Yippee!

January 11, 2009: I went up to the hospital this morning at 7:30 to feed Sophia and then head to church. She did really well - just tiny spit ups. I was especially surprised when I had to give her the multi-vitamins that she didn't start throwing up. Yay. After the hospital I went to church, then home to clean a bit, and then went to pick up my mom from the airport. We went to see Sophia til about 9:50 and she was doing great. We didn't get a chance to give her a bath and weigh her before we left, so we were on pins and needles wondering if she would gain weight. We called just after midnight to see if she had gained, but the nurse hadn't given her a bath yet. She reassured us that she thought Sophia had definitely gained weight. So we went to bed and decided we'd call again when we got up. I just called at 4:45 am and found out that Sophia has gained 25 grams. She weighs 2840 - 6lbs 4 oz! That means she's for sure coming home today!!! YAY!

Counting down....

January 10, 2009: Sophia still managed to lose weight last night even though she ate over 600 cc during the day. Crazy. At least she only lost 5 grams instead of another big loss like the previous night. I'm really nervous that she won't be ready to come home if she doesn't gain tonight and tomorrow night. Since she's been losing weight, they decided that she cannot go any longer than 3 hours between feeds. If she's sleeping, they need to wake her up and feed her. Anyway, Sophia ate well today - averaging about 90cc per feed (sometimes more). Her poor little bottom is really sore from pooping so much. She's got an army of cremes by her bedside. Hopefully they can find something that helps her. They are considering taking her off the erythromycin to see if that will help....since it's making her poop more frequently. They only want to take her off it though if she's getting diarrhea. (this is the medicine they put her on for motility, so she doesn't get constipated.)
So we just got back from the hospital and she gained weight! Hallelujah! She weighed 2815. That's just over 6 lbs 3oz and is up 60 grams from last night. PHEW. Now hopefully she will gain again tomorrow. Sophia's poor little bottom - she SCREAMED everytime we had to change her diaper and she definitely has diarrhea now. They are even using special wipes and Ilex cream (http://www.ilexpaste.com/about.shtml). They decided to take her off the erythromycin at some point today so I hope that will help.

It kEePS geTTiNG bEtteR aLL tHe TiME....

January 8, 2009: So I went to see Sophia this morning and found out that she is allowed to eat ad-lib on demand. That translates to: she can eat however much she likes, whenever she would like to. Hooray! We weren't even on that last time that we thought she was coming home. Awesome. This is a good sign. Now, we just need to make sure that she continues to eat well and keep it down...and gain weight all at the same time. When I fed her at 11:30 she took 55cc with one little spit up and wanted more, but it was her first feed over 35cc so I didn't want to push it. The next feed I nursed her for 15 mins and she didn't spit up at all. She went into a really, really deep sleep after that. Lol. She also got her IV out of her hand this morning. Finally, we're back to just having the leads on - no extra tubes or IVs. She took 80cc at 6pm, nursed at 9pm, and took 80cc at 11:30 pm, 3:30 am, and 6 am. Surprisingly her weight was down to 2760grams (6 lbs 1.5 oz), but April said not to be concerned - that if she keeps eating 80cc at each feed, that she'll start gaining it back. April also said the resident told her within a week Sophia should be able to come home. They'll be watching her weight now to make sure that she can gain weight without being on the added calories.








She was wide awake and ready to hang out.

Check out the haircut! Almost looks like a heart :)


















Don't worry, she's not reeeeeally tired yet.





















She loves her daddy.



















And I love her little piggies! So cute!
















This is what she thinks about her multi-vitamins with iron.
















Winding down.



















Hittin' the hay.

And there's her bed.









January 9, 2009: I went to see Sophia around noon today because our pod had an admission and I couldn't be in there while they were trying to get the new baby all set up. She took between 70 and 73cc for her first two feeds and then nursed for 13 minutes around 1pm. She spit up more today than she had spit up the last two days, so it makes me a little nervous. After I left at 5, Ruth fed her 110cc! Unbelievable. She said Sophia even wanted more than that. Sam and I went to see her from 7:30-8:30 and she was asleep the whole time. We had to leave at 8:30 to go meet one of Sam's friends for his birthday. After we got home from the dinner, I called the NICU to check on Sophia. She said she didn't wake up to eat until about 10 and took 80cc. She hasn't had her bath yet or been weighed, so I'm of course anxious to find out if she lost or gained weight.
But here's for the REALLY exciting news. I got to the hospital this morning and Ruth said that the resident said Sophia would most likely be going home on Monday. When I got out of the hospital around 5:15, I turned my phone back on and had a voicemail. I checked it and it was an automatic reminder that we had an appointment with our pediatrician on Tuesday, January 13 at 10:30 am!!! That means the discharge planner knows we're going home before that and so they already got Sophia's first appointment set up. Please pray that all continues to go well and Sophia can grow healthier and stronger!

Photographs

So beautiful! 1-6-09

The aftermath of trying to find a place for the IV. The other side of her head
isn't shaved quite as much as this side.

1-5-09 Poor thing :(

The awesome quilt that Kristin is making for her crib bedding.

The center field is even quilted!

1-4-09 Such a hard day. It was heart wrenching to see her like this.



The stationary I made (scrapbooking paper and embossed stamping.

All tied up - the sweet packaging I did for our primary nurses.

Daddy's putting the changing table together from Grandma.

January 7, 2009: Sophia's weight was surprisingly up last night to 2790 grams. It could have only gone up from the fluids obviously. All of her cultures have come back negative, so we can rule out that this was all caused by any kind of infection. Sophia was able to start eating again this morning just before 9:00. They started her on 20cc. Although she was thankful to be eating, she was like "ok, where's the rest now?!" After 2 feeds they bumped her up to 35cc and continued to decrease her fluids. After tonight she won't need to be on any of the antibiotics, so hopefully her IV will be out by tomorrow morning. Hurray.
Tonight Sophia was pretty fussy for her bath. It seems that she's gassy again already from eating. Her weight was up to 2825. Yay! She'll start gaining even more weight back tomorrow...if she keeps everything down. Later on today I'll upload some pictures from the last several days.

January 6, 2009: Today Sophia's xray shows that her bowel is completely normal. They are still holding off on feeding her though until tomorrow morning. Dr. Tiffany wants to wait 36 hours from the time the urine culture was taken so they can make sure it comes back as negative. Poor Sophia will have to keep hangin' in there. Our nurse Christy talked with the dietitian and lactation consultant also about Sophia's feeding changes. They suspect that all the changes that were made within 4 days (HMF calories, then changed to neosure calories, rice ceral thickener, then the Simply Thick thickener, etc) could have been just too much for her little body to handle - especially given her track record. They also would like me to ccut dairy out of my diet completely to see if perhaps she has an allergy to the cow milk protein (which can show up in breast milk). The reason they are even considering this is because she started having the major throw up around the time they started to add the neosure to her milk - which is made from cow milk. I highly doubt this is the cause, but I'm certainly willing to do anything to help Sophia. Sophia is still on the antibiotics and clear fluids.
When they took yesterday's xrays, they had to rotate Sophia from her back to her side and back again. While doing this, her IV in her head got pulled out, so they called in the IV team and were able to put an IV in her hand on the very first try. What a rough day for our tiny girl. Last night when we gave her a bath and weighed her, she had lost 30 grams - down to 2780. That translates to 6lbs 2oz. I suspect she'll probably have lost another ounce or so today.
Keep praying her her! We appreciate it!

A little bit brighter day

January 5, 2009: This morning I went to visit Sophia and got to speak with her actual attending. Dr. Tiffany was very polite and I could tell that he was definitely working hard on her case. Her blood levels were still the same as yesterday. Dr. Tiffany said that her 5am xray showed improvement from yesterday. They would do another xray around 5pm today and again tomorrow morning at 5. If those xrays showed improvement, then they would start her feeds again tomorrow. After he came back from reviewing the xrays with the radiologist, he thought that perhaps the bowel inflammation was caused by a urinary tract infection. They started Sophia on oxacillin, gentamicin, and ampicillin. They took blood cultures and a urine culture. A machine checks those samples every 5 minutes to see if bacteria is growing. If it spots something unusual, an alarm goes off and an actual person looks at the sample. Usually if nothing grows in the first 48 hrs, then nothing will grow. I really hope that this was what caused all these new issues. I also got to speak with her new resident - Dr. Cohen. Neither the attending or the resident seemed to have any answers as to WHY her throw up would be green all of a sudden. It hasn't been green for weeks. This is still unsettling to me. Maybe we can't always know the answers to everything, but I'm concerned. I can understand how the UTI could have caused the bowel to become inflamed, but I don't understand why that would cause her vomit to turn green again. So anyway, the resident said that if her 5pm xray showed improvement that they would most likely start feeding her tonight instead of waiting for tomorrow morning (like Dr. Tiffany had told me). Both the resident and attending said that she would start her feeds again on a fair amount - maybe like 30 cc. I'm so glad that last night's nurse was wrong. BUT then our primary nurse made the comment that it might be better to try her first few feeds with only like 10 cc to see if she can tolerate that amount without throwing up.
Sophia was stuck 9 times yesterday when they tried to get her IV started and I didn't know until today that both sides of her head got shaved :( Poor little girl.
Sam and I will be going back up tonight after shift change. I'll probably update tomorrow, but maybe even later tonight. Thanks for all the prayers!