We were told this morning that we can longer "room-in" at the hospital. The NICU has begun to fill up (Lila has been flying solo a lot of the time we've been here) and there is not room for all the moms to stay. Since one of the moms complained, the two of us that were staying have to leave. This has been so hard for me today. I guess it came at a time when I was already arriving at officially being frustrated. I am tired of asking permission to see and hold my own baby. It has been hard for me to feel like her Mom or connect with her or get to know her. So last night I went to feed Lila and Braden came with me so we could try to get a video of one of her episodes to show the doctor. A well meaning nurse began giving us a little unsolicited parenting advice. She thought we should consider going home because it would be in the best interest of our other child. I am glad Braden was there. He was a lot more gracious and pleasant than I would have been. Otherwise she would have gotten the tail end of my sleepless, hormonal, emotional, Mama Bear wrath. I hesitate to even record these feelings at the risk of sounding ungrateful-there really is no way for me to ever express how appreciative we are that we've been able to stay here and for the care she's recieving. To say nothing of the endless support and help from so many friends and family. But for authenticity's sake it has to be said that this is wearing on me. I was griping to Braden that the nurses were being careless with my store of breastmilk and wasting so much of it because they said I have so much in the freezer. So I started hiding it and taking it home to my own freezer so they wouldn't think I had so much, and appreciate it for what it is (pretty much liquid gold in my book). I know that I really don't care about any of these things. I don't care that we've lived in a hospital, that I eat frozen burritos and Slim Fast for every meal, that Anabelle sleeps in the shower, that Braden and I share a twin bed (thank goodness for guardrails). I don't even care that the doctors can't tell us exactly what's wrong with her or when she will be better. Underneath it all I just feel sad not to have my baby. That's all. And with Braden's schedule and the times that we are allowed to see her I can't figure a time when I can nurse her unless I come in the middle of the night or at 4 in the morning. I feel sad at the thought of seeing her once a day and going home to our lives while she is at the hospital in a plastic tub.

I met with the doctor tonight. He still is not exactly sure what to diagnose her with. She has fallen outside the norm of any label they could give her. We are not so concerned with that, just that the dangerous behaviors stop. He feels that she made progress over the weekend. She will cry when she is hungry, stays alert and awake for longer periods of time, is gaining weight and keeping herself warm. He also feels that her tone improved a bit and she also passed her hearing screening which she originally failed. All good. Now, if she would just breathe. Like all the time. We distinguished her "de-sats"(desaturation-not having enough oxygen in her blood) from these seizure-like episodes that I keep seeing. I wasn't sure what was going on (he is still not sure) and was wondering if they were counting these as "episodes" that keep her from going home. Frankly, they scare me and I didn't really want to take her home doing it. He is looking for her to have 5 days free of desats before she can go home. He is not so concerned with the episodes I have been concerned about. He believes she has some obstruction and positional issues where her tongue ecludes her airway. Or he thinks sometimes it may be food coming back up. Because I recognize when it is starting to happen and how to handle it, he is willing to send her home with this continuing. He believes she will grow out of it. If she doesn't or needs help coming out of it, I have to bring her back. Last I checked, she has gone two days without having a desat. That means he is looking for 3 more solid days and then we can take her home. When we do go home she will go with her monitors which she has to wear around the clock unless I am bathing her. It is essentially an alarm that will help catch any periods of time where her vitals drop low enough for a certain number of seconds. It is expected that Braden and I will know how to give her CPR if needed, so we will need to take that class before they release her. We had to do that with Anabelle too. So after meeting with him I feel better. I'm trying not to plan on Friday because I can't go through that let down if she doesn't make it. But I am happy for the progress and hopeful that she'll keep it up. I think the medication is helping with the pain she experiences. I asked him what the plan is if she doesn't quit having desats and he said "growth and time". He feels that patience, wisdom, and time are the best things for Lila. The surgeries he discussed with us last time are very risky and he doesn't feel they are right for her. He will have her wait it out in the NICU for quite a while before he'd be willing to do that to her. So let's hope the next 3 days go as well for her as the last 2 have. I know that many people fasted yesterday on her behalf and I don't believe it's a coincidence that yesterday is when she started improving and hasn't had one since. It means the world to me to have felt loved and supported by our ward here and friends and family all over. I'm not sure how we'll ever be able to express our gratitude to all who have blessed and served us in so many ways. We hope to be able to return that and be as generous and compassionate when given the opportunity.

Still waiting...

Well we met with another doctor today. He came in our room, pulled up a chair, and said, "I don't know. I just don't know." He gave us all the possible avenues he's considering taking of where to go from here. He's giving her the week to sort of pull things together on her own before he transfers her to Children's Hospital in downtown Birmingham. Although the doctors are the same, the hospital has the capacity to do more in-depth, specialized testing. He mentioned the possibility of putting a trach(?) in to make her breathe through her throat rather than her nose. We're of course hoping we don't get to that point and that she pulls things together on her own in the next few days. The last four times I have gone in to nurse her she has turned purple and started shaking in my arms. It is hard for me to see. I came back to the room this morning and was telling Braden (in a choked up voice) how it broke my heart to watch her like that and that I don't want to see her like that again. Anabelle stopped playing with her toy, walked over to me, hugged me, kissed me, and said in a soft sweet whisper, "I'm sorry Mama." It made my heart feel a lot better.

I was reading in the Ensign this week a quote from Ruth May Fox that I instantly identified with and loved:

"Ever since I could understand, the gospel has meant everything to me. It has been my very breath, my mantle of protection against temptation, my consolation in sorrow, my joy and glory throughout all my days, and my hope of eternal life."

This really does describe perfectly how I feel. I am so grateful for the peace the gospel brings into my life.

What a rollercoaster...

Okay so I jumped the gun a little. Maybe. I talked with the doctor this morning before leaving to take Anabelle swimming. We were discussing how Lila was making progess and doing so much better. She said she felt like we could attribute that to the medication and was going to put her on a higher dose of one of them and a more potent kind of the other to see if it would completely clear up the problem. But when I called a few hours later the nurse told me she had 8 or 9 episodes already and that they were more serious. Lila was very pale and they were taking blood to the lab for a CBC (complete blood count) to see if she had enough blood since she has had so much taken for so many tests. They were also wondering if she has an infection that would cause that reaction. But again the tests came back okay on both accounts. A few minutes ago when I was holding her she turned dark purple and started shaking and her eyes went glossy. It looked like a seizure. The nurse told me this can be what babies look like when they are choking and that it is very hard to distinguish between choking and seizures. The doctors are considering doing a 24 hour EEG on her since nothing showed up in the previous EEG but things don't seem to be adding up just right for it to be only reflux. What doesn't fit with the reflux is the staring, glossed over eyes. They are also thinking that once the higher doses of medication kick in, that could do the trick since she gained a good bit of weight this week and the previous dose may not be effecting her like it needs to. So the bottom line of all this rubbish is that we still don't know. Sigh.

In other news, we have pretty much the coolest kid on earth to take to the pool. Like previously mentioned, Anabelle puts on her floaty suit and swims laps all over the pool by herself. She dunks herself underwater and begs Braden to throw her high in the air without catching her. Her new trick is to climb the ladder to the top step then let herself fall backwards into the pool where she dunks underwater and comes up smiling. All this while I tan and eat her snacks. What a hoot she's turned out to be.

Wahoo!

Things are looking up for little Lila. She has now been completely off the warmer for over 24 hours and is holding temperature. She got moved to an open crib which means we get to hold her now as long as she's bundled like an eskimo. And who wouldn't like to snuggle an eskimo? She also went almost 24 hours without an episode. As I was discussing this with the nurse and oozing and gushing with joy and excitement, she had one. But it was short and mild and she came out on her own without needing oxygen. She also had another one later but 2 is better than 8. But I'm feeling pretty darn happy with the progress she's making. I think I see an end in sight and hope she continues to improve at the rate she has in the last two days. I'm concocting plans for a big pink welcome home party with lots of funfetti cupcakes. But only for like an hour because I'm really tired.

Pushing my buttons...

Meet the newest Who in Who-ville

Anabelle puts this suit on and swims the length of the pool by herself the whole time we're there. And then she takes a 3 hour nap. It rocks.

MaShay is so cool.

Well the good news is I have learned to sleep sitting up since Anabelle broke my hospital bed into the upright position. She did this by pushing all the buttons on the bed about a thousand times. I pushed them all about a hundred times and then gave up trying to fix it. Now I don't have to struggle thru anymore sunday school lessons, I can just take a discreet little siesta sitting straight up. Excellent.

The neurologist said Lila's EEG and MRI were normal. She did order some tests that check for neuro-muscular disorders because she felt that Lila's tone is not what it should be (tone meaning the amount of muscular resistance she offers). The tests are specialized and take about a month to come back. These test results are the only ones outstanding-everything seems to be checking out ok. Which is a catch 22, we don't want them to find anything, but we also don't like having the "mystery baby". They have started her on two medications for reflux and I think maybe it is making a difference. It's early to say but in the last day and a half her episodes have been both less frequent and less intense. She was having them 6-8 times a day and she had only about 4 yesterday. Also they turned the warmer down to 25% and she has been able to hold body temp since yesterday morning. I am so excited about that. We are of course still hoping and praying that she will just mature out of whatever is causing these struggles.

Since it has become apparent that we will be here a while the doctor urged me to get out of the hospital. I'm not sure if she said that for the sake of my sanity or hers (it's possible that she hears Anabelle scream -singing "Tinkle tinkle yittle dars" all day and night). Either way I have gone home for a few hours the last few days to swim with Anabelle and try to establish some normalcy for her. It has been good for all of us. We are so grateful to Braden's sister MaShay who came last week to help with Anabelle.

We continue to feel so blessed and overwhelmed by love & support. We especially appreciate the prayers on our behalf and want you to know that I literally feel strengthened and carried by them.

The latest...

Not a ton of news on our front. Lila had an EEG this morning and an upper GI test this afternoon. We have to wait on the results of the EEG until Friday when the pediatric neurologist can meet with us. The GI test was to check if she has reflux and also to make sure that everything in that area is anatomically correct. Those things appeared to be ok. She did not reflux during the test but her stomach was slow to empty so they started her on reflux medication anyway, just to see if it might make a difference. So by process of elimination, we'll get there soon hopefully. She has her episodes more frequently now and she requires oxygen. There is no pattern to when she is doing it- she just doesn't breathe. The doctor said she is a mystery. We really feel confident that they will figure it out and things will start to come together. In the meantime, we are feeling so thankful for the medical care & technology available to us that has so far saved both our girls. What blessings we have been given. Not to mention the limitless supply of ice chips.

The pics above are from the birthday party we threw for Lila last week in hopes that she would want to be birthed. It clearly worked and I highly recommend it. Or what may have happened is I couldn't resist the box of funfetti cake mix another day and I didn't know anyone under the age of 5 having a birthday anytime soon so....Plus the only way for Lila to get her birthday cake was for me to eat it and pass it along. I hated to do it but there are just no limits to the sacrifices a mother will make for her children. Anabelle seems like sort of a food snob. She got that from Braden. She wouldn't eat the cake but she did pick every dot off the top.

Did I spell my own kid's name wrong?

Lila is a week old today. We are still unsure about what is causing her struggles. The Doctors said over the weekend that they would like to give her some time to mature and work it out on her own before they subject her to a battery of invasive & exhaustive tests since she already seems a bit overwhelmed and fragile. We are closing in on the period of time in which if she were going to "grow out of" the behaviors she exhibits, it would be within the next day or two. She had brain and heart scans yesterday which check out okay, at least in preliminary reports. She will have her chest scanned this morning. She had two episodes where she turned blue yesterday while I was nursing her and two more during the night where she required oxygen. Every time this happens, the go home count starts over as she has to go five days completely clear of any incident before they will release her. She failed what they call "open crib" yesterday, which is to say that they took her out of the warmer and off the IV to see how she would do, and she could not maintain adequate body heat on her own so she went back in after an hour. She is off the IV though and off phototherapy for her bilirubin scores. It is a 'one day at a time' sort of situation we have going on here.

So the universal feedback has been that we should have spelled Lila with a Y instead of an I. Um, I gotta say I still feel good about it. Braden says everyone will say "Leela". That's ok. That's when I'll say "It's LIla". They will also say "how old is your little boy?" even when I have her in a pink dress with an outrageous bow in her hair. And I will say, "Oh he's 1 month". Braden decided on the spelling of Anabelle and in 21 months not one person has spelled it right. I'm ok with that.

Lila has been dubbed "sweet girl" by the nurses here. She really does have such a strong presence of love and sweetness. She has such a gentle demeanor about her. Hopefully we'll take her home soon so we can catch up on lovin up on her.

So here I sit in my room at the hospital outside Lila's NICU unit. Anabelle is having her 5th sleepover of the week with someone new from church. Braden is at work and I'm just thinking things over. When Braden kept talking about getting married I was full of doubts and concerns about us. I wondered about a lot of things about our relationship. The thing in my mind that I always felt so strongly about was what kind of Dad he would be to my children. This was actually one of the factors that carried us through until I worked out all my other concerns. And now we have been blessed with two little girls. I always joke with Braden that we will end up with 7 girls (however after recently experiencing childbirth we may not make it quite to 7). But I tell him this because he is such a tender and sweet Dad and he's the kind of guy that should have little girls. I am thankful everyday for the kind of father and husband he is. He has been an amazing support to me this week and I am so thankful for his tender love and care for our little girls.

Real Life Superhero!

Lila Kristine Reynolds was born on June 10th at 5:27 pm. Julie was awesome and we didn't have to do another c-section!!!! We are so happy to have her and thank you all for your love and prayers. Come see us!

Reflections on Christ

A few months ago someone sent me this link in an email and I have watched it a few times since, particularly when I have felt down or needed an uplifting feeling. I thought I would pass on the love. This song is dear to my heart, especially the last part that says "...here's my heart Lord, take and seal it, seal it for the courts above". That is the feeling this song (and the videos with the beautiful portrayal of Christ's life, death, and resurrection) leave me with- which is the desire to give my whole heart to Him and rededicate myself to His service.


http://mabrystudios.typepad.com/reflections_of_christ/2008/03/reflections-sli.html

I am my Mother's daughter...

Ok so if you know me at all you know how it absolutely lights me up inside to find a bargain. I mean I have done a few thrilling things in my life- bungee jumped, rapelled off high bridges and mountains, rock climbed equipmentless (ok that was idiotic-not thrilling), white water rafted, cliff diving, etc. I have to say that I feel totally okay about comparing these activites with the feeling I get when scoring a great item from the 80% off rack. So you can imagine the elation I feel when I see a whole store going out of business- I just bubble with the anticipation of the stuff I'm going to suddenly need and find all in the same moment. So there I sit in a church meeting the other day and my friend leans over and asks me if I've heard (because I've been out of town for 3 weeks) of this grocery store going out of business. My heart starts thumping, my palms get a little sweaty, I'm feeling distracted to say the least. I begin to plot about a time to go when Braden can break sticks with Anabelle because surely this is no place for children. So I went three different times before the store finally closed. And my what treasures! Aside from the fact that the majority of our spoils were food, we also managed to score some pretty rockin household necessities. I mean stuff that is sure to invoke all sorts of jealousy and envy. I won't list them here in this public domain among friends and loved ones, but I will say those of you with June & July birthdays-now is the time to rub your little paws together in great anticipation.
This is Braden with the fabulous fowl we scored from our sale. You may have been disctracted by the coolness of his tie-dyed shirt, but I would hate for you to miss the pride beaming from his face as he realized that he cleaned, prepared, cooked and carved it all by himself. We decided to have a Thanksgiving dinner in May. It turns out it's okay to be grateful all year.

Birmingham Botanical Gardens

The other day I strolled with Abelle through the gardens while Braden ran around B-ham and ended up there (he is becoming quite the runner and has officially overtaken my ipod). Hanging out with her in nature is one of my very favorite things to do. I love to watch her wander around exloring earth matter. Her favorite toys are rocks and sticks. Which totally fits into our budget. My new step in the process of doing laundry is to empty out all the rocks from the washer after I've done a load of her clothes. They were already pretty stinkin clean before they went through the cycle because she licks them all before stowing them in her pockets. Be warned that if you are not my brother Tim or my Mom this slide show is a bit much-a grundle (thanks for teaching me that word Mom, I try to use it often to make my day funnier) of pics of my kid that are pretty similiar-not even an outfit change to speak of.

Again we reaped the rewards of Braden's company paying for travel and used them to visit his parents and brother in Tampa FL for two weeks. While he sat in meetings, Anabelle and I lounged around basking in the sun and soaking up the leisure life. Braden's parents have a perfect piece of land for kids to romp freely. I mean if I were the jealous type I might even envy what they have going on there. At the end of each day Anabelle's nails were black (from digging in the mud, burying the dog, then eating his food), hair full of leaves and dirt, face full of dog food/chalk/dirt/? She has plenty of scrapes and cuts, a decent tan, and she loves to pal around with her grandparents. She may have come close to eating her weight in horse & dog food and sidewalk chalk. Grandpa had to go out of town for a few days. When he walked in the door and hugged his wife he was holding Anabelle. She allowed it for a second then she pushed Grandma out of the hug and clung to him. All week. It may have something to do with he fact that Braden is a younger version of his dad (we like to refer to him as "the silver fox") with maybe only 2 exceptions: Braden doesn't organize his sock drawer meticulously... and I'm sure they're different in at least one other way. She got to hang with cousins ( her last words before bed were "Dak, Dak, Dak" and it's what she woke up saying). In the middle of the night she was barking like a dog several times and another night kept saying "hop, hop, hop", dreaming of the trampoline. Oh how I cursed coming back to cold weather and apartment living.

Feeling Grateful

-"There is room for improvement in every life. Regardless of our occupations, regardless of our circumstances, we can improve ourselves and while so doing have an effect on the lives of those about us."

-"We remember the Lord Jesus Christ in reverence and with love. He has done for us what we could not do for ourselves. He has brought meaning to our mortal existence."

-"We must work at our responsibility as parents as if everything in life counted on it, because in fact everything in life does count on it."

-"People wonder what we do for our women. I'll tell you what we do. We get out of their way and look with wonder at what they're accomplishing."


I took a few minutes the other day and tried to concieve the impact President Hinckley has had on my life. I would say his influence has been one of the most cherished and guiding in my life thus far. His words have without fail strengthened, encouraged, pushed, and lifted me through my years of growing up and starting a family. I remember going to Elder Maxwell's funeral and as President Hinckley walked in, the congregation began to sing "We Thank Thee O God For A Prophet". I was immediately overcome not only with his presence in the room, but with the spirit. I realized that this was the first time time I had actually ever seen him in person, and still I was a few hundred feet away from him. I thought of how interesting it was that I could feel such a deep love and connection to someone I had never met. I know with all my heart that he is a prophet of God and I am thankful for his life and service. I appreciate his example of optimism and his spirit of love and progress. And I will miss his jokes at conference.

June 15th

Christmas Pics

Dancin at the Wright Bros Museum

Reynolds Ladies

Grandma with all her grandbabies

Christmas at the beach! Outer Banks, NC

Braden's entire family gathered to North Carolina for more than a week over Christmas. We got things rolling by taking Anabelle to urgent care within the first few hours and his brother Cody also went to the ER before we could even unpack. Anabelle had another kidney infection. Which she happened to get at the same time as a flu virus. Which she gave to me. Details of the next ten days involve a lot of body fluids which Braden cleaned up every time (I love you Braden). The 15 hour ride home was one for the books. The good news is Anabelle got a few new outfits along the way and her car seat finally got the wash it should have had a few months ago. We washed it a few times actually.



But other than that it was a hoot to hang out with the Reynolds clan, as always. It is always a party to be with them and I look forward to those funny late night moments with them whenever possible. We feel so blessed to belong to this family.

Lights at the B-ham Zoo

Before Christmas we took A-belle to the zoo to see the festivities. It turns out the animals understand the Christmas season about as well as Anabelle did. We set her on Santa's lap just because he was there and she was only concerned that I not walk very far away with her bag of animal crackers. She looked him over, took his candy cane, and went on to see her furry friends in the petting zoo. The great part came as we were going home and Braden wanted to stop at Krispy Kreme. I wanted to stay in the car so Braden and Anabelle walked in together. I'm sitting in the car watching and I can only see Braden. He's not looking around for Anabelle although she's not in sight and hasn't been for a while. He studied the menu. I can see his brain rolling: "Chocolate with chocolate filling or do I get the creme inside? Lemon & raspberry, is that new?" I continue to wonder as at least ten minutes go by and Braden is acting like he is a lone man in a place of all that is good and fattening. He did forget about her once and leave her in the car for a while when she was a few weeks old, but I think by now he's used to remembering that she's ours. Finally they come out of the store together and Anabelle's face is glimmering in a layer of glaze and she is happy as a bird. Braden fills me in on the details that sum up our child- they walk into the store where she spots an off duty Santa Clause with his wife. Anabelle who has just scored loot from a similiar looking man, walks right up to him, asks to be pulled to his lap, and begins eating his donuts. And there she sat, enjoying his merry goods for the next ten minutes. And they say there's no such thing as a free lunch. Or Santa Clause for that matter. Well, do I have a story for them...

Happily, she does not care for mice. I have already told her the old "salmonella when I was 8 months pregnant with you" story.

Doin a lil' jig. Always doin a jig.

kisses for the goat

"Ello goat"

speed addiction

Ok so this is how it goes- Braden throws Anabelle in the bean bag and flys her through the air. Very fast and high and rough. Many, many times. Over and over and over again. She's not laughing or really even smiling. But don't let that fool you. You want to see a world class, pitifull crying tantrum see below where Braden tries to stop. He was dog tired and she just wasn't giving the giggles that warrant continuing through exhaustion. Each time he stopped she would throw herself at him, climb onto his chest, pulling at his shirt to help him up, curl the lip over and just let the tears flow. It was so dramatic Braden and I were laughing our heads off at our daughter's 5 star performance. She has this thing on the swings & any other activity too- never high enough, fast enough, long enough. Hmmmmm, this should be a lot of fun when she's 3. Or 13.

Mixing business with pleasure...

...in Longview, Texas. Braden happened to have a business meeting right in the little town where my dear ol grandma lives. Anabelle and I checked our schedules and amazingly found ourselves very available that particular weekend, so we went along to hang out with Grandma. I mentioned to Grandma that I had never had sweet potato pie and before I had finished my sentence she was shuffling out to the garage. She came back in with a bag of sweet potatoes and immediately started boiling them. We spent the afternoon baking the pies and I also happened to tell Grandma that I don't know how to make sausage gravy and biscuits. Same thing happened- she went to the freezer and got sausage to defrost. We had sausage gravy & biscuits and sweet potato pie for dinner that night. It was a great chance to hone my southern cooking skills. Sweet potato pie and Blue Bell ice cream is something that should be enjoyed regularly. I reckon we'll get started on that.

We also went to a fantastic park with very unique toys to be explored. We however, did not get past the swings on two visits there. It was actually quite nice because the swing was big enough to fit Braden and I so we took turns holding Anabelle and pushing each other. Her love of the swings is something unreal.

My uncle Greg (who is a personal hero of sorts to Braden because of his meat smoking skills) hooked Braden up with his own Briskette to take home. It was quite entertaining to be driving down the road and look over to see Braden with a huge pan of cow on his lap and a full quart jar of BBQ sauce for dipping.
Grandma said Anabelle is the happiest baby she has ever seen-and the most active. I think Anabelle may have worn her out a little bit. It was great to spend a few days with her and other family we rarely see.

Aldridge Gardens

We live down the street from a Botanical Garden. I absolutley adore this place. It has a lovely little lake with a trail around it, a boathouse to picnic in and feed the 456 resident turtles your leftovers which husband says he will eat but does not, and beautiful flowers and trees. We go there most mornings and walk or run and often times don't see another soul. Finding the gardens actually made me feel more at home in Alabama because it is so Virginia-esque. I took these pictures the other day when we had a fall picnic.