Landree Comes Home!

Our first day at home together consisted of every three hour feedings and entertaining a two year old in between. It was pretty chaotic. Absolutely, wonderfully chaotic! I wouldn't change it for anything. I was able to spend quality time with BOTH my girls underneath the same roof. AB is a wonderful big sister and just wants to do whatever she can to help. She loves her sister. At times, maybe a little too much...she tends to get pretty handsy with her, but overall she's very good with her.

She asks to hold her a lot. A whole lot. I let her most of the time, but for poor Landree's sake not all the time. She's very loving and compassionate and wants to be there for her little sister. I foresee this being the case LC's whole life. She's lucky to have such a wonderful big sister. 

I'm so thankful for these two amazing blessings. How lucky am I to have them? Thank you, Lord, for giving me the privilege to be their mother. I'm honored that you entrust me with their sweet little lives. My hope is they grow up to be loving, Godly women whose soul purpose in life is to please You above all else and share the gospel. I am blessed.

Landree's LAST DAY in the NICU: Day 23

April 29, 2012

Could it be? Landree's last day in this place? Yes! She was coming home - today! I'm pretty sure April 29, 2012 will stand out in my mind just as much as April 3, 2012 (her birthday) will...the day she "graduated" from the NICU. Hallelujah! 

I woke up that morning (well, I woke up several times that morning seeing as that LC eats every three hours), I was ready to go! I fed her, got my things together and sat in the windowless room and patiently waited for something to happen...{sound of crickets chirping}...nope. No one came for a while. I figured today was not going to be about my schedule at all, but would revolve around the doctors and nurses. Ok. I could wait - because, at last, we were going home!!!

I decided to take a nap after LC's 9am feed...good thing for me, she decided to take one, too. My parents came up to see her around 10:00. This was good, at least I had some company. 

It was a good day, all around for a couple of us in the NICU. I don't think I've talked much about them in the blog - and I don't know why, because they are wonderful people, but LC had a little roommate during her stay. His name is Wyatt. A precious, precious little guy who was born six and a half weeks early. Over the course of our stay, Austin and I became good friends with his parents and thank goodness for Jamie, his mom. There were a few days where I would've been bored to tears had she not been in the room to talk and keep me company. It was good to have some adult interaction! Landree and Wyatt's due dates were originally a month apart. Landree's was April 21st and Wyatt was May 21st. Dr. M decided to take Landree three weeks early, and Wyatt just decided he would come six and a half weeks early! Crazy coincidence, Dr. McClintock delivered Wyatt, also! We also found out we're going to the same pediatrician. Wyatt and Landree were in the NICU three weeks together. She was born on Tuesday and he was born on Thursday. The crazy thing...they both ended up being discharged on the same day! Two different babies, two different issues, discharged on the same day. It was almost like they had bonded in some way while being in the room together over those few weeks. I was glad to get a picture with Jamie and Wyatt before they left. We will miss them! We had some good, long talks in that NICU room. We exchanged information and agreed to get together once things settled down. I can't wait to see them again!

After the Hogans left, I was even more ancy! I couldn't wait for Dr. Khan to come down and give us the go ahead. I asked the nurse if she could call her to see when she would be in. After all, Austin was at home waiting with AB for me to tell him when to come up there. Dr. Khan said she would be down within the hour...THE HOUR?!?!...so I waited even more patiently (hard for me to do) and told Austin to leave within the hour. 

FINALLY, she got there and told me we were good to go. She examined LC one last time and I was able to snap their picture together. Afterall, this was the doctor who saved me from going bananas and transferring my child to another hospital and starting this daunting process all over again!!!! 

LC's nurse when we were discharged and who had taken care of her a few times before was Marita. I was so glad to have her again, especially the day we left. Here they are together.

LC has a beautiful pink going-home dress that my mom bought her and it's what she was going to come home in, when we thought she was coming home the first time. After we came home without her I would look at that dress and burst into tears. It was a reminder of my baby who was living at the hospital and not at home. Austin had to hide it from me. Since AB was able to be there on the day LC came home, I put them in their matching big sis/little sis shirts and hot pink pants. It was fitting for how long AB waited to be with her little sister.

They wheeled LC and I out and we were able to put her in her carseat and GO HOME!!!! I almost couldn't believe it. It was surreal actually leaving the hospital with my baby.

I've had AB's bouncy seat and swing out for a couple of months, anticipating LC's arrival. That little bouncy has been staring me in the face this last month waiting for my baby to be in it. Another thing that made me cry every time I looked at it. Yesterday when we got home, I walked over and put LC in it. Perfect. She was home. Exactly where she needed to be.

Landree's Stay in the NICU: Days 21-22

April 27-28, 2012

I'm very fortunate that Landree has had some amazing nurses up to this point. She had the same nurse for about four days, and I can't tell you what a difference that made. The nurse took the time to get to know Landree and what she needed to work on, and she made the best decision she could make for her - bottle feed and not gavage. I felt that this nurse is a big reason Landree started making the improvements she had. She took the time to feed her and not give up on her after about 15 minutes. Needless to say, I spent two full days up at the hospital this week feeding LC and she tends to take the bottle best from me, so I think this helped with her progress, also. 

Friday morning I wasn't able to make the 9am because AB's MDO didn't start until 9:15. After I dropped AB off, I headed up to the hospital. I walked in to find our nurse, Donna, gone (boo, hiss!) and a new nurse in her place. I do try to have an open mind about each nurse and be optimistic that they will love Landree as much as the last. I instantly got a fake, insincere vibe from this nurse...unfortunately. I still tried to overlook it and hope I was just wrong. When I asked her about her feeding she told me she at 40 ml....then she changed it to 45 ml....and told me she gavaged the rest. When I asked her why she took this low of a volume, she said she was just very sleepy and did a lot more "munching" than sucking. I tried, tried, tried, to not lose my cool. And I didn't. But I was mad. Very mad. Seriously? You expect me to believe that the best this baby would give you is 40 ml? I don't think so. She hadn't done 40 ml in like a week! The least she was taking was 60 ml (her goal being 70 ml). I had to turn around and walk away. I was afraid I was going to say something I'd regret. This fired me up! I wasn't about to come this far to have Landree's progress on the decline because of a lazy nurse. That's all it was. Sheer laziness. 

By this point, she had been on only bottle feeds for over 24 hours. I was so impressed and encouraged by her progress. But I felt this nurse had read back in her charts about her lethargy, trouble sucking and her syndrome. My guess - it was all just a convenient reason to give up on her after 40 ml. Oh, no. No, no, no. There are no excuses to expect anything less than her best...even at three weeks old. Her condition is FOR SURE not going to be an excuse nor a crutch to her. I don't intend to start that bad habit. I was so disheartened this nurse had. I pondered on what to do, and realized I hadn't asked her how she did on her night feedings. I calmed down a bit, and did consider I was just overreacting. I was tired of being there - perhaps I was just taking it out on this nurse. If she did poorly at her night feedings (with a different nurse, which by the way - I loved!), then maybe it wasn't this nurse's fault. So, I got up, walked around the corner and {calmly} asked her what her volumes were like in the middle of the night. She seemed irritated with me. Again, I kept a calm composure. Ready for this?  Midnight - 70 ml, 3 am - 65 ml,  6 am - 70 ml. BAM! Like I said, LAZY!!!! I could tell she recognized that her 45 ml feeding with Landree seemed really ridiculous. I politely said, "Thank you." and went back to holding my baby. Oh, but first, I asked to speak to the doctor. I had to discuss this with her. 

I have to be honest, in some ways, I am thankful for Nurse Lazy. It really got me fired up to the point to where I knew I had to take my baby home, and SOON. Very, very soon. No more of this, "We'll give it a few more days to see how she does" business. No, we are going to something NOW!!!!! Like Austin said - that poor nurse. She had no idea that she gavaged the wrong baby that morning. That did not fly with this Momma. Plus, I was just ready. I was starting to nit pick...at everything. That place was starting to bring out the worst in me, and I knew I had to bring my baby home. She was ready. I fully believed with all my heart she was ready, and I really hadn't felt that up to this point. 

Dr. Khan came to talk to me. Thank goodness it was Dr. Khan. The first thing she commented on was how impressed she was with her volumes. I agreed and told her that the 40 ml this morning wasn't ok with me and I knew she could do better. She more or less cut me off mid-sentence and said, "Ok then, mom, let's do something about it! Let's get her out of here. Can you room in with her asap?" I didn't hesitate. I told her I could and I would do it that night. She agreed. So, for the next 48 hours, I would b calling the NICU my place of residency, also. I honestly wasn't looking forward to it, but I was looking forward to bringing my baby home, and if this was the only way - so be it. They were to take out the feeding tube and she would get straight bottle feeds from me, and if she met her goal for 48 hours, then she would be ready to go home Monday. Yes! Thank you, Lord, yes! Monday sounded amazing! 

I didn't stay for her 6pm feeding on Friday. I went home to pack a bag and spend time with AB before the weekend. I knew I probably wouldn't see her hardly at all. This broke my heart. I couldn't wait for all of this to be over. 

Austin headed back up to the hospital with me for the 9 pm feeding and to get me situated before he left to go back home. LC was wide-eyed and ready to eat for us. I love looking at her beautiful face WITHOUT that darn feeding tube. Love her.

They put LC and I up in a cracker jack box of a room with no windows, but I couldn't complain, I was with my girl. Austin told us "good-bye" and went home to AB. It was just me, LC and my trusty Kindle Fire to get me through the next 48 hours (seeing as that there was no tv in that room!).

Well, it didn't take me long to remember what it was like to have a newborn. Up every three hours feeding, and feeling utterly exhausted. It was wonderful. Absolutely wonderful - no complaints here! We had our same wonderful night nurse, whom I thanked over and over for taking the time to bottle feed and not gavaging. I felt like it was her efforts that gave her that extra push in being ready to go home. Then Saturday, we had another nurse that has taken care of LC a couple of times before. I love it when we know our nurses. Makes things so much easier. Since she had done AMAZING on her nightly feedings...eating 70-85 ml at each feeding, and doing the same well into the next day, our nurse called the doctor and told her she really thought LC was ready to go home. She complimented us both and told her she felt that we were good to go. Dr. Khan agreed, and instead of Monday, said we could go Sunday!! What?!? Really?!? We had it nailed down? I was in disbelief.

So, Landree and I just kept at it. I wasn't taking "no" for an answer from her. If she started to get sleepy, I burped her, moved her around, whatever it took to get her eating again. She always did. She didn't let her momma down.

It was bath night, and since I was staying there with her, I gave her her bath. It felt good to do normal mom things with my baby, instead of having strangers do it for me. After bath time, I put her in one of her new onsies and pants I have been dying to put on her. And what's an outfit without a big bow??? We needed one of those, too - better start practicing now, LC.

I was so excited for the next day. I didn't even mind the every three hour feedings and thinking about getting little sleep. Who cares! I was going home, and taking my girl with me. I couldn't have been more excited! Prayers were being answered. God is good. All the time.

Landree's Stay in the NICU: Day 20

April 26, 2012

I got up to the hospital today, to pull another all day for the four feedings. I decided to skip out on her 6pm and head out to get AB. She's been voicing more and more her thoughts about me going up to the hospital, and she's starting to regress in potty training. She's making a lot of reference to LC when she has accidents and just not wanting to do things in general. I know it's completely normal, but I at least thought the regression wouldn't start until LC was home! So, I went to go get her and hang out with her for the evening.

LC did a great job today, as well. She took the full amount in her bottle every time. I was so proud of her. A couple of times, she even took more than her goal of 70 ml. Dr. Khan came by today to talk to me. She went on ahead and ordered that LC take every feeding from the bottle. This was great news! Austin and I feel that sometimes the nurses get busy (or lazy) and just gavage her instead of giving her the bottle because it's easier. We realize she isn't the only baby that they are responsible for, but we also realize it's easier just to tube feed her if they can. So, now that she has orders to be bottle fed every time, I feel like we are going to get some where. I hope that some where is home!

Because I left early, I came back up for the 9pm feeding. Another change made today was I started reintroducing breast milk. I'm hoping that now that she's awake and alert and her spitting is under control, we can do at least every other feeding breast milk. I don't want to take her off the formula completely, because I feel that has really helped her spitting up. When I came back at 9pm, it was an all breast milk feeding. It made me feel good...like all that hard work is paying off again. I left today feeling very encouraged by her progress...but still wishing the doctors would just observe her for another day or two...and let the girl come home. 

I snapped some precious pictures of her today. She loves sleeping with her hands up by her face...like a little angel. My little angel.

Landree's Stay in the NICU: Day 19

April 25, 2012

Today was a long day. A very long day. I dropped AB off at Andrea's early and then headed to the hospital to be there for all of her bottle feedings at 9am, 12 noon, 3pm and 6pm. I swear sitting at that hospital for hours is more exhausting than running around all day. It's worth it, though. LC's nurse for the last few days (whom I really liked and appreciated) made the observation that she takes her bottles from me better than she does anyone else. I was thinking this myself, but I'm her mom and maybe my view is a bit skewed. Anyway, she felt that if I came up there for the whole day, that the doctors would note this and her chances of going home would be sooner. I usually come up to the hospital, stay for at least two feedings and then get home to AB. So, today I came up early, stayed for all of them, had Austin pick AB up and then head home. For the first time I opted out of coming to the 9pm feeding. So, Daddy did that one on his own. I was worn out. 

It was a successful day, though. LC took every feeding from me and met her goal every time! I was so proud!!! I feel that she's really getting the hang of it and ready to come home. Please, baby girl. Please, please keep it up and show those old doctors you mean business. 

They bumped her goal up to 70 ml, and she needs to taking this amount at least, every feeding. She's up to about 6 bottles a day as opposed to 4. The Neo I talked to that day suggested I come in for an overnight stay to see if she takes all her bottles from me four 24 hours straight. I'm trying not to find this insulting. I want to holler out, "This ain't my first rodeo, alright!?!?" Clearly, they're just doing they're job and they have Landree's best interest at heart here. It's just that after doing this once already, and just being her mom, I think I know her best. 

I realize that not every mom that comes through the NICU is dedicated and serious about their babies best interest...I'm pretty sure there's at least one of those cases now. There's a baby down the hall that screams almost the entire time I'm there every time. He/she just cries and cries and cries and cries. From what the nurses were saying, without saying it, I believe he/she is a drug baby. He/she is absolutely inconsolable and nothing can soothe him/her. This breaks my heart in a million pieces. I just don't understand someone who can abuse their body when another life is growing inside them. So...when the doctors take the "extra cautious" approach, I have to keep these things in mind. 

Until the day comes we get to bring our sweet LC home, I'm just relying on God's plan and timing. His peace is my comfort and I'm keeping my eyes set on Him and His plan at all times. Thank you, God, for your perfect plan, and your perfect gift to me. I cherish her so much.

What About Annabelle?

Even though our lives have been turned upside down a bit over the last few weeks, I have tried as hard as I can to make time to do fun things for my sweet first born. She's really been a trooper, and really, I think this time is just one big play date for her. So many wonderful friends have reached out and volunteered to watch her and have her come over and play. Friends have dropped off presents for her and I love watching her face light up. Thank you to everyone who has reached out. 

We've made a couple of trips to the park in between hospital visits. I don't know if it's because I have a newborn, but AB seems to have grown a ton! She looks so big to me! I love watching her play. She's so happy and full of enthusiasm. She's getting so big...just look at her climb!!

Another incredible blessing that God has blessed us with is my good friends at FBCG, Amy and Lindsey, have offered to let me bring AB to MDO for a short time, while Landree is in the NICU. I'm so blessed by this. Not only does it help me, but AB loves, loves, loves "church school" as she calls it. She absolutely loves playing with her friends and on the playground. I was able to stick around the other morning while the firemen came to visit. I'm so glad I did (and no, not because there were hot firemen around), but because I was able to capture AB seeing a firemen and fire truck up close for the first time. You can see by her expression, she wasn't as crazy about the firemen....especially once they got all geared up.

However, she loved being outside by the big firetruck. She wouldn't go inside...but she would pose in front of it. She wanted Lindsey to go with her, though.

Annabelle and her sweet friend, Avery. It's so neat because Avery's mommy was my sweet friend growing up at this church. I love seeing our girls together. They're sweet friends.

Last Monday was western day. AB looked so cute in her little cowgirl boots!

So, AB has had some fun out of this crazy time! I can tell it's starting to get to her a little bit. She's starting to make reference to me leaving to go to the hospital so much, and having frequent accidents. When we ask her about it she says, "Well Landree goes poo-poo in her diaper!" Hmm....I see a correlation here.

One last picture, the other day I noticed a white, wiry hair coming out of my head! EEEK!! Already the last three weeks has aged me. Oh, well. I love my girls. They're worth it. I'm sure this isn't the first grey hair they're going to give me, huh?

Landree's Stay in the NICU: Day 18

April 24, 2012

Happy three weeks to my sweet girl! Three weeks has flown by, and not in the way that I want it to, either. If I had it my way, the last three weeks would consist of being at home with your Mommy, Daddy and big sister, living a life full of chaos and sleep deprivation. Sounds wonderful to me. Instead, we've spent the last two and a half out of those three weeks driving back and forth to the hospital 2-3 times a day, and holding you in a cold hospital room while other people care for you. Don't get me wrong, LC, you're completely worth it. I would drive to the moon and back just to spend time holding you...I'd just prefer to love on you at home.

You have been doing amazingly well with your feedings, lately. Unfortunately today wasn't as successful; but that's ok. You've had a busy week working really hard. You're allowed a day to rest. That's just it, too. If you were at home, would we be this up in arms if you didn't finish the last 5-10 ml of your bottle?? No. Probably not. Everything is magnified because you are still at the hospital. I can't wait for you to get out of there! 

However, tonight when  I got there for your 9 pm you were fussing and carrying on so! I thought something else was wrong with you, but no, you were just hungry. Good girl! Tell them that you are completely aware that you need to eat and you're ready to do it! I quickly took your temp, changed your diaper and fixed your bottle. This was you, right before you ate. Not too happy about waiting on me to give it to you...

Annnnnd.....this was you after your bottle.

What a difference! You were ready for that bottle, and you took the whole 65 ml in 15 minutes. Good girl, LC! Mommy was very proud of you! Now, let's just do that for every feedings and prove to these doctors you are ready to come home to your family. That's what we want so bad. I love you so much, sweet girl. You're proving to be a fighter, already. You don't let anything or anyone tell you how you're going to be or what you're going to do. You show us! You are an inspiration, and I love you so much!

Landree's Stay in the NICU: Days 13-17

April 19th-23rd, 2012

If you've been following these posts, you've noticed the posting hiatus I've been on the last four or five days. This is because of the news we received on Thursday, April 19th. I needed the last few days to take in and process what we were told. Thank you for being faithful and praying for us and continuing to do so as we may (or may not) face some challenges as a family. God is good, and He knows the future...not us, not any of the doctors, only God.

The last few days run together in my head, so I'm not going to be very good about separating them out and telling what went on on which day. Let me start with the news we received on Friday...

I was actually taking advantage of a nap since AB went down for one, too. I was woken up by my phone ringing...it was Dr. Kahn. She told me that the results to the genetic test were in, and they found the problem behind Landree's feeding issues and difficulties. She is missing one of her chromosomes, and due to that there is a condition that coincides with the absence of this chromosome. You'll have to understand and respect my decision, for the time being, to keep the name of this condition private. I am not yet familiar with everything that goes along with it, and with time I know I will be the expert on this condition. Until then, I am trying to avoid others from researching it and drawing their own conclusions and becoming "experts" on it. I also don't want to set Landree up for people having certain expectations on what she is going to experience. I want others to treat her like a "normal" (whatever that is!) individual that isn't facing difficulties such as this one. Who knows if she will face difficulties. There is a spectrum of which we judge this condition, and who knows which end she can be on. Again, only God knows. I believe that God can heal and even though she's labeled, it doesn't mean she will show signs of anything. I am  a little protective of her...and myself. I'm guarding my heart and hers from people's, sometimes, hurtful comments. This has nothing to do with denial or shame. I do not deny she is missing a chromosome and I am in no way ashamed of it. Everyone chooses to handle things differently. Sometimes publicly, sometimes privately. Right now, I'm public about her having it, but private about what it is and sharing every little thing about it. 

All I can tell you is, I have a beautiful little girl. She has beautiful eyes, a precious nose, the sweetest "smile" (I don't care what the nurses say, she IS smiling at her Momma!), and the sweetest demeanor. I love this little face more than anything.

The doctors are encouraging in some ways. They all agree that if you were to walk past her in public, you would never know she has an underlying condition. The geneticist said the same thing. No one will probably ever know, if they didn't already. Right now, she's a newborn. She does everything a newborn does. She eats (just at a little slower pace), she poops, she pees, she cries and she coos. She's as much of a newborn as the next one. As far as I'm concerned, she can have a limb growing out of her head and she'd still be my beautiful baby.

You have to understand, too, I am sort of in the "grieving" process. I am grieving a baby that I did not have. When you go to the hospital, deliver your baby, you have a certain expectation for how things are going to go. The baby will pass all their tests, eat well, and then get to come home as expected. This was the case with my first baby, but not my second. Things have been much, much different. So yes, I am grieving that things didn't go as expected. They did, however, go the way God expected. God knew all along that they baby I would have would be "different" by our standards, but not by His. She is no mistake. God made her how He wanted her. My dear friend, Kasi, sent me a text one day and told me to read Psalm 139. Thank you, Kasi, for this. I knew this verse...only partially by heart, though. Now, it's engraved in my heart. I have to share it. It's beautiful. It's about my Landree.

PSALM 139: 1-18

O LORD, you have searched me and known me!

2 You know when I sit down and when I rise up; you discern my thoughts from afar.

3 You search out my path and my lying down and are acquainted with all my ways.

4 Even before a word is on my tongue, behold, O LORD, you know it altogether.

5 You hem me in, behind and before, and lay your hand upon me.

6 Such knowledge is too wonderful for me; it is high; I cannot attain it.

7 Where shall I go from your Spirit?

8 If I ascend to heaven, you are there! If I make my bed in Sheol, you are there!

9 If I take the wings of the morning and dwell in the uttermost parts of the sea,

10 even there your hand shall lead me, and your right hand shall hold me.

11 If I say, "Surely the darkness shall cover me, and the light about me be night,"

12 even the darkness is not dark to you; the night is bright as the day, for darkness is as light with you.

13 For you formed my inward parts; you knitted me together in my mother's womb.


14 I praise you, for I am fearfully and wonderfully made. Wonderful are your work; my soul knows it very well.

15 My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.

16 Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.

17 How precious to me are your thoughts, O God! How vast is the sum of them!

18 If I would count them, they are more than the sand. I awake, and I am still with you.


Wow. That is powerful stuff. Thank you, God, for knowing what tomorrow brings and already being there. Thank you for being the one who intricately weaves us together and makes us in your image. Thank you for already knowing. This is my strength and my comfort. Thank you for entrusting this child with me. The medical world considers her "imperfect" to me, she is perfection. Thank you for this gift.

Saturday, April 21st was Landree's original due date. She hit 40 weeks on this day. It was crazy because about this time, she started waking up and meeting her feeding goals. She's really taken off on her feedings. She meets her goal more than twice a day now. This is huge for her. Thank you, God, for this! Austin and I are so proud and so thankful for her. Speaking of Austin. What would I do without this guy? He's been my rock and my source of encouragement. Don't get me wrong, he's had his bad days, too, but for the most part, he's right there along with me encouraging me every step of the way. We were leaving Landree the other night (which is really hard for us to do EVERY NIGHT). I thought Austin was right behind me, but he was still bending over her little bed talking to her. Melted my heart. He's the best Daddy. He loves his girl/girls.

We are so in love with this little girl. Just like we are with her big sister. It is crazy how your heart makes room for more than one. I've heard that with any siblings, you love them the exact same, but in different ways. I guess because Landree has this condition, I already love them in different ways. Not anymore or any less. Not any better or any worse, just different. She has a certain "look" sometimes that is so precious, my heart can hardly take it. It's only when she's awake, and those times have been few and far between in her first weeks of life, but I finally caught it on camera. Love. This. Face!

Yes, we may face some challenges and some delays in her development, but we are completely prepared for what life will bring. I have to try really hard not to thinks so far ahead into the future. That creates a lot of anxiety. A good friend told me today, "Keep your head where your feet are." How simple is that? But it has so much meaning. Each time I try and get ahead of myself, think about where my feet are, and focus on exactly where I am right now. God is in control. It's ignorant to think my worries and my anxieties are too much for Him. He's got this.

Thank you God for these trials. I am growing so much from this experience. It's a growing experience just learning to trust you with this precious gift. She is not mine, anyway. She's belonged to you all along, but I am honored that you entrust me with her. My pastor said something to me the other night, and I've been thinking a lot about it. Having gone through this and learning about trusting Him and dealing with a child that may not fit the "normal" mold, this will become my ministry. I can use these experiences for the good and to minister to other moms/parents going through something similar. I would be honored to walk away from this only to bring glory to God's name and be thankful for this experience. God is good. All the time.

Landree's Stay in the NICU: Day 12

April 18, 2012

I called that morning to see how her 9 am feeding went. Judy, the OT (whom we LOVE)had been there that morning to feed her. She only took 40 ml (grrrr...), but that's ok. We're still moving in the right direction. I go off the phone with them and told them I would be up there in a little bit for her next feeding. 

I was still contemplating moving her to Children's. The lady that I had talked to from Children's the day before had made some phone calls up to different people at Medical City, so I was half expecting someone to come find me when I got up there that day. I knew I had to start being more vocal when it came to LC. These doctors just aren't providing me with enough feedback. I know she's not a "sick" baby, and I certainly don't claim her as their only baby...but a report about her progress or an action plan would be nice. 

When I got there I found LC very alert! Judy was still there and she was commenting on how awake she was and how she's improved so much. Thank you, Judy, for SOME FEEDBACK!!!

Judy had told me she made modifications to her feeding by adding a thickener to her bottles. This was just something they do for babies over 37 weeks who seem to have difficulties swallowing or choking on their feedings - which sometimes LC does struggle with that. She took the bottle great for Judy, and so we're going to try this for a while.

We went on ahead and gave her a bottle a little early because she was so wide awake and perky! It was wonderful to see. That girl guzzled the whole 65 ml from me in no time! She did awesome! I was so proud!!! Finally, I can see a small glimmer, but there's at least a little light to the end of our tunnel. She's on the road to going home, I truly believe that.

A new Neonatologist was on call yesterday, one that we haven't met or even heard of. I asked the nurse if she was available that I could speak with her about Landree's improvements, especially seeing that I only see the doctors when they don't have good news. She came in, sat down and made me feel very comfortable talking with her. Throughout my conversation with her, I felt that she was really taking an interest in Landree. She would even stop to make comments on how alert Landree was and how eager she looked to eat. Could it be that there is such a thing of a Neonatologist who actually takes an interest in their patient. Hmm, what a concept. I asked her since LC was starting to become more awake and alert, could we start upping her bottle feedings to more than four times a day. She was totally on board, and said that if/when she's awake and alert during a feeding that is supposed to be gavage, then we would try a bottle - THANK YOU! Thank you, thank you, thank you Dr. Kahn. How refreshing! I really enjoyed speaking with her. She still had to say that she agreed with the other two doctors about there being an "underlying issue" causing Landree to take so long with her feedings. Blah, blah, blah. Yeah, yeah, ok, whatever! Bottom line, she's eating, she's alert, she's gaining weight and she's making progress! Thank you, Lord!!! I found out through conversing with her, she was a mom of four. I'll tell you what. Dealing with a doctor who doesn't have kids, as opposed to one who does - it makes a big difference.

After Dr. Kahn left, a little while later the NICU manager came to talk to me. She said she had received a call from someone at Children's, and she heard I wasn't happy with the care that Landree was receiving. I wanted to look at her and say, "Yep! That's right! Your doctors are grouchy, blunt, and flippant." I didn't. It wasn't her fault. So, I just told her that I wasn't trying to cause a stink or get anyone in trouble. I just felt that since Landree wasn't a "sick" baby, her case was being overlooked a little bit, and it was so hard to get a doctor to talk to us. I gave her a few examples of how I thought the doctors could've handled dealing with us a little better, and how we never hear from them about her progress. She apologized and assured me the issues would be addressed. I told her, though, thank goodness for Dr. Kahn who had come in right before her. I still might have had my mind made up to move to Children's if she hadn't sat down with me and explained things. All in all, I felt a lot better about staying. It was brought to a couple different people's attention, and hopefully things would change.

I left my sweet LC awake and bright-eyed that afternoon. Which I think makes it harder.

Austin stayed home with AB this night. He sort of has to split his time between the two of them in the evenings, now. I'm home a lot more with AB during the day or morning, but Austin isn't. So, I went back up to the hospital for her 9:00 pm. I gave her her bottle, and she did pretty good with it, got some extra snuggles and kisses in, and I headed back home. 

I know this is just a short season in my life, but it feels like it could take forever. I feel like I'm going to be driving up to this NICU

April 18

"PEACE IS MY CONTINUAL GIFT TO YOU. It flows abundantly from My throne of grace. Just as the Israelites could not store up for manna for the future but had to gather it daily, so it is with My Peace. The day by day collecting of manna kept MY people aware of their dependence on Me. Similarly, I give you sufficient Peace for the present, when you come to me by prayer and petition with thanksgiving, If I gave you permanent Peace, independent of My Presence, you might fall into the trap of self-sufficiency. May that never be!

I have designed you to need Me moment by moment. As your awareness of your neediness increases, so does your realization of your abundant sufficiency. I can meet everyone of your needs without draining My resources at all. Approach My throne of grace with bold confidence, receiving my Peace with a thankful heart."

This was exactly what my heart needed to hear. I need to stop looking so far into the future, and playing out scenarios that may or may not ever be. I need to take it day by day, minute by minute and rest in the Lord's peace. I can't lie...it's not easy. But if I truly focus on the minute and consuming myself with that Peace, I know God will provide exactly what I need.

Thank you, Jesus for being my Peace.

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!!!!!