Hanging In There

I found this photo on my camera when I got home from the hospital. I was told that Taylor had everyone dress up for dinner and eat with a table cloth and fine china and wine glasses. After dinner they played classical music and danced. It is Taylor's dream to have a ball with fancy dresses and tuxes. This photo reminds me of that old fashioned picture of the farmer and his wife with the pitch fork - classic. I am pleased to know they can hold down the fort with me gone. We are having a tough time getting back into the swing of things. Some of the children are having more trouble than others. To top it off I went and got my hair cut and colored and the lady took so long that I missed Taylor and Ian's awards at Keepers and Contenders. I was so frustrated. The cut is fine but shorter than I wanted and much blonder than I requested.
I slept for 5 hours in a row last night and it has made all the difference in the world. However, Libby lost another 1/2 ounce. I am not sure how she can be eating 30ml of fortified breast milk plus 4 ounces of breast milk and still not gain. We are checking out our other options as far as getting more calories in her. We desperately want to avoid the NG tube and another hospitalization.
We were able to go to church today and it was such a blessing to be welcomed back into the flock after being gone for what feels like forever. We are so excited to have finally found a place that we feel like we belong and that cares for the members in the magnitude that they do. I hope that I can in turn be a blessing to others when I am able to get my feet back under me.
I am going to sleep now because I only have 3 hours. Please continue to pray for clarity and for God's will.

I am so tired!

Seriously, I have not been this tired except immediately post partum. I am setting my alarm every 3 hours around the clock. We are supplementing with fortified breast milk, feeding the baby, and pumping. Between that, a little sleep and eating (like a horse) I don't have time for anything else.
I keep waiting for someone to tell me I am on hidden camera and they are doing a psychological study on sleep deprivation. Libby has gotten used to being in the ergo with me at all times and we are having a hard time breaking that habit.
I once told Taylor that when we do outside work the inside suffers and vice versa. She came in the other day and said,"Mom, remember when you said that about the inside suffering when we do outside work? Well, Grandma is able to do all of it, and nothing is suffering."
My mother in law is amazing. She is so gracious and willing to serve. She is doing everything for everyone around here. She dug out my flowerbeds and put new bark in after some major weeding. She has said that she doesn't know how I do it, well, I honestly don't know how she does it all so well.
My goal is to be as big a blessing to my daughters in law as she is to me!I really hope that she doesn't have to go home anytime soon. She ran an errand for me and said, she really liked the little town of Lynden. I of course, got really excited and told her what a wonderful place it is to live. Maybe we can talk her into moving closer?!

WE ARE GOING HOME!!

We got the great news this morning that we get to go home! For now we are going to try to maintain and improve without the NG tube.
I was reading Job this morning and it helped me to improve my outlook and attitude and I prayed for forgiveness about my pity party yesterday. I knew it was wrong but I did not care. Then I was so graciously rewarded with a release!! God is faithful and just and will see to all of our needs.
It was a bit frustrating that the doctor said to make sure to feed her EVERY three hours around the clock until we get her weight up and so continued improvement. I do feed her every 3 and have for her whole life, except when she started sleeping through the night. Then I praised God that I got to sleep. I guess we are back to no sleep for awhile.
As I write my mother in law is on her way to my house to help for a few days and Sean will be gone for the rest of the week for work. Life never slows down but I love my life.
Off to feed, supplement, pump then GO HOME!!

Birthday Continued

I really enjoyed seeing my family today. It seems like the children have all grown so much in the last week. They all looked beautiful, the boys all had on ties and button up shirts and the girls were in beautiful dresses and clean and neat. It ended up being a very warm day so we were able to enjoy the out door play area. which, by the way is located right next to the inpatient psyciatric ward, Hmmmm??
It was really difficult for me to utilize all the time and spend time with each child in such a short time. I was already really raw emotionally and pretty spent from crying then I just cried harder when they left. My mom came to the rescue with a rootbeer shake from Burgermaster. Other than that I really did not feel like eating.
Rebecca, a blog reader, stopped by today with the most encouraging note. I was disappointed that I missed meeting her and hope that someday I will, only under better circumstances.
Sean's dad, his 3 sisters, his dad's wife, and a fiancee of 1 of his sisters all joined us at the play area, it was lovely to see them and so sweet of them to bring an iced vanilla latte, and cupcakes.
I wish that I felt more like celebrating as I had so many wonderful wishes and feel so loved and supported but I was more in the mood for a pity party. I know and am holding fast to the promise that God does not give us more than we can handle and a spirit of fear is not from Him.
I have not gotten more than an hour and a half of sleep at any given time so I am off for a quick sleep before the next feeding at 11:15. God Bless

Happy Birthday to me.

OK so it isn't exactly a Happy Birthday but I don't want to complain. The doctor came in the AM and informed us that no, we do not get to go home. He was very compassionate and even remembered to wish me a happy birthday. It looks like the NG tube is inevitable. instead of the expected 70g of weight gain Libby lost 90g that is a negative 160!! I have been feeding her every hours and using fortified breast milk that is high calorie and she is still not gaining! I am very discouraged.
Our wonderful nurse, Amanda brought me a delicious chocolate mousse pie and her and several other nurses sang me happy birthday.
I am waiting for Sean and the Children to come and visit and have a picnic. I miss them all terribly.
I had a killer migraine last night and could not get aspirin to save my life. Fortunately my father in law and his wife came for a visit and I was able to take some vicoden.
My sister in law, Nicole came and kept us company for a while. I really enjoyed our time together and a chance to really talk, which is difficult to come by.
My headache still persists but hopefully having my own pillows will help. I know the 'bed' doesn't do anything for me. Also, I am finding it very difficult to feel like I am getting any exercise. Well, I need to go change a diaper and put a sweet little Libby down for a nap. I will post later and let you know the plan but for now, We are still here.

Update.

We have been at Children's for 5 days now. It seems like an eternity. Libby is such a sweet happy baby, she is a joy to be with and loves to smile at everyone, especially the doctors, and little boys. I think she really misses her brothers and sisters.
I feel so very blessed with the generosity that is being poured on our family right now. I know it is especially hard on Sean. Today when I was trying to give him an update on the phone I could hardly get an word in edge wise. I heard, "Whose helmet is in the bathroom? Go put it away." "I know I did not brush some body's teeth, whose are not brushed?" "Don't touch that" "Pick it up." "Clear the table." "Clear the table." "Clear the table."
I won't tell you whose job is table this week but I bet you could guess.
I was exasperated today because we decided to try fortifying the breast milk with a high calorie formula. That is so that she won't have to consume as much fluid ounces to get the calories that she needs. But after rounds and discussion with the OT/PT and the Dietitian it literally took 9 hours to get the orders written so that I could get the fortification! That is 3 feedings that could have occurred with the supplement. That is 9 hours sooner I could have possibly been sent home. UGH
Liberty's intake was averaging 60ml per feeding when we were admitted and today they were up to an average of 110ml per feed. The goal is 160ml each time. I am fervently praying that they will let us go home and continue what we are doing and slowly increasing her intake.
The doctor's are really wanting to put a NG tube (Nasal-Gastric) which goes in her nose and to her stomach. I am desperately trying to avoid that. I feel like it would not teach her to eat, and she would get even lazier as far as recognizing her hunger cues (there would not be any) and it would be harder to maintain at home. Not to mention long term effects on her desire to eat. She enjoys nursing (a lot) but she just is not very effective at it, and she is too polite to complain when she does not get enough.
I have been pumping and taking Fenugreek and Blessed Thistle so my milk production and supply is definitely not the issue.
Again, we do not have definite answers and do not even have a projection of when we get to go home. Fortunately, I have learned my way around the hospital and discovered the beautiful path to walk on when I can.

I just want to go home!

We are on day 4 with no end in sight right now. I am extremely tired and just want answers. We have answers to what is NOT causing the growth/weight issues. It is not: Celiac, Liver, Heart, Caloric Demands, Cystic Fibrosis, Breast Milk Quality, or Absorption.
We are currently feeding, weighing, supplementing and pumping every 3 hours, which rolls around pretty quick when I am trying to eat, drink, sleep, and occasionally shower or go potty.
I apologize that I am not able to answer the questions or the phone, and please, limit the calls to Sean as he is pretty busy managing the house right now. Feel free to leave a comment and I will answer as time permits. I love to hear the encouragement and appreciate the prayers.
Liberty's intake and output is up unfortunately so is her spit up and her weight continues to go down.
I am hanging in there but would appreciate prayers for my family for peace and joy to be in abundance. For Libby to get better, and to be home for my birthday on Sunday.