time flies

I don't know where all the time goes, but I feel like I've been so busy and it's hard to get anything done that I want to get done. When I'm at home with Sophia, I feed her, then I burp her, then I have to hold her upright for a good half hour so she doesn't throw up, and by the time I get her put down it's almost time to feed her again. I wish I could clean the house more, get some dishes done, actually cook some meals, maybe shower and dry my hair for once. I've been living with my hair pulled back and in a pathetic array of tshirts and sweatpants. I seldom get a chance to leave the house. Last night I finally uploaded pictures of Sophia to facebook...I hadn't posted any new pictures in over 2 weeks. Sorry!

Sophia went to the pediatric surgeon on Tuesday. She weighs 7lbs 7oz and he said her belly looks good. His only concern was that her tummy was especially soft where her belly button is. There's not really muscle behind it. She is more susceptible to getting a hernia there. Anyway, we don't need to go back to see Dr. Kelly again until Sophia's one year old. While I was at CHKD, I visited with two of our primaries - Christy and Nat. It was sooo good to see them! I think I'm gonna try to stop in one night next week to see April since she works nights usually. My mom wants us to get some more "bow glue" from April so Sophia can wear bows again lol.

Wednesday it was beautifully warm out. It was so nice that Kristin, Tyler, Connor, and Sophia and myself went for a walk on the beach. I put Sophia in her sling and she slept the whole time. It felt great to be outside and getting exercise. I put Sophia in her sling for a little bit today too so I could tidy up around the house....all I got done was some laundry sorting and putting away clean dishes.

It's amazing how much Sophia is changing already. She's very alert and yesterday she was talking to me quite a bit - little coo's that just melt your heart! Her face is finally starting to get chubby and her little legs are filling out. I love her little fingers and toes. I could kiss her all day. I love when she's laying on her back and you give her little kisses down by her neck. She smiles and just stares at you :)

Today we went to the pediatrician for her 2 month shots and weight check up. She now weighs 7lbs 11oz and is 21.5" long! I can't believe the rate at which she's growing. I am so proud for her. She fits into newborn clothes like she's supposed to...only took a couple months lol. She wasn't too thrilled about the shots she had to get. Poor little girl. She won't have to get any more shots until she's 4 months old. We go back to the pediatrician in another month to check up on her weight again.

2 months today

Sophia is 2 months old today! Where has the time gone!?

So Tuesday we were SUPPOSED to get 3-5" of snow! ...and we didn't. But, southerners are snow-fearing people and even just the possibility of snow prompted the pediatric surgeon's office to be closed. Our appointment was cancelled that day and it's rescheduled for next week Tuesday. How pathetic...we never even got any snow.

Sophia's appointment with the pediatrician went really well today. She got her shot for Hepatitis B. I cannot believe she gained 11oz in 8 days! She now weighs 7lbs 3oz and is 20" long. I was so worried that she hasn't been eating enough, but now I feel a little bit better knowing that she gained that much weight. As for her reflux issues - they are putting her back on the Protonix (what she was on in the hospital). This drug requires pre-authorization, so while we're waiting for that, I am supposed to double her prilosec (give her .75mL/twice a day). I really hope this helps because she looks like she's in a lot of pain when she spits up or even just burps sometimes.

Week One

We survived Sophia's first week home! ...with the help of my mom. She's been great - hanging out with Sophia for a little bit in the morning so I can get a couple hours of uninterrupted sleep. It was great to have extra hands around or someone to make sure the dishes didn't get piled up. I'm sure going to miss having her around to help me out. I know my mom is really going to be sad to leave Sophia. :( Wednesday will be my real test - first day of having Sophia all by myself. Sam will be at work and I'll have the sole responsibility of taking care of Sophia.

Sophia had a couple rough feeds where she threw up quite a bit, but her latest development has been this struggle when she bears down. Poor little thing looks like she's in pain and even cries and winces. I'll ask the pediatric surgeon tomorrow at our appointment. I sure hope that everything is ok. She's still stooling fine, eating fine, doesn't have diaper rash, etc.

I'll update ya tomorrow or Wednesday about the appointment with the pediatric surgeon.

Sophia's Homecoming

Sophia came home from the hospital on Monday night, January 12, 2009. She spent 51 days in the NICU at CHKD. It was a bittersweet departure. I was glad that she was healthy enough to come home, but at the same time I will miss our primaries - Christy, Nat, and April - and the peace of mind knowing that someone was always there who knew exactly what to do. Sam and I got home at about 10:00 that night. We came home to pink balloons tied to our door with a big sign that said "Welcome Home Sophia." Sam's parents were responsible for that :) It was time to feed her, change her, and hit the sack. She didn't sleep much that first night, which means I didn't either. The second night went a little bit better - in terms of sleep. Last night was a stressful one for me though. Sophia didn't eat very well at 11:30 and she seemed to throw up a lot more than she had been. Since then, she's only had one good feeding. I'm starting to get very nervous and worried. She's not eating very much at a time, she's spitting up more, and she seems to be fussy. I really hope that everything is still ok. She's still having plenty of wet and dirty diapers, but I still can't dismiss the spitting up and the decreased desire to eat a lot. She seems very uncomfortable when she spits up - like it's really burning her throat. If it continues much longer I'll probably call someone and see what they think - if there's anything I can try, symptoms to look for, etc. :(
Sophia had her first appointment with the pediatrician Wednesday. They weighed her and she is up to 6lbs 8oz! She's also 19.25" long. Sophia threw up all down my shirt while we were there. Lol. Oh well, I can't blame her - she had her multi-vits right before we left for the appointment. We go back next Thursday to check in on her weight and probably give her some shots.

Enjoy the pictures! Saying goodbye to our primary, Nat! (on her last day before Sophia went home - 1-11-09)


The day Sophia got to come home - one last visit in the hospital.

Those socks look like legwarmers....ready for some aerobics!

So stinkin' adorable in an outfit that April got her.

Gettin' ready to head home.

All bundled up to go outside for the first time.

Big cousin Tyler's first time seeing Sophia.

Connor's first time holding her.

Grandma with all her grandchildren.

Our first visit to the pediatrician.

Pediatrician's office

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!

So hard...

January 4, 2009: Sam and I went to see Sophia around 5:30 tonight and it was so unbelievably hard. They had to shave part of her head to put the IV in because they couldn't get it started anywhere else. The nurse said her blood levels were really, really low and that's why it was so difficult to get the IV in place. She told us that Sophia fought and cried the entire time. That was heart wrenching to hear. It's so hard to know that she is feeling miserable - no food, IV in her head, and we didn't get to hold her, or even touch her. Today was the hardest day for me out of the entire time she's been in the hospital.
Tomorrow Sophia will get a new resident and attending. There are so many questions to be asked and hopefully answered. What caused her to start throwing up green again? Why did her blood level drop so drastically from her last lab on Thursday? Is this something that can happen again later after she gets home? What is the plan of action for her care? When she gets to start eating again, what amount will she start at? (she was at 65cc and the nurse tonight said she thought they'd probably only start her off at 10-15cc) Will she need a blood transfusion? If part of her bowel is supposedly not working, then how is she still having bowel movements?
I just feel so unbelievably stressed, worried, sad, and anxious. It hurts to know that I can only stand by and watch. I just wish I could make her better, or comfort her at the very least. She's a little fighter and I hope she can really bounce back from this. I pray that the doctors tomorrow will be able to shed some light on the situation and help to comfort Sam and myself. Everyone, please keep our family in your prayers, but mostly pray for Sophia - that she can be healed quickly.

FYI...

For all of you who knew that Sophia might be coming home today, just wanted to let you know that she didn't break out yet. Early this morning she started throwing up a lot and it was turning light greenish. Soo, they took her off her feeds completely for at least today. She's not getting any nutritional suppliment - just clear fluids. They put an IV in her head because they had a lot of trouble getting one in. I guess it took them about an hour. They xrayed her belly this morning and said it looked like part of her bowel wasn't moving/working - hopefully she just needs a little time to get it going. I'm very upset and worried so please keep Sophia in your prayers. I'll try to keep this updated for the time being and let you know how she's doing.

Sophia Updates: 1/1 - 1/3

January 1, 2009: Sophia's weight went back up to 2810 grams. The scab on her belly button has fallen off completely and now we can see there's still one stitch that hasn't dissolved yet. Unfortunately she threw up quite a bit at her 8:00 feeding. Maybe her Protonix medicine hasn't kicked in yet. They are no longer using the HMF to add calories to her milk. Apparently she's older and needs to use Similac neo-sure formula.

January 2, 2009: Well, she threw up over night and so they've made some changes. I won't be able to breast feed for a while. They are trying something new - thickening her milk. They started by adding a little bit of rice cereal to her milk to thicken it, but apparently the breast milk digests the rice cereal pretty quickly. So, they've changed to "Simply Thick" milk thickener. April fed her at her 8:00 feed and said she only had one small spit up. Sam fed her at 11:30 and she didn't have ANY spit ups! I hope this milk thickener works. Soooo, she's getting the Similac and thickener in her milk and she eats about 2oz every 3 hours. April also said the Protonix can take a week or two to start working. That means Sophia will go home on Protonix, arithromycin, multi-vitamins with iron, simethicone (gas med), and then with her formula and milk thickener. That's a lot of crap to remember and keep straight.
We still plan on rooming in tonight, so I hope that goes well. The actual doctor even came in today and told us that it looks like she might be able to come home next week if she keeps her milk down and her weight starts going up again. yay!!!! Sophia gained 40 grams today!

January 3, 2009: The "sleepover" went as I had figured. No sleep. Lol. Sophia was really, really gassy. We're talking like teenage boy farts - so loud, so stinky. Man, oh man. I wonder if part of it has to do with them adding formula to her milk. She has never been as gassy as she was last night. Sam got about an hour of sleep while I was up and I probably got a couple minutes of sleep. The pull out chairs we slept on were rock hard and Sophia was being so fussy that we couldn't really fall asleep. We came home and slept for almost 4 hours straight. We had planned to stay at the hospital til 7:30 this morning when shift change was over - because our favorite nurse April was supposed to be working. However, we asked our nurse from overnight if April was working the morning shift or night shift and she told us that April had off today...so we just went home. Well this nurse was consistently clueless during the night, and continued her streak when she told us April wasn't working. Arg. She was in fact working. April called me at about 2:00 this afternoon to ask if we were coming back before her shift was over. She said a little birdy put it in her ear that Sophia would be coming home TOMORROW! YAY! She said we needed to get all her prescriptions filled tonight so that there weren't any hiccups tomorrow if Sophia was in fact being discharged. I feel like we have a million and one things to try to get done before tomorrow. We need to clean the house up more so it's not so chaotic after we bring her home, we need to put her letters up on the nursery wall, install the car seat into the car, and I have some little gifts that I wanted to make for our 3 primary nurses. I planned to make them some cards (doing some stamping and embossing like I did for our wedding invitations). I bought the cards and materials today, so hopefully I can get them all done in time to take with us to the hospital tomorrow morning! We are also giving them a gift card to Borjo, our favorite coffee house in Norfolk. I can't believe the day is finally here! ...maybe :)

Sophia Updates: December 26, 2008 - January 1, 2009

December 26, 2008: Mark and Kristin went up to see Sophia this morning. The nurse took off her oxymeter (measures the oxygen that is getting all the way out to Sophia's feet). Today I started trying to breastfeed. Sophia didn't really get what was going on and decided that it was a nice place to take a nap. When she's getting a bottle, she's getting 39cc of milk now. She weighs almost 6 lbs 6oz! She's starting to really pork up.

December 27, 2008: Breastfeeding went much more smoothly today. The nurse expected her to be off the TPN and intralipids tonight, but she wasn't. She weighs 6 lbs 7oz (2920 grams). When we were giving the bath, Sophia was kicking around and jerked on her PICC line a little bit. Blood got into it and the nurse had to flush it. Her umbilical cord scab fell off today!

December 28, 2008: We came in this morning and Christy said that some blood had gotten onto Sophia's blankets from her PICC line. She didn't really ever explain how it got on there though. Christy wants me to come in all day tomorrow and breastfeed so that we can see how Sophia does. That's going to be a LONG day of sitting at the hospital, but I'll do whatever it takes. It'll be good practice for both Sophia and me. At her 8 pm feed, Sophia threw up a ton. She kept wanting to eat after she threw up, but then she'd just throw up more. I'm a little nervous about trying to breastfeed her all day tomorrow after that episode. Tonight she weighed 2900 - down 20 grams from yesterday.

December 29, 2008: Today I went to the hospital for 9 hours straight. I nursed for 3 feedings in a row. Sophia did alright - still throwing up though and it's hard to tell if she's getting enough food. I talked to our nurse, April, about the blood on the blankets and she said that Christy (another one of our primaries) told her all about it. Basically something wasn't screwed on tight for her PICC line and so air was getting inside and creating a back flow of blood...and it just leaked out all over. Right away I knew who was responsible for this. Two nights ago our nurse Antoinette had to unscrew something to flush the PICC line...she must not have gotten it screwed back in tightly. I was sooooo mad. Sophia lost quite a bit of blood and we're lucky she didn't need to have a blood transfusion or anything like that.
Sam and I went back up to the hospital at night and Sophia did much better for her 8:00 feeding. However, she was fussy tonight and her weight was down to 2810 grams. That's not good. That makes me really worried. I'm worried that they'll tell me to stop breastfeeding so that they can monitor exactly how much food she's getting. I'm also stressed because I don't know why she's throwing up or what to do about it. What happens if she's throwing up like this after we get her home? Sophia has been started on multivitamins with iron. It smells horrible and I'm sure it tastes even worse. She seems to be throwing up after she gets them.

December 30, 2008: Sophia is up to 53cc now. I came in and breastfed for the 11:00 and 2:00 feeds, then went home at about 4:00. She didn't seem to throw up quite as much as she had been. She is now on Simethicone (gas medicine). Perhaps this will help her be a little less fussy as she eats. Since she's been losing weight, they also decided to put HMF in her milk when she gets a bottle. HMF is human milk fortifier and it's just a powder they put in. It adds 24 calories per ounce of milk that she gets. Her clear fluids are down to a rate of 1.2 mL/hour. She may get her PICC out tomorrow and maybe will get some meds for reflux. Her weight tonight was 2800...another loss of 10 grams.

December 31, 2008: Exciting news today! Sophia's PICC line came out. Hooray! She no longer is receiving anything except oral meds. She also is on ad-lib feeds. That means every three hours she can eat as much as she wants - up to 65cc. Sophia did well with her feeds today and her weight went back up another 10 grams. At least we're moving in the right direction again! We brought her car seat in tonight. Sophia has to sit in her car seat for twice as long as it takes us to drive her home from the hospital. They do this to ensure that her airway can stay open that long while she sits in the car seat.

January 1, 2009: Happy New Year! Sophia passed the car seat test. Sophia now has a prescription for Protonix - a reflux medicine. Hopefully this will help her keep her food down and start packing her weight back on. Tomorrow night Sam and I will be "rooming in." We get to stay in a small room in the NICU and take care of Sophia from 8pm to 8am. We do all the feeds, give all the medicine, and the nurses only come in if her alarms go off or if we page them for help. This will be our first real trial at taking care of her! :) We're starting to really get excited that we could be bringing her home this weekend - but I'm not going to hold my breath. I don't want to be disappointed.