One Step Forward, Hopefully Zero Steps Back

Today was a pretty good day. Some of Zed's family (Rod, Kelly, Codie, and Kelson) came for a visit. It's always nice seeing family! We got to go see Wendy, then we went downtown and ate at the Hard Rock; then we went back to the hospital to see the baby. After going to the Ronald McDonald House to rest a while, Zed and I headed over to their hotel and we hung out in the bar/restaurant and watched the Georgia game. Once the game was over we all had dinner.

It was a pretty good day for Wendy as well. Not only did she get to spoiled by visiting family, she also got a little bit of Pedialite through her G tube. Only 6mL at a time (which isnt much considering she was getting 40mL of milk/formula at every feeding) but it's a start. Hopefully it will continue to heal and not leak so my baby can come home! All I can do is hope and pray. I can't speed up the process of getting her home; I can only try to stay positive.

As for me, I made a pretty big decision today. I made it 8 weeks and I have decided to stop pumping. My body isn't responding as well to the pump and I was having to pump every 2-3 hours to keepy my supply up. And that was ridiculously hard considering we are constantly back and forth from our house in Fort Campbell, to the hospital, to th RMH. Plus I used to pump in Wendy's room some, but she's sharing a room with another baby again and I don't feel comfortable pumping there now, and I'm not going to waste my time at the hospital in a lactation room, I'm going to spend that time with my baby. Luckily I have a freezer full of milk at home so between my supply at the house and hospital, I have enough for about 60 days (and that's if she goes back on full feeds immediately). I'm actually proud of myself. Most mothers with babies in the nicu only last about 2 weeks exclusively pumping.

My Preemie Baby

My sweet little angel turned 5 weeks old yesterday. It's amazing how fast the time has gone by. It's also amazing how much she has grown. She weighs 4lbs 12oz now! What a chunky monkey! For a normal baby, gaining 13oz in 5 weeks isn't astounding, but for Wendy it definitely is. Especially since they said they didn't know how much or fast she would grow, not only because of her being a preemie, but also because of her chromosome anomaly. I'm just amazed by her development (even though the doctors haven't mentioned her development being great, as a mom, from what I've read, am proud). No, she still can't take a bottle. BUT she is starting to try to hold her head up, which is the same thing a normal month old baby should be doing! That's amazing because you should measure a preemie's development by their adjusted age, not chronological age, and Wendy's adjusted age is below zero because she still isn't supposed to be born for another week. The doctor's haven't said anything different, we're still just waiting for surgery. Hopefully they will set a date tomorrow.

Not Long Now.. At Least I Hope

I've been waiting on an update from Wendy's medical team before I updated her blog. Well today we finally had a consult with her doctors. Next week she should be having a g tube put in. As long as everything goes okay she will be able to come home 4 or so days later. Tomorrow she willhave an echo done to check her heart again. She has a murmur and they want to see if the vein ever closed up. Also, an ENT will be looking at her airway to make sure she can breathe okay- because when she tries to suck on anything it sounds like she's gasping for breath. Finally, we got the MRI results. Her brain is not normal. It's too small and not as wrinkled as a normal brain. We don't exactly know what that will mean, but it certainly shows why she doesn't understand the suck swallow reflex right now, however the doctor said she can learn to suck and swallow. Her MRI results doesn't necessarily mean she will have severe mental delays, but of course it is possible. If her brain isn't growing by 6 months of age, then the doctor said we should worry. As of now, it's still simply wait and see. Right this moment, I'm just hoping her surgery goes well and she can make it home soon.

Fussy Little Baby!

Today was the first day I have seen little Wendy be fussy and not content. Usually she just likes to look around and sleep. Today though, she would be fine one minute, screaming the next. I held her for two hours during her feeding trying to get her to go to sleep, but she wasn't having any part of that. I read her two books and rocked her. Finally, after my arm went to sleep, so did she. Zed went to see her not long after I left and he said she was crying and ill the whole time he was there too. Hopefully she will get some good rest tonight and have a better day tomorrow.

Wendy is growing now too! She's 4lbs 1oz, which is 2oz more than what she weighed when she was born. By the time we take her home she will probably be 5-6lbs. She is actually filling out her preemie size clothes nicely.

The nurses are still having problems with her colostomy bag. Zed said the doctors had mentioned her having surgery again because her stoma isn't high enough and that's why her bag constantly comes off. I hope that if they have to do that they can do it the same time they put in her g-tube that way she isn't put under anesthesia twice. I hate seeing her on a ventilator.

November, Already

It's hard to believe it's November already. Only 18 days away from my due date. And Wendy is almost a month old!

Zed and I just talked to the doctor. One of the problems Wendy was having when she was admitted to the nicu was her right kidney was swollen. At the time they didn't know why but today they did a test and it showed that her urine has a bit of backflow from her bladder to her right kidney. It's only a grade 1 so nothing too severe. She will have to continue taking Amoxicillin and will be treated as an outpatient with a urologist.

Also, it's almost guarantee they will put a g tube in. That surgery will most likely be done around Thanksgiving so we can expect to be home around the beginning of December. One more month and our little angel should be home.

The Beginning Is Always The Hardest

I meant to post this a week or so ago, but honestly just forgot. Zed and I had ordered take out from PF Changs and we both got a fortune cookie. I'm not a superstitious one (I've got black birds tattooed on my body, haha!) so I usually don't even pay much attention to what the fortune says, I just like the way the cookie tastes! But this fortune caught my eye. It said "Don't give up; the beginning is always the hardest". On the back, my word in Chinese was "milk". This fortune hit home in so many different ways. For one I'd been having problems with pumping. My milk supply had went from about 500mL a day to 240mL. So I was having to pump constantly, every 2 hours trying to build my supply back up. For another, it's simply hard having a sick baby in the nicu. But rest assured, it will be so worth it once she's home!

Now for a more recent update. My milk supply has went back up to about 350-400mL a day. And I'm happy with that. Wendy only eats 33mL every 3 hours and part of that is formula. So I'm making enough to feed her plus I'm able to freeze a bit too. As for Wendy, she's doing okay. Her bag is still refusing to stay on, so yesterday they just put a wafer around her stoma and they're putting gauze over it and tucking it in her diaper. Her poor skin was getting raw from them having to change it every few hours. She's been spitting up a bit too. It makes me nervous because it comes out of her mouth and nose, then she's gasping for breath. They haven't tried to bottle feed her recently because she gets choked. Zed said they mentioned a consult with surgery next week about a g-tube for feedings. I'm not sure why we're doing the consult though until she can get the suck/swallow test done, which she can't do until she can take 20-30mL from a bottle and right now she's only been taking 8 (at the most, it's usually more like 2-4mL). Depending on how Wendy does with food will determine when it will be safe for her to come home. It'll probably be the beginning of December because they said they wouldn't push the bottle feeding until after her due date. If she's taking half her feedings from a bottle then we will go home with a tube through her nose for feeding, if not she'll have another surgery to place a g-tube. Either way, I know she will eventually be fine. I have faith. And I know Wendy is a tough one. I just pray that she will begin to improve. We are anxious to have her home, but ultimately it's her safety that's our main concern.

Small Town Life

A lot of people complain about living in a small town. I used to be one of those people. But now, I can't wait to take sweet little Wendy back to Elberton. Yes, everyone always knows your business, but when you really need something, the people will get behind you and do what they can to help. Having a sick baby has proved that. I've had so many people give me well wishes and ask me what I need, even though we are 400 miles away in Nashville right now. We even had someone anonymously send us cash to help with food since we are staying in a hotel right now; the card was simply signed friends in Christ. I'm really glad we are stationed at Fort Campbell right now because Wendy is getting great care at Vanderbilt, but I definitely miss my little hometown. :)

One Step Forward, Two Steps Back

The worst part about having a preemie with a chromosome abnormality is that things never seem stable. Wendy was able to maintain her body temp for a few days then her heat lamp had to be turned back on, and now today it's off again. Yesterday they said I couldn't try to breast or bottle feed and now today I can. Yesterday Wendy had a bit of a rough day, spitting up constantly, however I think it's either the vitamins they started her on or the Amoxicillin (because I'm allergic to that too) that's causing her tummy to be upset. Speech said yesterday they think she may have severe reflux but today she took 8mL for the speech therapist fine. The doctor still ordered a suck/swallow test for next week where they'll look and see if/how she is swallowing in an xray. Another problem is she's not growing as much as they'd like. I'm hoping things will even out soon so she will be closer to coming home. For now it's still just one day at a time.

Higher Dose of Glyburide

Well ever since I started taking medicine for the gestational diabetes my blood sugar has been even higher. It really blows my mind that the day they checked my blood sugar and I was eating a normal diet, my blood sugar was under 120 after every meal- even though I had orange juice for breakfast and sweet tea and cherry cobbler for lunch. Now that I'm on this restricted diet it has gotten worse.. and it continuing to get worse with the Glyburide. One thing I am looking forward to after this pregnancy, chocolate and coke! And hopefully no more diabetes.

A Turn for the Worse

My day started off fine- but soon after going on the monitor for the second time today they realized my contractions were stronger and my uterus was much more irritable than usual. The doctor came in and decided to give me a shot of Terbutaline to stop the contractions and he upped my Procardia again. They're having to monitor my blood pressure because the last time I was on a higher dose of Procardia my blood pressure dropped to 80/30. So right now I'm not feeling too hot- I'm shaky and my pulse is racing from the shot and I'm starting to get a headache
Hopefully tomorrow will be better.

PPROM and POLY

I just had my ultrasound for today. I still have too much amniotic fluid- last week it was 28 and this week it was 27. My cervix is still closed and long (30). The last time they checked my cervix it was 39. So far, everything is still looking good. I'm eagerly awaiting 35 weeks... I'm ready for Miss Wendy to be here (just not too soon because we want her as healthy as possible).

As for me, they started me on oral insulin twice a day and my blood sugar has been great since then. I'm getting tired of not eating sweets though! I love me some chocolate!

Ultrasound Tomorrow

This morning I woke up and had lost a lot of fluid. It was 4am and I called my nurse. She said it was normal, that once your membranes had ruptured that you could get a gush of fluid when the baby changed position. However, it scared me to death because I haven't lost anywhere near that amount of fluid the whole time I've been here. They scheduled an ultrasound for tomorrow to check to see how much fluid I have left.

Also, I'm starting oral insulin today. My blood sugar has been high at lunch for the past 2 days. This whole diabetes thing is irritating. I've never had a problem with my glucose before, so I hate dealing with this on top of worrying about Wendy and being stuck in the hospital. On the bright side, I am off IV antibiotics so my IV was taken out today! Woohoo! I can finally shower without having to have my arm/hand wrapped up.

I'll try to post the results of the ultrasound tomorrow. :)

Almost Two Weeks

Tomorrow will be two weeks that I've been at Centennial. Seems like so much longer. The days are beginning to run together. And I really miss getting a full nights sleep.

Wendy is fine- she's been looking great on the monitor. The only thing wrong with me is my blood sugar has been a little high the past 2 days. Tomorrow I will probably start my oral insulin. Its weird that the day I ate normal food my blood sugar was fine, and now that I'm on this diabetic diet its been 140-160. But its only high at lunch. Breakfast and dinner are fine.

Its kind of frustrating... all these medications and all. Especially the IV antibiotics. My IV has started bothering me again, which means my vein is probably about to blow. I guess I will be getting a picc line when this one blows. I was hoping I was going to get to come off the antibiotics soon, but the doctor hasn't mentioned it. I'm going to write it on my board to ask him about that tomorrow when I ask him about my birthing plan. I want to go ahead and get it ready in case I go into labor sooner than expected.

31 weeks yesterday!

Delivery Date Set

One of my doctors came by today and he said he was shocked by the chromosome results and said he hated we didn't have any other cases to go by. But he said on the bright side, I was looking good and very stable and that we would deliver at 35 weeks (if I make it that far without any other complications). Tomorrow I will be 31 weeks- only 4 more weeks!

I had to have my IV changed again- the 4th one I've had since I got here- the 3rd in the last 4 days. My veins keep blowing, so if I don't get taken off all IV meds soon I will get a picc line. That'll last for my duration of the stay and I can have my meds through it and they can take my blood through it every week.

Other than that, it was just another boring, repetitive day in the hospital. I hope I can keep my sanity- because I'm really homesick right now.