Landree's Stay in the NICU: Day 11

April 17, 2012

Happy two weeks old to my sweet Landree Claire. This isn't exactly the two week birthday celebration I was anticipating...but it never really is about how we get to plan things, is it? God has His reasons for this time in our lives. I just wish I knew why, but I'm also expecting to never know why.

I called this morning when I woke up to see how her 9 am feeding went. The nurse on call told me she took 40 ml. Hmm....I feel like she could've done better than that. When Mommy and Daddy come up there for feedings, we mean business. I can only hope that the nurses mean it, too. 

I don't know why, but this discouraged me just a little bit. This is probably because she took two 60 ml feedings in a row. However, today her goal was moved up to 65 ml. I'll be honest, I can't wait until they keep moving her feeding goals up. It seems like just when we get there, they're changing it. Can't we just keep it at 60 ml (2 oz)? Ugh. 

I decided that after I typed up my April 16th post, I didn't realize how angry I was with the doctors and decisions being made about LC. I feel that her little case is very over looked because she isn't "sick" according to them, but yet, there's "something wrong with her." Since she's this anomaly that no one can figure out...we're just kind of putting her little case up on the shelf. Whether this is really true or not, this is how I feel. Anytime we have questions and want to talk to a doctor, it takes a lot to get a doctor down there to spend anytime talking to us, and when they're finally there...they act very put out to be talking to us. So I spent a good part of my morning calling Children's hospital talking to them about what it would take to get her transferred. The lady that I was put in contact with I really, really liked. I explained my story to her (while crying my eyes out - I couldn't help it). She told me what to do if I wanted to get her transferred, but she was going to try and contact someone at Medical City to come and talk to me about my concerns and see what we could do. She called me back an hour later and told me someone would be up there to talk to me soon. I thanked her, and she told me to call her back and let her know how it went. Well, I was up there for nearly three hours, and surprise, surprise, no one ever came. The way things have gone, I'm not surprised. I called her and told her I had to leave to get my daughter, but I never saw or spoke to anyone. She was very sweet and understanding. I told her I was probably going to make an appointment with the NICU manager. She told me to be in touch and let her know if she could do anything - and she said she'd be praying for Landree. That means more than anything. I pulled myself together, spent a little bit of time with AB before the hospital, and then head up there.

Miss LC did get a special treat on her two week birthday - Aunt Jill came to visit for a little bit today. This was a fun treat for LC and Mommy. We love our Aunt Jill. 

She took 55 ml for me at 3:00 pm. Jill was an eye witness of how those last few ml are like pulling teeth to get her to take. She just becomes so sleepy towards the end. I'll take it over being sleepy the WHOLE time like she was doing, though. She did good, though and got to spend some cuddle time with Aunt Jill as a reward for her hard work.

I love seeing my girl and spending some sweet, cuddle time with her. I can't wait to get her home and hold her ALL THE TIME! I'm going to be that mom that I said I would never be. The one that never puts her baby down and she's rotten because of it. Landree deserves to be rotten. She's already been through so much. Poor thing. My favorite way to cuddle is to have her up on my shoulder. She always seems to calm down that way (if she ever fusses).  *Warning* I'm pretty sure this picture is the worst I've ever taken...but I love it of LC. You can see how this whole thing is aging me...ick!

When I got home, my wonderful friend Amy brought over my favorite - pot pie!! I was so excited to eat it! So, that was a comfort to my long day and then my wonderful mother in law came over and hung out with AB for a little bit again tonight. So, Austin and I made our nightly visit to see our sweet LC. When we got there she was awake and I changed her diaper and took her temp like we do before every feeding. Notice how she's sporting the pink onesie...maybe this way all the nurses will quit calling her a "he!!!!!"

I love watching her suck on her paci. I love it especially because the mean doctor tried to tell me she had an oral aversion. Really? Whatever. Oh, how I'm praying through this anger I have with these doctors and how things are being done. It's just hard for me because my line of work is kids and their parents. I know that I always make an effort to let parents know that I genuinely care about their child, and I want to be there for them if they need me or want to talk. Why can't these doctors make us feel that way?

We got home to my AB running up to us screaming, "Mommy! Daddy! I'm so glad you're home!" I love that little girl and her enthusiasm. She is definitely what's getting me through this. Her and the grace of God. I took a picture of her tonight, because when Austin got home and saw what she was wearing he looked at her, laughed and said, "You look like the T-Mobile girl."

Bahaha!! That made me laugh (Thank you, Babe. You still manage to make me laugh even when things just can't possibly be funny). He's right. She did look like the T-Mobile girl in that dress. Oh, what a joy she is. I can't wait to have two little joys running around this house. Come home, Landree!!!!!

Landree's Stay in the NICU: Day 10

April 16, 2012

Ten days in the NICU? Ten days? I thought we'd be here 2-3 days, tops. Now here we are ten days into it and we're still very unsure of when she'll get to go home. I'm so tired of this place I could just fall apart. 

This whole experience has been surreal to say the least. I find myself looking for answers in every scenario. I was walking into the hospital yesterday and saw the security guard sitting at the front desk. I actually thought to myself..."I wonder if he could give some explanation for all of this." I almost had to shake myself out of it. How ludicrous! It's almost a form of insanity, I believe. I do it all the way up the elevator to the NICU. Every doctor, nurse or anyone I see in scrubs, I want to stop them, shake them and demand an answer for what's wrong with my baby. I mean, it could be something really simple, right? Ugh. I feel the insanity creeping up on me every time I think about it too much. Here's the truth: the only One who has answers is God. He is the one who has an explanation behind all of this madness. I still think some of this could be a lesson in learning to wholeheartedly trusting Him. I struggle with that. When it comes to my kids and worry - I am a control freak. I feel if I relinquish any of that control, than something will go wrong. CRAZY! It's crazy, I know it is. Who am I to think that I actually have control over this? Austin said it best when I was describing my control issues to him. He said, well I can top that. It's not that you think you have control, you only have the illusion of control. So true. I must try to focus on faith. Faith in God and faith in His plan. 

Yesterday started off a little rocky for me. I called up to the NICU to see how her 9 am went. The nurse told me she took 15 ml. 15??? What happened to the two 40 ml feedings she had yesterday. I was feeling pretty discouraged. I had to truck on, though. After about an hour or so, I decided to call back to see how she did at her 3 am feeding. I thought maybe she rocked the 3 am and was just sleepy at 9. Her nurse on this day wasn't a NICU nurse. She was a floater nurse from Peds. I was a little irritated with this, because she didn't have access to any of her charts or information. What if there was something important she needed to know (like she's not taking breast milk right now), and she couldn't have access. Furthermore, isn't there more specialized nursing going on in the NICU than in Peds? What do I know? According to the doctors, absolutely nothing. Anyway, when I called back she told me she was glad I called because she told me the wrong amount for her 9 am feeding. She said she really took 40 ml, not 15 ml. Seriously? I panicked for a good hour over that. Why are things going this way??? I'm trying not to be a high maintenance parent, so my frustrations didn't show to her. I know she's just doing her job. Nevertheless, I was pleased with that news and headed up to the hospital.

When I got there it was about 2:45. I didn't see her nurse for nearly 30 minutes...hence her 3:00 feeding was late. I was fighting back tears. I'm sure to most this doesn't sound like a big deal. So the nurse is a little late? So what? Well, I feel like poor Landree has just been a little overlooked by the doctors and sometimes, the nurses. She's not a "sick" baby, but "there's something wrong." I feel like they're just writing her off. Whether this is the case or not, this is how I feel. It's heart breaking. I finally went to get someone to get this Peds nurse to feed my baby. Since I'm not using breast milk, they have a special mixture with her formula and I don't know how to do it yet, or I would've just done it myself. So, I got some snuggling time in with Landree before her feeding - that's a plus.

I was proud of her because I noticed how she was keeping her mouth closed more. The doctor commented on her poor muscle tone because of the way her little mouth stays open. I attribute it to her small chin and gravity is working against her. Not to mention, most of the time her mouth is wide open is when she's sleeping. Give the kid a break.

Finally, the nurse came in, and then went over to the OTHER baby in the room and tried to feed him for Landree's 3:00 pm feeding. S-E-R-I-O-U-S-L-Y? Hello! My baby hasn't had a feeding since noon! Or did you forget that one, too. She turns around after figuring out it was LC that needed the bottle not the other baby, and apologizes. I just nodded my head. What are you going to do? Anyway, so she mixed up the bottle and I sat down to feed my baby - finally.

My bad mood was quickly turned around when LC took her ENTIRE feeding in 15 minutes. I'm talking sucked that bottle down!!! I was so happy I could cry. What's that? Tears of joy for a change? Awesome.

Not only that, but that little turkey was awake for the whole feeding and we even tried to give her a little more. She didn't take it, but that's ok. She took 2 oz! Good girl!

And thank goodness for my sweet AB. I swear I would probably have completely lost it by now if it wasn't for her. She's turning into such a loving, sweet and compassionate little girl. I need her right now. We came home, hung out for a bit. Aunt Julie came over and brought me more comfort foods (it's the little things that count...) and AB some more milk. We're very thankful for her. Then, Brad and Bri came over and brought dinner...tacos - yum!!!!! I'm so thankful for all the meals right now. I can't imagine cooking right now. There would be no time.

Nana came over to play with AB (thank you, Nana!!) and then we headed back up to the hospital. This was Austin's first day back at work. Ugh. Oh, how I hated him going back. Austin could stay home with me all day everyday and I would be one happy girl. Haha - ask him how he'd feel about that, probably a little different from me. I tend to be a bit needy. ;0) Anyway, it was hard on him, I could tell. He seemed worn out when he got home. He's been so strong for me this whole time, I think it's starting to weigh on him just a little bit. We got to the hospital and had high hopes for another successful feeding. We were elated - she took her ENTIRE bottle again in 20 minutes. Good girl, Landree! Mommy and Daddy are so proud. We have high hopes for more progress over the next few days. I'm trying not to get my hopes too high, but she's been doing wonderful.

Thank you for all the prayers. Please continue to pray for Landree's progress. I just want my girl home. I'll deal with the other "stuff" later. Let's just have all of us under one roof, first.

Landree's Stay in the NICU: Day 9

April 15, 2012

I've been skipping her 9:00 am feedings and just going up before her 3:00 pm, staying for a while, leaving and coming back up for her 9:00 pm. I think this has really helped my emotional and physical state of exhaustion not being there so early in the morning. Plus, I get the whole morning/early afternoon with AB. This has also worked out really well for Sunday mornings. Our church moved to three services and the last one is at 11:30 and that's the one we've been attending. 

God has blessed us with a church that is full of such loving and serving people. Austin and I truly feel that without this faith family, there is no way we would be getting through this without them. We've come home to our pantry and refrigerator full of food, our grass being mowed, meals every night. It's just been so humbling to be blessed by these people. Not to mention our very close friends outside of church that have been serving to us, as well. Christ is really showing through our friends. The outpouring of sweet messages, phone calls, texts and just drop ins to bring us food or anything extra we need has been so wonderful. We most definitely couldn't have done this without our friends - no way! 

We were able to go to church on Sunday, which is exactly what we needed. I was happy to get up and worship with my faith family, but feeling sad looking back on last Sunday. I remember this was the 2nd that Landree had been in the NICU and the lady at the front desk told me she had been moved to the "other side." This really got my hopes up thinking she'd be going home soon. Here we are a week later, and still not home. Anyway, we got to church a little late...not moving so quick these days. We walked into church and were greeted with hugs and sweet words. During the service Pastor D mentioned us in the service and asked for prayer for Landree and us. Not only that but during the service Shane and Kasi pulled us out to pray with us. I needed that so bad. Thank God for them - couldn't get through this without them and they're ministry. I felt God presence there as I always do, but it stayed with me the rest of the day. 

We took AB over to Shane and Kasi's after church to play while we went up to the hospital. We got there in time for her 3:00 feeding. I wasn't too crazy about the nurse. She asked me how my two and a half year old was. I said, "Oh, she's fine. Just playing with a friend right now." She said, "Oh, so she's normal?" {You could hear the sound of my heart breaking}. Seriously? Did she just ask me that question?  I wanted to say, "Yes. She's normal. As opposed to this one who isn't?" Why, Lord? Why does there have to be people like that? Why on earth would anyone think that's a good question to ask a mom? 

That set the tone for me for the rest of the visit. I felt out of control like I could haul off and punch someone in the face. I tried to move past it and focus on what we were there for. While I was getting ready to feed Landree, the doctor called my cell phone. Austin answered and told him we were actually there. He sounded less than thrilled, but told him he would be there to talk to us soon. If you haven't been able to tell, our overall experience with this place and this NICU has been somewhat disappointing. I hate that because I love my OB and I have always been taken good care of, but if I had to go through this with another baby and be at this NICU again, I think I would pull my hair out. We've entertained the thought of taking her to Children's. If things regress again...I believe we will.

Anyway, the doctor came in and this is the one I really liked, he was even disappointing us a little bit with his actions. He told me that he heard I wanted to request all formula feedings to see if that was the reason behind her waking up and starting to eat better. He told me that was fine, but he assured me that it was not the medicine or anything thyroid related that had to do with her lethargy. I told him that was fine that he felt that way, and he was probably right. I'm not saying it was just that, but perhaps something in my breast milk or lack thereof that was causing her to be this sleepy. After laying out the facts (see yesterday's post), he back pedaled a bit and told me he probably started the conversation off wrong. Yes. Yes, you did.

I wouldn't say this conversation was encouraging. I wouldn't say it was discouraging - it just was. He said he would wait and see what the genetic tests came back as, but in the meantime we needed to focus on her feedings and getting her home. Well, yes. That's my goal, too. I just wish ONE OF THESE DOCTORS could be a little more encouraging. I loved it, at one point he said, well if it is just the formula that's great - it's a cheap and easy fix. He went on to tell me he couldn't explain it scientifically. I wanted to laugh out loud and say, "Well, duh! Of course you can't explain it scientifically - there's something much bigger than science taking place here."

LandreeLandree and I'm so proud of her! I really feel like I'm on to something with this formula thing. Don't get me wrong, it breaks my heart to not feed her breast milk right now. I work so hard for it! I'm still pumping and just freezing it right now. We'll see if I can re-introduce it later, but until then I want to stick with what is potentially working better.

At her 9:00 pm feeding, I left her sucking on her paci and wide awake. I love this. It gives me small glimpses of hope. I know there is a much higher power working here. God is in control of this situation and He has Landree right where He wants her. Why? I may never know, but I do know that He will use this story for His glory.

Landree's Stay in the NICU: Day 8

April 14, 2012

After the day Landree had the day before, I thought I'd treat myself to sleeping in with the rest of my family. So I did. All of us woke up around 11:00ish. It was very nice. It occurred to me that today marked one week she has been in the NICU. In my opinion, that's one week too long...but that's only because I want my baby home. Not because I don't think she should be there to get the best care she needs. I called them when I woke up to see how her middle of the night and 9:00 am feeding went. The sweet nurse from the day before was her nurse again today. I love it when there's consistency there. The more the nurses are there, the better they get to know Landree and her little story. Fran told me that she took 40 at her 9:00 am feeding. It wasn't quite her goal of 60 ml/cc, but at least it was a TON more than she had been taking, so good for you Miss LC!!

I got AB up, gave her breakfast (or more like brunch, I guess) and then got her ready to go to a birthday party with Laura and Debbie. I was glad for her to get out of the house and do something fun, since she's really into birthdays right now. She knows exactly what they're all about and loves them - even if they aren't for her. She was all set to go!

After Laura came and got AB, Austin and I set off to the hospital to give LC her 3:00 pm feeding. When we got there she was actually on her belly (to help with the spitting up)...I love looking at her sweet little head.

Daddy gave her the bottle for this feeding. She wasn't as alert as we would've liked, but still managed to take 40 ml/cc. Again, vast improvements from the 0-15 ml/cc the last few days. I was very pleased with this progress.

Austin and I were chomping at the bit to get the results from her blood work on her thyroid. We did some researching (bad parents!) on line and found that if a mother has hyper-thyroid that it can cross the placenta and cause the baby to be HYPO-thyroid. This would make the baby lethargic and have little energy to do anything, including eating. All the symptoms fit her to a tee. When the nurse came back with the results we were extremely disappointed to find out her thyroid was fine. How sad is that? I'm at that point; where I want something to be wrong just so we know how to fix it! We stayed and loved on her a while, and then left. Not gonna lie, we left, once again, feeling defeated and frustrated. We thought that maybe, just maybe we were getting somewhere with the reasons for her not eating and sleeping so much. 

After we got home, Laura and Debbie dropped a very tuckered out, played out little girl! She had such a good time she didn't want to come home! After talking with Debbie and Austin and I throwing around some ideas, as well, we started thinking more about the medication I'm taking and the affects it could have on LC. The doctors are all aware of the fact I'm taking medication for my thyroid, but what if this was the cause for her lethargy? Here are the facts:

• the first 2-3 days of her life she only had formula because of low blood sugar, and my milk was not in.
• Landree would stay awake for good amounts of time the first 2-3 days of her life.
• Day 3 is when I started pumping and she was getting both breast milk and formula.
• Day 4 is when things started going down hill with her feedings and keeping her awake.
• Day 5 is when she was admitted in the NICU and they started doing every other feeding gavage. 
• After this is when her lethargy hit an unhealthy point and she's rarely awake.
• Yesterday they started doing every other feeding a formula feeding with gentle ease formula for the spitting up.
• Yesterday is when she started making improvements and staying awake.

What am I getting at, you ask? My breast milk. Maybe my breast milk has something in it that is causing her all this lethargy. My guess: the thyroid medication. Yes, her thyroid results came back fine, but one of the side effects of what I'm taking is drowsiness. And yes, research shows there hasn't been any harmful effects on babies who breastfeed and moms are taking this medication. However, the manufacturer says "do not breastfeed while taking this medication." I don't know if this is what is causing her to be sleepy all the time, but I do know that it wasn't until the every other formula feedings that she started making improvements. Austin and I are trying not to get our hopes up about this, but at least this is something to try. No one seems to want to try anything around here! They just want to wait for these genetic tests to come back because they think something is wrong with her. Ok. Fine. You think somethings wrong with her. I get it. But how about we be proactive and try things in the meantime just so I can get my baby home! Please!!!

So, before her 9:00 pm feeding, I called to tell them we were on our way up to feed her, and I asked the nurse if we could make this feeding a formula one. She said, "sure" and so I felt a little better about it. When we got there tonight she was asleep at first, but then wide awake for us once I changed her diaper and took her temperature. I fed her tonight, and she took about 35 ml/cc (still a great improvement from days past). Also, the nurse pointed out that every formula feeding she has had has been through the tube, she may not like the taste of the formula as much. That could be another reason she lost interest in the feeding. The good news is, it wasn't her fatigue that made her lose interest. She stayed wide awake. 

We had a nice visit with her nurse about everything and she was going to double check with the doctors to make sure doing every feeding a formula was ok. She told us that they would probably push the breast milk just because they think (and they're right...in most cases) that breast is best. I do agree, but what if this time with the medication I'm taking, it's not best for Landree? 

Today big time improvements were made. She only spit up once (hallelujah!!), she stayed awake through her whole 9:00 pm feeding, she ate a good amount and she was sucking on her paci. This makes me happy because the dreaded Neonatologist said she thought she could have an oral aversion. Oral aversion, MY FOOT! 

Anyway, we're hoping these all formula feedings take and we might have gotten to the root of the lethargy. If not, then we think of something else...we meaning, Austin and I - sheesh! We got in some good snuggling time with our girl tonight and then headed back home.

Oh how I hate leaving this little face. I'm so proud of her efforts and I know she's only going to improve. God is in control...not me. Thank goodness for that!

Landree's Stay in the NICU: Day 7

April 13, 2012

I hope that this post makes up for the April 11th post. That was the lowest I've been as of yet. I'm praying desperately that we don't have another day like that, but I'm also praying that God prepares my heart for whatever it may hear. So on a lighter note, this day was a wonderful, wonderful day.

I didn't go in for her 9:00 am feeding because I took AB to MDO at First Baptist that day. I'm very blessed because two of my friends that work there, offered to let her come at no charge if I need to. I quickly accepted the offer for Friday because Austin had a doctor's appointment that morning and I was hoping to get there early enough to talk to the doctor. So, I dropped AB off and then called the NICU to let them know I was on my way and see how she did for her 9 am. The nurse, Fran, whom I haven't met yet, was very happy to inform that when the OT had been in to work with her for that feeding she took THE ENTIRE BOTTLE and had a very successful feeding. She was awake and alert and just did awesome. That couldn't have made this Mommy's heart any happier. I was floored! I couldn't wait to get up there and see her awake.

When I walked in, I was greeted with these big, beautiful brown eyes.

This girl, she stayed awake the entire time I was there and through her 12 noon feeding. That was nearly five hours this little turkey was awake! Hallelujah!! This is the most this child has stayed awake. That's a lot for her. Being awake that long can really tucker one out. Check out that big yawn.

Not only did she take her whole bottle that morning, but she hadn't had any spit ups either. That's something else they were concerned about. She was spitting up way too much and the color was a bright yellow color that concerned the doctor. However, her upper GI showed that everything was fine with her, intestinally. They switched her feedings over to every other being a formula feeding (Gentle Ease) for her spitting up issue. She's done so much better since. I'm hoping that I won't have to stop pumping because my supply is so much better than it was with AB. I mean, check that out!

Austin and I came back for her 3:00 feeding, hoping and praying that she would be as alert as she was for her 9:00...and hoping that the feeding would be just as successful. However, I told myself that not every feeding will go like that, most likely. So, to not set my self up for a let down, I had trained my mind not to expect as much of a success.

Unfortunately, I was right. Her 3:00 didn't go as well as the morning. She was so tired for this one and didn't do nearly as well. She was back to her "norm" of 15 ml/cc. That's fine, I gave her a pass seeing as that taking that full feeding and being awake that long probably wore her out.

We were encouraged that she was also taking her paci so well. The sound of her sucking on that paci was music to my ears, seeing as that the doctor the day before had told me she thought she may an oral aversion. Well, would a baby sucking on a paci for 30 minutes + have an oral aversion? I don't know, but it was refreshing to this mommy. I loved she made some progress this afternoon, even if they were small victories, they were still victories for Landree.

Austin and I went back up for her 9:00 pm feeding. Again, no expectations from me. I couldn't set myself up for that kind of disappointment. She was still lethargic at this feeding and only at 15 ml/cc again. That's ok, though. Spending that time with our girl is worth it...asleep or awake. We were encouraged because we heard that the doctor ordered a thyroid test to double check on her thyroid again. Really? THANK YOU! Thank you, doctor, for ordering a test that the results will be returned within a couple of hours as opposed to a couple of weeks. Thank you for looking for things that could be more obvious than just assuming there is something genetically wrong with our baby. If there is something genetically wrong, that's one thing, but at least someone is being proactive. 

Today was a good day! Thank you, Jesus, for small victories and progress. I'm not looking for an overnight recovery here...just little things to provide hope. I think it's very telling that the day before I handed it over to God. She belongs to him, anyway. Then, the next morning she's done something she's never done before. Thank you, Jesus!

Landree's Stay in the NICU: Day 6

April 12, 2012

After my mini-nervous breakdown from the night before, I had strict instructions from my husband that I was not allowed to go up to the hospital for her 9 am feeding. I hadn't missed one since she has been in the NICU. I really enjoyed sleeping in, but was chomping at the bit to get up there once I was up. However, I told myself that morning and afternoon were dedicated to AB and doing something she would enjoy. So, after we were up ate breakfast/lunch, we headed to the park to let her play for a bit. She had a blast. It was exactly what she needed, or maybe it was what I needed. I know she's fine. She's hanging out with some of her favorite people lately, and I don't think she's giving me a second thought. But it was good for me to feel like I got to spend some quality time with her doing something she enjoys!

After the park, I dropped Austin and AB off at home and headed up to the hospital to see my other girl. I had called earlier to see how things were going and if she made any progress. No. Things were the same. She still only ate 15 ml/cc and was sleeping the rest of the time (sigh). I know she needs to wake up and not sleep so much, but I love that sweet, sleeping face.

I got to the hospital to do her 3:00 pm feeding. This feeding was particularly frustrating for me. She wouldn't wake up to take her bottle. I tried and tried, but she just wouldn't eat. She took nothing out of her bottle during this feeding. I was extremely discouraged and couldn't hold back the tears during this feeding. Luckily for me, the nurses have been amazing and this particular day, she had a wonderful nurse. Good thing too, because the dreaded Neonatologist (the one I'm not particularly crazy about) came in to talk to me - without my rock (Austin), I might add. She told me that she felt her muscle tone was better today than the day before. She also mentioned she may have an oral aversion the way that she isn't showing any interest in the bottle. Then she went on to say that if this is the case it will take a LONG time to get her to where she will take the bottle, and at that point they may have to put in a surgically inserted feeding tube. This would mean we would have to take her home using this feeding tube. Again, all of this very discouraging. So, I asked her if she does have this oral aversion, does she think that's "what's wrong with her?" She doesn't take a breath and immediately says, "No. There is something else wrong." My heart sinks. Why does she have to be so abrupt and abrasive? Go easy on this Mommy's tender heart. It's hurting.

At this point, I just wanted her to leave. So I didn't ask anymore questions or do anything to keep her sitting in my presence anymore. Just go!

After she left, LC and I spent some much needed cuddling time together. She even woke up to hang out with her Mama for a bit.

After I left the hospital, I just felt so sick and full of anxiety. I knew I needed to let it go. I had to give it to God. I was very afraid to do this. It's crazy - absolutely crazy, my reasoning behind not giving it to God. I felt like in some way I had control over this situation, and giving it to God would allow me to lose that control. Seriously? Did I really feel this way? I never did, never have, never will have any control. It was the weirdest feeling. I could feel it in my chest - the worries, fears and anxieties. It was literally sitting in my chest, just needing to come out and be given to God. So, with much prayer and petition, I did. I gave it to Him. I told Him I couldn't do it anymore, even though I wanted to take the whole thing over, I couldn't. I told Him that the faith I was struggling to have, I finally got it back and I had faith that He could heal Landree and make all of this go away. It was a huge weight off, but the thing I noticed the most was when my mind started to wander to all of the different scenarios, most of them scary, about what could be wrong with LC, I was able to stop them. Whereas before, they couldn't be stopped. Thank you, Jesus.

I came home from the hospital a little bit of a different person I felt. I felt optimistic, but still cautious. I was confident that God could fix this problem. I felt confident he would. We sat down and had dinner as a family...not our whole family, but still our family. It was nice to sit there and enjoy that moment. I even looked at Austin and told him, "Landree is going to be ok." He asked me why I said that, because I know at that moment he was probably thinking, "Who are you and what have you done with my wife?" I hadn't said anything like that or felt that calm throughout this whole process.

After dinner, Nana came back over to hang out with AB while ran up to the hospital for her 9:00 pm feeding. When we got there the nurse was taking her vitals and changing her diaper. Miss Thang pulled out her feeding tube when the nurse wasn't looking. I took advantage of this opportunity to take a picture of my baby without that darn feeding tube in her news. I love that beautiful face!

We got some good snuggle time in and were able to hang out with our baby girl for a while. We were also encouraged because the Neonatologist that saw her when she first came into the NICU was back on duty. We loved, loved, loved him. Not only was he encouraging, he was also wonderful about sitting there and talking with us for a while and explaining things. He was very optimistic about LC when she first came in. That's another reason we loved him. We've agreed that if there's something wrong, like really, genetically wrong, then we'll love on her even more and work together to make the best of the situation. We'll do that and we can prepare for that. However, if there's not something wrong and it's something simple...then we're going to have a real issue with this other doctor that made such a big deal over the little things. 

Anyway, it doesn't really matter. God is the one in control of this situation and no doctors, no man can predict what the future would be. I rest in the fact that my baby (His baby) is in His hands and she rests safely and comfortably there. Thank you, Lord, for this wonderful blessing. 

Landree's Stay in the NICU: Day 5

April 11, 2012

I hate to set the tone for the rest of this post, but I can honestly say without a doubt that this day has been the very worst out of all of them. I can only hope and pray that this is as worst as it gets. If it's not, then God needs to prepare my heart for more, because I have about reached a point. 

When I got there for her 9:00 am feeding, she was a little awake and alert, which is a big deal for her. Her new "norm" is taking about 15 ml/cc in about 15 minutes. This is still so frustrating to me. That's what the nurse told me did for her 3:00 am feeding. Luckily, her nurse on duty was my favorite so far. I feel like she has really taken an interest in Landree and myself. She would literally sit down with me if I was crying and just talk. So, when I walked in to see her again, it made me feel good.

I hadn't been holding her but 5-10 minutes when a lady from the lab came in to draw blood for the genetic testing. I put Landree down, left the room, and left her in the care of her nurse, because I was not going to stick around and watch that. Especially because Landree's arms are so frail and she barely has any fat. I waited around the corner and could hear her cry - torture on me. Another nurse saw me and asked if she could help, I just told her I was waiting on them to draw her blood and didn't want to be in there. She said she'd go check on it. She never came back. That was less than encouraging. While I was standing there I told myself, "No more!" Let's stop with all this nonsense and not poke and prod at her anymore. Let's wait for the results from the very first genetic test to come back and then we can cross this other bridge when we get there. 

The nurse finally came back and told me they weren't able to draw the blood. That's when I burst into tears and asked her if that could be it. Do we have to continue on? Why do we need to keep doing this to her? I could see that look in her face. That same look that I get when a parent doesn't want to hear what I'm telling them. They aren't thinking their logic through. That irritated me. I went back in the room, and held tight to the fact that I didn't want anymore testing done until we received the results from the first test. The nurse told me she would talk to the Neonatologist about it. This was the same Neonatologist that I had spoke with yesterday. When I got back in the room, Landree was wide awake and seemed perfectly fine. I scooped her up and held her for a bit. I love it when she's awake.

I called Austin and told him that he needed to get up to the hospital ASAP. My hormones were taking over and I was afraid I was going to kill a nurse or unleash the post-partum hormone monster. I needed him to talk me through it and if we were really going with the decision to opt out of more testing, I needed him here for that, too. Austin dropped AB off at Andrea's and headed up to the hospital. Perfect timing, too, because as soon as he got there, the Neonatologist walks in not two minutes later. She discussed her spitting up issues and how frequent they were and the color. She suggested some things she wanted to try out for that. She also mentioned how she wasn't eating where they wanted her to and she felt she really needed to get to the bottom of that issue. Then, she started examining her and she showed me how Landree had poor muscle tone in her leg. She pushed her leg back and Landree sort of just went limp. She didn't fight back to push back when the doctor pushed her leg in. She explained how she sleeps with her mouth open instead of closed, that isn't "normal" either. There she goes with that word, again - "normal." It's either been used in a good way when talking about Landree or a bad way. This time was in a bad way. She started saying it more and more. "This is not normal." "That is not normal." I felt my head start to spin, like I could pass out from what she was saying to me. Then she used the words, "There is something wrong with your baby." You could've put a knife through my heart at that exact moment. I get it now. I totally get it. When I have to deliver unsettling news to parents, and they don't want to listen or they don't pursue my advice, and I get so frustrated. I get it. No parent wants to hear or confront the fact that "There is something wrong with your baby." No parent. She went on to tell me that she has no idea what it is. In fact she may leave the NICU and be home before we ever find out what it is, but there is something. My heart just broke into millions of pieces. She said that she wanted to go on and continue the testing that the geneticist wanted to do. It was at that point I couldn't argue. I couldn't be in denial about the whole thing. It had to be done. If we are going to get Landree what she needs, it has to be done.

Landree had one of her spitting up episodes. It was a very yellow-ish green color. This alarmed the doctor and she ordered an upper GI for Landree and wanted it done ASAP. She thought there could be something wrong with her intestines for it to be that color.

After she left, I don't think I'll ever forget the look on Austin's face. Rarely ever does he have the look of defeat on his face. I'm not quite sure if this was defeat, but it was close. We heard it from the doctor, there is something wrong with her. Her words cut like a knife. After she left, we were both quiet for a long time. What do you say? Shortly after, they came down to get her and take her to radiology to do her x-ray. Her nurse told me I could go, but I told her, emotionally, I didn't think I could handle it. So, they wheeled my baby down for her first x-ray, at a week and one day old. Austin stood up and grabbed my hand and told me we needed to get out of there for a while. We left to go eat lunch.

At lunch we discussed all kinds of different scenarios that might take place in our future. We have no idea what to expect for Landree. If she does have something, is it on the mild side or the severe side of the spectrum? If she doesn't, then what is causing these issues? Could it still be she just wasn't ready to come out, and she's still tired? Probably not. She was making more progress the first few days of her life than she is now. That's a hard pill to swallow.

We went back to the hospital to give her her bottle. I'm starting to dread feedings. There hasn't been anything to look forward to. She has leveled out at 15 ml/cc - that's all she wants. When we got back, the OT was there feeding her. I love the OT. She started working with Landree when she was two days old and has provided a lot of feedback. She was seeing the same things everyone else was. Austin and I stayed for a couple more hours and headed back to get AB. I don't think I've ever been so emotionally drained. It made me exhausted. Physically, I was fine. I bounced back from this delivery in no time. I didn't feel any affects of giving birth only a week prior. Thank you, God, for that.

Austin and I came home, loved on AB, ate a WONDERFUL meal prepared by our sweet friend Kelly from church. Nana came over for a little bit to give us a hug and to hear about Landree. She stayed with AB while we went back up to the hospital for her 9:00 pm feeding. We got there and the same sweet night nurse was on call that was from the night before. I changed Landree's diaper, took her temp and got her ready to eat. When I started feeding her she started having a couple of Brady's (where their heart rate drops). She would sound like she was aspirating and then Brady. This experience is so scary and very discouraging. She spit up, and again, it was that yellow color. The charge nurse instructed the doctor to be called to come see what she thought. I wish she hadn't. The night-time Neonatologist came around the corner, with her arms crossed, stopped in the doorway and just stared at us. Maybe someone woke her up? I don't know, but what a...I'll be nice...what a grouch. She didn't introduce herself to us, didn't look at us, either. I was floored. She said ordered what was called an hour feeding. This is where they would feed her through the tube over the span of an hour to where she wasn't getting so much at once. Maybe this would help with the spit up. The charge nurse tried to feed her. The charge nurse was talking out loud and throwing some ideas around, and at one point mentioned, maybe she has something "wrong with her brain." That's when I stood up (already a basket case), looked at Austin and said, "What is this? A really bad freaking nightmare?!" and stormed out of the room. First the aspirating and the brady's, then the really grouchy nurse and now there's something wrong with my baby's brain? What is going on here?!?!?!? I think I was having a mini- nervous breakdown. Austin came out and told me that I was here too much, and tomorrow I wasn't going to be. I tried to pull it together and head back in the room. My head was spinning in disbelief of everything that was going on. I couldn't believe. Oh, could somebody please just wake me up from this nightmare?!?

I came back in the room and the nurse was talking to Austin about how she is a walking miracle and God healed her three times. She put her hands on Landree and said, only God can do this for her. I sat there sobbing, listening, but having little faith it can or would take place. We've already experienced so many let downs. She told Austin to take my hand and she was going to pray. She did. She prayed over Landree, she prayed over healing and divine intervention and she prayed for Austin and I. I felt it was God that had put her there just for that to happen.

Something she said to me was, God will heal this baby - He is able; but it won't happen if you don't have faith. Oh, that word. Something that I have completely lost the meaning of over the last four days. Faith. I feel like I have none. It is a very defeated feeling. I realize that I am allowing Satan to take over the situation by feeling this way. I told myself I was going to need to work on this and just consume myself in prayer. I think I've been so much on the go, that I haven't done that.

After she prayed for us, the rest of the night went better. I felt better about things...I still just wanted answers. Our sweet nurse came back and talked to us a while and took our picture as a family. I treasure it. Of course, there is one little person missing from the picture...but someday soon it will be the four of us. I'm just clinging to the fact that Landree belongs to God and He is able to heal and able to change the situation. I have to cover myself in prayer and cover Landree in prayer. And as my best friend says, "speak good things over her."

Thank you, Lord, for this amazing gift you have given us. Thank you for these trials. I know that we are learning from this and you will use this experience for good and your Glory.