Grace is still fighting with all her might...NEC is bad!

My sick baby, Grace. Scalp & arm IV in place. Repogle tube
sucking fluids out of tummy. Nasal cannula delivering
pressure and oxygen. Very large abdomen.

All she can do is sleep. No wake times yet as of Tuesday.

Please continue to pray for Gracie, as I know all of you have been.
Quick update: Still fighting with the NEC (Necrotizing Enterocolitus). The x-rays are getting a little better each day but this time it took a toll on her. No food has been going through her GI track for over 5 days now and she is letting everyone know she is hungry! Then she tires out and crashes back to sleep. She still has another 5 days, minimum, before they will start her again. No fortifier this time. She has clearly shown us that additives don't work with her system. It is just too immature and sensitive for anything other than breastmilk. Hmmm, think that is why it is best for baby?

Sleep Gracie, sleep. Antibiotics work, work, work.

 She currently is on two new antibiotics to hopefully zap this infection. Grace has lost 5 IV sites in the last couple of days now they need more. They tried to get 3 IV sites and 2 PIC lines in last night but her veins are just not holding up. They finally got one IV in her scalp this morning but it isn't flushing to easily. They will be trying to put a PIC line in her groin or inner thigh area today. She really needs two lines entering her body for all the fluids and medicines. Many of them are not compatible. She has been, weight wise, between 3.9-3.11 for over a week now. Seeing that most of her weight has been gained by IV fluids and blood transfusions in the past, I'm anticipating a weight gain this week. It won't be lean weight, which is what we aim for her to gain and she will be on more Lasix to take away her puffiness. Because of this, it is very hard to find any veins along with them rolling and collapsing. This reminds me of...me. I have very hard veins to find and then they roll and collapse or have the valves not working the way the nurses think they should. Bummer. I feel for Grace.

cloth diaper covering her face from exam
lights. Grace receiving oxygen. Poor feet poked
from blood tests and IV attemts.

After a night of very labored breathing, the
oxygen is her friend. Nurse is holding the container
which the Repogle empties into.

This is my friend...oxygen. Don't take it anywhere.

 She still has the Repogle tube down into her tummy to remove any air or secretions. When this was first put down into her stomach, they pulled out 14 cc's or ml's of slimy, half digested, clearly not a good mixture of old food. After a few more suction times, bright, neon green fluid came out. 5 cc's worth! This impressed the doctor and nurses so much that it was on display for about 8 hours. Not a good color, that is unless you are part alien, not from another country, but from clearly another world!

Two nurses getting her IV situated just right.

Oxygen was put back on today. They took it off last night but she just kept desating. She isn't needing to be stimulated to breathe anymore, most of the time, because the inflammation in her intestines is going down. It isn't pushing up into her lung cavity anymore. There is still traces of blood in her stools so she is still fighting this. She got a blood transfusion, again, two days ago. Please donate blood! Donate in Grace's name. She can't use it but someone else can! This saves anemic babies lives! She has used two different donor's blood as of now. After the 10th of October, if she needs more blood, it will be her third donor.

Her blood transfusion...her lifeline. Anemia set in yet again.

You know you have a sick baby when...
you see this many machines helping her.

Xrays are a common thing for Gracie now. She gets 2-4 a day. I think she'll be glowing when she makes it through this!
Monday night was the hardest for me, realizing that she was severely sick and waiting for antibiotics to kick in. I felt, for the first time, Grace's life was in danger more than ever. I really felt like she might not make it through this one. The doctor was pleased to people from our church come and give a blessing to her. She said, "Pray! Pray hard! Ask everyone to pray!" Coming from the doctor, that was comforting but also scary. Poor Gracie did everything she could to keep breathing but with all her intestines being so inflamed it pushed into her lung cavity so hard that it took everything Grace had to breathe. Thankfully Missy S. came and sat with me next to her all night. It was long, exhausting to see her work so hard and very stressful to keep touching and sometimes shaking her body vigorously to remind her to take a breath. Hugs from the doctor and nurses helped tremendously. The doctor stayed very late, like 2 a.m. watching her too and was back again at 8 a.m. for her xray results. We were all very concerned for her. She even said if I wanted her to be transported via Flight For Life to Seattle, she would. I asked her if she felt confident she could help Grace, she stated "yes" and if there was any doubt, she would fly her there. I feel Grace is in the best place, for now. If she perforates her intestines then she will be in Seattle very quickly.

Exam time

First time she would even move...it was for a pacifier.

Thank you to Tyson Manning and Brother Amparan for rushing to Grace's side and giving her a blessing for the sick late Monday night. She needed it fast and you were there for her. Thank you! You will be blessed for your service! Also, after a long night on Tuesday, I was blessed with having a great dinner delivered to our house and there was leftovers for me! How nice that was to have a warm, yummy lasagna meal waiting for me. Goodbye, cereal or sandwiches! :) Love you sisters! You are making such a difference in our lives!
I apologize to both viewers and Gracie for not keeping up with the blog for the past week. I will catch up but for now, I need to be with Grace in person. I know everyone agrees. I get to hold her for the first time, skin to skin, this week. She has been too sick to hold.

Time for her sizing pictures...she is getting
bigger!

The best part of Grace's day was being held by big sister, Emily.