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!