is in order?

One of my greatest joys is that my children are such good friends with one another. They fight occasionally, but not very often and not very intense. They love each other and serve one another so beautifully. Alayna is almost as good as I am at getting Noah to do things, and Evelyn will sit for an hour entertaining Isabelle. They love to read to each other and play with each other and talk together. I want that closness to last into their teen years and through on up to when they are adults. What better thing is possible then close family friends?

Hospital stays

Sometimes this last week I had to take off my glasses. Then I squished my eyes shut took two deep breaths and opened them again. Nope. It didn't go away. The white bare walls, the white board that says Welcome to Henson Tower RN: Jai Lee. I sigh and lay my head back against the smooth vinyl chair. My eyes close of their own will. Then I'm awake and for the small second of time it takes before I open my eyes I've had a bad dream. But I open my eyes and it's back, not a dream at all. The vinyl tiled floor, the huge crib, and my sick little girl with wires and I.V. line sticking out of her.

The first night Izabelle was exhausted from the poking and prodding of all the nurses and doctors. We had been admitted for a "overnight stay" just to get IV fluids in her and get her re hydrated. She had blood taken for tests, three tries for the IV, deep suctioning through the nose, and a catheter to check urine content. She didn't sleep, just cried in exhaustion, too tired to sleep, too tired to eat. The I.V. was in one foot and the oxygen monitor was on the other. She kicked both feet vigorously, then she would give up and sleep, only to awake five minutes later and kick again. Two days later she succeeded. She had sweat and kicked enough and kicked the IV line out. Luckily by then we didn't need it, by then we should have been home, but the doctors wanted us to stay so that we could get a swallow study done faster. Out patient- 1-3 months. In Patient 1-2 days.

Even though we were admitted for dehydration, they had done an X-ray to check on her clinically diagnosed pneumonia. It was in her upper right lung and was therefore probably aspiration caused. Thus the swallow study.

Tuesday morning I make sure to time her feedings so that she will be hungry but not too hungry at 1:30. She sleeps all morning, I have to wake her to feed her, she is still recovering. At 11 am right before I am going to feed her the Transportation team shows up. We need to take her now or we might have to wait until tomorrow. So they put my sweet baby on a stretcher attach lead wires, buckle her in and wheel her out. She is OK and looks around at everything watching everything go by. When we get to the downtown hospital, she starts to fuss, by now it's been an hour past her time to eat, and she has been awake for longer then she has in a while. We transfer her into a blue chair leaning slightly backwards and I am told that They can't mix the barium in to my milk, they already have it ready as it's own "formula". Hmmm, this is going to be difficult. Izy, doesn't like bottles much, but if she tastes the milk in them she will usually try to get it out. I had been counting on this one familiar thing to help her. They had a normal bottle, but she won't suck on it, so they try a haberman feeder, where they can push it out into her mouth. She gives one weak suck then the chalky barium came out and she was more then a bit upset. She turns her head to get away from it, but she is tired and weak and they keep forcing her to look forward. They try to get her to suck, but she just doesn't want it. So they put some in her mouth. It flows down her throat as she weakly cries. It sits there and sits there. Finally she swallows. Penetration. I hear them say. Try the nectar consistency. Penetration. She isn't making a bolus in her mouth, she says, she needs to pull it together into one spot to swallow. But my little girl doesn't want it, she doesn't want to eat this strange chalky liquid they keep forcing down her throat. And without some effort at eating, some sucking and suction to help her it isn't happening. Later I realize what it reminds me of. It reminds me of trying to drink from a sports bottle without touching it with your lips. The water pools at the back of your throat and then you make a huge sometimes painful effort to swallow with out breathing it in.

I express that "this isn't a fair trial, she doesn't eat like that." Well the lady says, what side does she like to eat on? The Left I say. OK, lets lean her to that side. We talk about ways to make it closer to what she is used to. Finally I take the nipple shield and put it on my hand. I run the syringe under it and give it to her. Success! She is sucking. Something familiar she thinks. But then she tastes the chalk. Ugh, not in here too! And then she gives up. She tunes out the world, closes her eyes and does a very weak comfort suck. She doesn't want food, I can tell from the suck that she doesn't, but they are telling me. Mom, you need to give her some more she isn't getting any. So I give her some and I hear the rapid fire Penetration. Penetration. Aspiration! Stop! Try the Nectar thickened. It doesn't help. Nothing is going to make this little girl swallow right at this moment. As soon as they stop the test her eyes close and light snoring is heard. So the recommendation is a feeding tube with very limited-therapy-only-feeding by mouth for my sweet sick, exhausted, confused little girl who can't handle different.

After going over this in great detail for the doctors and reiterating that we don't feel the test was fair we were blessed immensely by an understanding doctor. She looked me in the eye and said- No one is going to tell you to stop feeding your baby. What you guys decide to do is up to you, we are all here to help you, but ultimately the choice is yours. I'm surprised I didn't float out of my seat so great was the weight that came off of my shoulders. Tears sprang to my eyes and I knew that the Lord had answered my prayer for a doctor that had the spirit. I had had several people tell me that many times doctors will report parents to DFS for not getting a feeding tube after a swallow study that showed aspiration. After she said that I was able to think more objectively. We told her that we would need to think about it.

After prayer Joseph and I both feel that she should get a G-tube when she is healthy enough for surgery. We think that if we give her the bulk of her nutrition over night then we can work with her on getting stronger muscles to eat during the day. Right now we have to give her the food, and we can't make her work for it or she will loose weight. It will also help when she is sick. I don't think she aspirates typically, but I do think she does when she is sick or tired. I don't know for sure that these are the only or even the best reasons, I only know that this is the decision that gives us peace. I know that our dear little girl is even dearer to our Father in Heaven and she is in His hands.

Dear Honorable Senators and Representatives

I write on behalf of the people of the United States of America. I write to try once again to get you to hear us. We wonder what your opinion is of us, why it is that no matter how many times we write or call to tell you we don’t want to give you anymore of our money you ignore us. No matter how many times we rise together to protest that this is not the direction we wish to take our country in, you turn a blind eye. ‘We know what you think’ you say. ‘We understand that we are talking about a lot of money especially to the common everyday man. You simply don’t understand, and can’t see from where you are how big this crisis is. We must act now we must do something. That is what you elected us for. If you could just see the whole picture.’ You say ‘then you would understand’.
I am reminded of other politicians who had similar thoughts. Bastiat in his essay The Law speaks of the great arrogance that was present in his day. The politicians and writers who felt that mankind must have the powerful hand of the legislator to prevent the downward spiral of humankind. There seems to be a dichotomy though. Here are Bastiat’s words on the hypocrisy of the legislator. “When it is time to vote, apparently the voter is not to be asked for any guarantee of his wisdom. His will and capacity to choose wisely are taken for granted. Can the people be mistaken? Are we not living in an age of enlightenment?. . . Are they not capable of judging for themselves? Do they not know what is best for themselves? Is there a class or a man who would be so bold as to set himself above the people, and judge and act for them? No, no, the people are and should be free. They desire to manage their own affairs, and they shall do so. But when the legislator is finally elected -- ah! then indeed does the tone of his speech undergo a radical change. The people are returned to passiveness, inertness, and unconsciousness; the legislator enters into omnipotence. Now it is for him to initiate, to direct, to propel, and to organize”

I think that we are not the ones that cannot see. Please stop for a moment and listen. Let us show you the whole picture. Let us help you to see and to understand why we Americans are against and appalled at what you are doing up in your ivory towers. The new mother who looks at her child and knows that because of her lack of power to stop it, this child will take home less of their pay then any generation before. The father out working on the car with his son who looks at him and wonders if a mechanics pay will ever be enough to sustain him now that taxes are so high. The single mom who takes out her few bills and adds up how many groceries it can buy knowing that she must add more and more to cover taxes. The small business owner who falls into bed exhausted at the end of the day because he no longer can afford to hire extra help. You see he is one of the rich elite class who works to support his family. The grandmother who has horded her pennies for years saving the rubber bands off of newspapers and carefully washing them so she wouldn’t have to dip into her slender savings to buy them. Can you see her? Do you see her wrinkled hands washing, her smile as she explains to her grandchildren how to be careful with their money and never go into debt? The wisdom of the ages past shines in her face. What is she going to do when inflation causes that little nest egg she has built up ever so carefully to be worth nothing? You can pay her bills with printed money, but can you ever give her back her independence, the joy and contentment that comes from a life of planning ahead? Do you see us? We are here. We are living and laughing and continuing strong in life, because that is what we do. When life slows down though and we have a minute we wonder 'What does the future hold? How can we ever get out from this mountain of debt? What happens if we can't?'

In 1610 in Virginia, some politicians decided that the free market system just wasn’t working. They took control and placed stringent limits on what could or couldn’t be done with “the common store.” In heart break and sorrow they finally realized that no matter how good things look on paper, no matter how hard you trample people to get your way, it doesn’t work. The only way to insure peace and prosperity is to give the people their freedom. They may fall sometimes, but the size of the human heart will amaze and surprise you. We will take care of one another. I think we can all agree that we don’t need a parental government. The government is there to protect our rights through force. Everything the government does is through force or the threat of force. George Washington rightly said “Government is not reason. It is not eloquence. Government is force; like fire it is a dangerous servant -- and a fearful master.”

We voted you in to represent the interests of the American people. We ask only that you look farther ahead then this month or this year. Look at what your actions will mean in the course of a hundred years. What will history books say about you, about our generation? That we took responsibility for our own problems? Thought out of the box and changed the nation for the good? Or will they say instead that we thought only of our own pleasure, that we in effect sold our children into slavery to pay for our own needs, our own wants. Let us rather be the generation like the founding generation. The generation that refused to balk from facing problems head on. The generation that gave their comfort, their security and even their lives to buy us this freedom and prosperity we enjoy. The generation who refused to put off their problems and compound them. Let us not leave a legacy of debt and slavery but prosperity and freedom to our children, grandchildren and great-grand children.

Sincerely,

An American Mother