Wednesday, November 30, 2011

Poor Little Wendy Can't Catch A Break

When we talked to the doctor this morning they confirmed that they were going to give her a NJ tube (the one that goes past her stomach) and begin feeds tonight. So we left and when we came back she did have a tube in her nose, however they said they can't use it. They said they couldn't get it past her stomach into the jejunum. They tried twice and said they would have another nurse try tonight. If they didn't get it on the next try then it would be up to the doctors whether they wanted to continue trying or whether they are just going to keep her on tpn and lipids until her G tube starts working. Every time they try to put it in, they have to do an xray and they have to decide if it's worth exposing her to radiation. She can live and grow with the nutrients in the tpn and lipids, but it does nothing to eliminate the hunger. My poor baby has gone without food in her belly for almost 2 weeks now. And she has another 2 weeks before they attempt to feed her through G tube again. The thought of her being hungry hurts my soul. And even if they get the NJ tube in, feeding her through there won't make her feel full because it's not going into her stomach, but they said it'd be better than what's she's feeling now. Plus breast milk is so much better for her. I'm praying things look up soon. It seems like all we've gotten lately is more and more bad news.

Tuesday, November 29, 2011

Home Before Christmas? I Doubt It.

So apparently they're not even going to attempt to feed Wendy through her G tube for at least 2 more weeks. They're going to put another feeding tube through her nose tomorrow. It will go past her stomach, into her intestines. It has to go past her stomach because if they put food into her stomach, it will leak out around her G tube. Having a G tube put in is supposed to be a simple procedure and you should be able to use it within a few days. Unfortunately Wendy's isn't healing as quickly as it should. I really hope it eventually heals and can be used. If not, they may have to go back in and try to fix it.

The doctor said we can try to have her home by Christmas. I doubt that will happen though. Nothing else has gone easy for us, so I doubt this will either.

The more I think about Wendy, the more upset I get. It's like theres a permanent lump in my throat now. And tears that are always threatening to fall. I can't stand the thought of her being stuck in that hospital baby bed for almost 8 weeks now. And when Zed and I are there visiting her, there's only so much we can do with her because she has so many monitors and iv's hooked up to her. It breaks my heart to leave her, but you can only sit there looking at her for so long. And since she is back in the NICU at the childrens hospital we can't stay overnight with her.

I am honestly so sick of Nashville! I wish I could go home every night and drive down in the mornings and spend the day with her, but I can't. It's too expensive. And I can't go home and stay for a few days because I miss her so much. So it's a catch 22. When I am home, I just love spending time in her room! It makes me happy.

I was really hoping Wendy would be home before Christmas. I am going to keep my tree up until that baby comes home, even if she's in there several more months

Monday, November 28, 2011

A Day of Rest, Because Lord Knows I Need It

I decided to take a day to myself to rest. Zed is going to stay with Wendy and talk to the doctors. I will be driving myself back down tomorrow. I am trying to actually rest while I am here. Of course, it's a bit difficult when I really want to scrub my house from top to bottom. I'm so glad momma, Grammy, and Sherry helped me clean the week after I had Wendy. Otherwise my house would be a real mess. As it is now, I still need to vacuum and dust, but that can wait until right before Wendy comes home- I want the house to be sparkling clean when my angel arrives home for the first time!

I have decorated a little for Christmas. Last year Grammy gave me several Charlie Brown Christmas decorations (a tree, some Snoopy Christmas dolls, snow globes, etc). So I put those up. And last night when I went to Walgreens to get my Zyrtec I saw some Christmas stockings. I realized Wendy did not have a stocking and they had Snoopy ones! There were only 2 different Snoopy ones, so Zed and I have matching ones and Wendy has her own unique one. I felt really bad about not getting Peanut and Pandora one, so I will have to find them ones later, probably just plain red ones. And since we are likely to be staying here for Christmas I am going to get a fake tree soon. One with colored lights! The colored lights will match the Peanuts decorations and I'm sure Wendy will love looking at the different colors!

I really hope Wendy gets well soon! I long for her to spend Christmas in our home.

Sunday, November 27, 2011

We Need Prayers...

Please forgive any misspellings or weird auto corrections, I'm on my cell phone. I wasn't sure I even wanted to tell anyone this yet, I'm still not sure I want to. But maybe if I write it down and get it off my chest I'll feel better. Maybe if I know people are reading this and praying for Wendy I'll feel better. Maybe posting this won't make me feel any different at all. Either way, it couldn't hurt.

As of this morning Wendy was doing great. She came offend ventilator friday. They took her off oxygen yesterday. And when the doctors rounded today they decided they were ready to try giving her a little breastmilk. Unfortunately that's where things went wrong.

Zed and I had come home because he has to go into work every monday. We had been here maybe an hour when the hospital called. They tried to feed Wendy and when they did, the milk got backed up and started leaking around her G tube. Then her respiratory and oxygen rate dropped. Now she's back on oxygen and doing okay. About an hour later, they called again. She has an infection. Not sure if it's from her picc line, surgery, or if she just caught something. She's now on several antibiotics. We should know more about the infection in 72 hours. Also, a surgeon (not her surgeon) looked at her G tube and said it didn't look healed and that's why it was leaking. But he couldn't give a definite answer because he didn't do the procedure. Wendy's surgeon will be by in the morning. Depending on what kind of infection she has they may give her an NG tube (on through her nose) again to feed her until her G tube is healed/fixed.

I just feel like its one setback after another. Can this poor baby not get a break? It sucks enough that I have been going constantly since I gave birth (and have been sick twice) but to see Wendy suffer hurts me so much more! I was hoping to stay home for 2-3 days and let Zed go stay with Wendy, but now knowing she's sick, I can't not be there for my baby. And I feel damn guilty because I want/need a break. I know I need to take care of myself too but hopefully she will start to improve soon and I can take a few days before she comes home to catch up on some rest.

And on top of everything, my milk production is going down again. Maybe it's because I was sick last week and not as hydrated but whatever the cause I'm fighting to get it back up.

On another sad note, it doesn't look like we will be visiting family for Christmas. I don't think we are going to want to take Wendy on a 7 hour trip once she gets out of the hospital... If she's even home by Christmas. Wherever we are (at home or in the hospital) anyone who wants to see us can come to us.

Friday, November 25, 2011

Black Friday

I hope everyone had a lovely Thanksgiving. I didn't get to spend it with family, but I got the next best thing. For the past 3 years I have spent Thanksgiving with a couple of friends. Zed and I are so grateful to have such good friends. We all went to visit Wendy last night, but didn't stay there long because she's still on the ventilator (more on that later) and then we all ate at Margaritaville (it was one of the very few places open in Nashville last night). Our friends have a baby that's just a few months old and it's always nice to see him. I would never begrudge anyone having a healthy baby, but last night I was a little sad. When we walked into the restaurant the hostess was asking about my friend's baby (how old, etc.) and then when she sat us down she told my friend congratulations. At that moment I realized the hostess had no way of knowing I even have a baby. At least when I was pregnant I had the evidence under my shirt. It just made me wonder if I will ever have the pleasure of people asking about my newborn when we go places. I'm not sure Wendy will be able to go out a lot because of the equipment she will need. Soon after we sat down, the sadness and feeling bad for myself went away because we were laughing and having such a good time. All in all, I had a pretty great Thanksgiving. Friends, food, and seeing my sweet baby makes for a great day.

As for an update on Wendy, she's still recovering from surgery. Since they had to do the Ladd procedure, it is prolonging her recovery time. It's a more extensive surgery than simply putting in a g tube. As of last night she is still on the ventilator. They were going to check her levels again this morning and see about taking her off but we haven't heard anything from the hospital, so we will see when we get there. The reason she's having to have a breathing tube is because she is still on a Morphine drip for pain. I hate that she's hurting and I want her to have all the medication she needs to control her pain, but I also hate that she's still on Morphine. It's really a double edged sword. If they take her off the pain medication, she hurts. If they leave her on it, she could get addicted and go into withdrawals when they take her off. They said if she is on Morphine for more than 7 days then they will put her on Methadone when they take her off the Morphine to try to help her not go into withdrawals. I really hope it doesn't come to that. No one wants to see their 6 week, (almost 7 week) old on Methadone. I specifically would not accept pain medicine during my 40 hours of horrible contractions because they said the baby could get addicted and I wanted to do everything I could to not put her through that and to see that she go through that anyways makes me feel like efforts were a waste. Maybe it won't come to that though. Yesterday they cut her dose in half. And it won't be 7 days until Sunday. I'm keeping my fingers crossed. On a positive note, her bowels/intestines are beginning to wake up from the surgery. So hopefully she will be able to be fed again soon and the replogle taken out.

My mom and dad are on their way up to visit her now. Grammy and Grandpa Lamar are coming too. I can't wait. My daddy hasn't seen her since she was a day old and Lamar has never seen her! Grammy hasn't seen her since she was a few days old. Wendy has changed so much in a short amount of time! They're not going to believe how big she is now. Her chart says 5lbs 10oz, but really she's more like 5lbs. They said the reason she weighed so much is because she is still swollen from surgery, she's pumped full of fluids, and the ventilator tubes and picc line weigh so many ounces. But still 5lbs from 4lbs is a big difference in a baby that small! At least it is in my opinion! I'm really praying for Wendy to come off the ventilator today so they could all hold her tomorrow! Wendy is so sweet, you can't help but want to cuddle her.

I will try to post more soon, when Wendy has made some progress. Have a safe Black Friday.

Wednesday, November 23, 2011

Tis the Season... To Be Sick :(

Wendy seems to be doing fine after her surgery on Monday. She is still on a ventilator because she is on a morphine drip. They had planned to take her off yesterday, but she was showing signs of discomfort so they didn't want to take away her pain medicine. I, unfortunately, have not seen her since before surgery. I am sick with yucky allergies/cold/sinus- whatever it is! I went to the pharmacy this morning and talked to the pharmacist and she helped me pick out medicine that is safe for breastfeeding. I really hope it works fast! I just want to get better so I can see my baby. Since she's not really awake it hasn't been so bad, not being able to see her, but if she wakes up soon I'm going to have to wear a face mask to visit my sweet girl!

Monday, November 21, 2011


Today was Wendy's G Tube surgery. When they got in to do the g tube the surgeon realized Wendy's intestines did not grow in the right place. She has what's called intestinal malrotation. They are going to do a Ladd procedure. This is going to extend her recovery time. I hate to see my baby suffer. I just want her to be well. People don't realize how blessed they are to have a healthy child.

Sunday, November 20, 2011

Due Date

Well, today was my due date. But Miss Wendy didn't want to hold out that long! Yesterday she was 6 weeks old. I can't believe my baby is that old already! It breaks my heart that she's 6 weeks old and hasn't been able to leave the hospital. :( Hopefully it won't be much longer now. Her surgery is set for tomorrow. I don't know why it took them so long to schedule it. I am honestly just so ready to take Wendy home! She's gaining weight too! She's 5lbs 4oz now! She will probably lose back down to 4-4.5lbs after her surgery, but I'm sure it'll pick back up soon after. We were hoping to have her home by Thanksgiving, but that's not going to happen. Maybe she will be home the beginning of next week though!

Sunday, November 13, 2011

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.

Tuesday, November 8, 2011

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.

Thursday, November 3, 2011

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.

Wednesday, November 2, 2011

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.

Tuesday, November 1, 2011

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.