We've Created a Monster!

Rachel was still struggling with bottle feedings. Either the milk came out too fast and she choked or it came out too slow and she got frustrated and didn't get enough to eat before becoming tired. We took her to Babies R Us and got 4 different kinds of bottles for her to try, kind of like Goldie Locks and the Three Bears. The last bottle we tried was Dr. Browns and they are our savior! She loves these bottles and now drinks like a champ. In fact, since we got those bottles, we've had to get larger sized ones because she has started drinking so much more! She isn't afraid to tell you that you are too slow in getting her the milk either. She lets out a little cry of annoyance if we are and it's still funny to hear her make noise - even at 3 in the morning.

Rachel is staying awake for longer periods of time, even skipping over her normal in between feeding naps sometimes. It's amazing but scary at the same time. She is starting to be a little person and I am now starting to feel unsure with what I'm supposed to be doing with her. How do you play with a baby? I've been singing to her and talking to her and putting her on her play mat. She does like to kick and has really strong legs. We are working on her head strength too. I put her on her play mat or Boppy pillow once a day. I can't tell if she likes it or hates it but she doesn't cry and she works really hard. She is my little tough cookie. :)

First Bath and Pediatrician

Rachel had her first bath (at our home) Sunday night. I was a little nervous about how she would do but in true Rachel fashion she stayed very calm through the whole thing. We used the "Bath Luv Frog" that is designed to keep your baby warm while washing them. My friend, Beck, suggested I get it and I really think it helped and I recommend it for those of you expecting a baby. :)

Monday, we took Rachel to her first Pediatrician appointment. She got her check up and her first round of immunizations. The doctor told us that it was nice to see Rachel so active and that she had good muscle tone, which is good news with her having Down syndrome. The doctors office was great and everyone was very nice especially the nurse. They made us feel very comfortable and let us know that we could call them anytime of the day and someone would be there to help us and that no question was too silly to ask.

Today has been a good day. I feel like we have hit a stride with her schedule and it's going to be easier to be able to get things done around the house. We even were able to get out and go for a walk with her and the dogs.

Finally Home!

Rachel is finally home where she belongs! Friday morning I called the hospital and found out that Rachel pulled the feeding tube from her nose thursday night (I guess she was as tired of it as we were!) and that she had been taking all of her feedings without a problem. The doctors wanted us to spend the night again at the hospital though. Well, it went great, no issues with her eating. The next morning she was cleared to go home and we got out of there as fast as we could. The picture above is us at the hospital getting ready to go. Rachel was welcomed into our home by my mom, dad, brother, sister-in-law and my dad's dog and our two pups. What a beautiful day it was out too. Last night was long as expected but I could care less. She is a very good baby, hardly ever cries and she loves to eat! Today, Rachel went on her first walk outside with Stephen and the dogs. Tomorrow, mom and dad leave and Stephen and I will get some quiet time with her. My dad and sister-in-law, Meredith, took a lot of photos and as soon as they send them to me I will post some up here. Until then, I'll try and update as much as I can in between poops and feedings. Oh, and of course staring at her cute little face. :)

Sleep Over

Well, at the urging of the nurse practitioner we roomed in with Rachel at the hospital last night. Over all, it wasn't a bad experience. I now know that I won't be able to sleep with her in our room. She makes too many noises and I am a light sleeper. But she sleeps for 2-3 hours at a time and didn't cry at all when she was ready to be fed. We just knew she was hungry because she started moving around more at that 2-3 hour mark. The experience would have been much better if we didn't struggle the whole night trying to get her to eat with the slow flow nipple. For some reason they (doctors or nurses?) switched her back to it and she gets so tired trying to suck out the milk by the time she gets only halfway through she is exhausted and done. Finally, the last feeding we had with her this morning before we left, Stephen tried a normal flow orthopedic nipple and she did fine! She drank all her milk minus 5 CC's. The next two feedings after that she drank all of her milk without any choking or dribbling issues. So all I can think is that as long as she continues to do this well overnight, they will take the tube out of her nose/stomach again and maybe she'll be able to come home this weekend. I'll be sure to find out more tomorrow and post any updated news.

Not Coming Home

Just a short post. Rachel isn't coming home today. She didn't eat well last night and they had to put the tube back in. To say we are sad is an understatement.

In case you didn't know...

Rachel is coming home Wednesday or Thursday!

We are so excited! Today and tomorrow will be mad dashes to get things done around the house and get prepared for her arrival home. Today her tube was taken out of her nose and the pulse/ox was taken off her foot. Rachel even got to try out her bouncy seat. She sat there looking around, looking at her hands, trying to figure out what exactly was going on, but she didn't cry or seem upset. She was just chillin'. She is just about 6 pounds and up to 18.5 inches. Tomorrow she gets the carseat test. We bring in her carseat and strap her in while she is attached to the monitor to see how she reacts for a hour and a half. They just want to make sure her heartbeat and oxygen levels are good sitting up for that long. Stephen and I also get to view the CPR video and other parenting videos they make you watch before you can take your baby home. Let's hope we pass the little quizes they give! :) November has always been my favorite month and not just because it has my birthday in it. I love Thanksgiving, I love fall and now I love November more because this is the month our baby comes home!

More News and Breastfeeding

Some good news to report! Rachel passed her first hearing test on Tuesday and the PIC line has been taken out of her hand. Wow, how wonderful it is that that line is gone. A much less tangled mess. The next step will be to get the pulse/ox off of her foot, after that, the nose tube and the last thing to go will be the leads on her chest that monitor her heart rate and breaths.

***** Warning! I will now talk about breastfeeding. *****

The last two days I have tried breastfeeding Rachel because we were not having much luck with the bottle. She would latch on and suck but then choke on the milk because it poured out too fast for her. We even used a slow flow nipple. On Tuesday the lactation specialist, Martha, helped me out and Stephen was there for support too. First, we tried just using my nipple and for some reason Rachel wasn't having it. So Martha had me use a nipple shield and that is just what Rachel was looking for. To our surprise, she latched right on and started to suck. She did the same thing at the next feeding. Now that we know she can do it, the only struggle we have to overcome is her wanting to fall asleep all the time. She gets all fussy and starts looking like she wants to eat but as soon as I get her to latch on, she stops and falls asleep. We have to constantly touch her, tickle her, take off her clothes or use a wet cloth to wake her up. It's exhausting! I'm hoping as she nears her due date she will become more awake and able to nurse longer. I am also having a hard time with the schedule the hospital has her on for feedings. I know they have to have her feed every three hours to keep track of everything but that makes it harder for me to "teach" Rachel how to eat. There are times I can tell she is looking for her meal but I'm unable to feed her because it's not time yet. I think that if I was able to feed her when she wants to, she would learn faster. But besides that, I have found so far that breastfeeding is really amazing and I'm happy I've pumped this long so I have the opportunity to try it. :)

Like a Regular Baby

As Rachel has been getting her milk, the more she has been acting like a regular baby. If she was still in my stomach, she would be 37 weeks along and just about what the doctors would consider full term. So I know the activity she is doing now partly has to do with that. But, I know actually getting a full belly has to be doing wonders for her too. She is so squirmy now and becoming more and more awake. She is really able to hold her eyes still and focus on things too. She is also getting the hang of the bottle. She can't drink the whole thing though because she gets herself so worn out by trying to drink. She hasn't master it enough yet to do that. Today though, Rachel did such a good job and I can see she is making progress. She is starting to connect the good full belly feeling with the milk taste and that makes her want to really try. I just have to hold myself back from pushing her too hard and frustrating her and me in the process. Overall, these last two days have been great. The doctor thinks she'll be off of her TPN (nutrients) by Tuesday and they can take the PIC line out of her hand for good!

Wires, a Foot and Poop

I think I had a break through moment today. All this time I think I've held myself in check loving Rachel. I have found I was loving her from arms length because I was afraid of all the things that could go wrong. Today, I actually allowed myself the pleasure of just enjoying her. I didn't have anything pressing to worry about. She no longer has to gain weight for her surgery, have surgery or even poop. She's done all the major things that she needed to do. Now all there is is feeding and I know she will eventually get the hang of that. Without all that worrying hanging over my head I had fun with her today. What a concept! I laughed at her little stretchy movements and her attempts to evade me changing her. I was absolutely amazed at how long she held my gaze today when she was awake and my heart about burst with love as I laid her on my chest to sleep with her arms splayed out. I can't wait until she is big enough to give me a hug with those chubby little arms.

I changed her diaper before I left today and I had a big surprise in the form of lots of poop! Totally took me off guard. I was sitting there struggling with her legs in one hand, trying to keep her wires out of her poop with the other hand while wiping her butt. Well, she pulled her leg out and set her left heel in to the poop instead! UGH! So gross, but I couldn't help but laugh. All this time I couldn't wait for her to poop and now it seems I am not ready for it. I had to call over the nurse to rescue me!

I will try and remember to get pictures of her tomorrow. She is 5.5 pounds and just about ready to stop wearing her preemie clothes. I think she will be out of them by the end of the weekend so I need just a couple more pictures of our sweet girl in her littlest clothes. After that, I will be ready to move on and see her in her "big girl" newborn clothes!

Tears of Joy

On Monday, Rachel had her dye test. We waited all day to find out the results and we didn't get them. We did find out the her VSD had closed and heart issues were no longer on the table. Huge sigh of relief there.

This morning I called the NICU to see if we could find out the results. The nurse told me she would have to have a doctor call to talk to us about it and took our phone number. Normally if a doctor has to talk to you about an issue, it's never a good thing. I waited for 2 hours feeling like my heart was going to beat out of my chest before I called them back to check again since the doctor hadn't yet called us. The nurse on the phone said that Rachel was good and was being fed Pedialyte! I still wanted to make sure I was hearing her right and asked "so the dye test went ok?" and the nurse said "yes!" Tears of joy started streaming down my face. Stephen walked in on the phone call and thought I was crying because something bad happened. I hung up the phone and told him the good news and we both were just so excited and relieved.

We got to the hospital today ready to feed Rachel. The nurse had already tried once and Rachel didn't like it. Apparently Pedialyte tastes like dirt and no one likes it. Why they give a baby food that tastes like dirt I have no idea. Don't you think they would make it tasty so the baby would want to eat it? Anyway, the one tube she had in her nose to her stomach is gone but she now has a tube in her nose to her stomach to help give her food if she refuses to eat through her mouth. We tried to feed her again and we were able to get her to take 5 cc's of the stuff before she refused to eat anymore. So the nurse shot the other 5 cc's through the tube. Other than that, she was a goofy little girl today. She was squirming around like crazy and making it hard for us to dress her and change her diaper. But, I will take on that challenge with a smile. :)

A Bad Day

After having such good news yesterday, I was so excited to see Rachel today and just be happy. When I got into the NICU, I was invited by the nurse to sit in on "rounds" about Rachel. Basically, a doctor and nurses discuss each patient and what their issues are during a meeting. I thought, "Well, I would love to do that and be able to hear only good news this time. I mean, It's only been overnight, what could possibly be wrong that I don't know of?"

So I go in to the meeting and they start talking about Rachel and her having the tube out, and the meds she's on and then they say something about Rickets. My eyes nearly bugged out of my head. I glance over at Rachel's nurse with a look like, did I hear that right?? Yes, she now has Rickets! I am seriously so angry right now I could scream. I am past being sad and feeling sorry for my girl. I am now so angry that we can't even have ONE FREAKING DAY of good news with out the other shoe dropping. I am to the point where I don't even feel like bothering with being optimistic. I think I'll just expect everything to go wrong now so I won't keep being disappointed time after time. Doesn't she have enough issues? What Down syndrome isn't enough? Being born 10 weeks early wasn't enough? Duodenal Atresia wasn't enough? A VSD isn't enough?! No, No, let's throw Rickets in to the mix and make it even more interesting.

Tomorrow they will preform the dye test on her stomach and I'm not even going to think good thoughts. I'm just going to walk in tomorrow and expect them to tell me that something is wrong and she won't be able to be fed (which is supposed to get rid of the Rickets in 3 months) and she's going to have X many more issues. I'm so tired of this crap. Where is that corner that we are supposed to turn?