2011; Coming To A Close

This year has been eventful, to say the least. Zed returned from Afghanistan and only a month later we found out I was pregnant. We have had our ups and downs, dealing with a difficult pregnancy, PTSD, and now a sick child. This has probably been one of the hardest years of my life, even harder than the year Zed was deployed. I have spent nights crying. I've had days where I couldn't quit smiling. And there have been days when I just wanted things to be easier.

But now that I look back, I wouldn't trade a moment of this year for anything, because through all the trials and hardships I've faced, I've been blessed with a lifetime of happiness. Her name is Wendy Lee.

I sit here smiling as I type as I watch her laying in her Boppy staring at the lights on her feeding pump. I never knew how much I could love a child. I had no way of knowing just how much she would mean to me when I got pregnant. I wanted a baby. I had wanted a baby since Zed and I got married. But God knew that he was going to give us a special child and He knew that I was going to need Zed home to help.

Today I was getting Wendy dressed in her cute 2012 "My First New Year" onesie and I realized how hard it was going to be to run her feeding tube through the outfit. If I ran it out the bottom, it pulled on her Mic Key Button. If I ran it out the top, it was rubbing her neck. So I decided to be creative and I just cut a hole in the side of the onesie. It actually worked really well. The hole is small enough to not be noticeable, but I can fit the feeding tube through there without it pulling on her or being in the way. I've decided I'm going to do this to all her outfits that don't button up the front. We won't be able to use the clothes with another child or pass them down since they'll have holes, but I would rather her be comfortable. And who knows, maybe when she grows out of them, I'll take them to the NICU and give them to other parents who have a child with a G tube. One thing is for sure though, I have decided that Wendy should not have to be any different than a normal newborn. I am not going to let her miss out on anything, including being dressed in completely ridiculous (but totally cute) outfits!

911!

Well, of course, since it was Christmas, there had to be some excitement at the McLanahan house.. unfortunately, that excitement consisted of calling 911. Everything was going like it normally does. It was almost 6 o'clock and Wendy's bag was coming off so we were changing her bag and g tube dressing. Once we finished that and got her dressed for bed we put her in her swing so we could eat. She was crying. We ate really quick and got her out and realized she wasn't breathing right. We tried to calm her down because we thought she was just upset but even after she relaxed she was still gasping for breath. We called 911. Around her lips were turning blue and her eyes were beginning to look dazed and they were lazy. We were scared because Wendy has never had a problem breathing before. Zed and I both know infant CPR but she was still breathing so we didn't want to risk doing CPR and breaking any bones. We just kept talking to her and trying to keep her awake until first responders got here. By the time they arrived she was back to breathing pretty normal. They gave her a bit of oxygen and we waited on the paramedics to get here. When the first responders first got here her heart rate was low but within a few minutes it had picked back up to normal. The paramedics arrived and said she looked okay but asked if we wanted to take her to the hospital or if we just wanted to put her back on her apnea monitor and watch her. We decided to just watch her because the paramedics told us with her extensive medical history she would need to go to Vanderbilt but they could take her to Gateway then transport her. They also told us that while in the ambulance if she stopped breathing all they could do was the CPR like Zed and I was trained to do and give her oxygen. Zed and I decided we were capable of keeping an eye on her and taking her to the hospital ourselves if necessary. Not long after everyone left her breathing seemed distressed again. We tried sucking her nose out because it's so tiny that any little thing in there can obstruct her breathing. I got nothing out. I decided to put a few saline drops in and suck again and that time I got a huge clump of dried mucus. As soon as I got it out, you could tell her breathing was noticeably better. She was fine after that. Only a week after bringing her home we have a terrifying experience, but at least now we know that if she is gasping for breath to check her teeny tiny nose for buggers!

Best Medicine She Could Get!

So it's taken me a while to get an update on here, but we've had a lot going on lately. We've been settling in with Wendy's routine and celebrating Christmas as a family! As I type, I am currently using my Christmas gift from Zed and Wendy, a iMac! I feel kind of stupid sometimes trying to copy and save pictures and do different things on here, but I really do love it. I just wish I were more tech savvy so I could get more out of it!

On to Wendy... She is doing great at home. She's really thriving! I think being home is the best medicine she could have gotten. Her home health nurse comes out 3 times a week now instead of 2 times. Little Wendy was a little stuffy the other day, but we got a vaporizer like the home health nurse said to try and she seems better. She wasn't congested so apparently it was just sinuses not a respiratory infection, which is a good thing. The only bad thing about Wendy is she wants to be held 24/7. I suppose that's our fault because when she was in the NICU we held her all the time when we were there. I can't really complain about her being a bad baby though. She only gets up about twice during the night and that's for diaper changes. Some nights when her belly hurts she'll want us to rock her instead of her sleeping in her bassinet. I guess this is what parenthood is like. Except where most mothers wash bottles the end of the day, I'm washing syringes. I wouldn't trade her for the world, though.

Best Birthday Ever!

Yes, I said it... yesterday was the best birthday ever. I didn't have cake or presents, except for one sweet little girl coming home. But honestly, that was the best gift I could've asked for. And Wendy was actually really good and let me get a good night's sleep :)

I'm not going to lie, it's a bit overwhelming taking care of her, just Zed and I. I'm sure taking care of any baby is hard, but especially Wendy with her constant feeds, several medications, and colostomy. She takes Pepcid twice a day, at 9am and 9pm, Amoxicillin once a day, at 9pm, multivitamins once a day, at lunch, and Nystatin for her yeast infection on her neck three times a day. Unfortunately, Wendy is a baby that spits up. I feel like I'm constantly mixing up my breast milk and powder formula to make it 28 calories, cleaning up spit up, or administering medicine, but it is an amazing feeling!

We took her to her pediatrician today. She has another appointment in 2 weeks with her pediatrician again and then the next day she goes back to Vanderbilt for an appointment. She also has specialist appointments with urology and surgery and genetics within the next several weeks. It's going to be a lot of work taking her appointments dragging around a feeding pump, but I suppose it could always be worse. Wendy is home-bound other than going to doctor appointments. She's not allowed to the store or anything. She has a home health nurse that comes twice a week and soon another nurse will start coming here to do occupational and physical therapy.

I'm sure it will take a few days but we will eventually settle into a routine. I even cooked supper tonight. I'm hoping things will continue to get easier and more comfortable, I know Zed and I will eventually be so used to using a feeding pump and changing colostomies that we won't know anything else ever even existed.

BIG Day For My Little Family

Tomorrow is my 22nd birthday. It should also be the day we take Wendy home! I say should because anything can happen between now and 2:00 tomorrow. But I am very hopeful this time.

We've been close to bringing her home before, but we actually have a discharge nurse and tons of paperwork this time! They wanted her stay until Monday because they're taking her off continuous feeds tonight and going back to feeding her every 3 hours. She has been having problems with spitting up on continuous feeds. The all night feeding was supposed to be so Zed and I could get some sleep, but I honestly got less sleep the past few nights with her spitting up constantly. I felt like I needed to lay awake and listen for her. So we said we would rather get up every 3 hours to start a new feed.

Wendy will be going home on several medications, so we went to the pharmacy and had those filled today. Her pump, monitor, g tube and ostomy supplies were delivered yesterday and Thursday. We are ready! I really can't put into words how I feel right now... Kind of nervous, a bit anxious, and very excited! I know we have a long road ahead of us, but this is a huge step in what I feel is the right direction!

Maybe I will have time to write more tomorrow, maybe not. But for not I'm going to try to get some sleep. We've been staying at the hospital with Wendy but the nurse practitioner said for us to go back to the RMH and get a good nights sleep before we take her home.

Passed With Flying Colors.

Wendy's EEG came back normal! Yay for no seizures! She also passed her carseat test. Could this mean our time here is actually coming to an end? I think so! She is supposed to be discharged Sunday or Monday. Im not getting my hopes up though because she seems to be spitting up way more than usual. I stayed last night with Wendy and it went pretty well. She sleeps pretty good through the night except when her bag comes off. And of course you have to add more milk to her pump every 4 hours. She has grown quite a bit- she's 6lbs 1oz now. Which she is 2lbs 2oz more than her birth weight. I am pleased with her progress.

Pennyrile Home Medical delivered her monitors and feeding pump today. The taught me how to use everything I will need for when my little princess is home. They will also be the ones delivering her ostomy supplies and her special formula. I will have to get her medicine from the pharmacy and I pray that the pharmacy on post carries her medicine. The nurse said for some reason some pharmacies dot carry her medicine in liquid form. We will cross that bridge when we have to, if we have to.

Right now, Wendy is sleeping pretty soundly in the glider. I had to change her and her bedding because she wet through her diaper. So since she fell asleep in her glider I just decided to leave her for now. Her daddy will be here shortly and I'm sure he wants some snuggle time anyway.

2 Month Shots

Wendy has gotten her 2 month shots today and yesterday. She is still doing about the same. They're trying to get her on a home schedule. They also tested her for seizures tray because she does this twitching motion with her hands. We should have results tomorrow. We are still anticipating bringing her him within a week or so. They have to do a carseat test before we can take her home too. They put her in a carseat and monitor her for an hour to make sure she is stable enough for an hour long ride. But that's pretty much all the update I have. Excuse how random and jumbled it probably seems, zed and I are sitting in the drive through at KFC getting supper and I'm trying to update on my phone really quick.

Back To 7 South, But Still No Relief For Us

Wendy is still improving at a decent rate. Her G tube is still leaking a bit, though. She had her picc line out today and they moved her to 7 South- which is in the main Vanderbilt hospital.

Unfortunately Zed and I are wore out. We are drained of happiness and energy. I went through the bad stages of it last week and I feel like it's caught up with Zed this week. I feel bad because if I could take all his sadness and worry from him, I would. I just want to see him smile again. And not just any smile, I want to see that smile that makes his blue eyes sparkle.

I'm hoping we'll both be a lot happier once we get Wendy home, which is supposed to be before Christmas. But I honestly feel like we're walking in circles here.

They're try to get her on a discharge feeding schedule, which means they'll reduce the time on her feeding pump. Well we already know if they take it below 2 hours she's going to have emesis. I just wish they'd leave well enough alone and let us take her home already. I mean really, who cares about condensed feeding?

Christmas Party

Zed and I both had appointments at Fort Campbell this morning so we went home last night. We ended up staying there and going to the company Christmas party tonight. It was nice seeing everyone and sad, too. It was sad because we were seeing everyone else's new baby and it made me miss mine. So we left at 7 and headed back to Nashville.

I dropped Zed off at the RMH because he was tired and I drove his big jacked up truck to see Wendy. Well the problem is his truck won't fit in the parking garage, so I had to park a block and a half away at a bank and walk. So yes, at 9:00 at night I walked by myself to the hospital.. The things you'll do for your baby.

Wendy's nurse didn't really have much news because the day nurses hear what the doctors say when they round and the night nurses don't. So all I got from Wendy's nurse tonight was that she had a bit of emesis earlier and so they kept her at 30mL but if she does okay with her next feeding they'll take it up to 34mL. I'm going to try to get to sleep soon so I can be up early enough to talk to Wendy's doctors.

Santa Clause Is Coming To Town! Well, To The NICU At Least.

Wendy is continuing to improve and they are hoping to have her off all IV fluids in 2-3 days. They put her feeds back on a pump and she's not spitting up anymore. I'm not sure if she will be home by my birthday or not, but if she isn't she will be having her picture made with Santa. Zed and I signed the consent form today. He will be visiting on Sunday, December 18. Either way, whether she can come home before then or not, it gives us something to look forward to. If she is home before then, I would love to find a Santa to have her picture made with! Zed said if we couldn't find one that he would dress up as Santa! Wouldn't that be a sight?!?

Progress, Slowly Getting Better

Wendy is doing okay, not great, but okay. They went from 6 to 10 to 13 and now 17mL of breast milk every 3 hours. It's still less than half of what she was taking but we're getting there. Today she had problems spitting up. She spit up twice and had to be bathed and have her clothes and blankets changed. I told the nurse that she would probably do better on a pump, rather than a bolus feed because her tiny tummy doesn't tolerate a bunch of food at once. So she said she would mention that to the doctors. Maybe tomorrow she will be back on a pump like she was before and they can continue to increase her feeds.

She had a bit of a hard time getting rset today. If you're my friend on Facebook you probably saw me complain about Wendy not having a private room. She's in a twin room. The poor baby in the room with her is obviously in pain. She has a sign up that says "be gentle with me, I have two broken clavicles and a broken femur". I heard the nurse say they're giving her Tylenol for the pain. I feel bad for the family because they can't hold her. She was born on December 2 and is almost a 10lb baby, which is huge for a kid in the nicu! And she honestly has more hair then Wendy! A lot of people probably thought I was being rude when I complained earlier but I truly did not mean anything negative toward the baby or her family, because honestly I think she and her family need their privacy as much as I want it with Wendy. I'm really hoping a single room frees up soon so one of us can be moved. Or even better, I wish they could get us home soon!

The Sound Of My Voice

Today I sat and read to Wendy for a while. We are reading Percy Jackson and the Lightening Thief. When she was first born we read the little kid's picture books. But then I realized she doesn't understand what I'm reading so I might as well read something I could sort of enjoy too. I didn't want to read anything trashy to her (like the Sookie Stackhouse Novels, that I love!) so I picked a good teenage book. I still haven't watched the movie. I'm waiting until I finish reading Wendy the book, then I will watch it. After I finish reading her that book, I will read her the second one because they are coming out with a second movie.

As for an update on Wendy's progress; she's doing okay. They gave her 6mL of Pedialite a few times yesterday. They are switching that to breast milk today. However, 6mL is not enough to tell if her G tube is going to leak or not. They're going to keep increasing her feeds and hopefully her G tube won't leak. And eventually when she can come off the TPN and lipids they will take her picc line out and we can go back to 7 South which will be a transition to come home. We will learn how to use all of her equipment and we will take an infant CPR class. Then hopefully within a week after going to 7 South she can come home.

A lot of people tell me to rest while I can because I will be super busy once Wendy comes home. But do you know how hard it is to rest while you're worrying? It's pretty damn difficult. It just bugs me when people act like it's harder to take care of a baby than it is to sit with a baby in the NICU for weeks and weeks. I'm not trying to complain. I'm also not saying I'm a better mother, or that my life is harder. In all honestly, my life is pretty great (other than Wendy being sick). I have a husband that loves me and provides for me, who is also one amazing daddy! I have a very supportive family and friend base. And I have a beautiful daughter that is more perfect than any baby in this entire world (at least in my eyes; I know, I know, I'm biased!!) . I just don't like when people pretend to understand what I'm going through. Unless you've been through this yourself, YOU HAVE NO FREAKING IDEA! That's why I try to never judge someone unless I've been there. A lot of people go through things that I can't imagine, such as losing a close family member, being a single parent, etc. Those are hardships I haven't had to face and so I commend anyone that does, but like I said, unless you have had a preemie with a chromosome anomaly, you have no idea the difficulties I face on a day-to-day basis, so unless it's words of encouragement, you can keep your opinions to yourself :)

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.

Still Not Being Fed :(

Well, as you can probably guess, they tried again last night and was unsuccessful at getting a NJ tube in Wendy. The doctors are now deciding how badly they want her to have one. If they decide it's worth being exposed to radiation they will put it in using fluoroscopy. So for now, she is still on the tpn and lipids. Either way, whether they get a NJ tube in or not, I really hope these next two weeks goes by fast. I hate seeing her with a tube in her nose and I hate the thought of her being hungry. Either way it sucks for me! Also, they won't be able to take her picc line out until she gets on full feeds. Many prayers would be appreciated, for me and Wendy. Wendy needs them to heal and I need them to keep me sane, because my heart is aching seeing her like this. I keep telling myself, it'll be over soon. I kind of feel like that's a lie though. I've been saying that since I got put in the hospital on Sept 6. And I know that even when Wendy comes home her life (and mine, essentially) will be loaded with doctor appointments. But at least once she comes home she will feel like my baby. I almost feel like I'm just borrowing her now because I have to leave her every night. In 17 days on dec 18 I will be 22 years old. If Wendy could come home around then, it would be the best present I could ever hope for.