Day 32 3.0 pounds--Sick little girl

This day was a tough, long, physically painful, emotionally exhausting journey for Gracie and me. She was showing many signs for a condition know in the NICU as Necrotizing Enterocolitis or NEC. Here is a great site for more information. http://preemies.about.com/od/preemiehealthproblems/f/nec.htm

Sick little Gracie...white stuff by her eye is an antibiotic for
her eye infection

When you have a micro-preemie in the NICU, every healthy day is all you live for. It is very difficult to plan any future as each day is so uncertain. Any little infection is very serious for these little ones because of lacking an immune system. A little cold or cough to us can send them into a serious battle for their lives. I'm so thankful for the team of doctors and nurses at Kadlec Hospital. They, with their expertise, were able to see early, yet very distinguishable signs of this horrible disease. Heavenly Fathers' hand has been seen in every area of Gracie's life. 


When I called in to see how Gracie's night went, instead of talking to her nurse, they said Doctor Z needed to talk to me. That was unsettling in and of itself. I've never talked to a doctor on the phone regarding Grace in the NICU. She said she had been sitting by Grace for a while and had ordered a slew of things to help her. Her belly was distended more than normal (she is my little frog belly baby) so I new if it was more than normal she must have been pretty big. She had visual belly loops meaning you could see her intestines bulging on her belly. The blood veins are also much more visual. 

The red light is her oxygen sensor and her little white blood
pressure cuff 

She was having quite a few Apnea and Brady events and Desatting more than normal (she is also known as a Desat baby but not the A's and B's). She was quite a bit more lethargic and not awake nearly as much as she has been. When I changed her diaper she just had floppy legs. That is not little Grace...she usually stretches.

Nasal Cannula for her air pressure to her lungs and oxygen.
Repogle tube in mouth for sucking out anything in her
stomach.

 She was more pale than normal. She had a positive result on a Guiac stool test. She was retaining fluid. She had green residuals when they pulled the milk out of her tummy to check for air and digestion. Doctor Z ordered 2 x-rays in the morning, one in the evening and one for Saturday morning. One came back suspicious. The next looked better but it was at a different angle. This isn't what you like to hear from a doctor "it looks suspicious or questionable". She ordered two anti-biotics for her intestines called Vancomycin and Claforan. They are continuing checking her stools for blood as that can mean there might be an early perforation of the bowel. She started Lasix which is a diuretic medication to keep her insides "dry" because she was retaining fluids. Her feeding tube was taken out of her nose, because her feeds were stopped, and now she has a new IV in her hand to administer her TPN (Total Parenteral Nutrition) and Lipids (fats).

Her IV in her tiny hand

 Another larger tube called a Repogle, replaced the feeding one, going into her mouth and down to her stomach which was hooked up to a low intermittent suction machine. This is done to keep all secretions out of her stomach and keep it dry. She will have hunger pangs. 

The Repogle tube in Grace's mouth for suctioning out her
stomach

She then received her second IV in her foot (after 2 attempts were made in her hand) for the antibiotics, Lasix, then later they flushed it and gave her a blood transfusion. This time she had a new donor as her blood from her first donor was left in Seattle at Swedish. They didn't have enough time and something else was wrong, so they just used new blood here. They had to draw my blood and hers to cross match for getting the right donor for her. She had to have a stiff "board" (even though it is soft, that is what they called it) put on her leg and foot area to keep the ankle from moving as that would kink off the IV tubing in her vein.

One foot has bandages from many blood tests and other foot
had the IV for her blood transfusion and anit-biotics

 This did happen and so her dear nurse detached the tubing and blood went all over that part of the bed, her leg, foot and diaper areas. It turned out that it was the machine having the problem, not the IV. Then Nurse Susan, after cleaning it up, was changing Grace's diaper because it also had blood on it and Grace decided to poop all over. Poor nurse, she had such a time with her. After new bedding, diaper and blood transfusion going, Grace was able to rest as did Nurse Susan. I think I'll have to get her a chocolate bar. :) Chocolate fixes all sorts of things...including blood and poop, right? We both love Nurse Susan.


Nurse Mary was her night nurse. 

Nurse Mary with Gracie in the evening, all of her tubes and
wires are wrapped up with her

We also had the privilege of having several visitors come by and make my day brighter. Hannah took the day off of work and stuck by my side, sometimes even with laughter. Even Brandon, her husband, came for dinner and stayed long into the night...like midnight. Katie, Hannah's friend, came to bless us with her presence too. And yes, yet another friend came, dear Missy S., and sat by my side with conversation and love. Cassandra came from our church but it was during a stressful, emotional time with IV's not working and holding Grace's leg while she received an IV in her leg. That was painful for Grace. I don't hear her cry barely at all...she is such a trooper...but this time, it was more than she could bear. So sorry, Cassandra, to have to turn away a visitor.
I let Grace rest all day until evening then I just had to hold her. She had gone through so much, she needed to feel "loving touches" instead of poking and prodding. It wasn't very long before she started gagging on the Repogle tube going down her throat. Poor baby.

I think I got everything...believe me it was a lot to handle all in a 15 hour period. Time will tell if everything works for Gracie. We should know over the next couple of days. 

Here are some pictures of poor Gracie...most people don't get to see things like this. She is fighting hard and is yes, still my hero. Fight Gracie, fight...life's worth it! Hang in there sweet little angel of mine!

Good night little Gracie...snuggle with bunny