Free at last, free at last...

Last Friday, May 8, at 3pm, we finally stole Laney out of the NICU and got her home! Unbelievable. We've been smiling ever since, and haven't looked back. Her last antibiotic dose was Thursday night, so they told us that if she passed her car seat test, we could probably go home the following day. Apparently some kids can't sit in a car seat for 90 minutes coming straight out of NICU. Laney tried her car seat study on Thursday and didn't quite pass, but on Friday morning we suctioned and got the bugars out of her nose and she passed with flying colors! She also had a hip ultrasound to see if she had hip displaysia which is common in babies that had low or no amniotic fluid. The ultrasound revealed that her left hip is dislocated. We are taking her to see a pediatric orthopedic doctor tomorrow and he will check her out and probably put her in a brace, and if that doesn't fix it, she may need surgery at some point. But if that is all she comes away with after all she has been through, we will truly have been very lucky. Getting Laney home on Friday and being able to wake up at home, on Sunday - Mother's Day - was such a huge treat!

Since getting her home, Angie and I haven't done much except feed Laney and hang out. Something we haven't been able to do for a long time. Angie took Laney to her pediatrician yesterday, and he gave her the once over, plus her 2 month immunization shots (3 of them). She didn't like that much. Home health comes today for physical therapy (she still has a little bit of range-of-motion issues in her arms and legs). I'll probably not work much in the next couple weeks until we get settled in well at home. Angie will be studying when she can in order to pass her nursing board exam sometime in the next6 weeks.

So I guess that's the end to this portion of our adventures with Laney. Now the fun begins. But looking back on it, the bedrest, the time in NICU, it wasn't all that bad since the outcome was good. That's all we were ever worried about, and now that the prognosis is looking positive, the whole experience can't feel negative. There are many things we won't know about Laney's health for a long time, like how fully her lungs will develop or what issues might come up, such as asthma. Or how well her neurological development will progress. But most of the symptoms that usually lead to long term problems never materialized in Laney, so we have confidence that she will be completely healthy with no long term issues. Right now we're not worrying about those sorts of things. Instead, we worry about how much she is eating and growing, how to keep her from getting sick, and all the other normal things parents worry about in a newborn. We are sure to just stop and enjoy her too. She is 11 weeks old now, but her due date is tomorrow, so really, she is a newborn. She weighs 5 and 1/2 pounds, has hazel eyes, a little bit of hair, and looks more like her mom than her dad. (Depends on who you ask) Like all parents, we are very proud of her, but after what she has been through, we know she's a fighter too. Guess we better get ready because a year or two from now - no doubt we will have our hands full.
Stay tuned for more adventures with our amazing little miracle!

The Meyer Family

The Perfect Mother's Day Gift?

I'm probably jinxing us by saying this, but it appears that there is light at the end of the tunnel. Laney has four more days of antibiotics, and after that, we may be on our way home. There are a lot of things that are up in the air right now that will have to be resolved, but most of them are relatively minor. It's crazy to think that only two weeks after being put back on the ventilator, we may head out the door.

It's an obvious understatement to say that Laney has made significant progress since being extibated from the ventilator last Monday. As soon as she was extibated, she seems to be a new little girl. She desatted much less frequently on her oxygen saturation. She needed less oxygen through her cannula than she used to need. Her heart rate is 10-20 beats per minute lower. Lots of positive steps forward. The doctors and nurses were encouraged. From there, she has just continued to make steady and quick progress. She hasn't needed a feeding tube for days, but instead takes all of her milk either by breast or by bottle, and she goes back and forth pretty easily (most of the time). This was one of the big steps she needed to take to go home. She has no set amount of food she needs to consume, other than they want to see positive weight gain every day. And every day, she is gaining weight! They removed her caffeine (helps preemies with breathing regulation ) a couple days ago (she was on a minute amount) and she seems to be doing okay without that. She is mostly off the oxygen cannula altogether, except at certain times during deep sleep; hopefully that will only last another day or so.

They are giving her a bunch of her shots at the end of the week (hepatitis and other immunizations), and if she maintains her current milk intake, weight gain, and lack of oxygen needs, we will probably go home then. I can't believe we're saying that, but yes, we may go home next weekend. What a perfect Mother's Day gift that would be.

Dodging a bullet

A lot has happened in the last several days, most of it not good but ending on what looks like a positive note. Since being intibated, Laney stabilized fairly well, although she certainly hasn't been entirely comfortable with a breathing tube back down her throat. She hated it before and she hates it now.

On Saturday the doctors decided to pull some spinal fluid to make sure Laney didn't have meningitis, but they didn't get to it until Sunday morning. By afternoon we had the results - it looked like she might have meningitis. This was devastating news. Her primary doctor suspected that her E. coli infection in her urinary tract must have migrated through her blood stream to the brain, then into her spinal fluid. For those who don't know, meningitis can cause a lot of bad things to happen, very bad things. If she did have it, our only hope was that they caught the entire infection soon enough that it never flared very intensely. However, the doctor wanted to have a specialist look at everything on Monday to confirm the diagnosis. We went home very worried.
Monday, however, was a new day. The specialist came in and thoroughy looked over all the available information, and came to the conclusion that she does NOT have meningitis. Instead, it appears that she has pneumonia. I can't say that Angie and I love pneumonia, but you've never seen two happier parents knowing their infant has pneumonia. What a blessing! The doctors were very happy with this news. Her treatment now is to stop one of the 3 antibiotics she is on, and change one of the others to something else. She will continue antibiotic treatment for 9 more days. And she wil hopefully be extibated tomorrow, assuming she continues on her path toward recovery.
We aren't out of the woods yet, and even when this step is done, that just puts us back on the path of getting out of here, and our journey on that path is far from complete. But tonight we feel like we might have dodged a big bullet, and we can't help but be happy, despite the fact that Laney is still uncomfortably lying in her bed with that breathing tube down her neck. Tomorrow is another new day, and hopefully we'll jump that hurdle when we get there.

1 step forward...2 steps back...Make that 5

It is time for an update. Kevin actually wrote one for a few days ago but luckily had not published it yet. Laney turned 8 weeks old on Wednesday. She was off everything but her feeding tube and we were actually on a great path to getting that out. Thursday morning things changed pretty quick. Laney has an infection. It hit her pretty fast and hard. Most of Thursday was a little dicy and we were on the verge of having to reintubate her and put her back on a ventillator. She was just so sick she didn't have the energy to breath. Luckily the doctor and nurse caught it quickly and got her on antibiotics quickly. We ended up putting her back on C-pap and that really helped her through the night. Friday morning she seemed to have a little more energy. That means she could cry at us a little and let us know she was hurting. Her labs were shocking to nurses and doctors. It looks like she is putting up a good fight but obviously a very sick kiddo. This morning her labs weren't better, and actually looked a little worse so they started another stronger antibiotic. She is just so exhausted because she isn't sleeping because she is hurting. So they have her back on C-pap because she often gets stubborn and decides not to breathe. They are checking her for everything and running a wide array of tests. The doctors have been great about keeping on top of her. The nurses have been very proactive about reacting quick when somethings changes. It is now 5 hours from when I started writing this blog and Laney is on a ventillator. She got so tired that she just couldn't breathe on her own any more. She should only have to be on it for a few days, at the most, so she can get some rest and allow time for the antibiotics to work. We know it is in her best interest but we can't help but feel frustrated, disappointed, and relieved all at the same time. It is nice not to have to watch her struggle so hard just to breathe but so frustrating to feel like we have headed backwards. We are optimistic this will be short term and provide her the help she needs to fight the infection then maybe we can get back on track for heading home. I will end with some pictures we took before the circus of the last 3 days. The last one is Kevin feeding her first bottle.

Love,

Kevin and Angie

Laney's Easter Update:

Happy Easter Everyone! Wow, my first real holiday! Mom and Dad said I wasn't born quick enough to get on the Easter Bunnies radar screen this year. Rats! No Easter basket. They said for sure next year the Easter Bunny would bring me something. Luckily, Grandma knew the Easter Bunny wasn't coming so she made me a little Easter basket with books and blankets. Thanks Grandma!

I have lots of news for everyone today. Since mom and dad last updated you I had an eye exam. I HATE them. I keep hearing people say that when I scream like I do with an eye exam it is good for my lungs. I tend to disagree. My throat is sore after...what is good about that? But the doctor said that my eyes are doing ok and I don't have to have another exam for 2 weeks!

We had a little craziness here the other night. In one of the sections of the NICU some steam was leaking in from a pipe that broke somewhere in the building. Apparently it go really hot and humid in that section so all the babies had to be moved. So I got a new roommate, which I usually don't mind. I like to meet new people. This boy was cute and we were the same age. (He was a little short for me though.) This new roommate made my room awfully crowded! Thank goodness I was in a crib so I took up less room but when mom and dad tried to sit with me it got a little cramped. Luckily, it was only for a day or two. They got that section of the NICU fixed and all cleaned so I batted my eyes at the nurses and negotiated a great spot in a room over there. It is a room that can only hold 2 babies instead of three and it has a view of the mountains! I love it. There is so much room for mom and dad to spread out and I cannot believe how quite it is. I love my sleep and I need it to grow so this is working out perfectly! For now I don't even have a roommate!

My current weight is 4 lbs. 1 oz. I weighed a little more but I was retaining a little fluid so they have me medication to get rid of it. Hopefully this will help me need less oxygen and eventually get all this stuff off of my face! Once that happens, maybe they will quit suctioning my nose! Next to eye exams that is the other thing I hate!

Well, it is time for a diaper change and some lunch then maybe a nap. I will go wake up mom and get her moving, she has work to do. That is all for now from Laney's Crib (that is what I call my room). I hope everyone has a Happy Easter!

Love,

Laney

Time for another update!

Probably the biggest advancement for us was that they moved Laney into a crib! She is big enough now that she is able to maintain her body temperature so it is off with the isolette and on to the crib. It is a little ironic because the nurses and doctors were all very excited with this new advancement. When I came in yesterday morning they said, "Laney gets to move into a crib today!" My response was why does she have to do that? I liked the thought of her being in an isolette where everytime someone breathed it didn't land on her! Now she is more exposed to germs and chaos and noise! You would think that an intensive care unit for newborns would be a peaceful and quite place. Not true. They try pretty hard to keep things undercontrol. I will give them that. But there are lots of babies and they all have bells and whistles going off all the time. Not to mention the crying! My goodness full term babies cry alot! So far we have been blessed and Laney is not a crier. She will whine if she is in pain. A whail now and then when she gets a shot but never just crying. I know what you are all thinking. This mom has a rude awakening coming, (you are laughing at me in your head, I know) Very true and I know it is coming but I am going to blame it on the other babies teaching her bad habits! Classic parent response, "Not my kid!" For now she is pretty relaxed and just hangs out sleeping or looking around. I am taking advantage of this time trust me!

Medically, she is great. She received a blood transfusion on Monday and it seemed to help a great deal. Her oxygen requirements have dropped and we have hit a growth spurt. She is averaging 1 to 2 oz per day. As of today she weighs 3lbs. 14 oz. She is filling out and getting more of a baby face. She is starting to breast feed. She doesn't have the stamina to feed all the time so she still receives most of her feeds through her feeding tube. Things are definately looking up though. Feeding is her last big milestone. She has to be able to take her feedings orally for a couple days in a row then we can take her home. This may take a couple of weeks but it is still a great feeling.

She is ready to get out of bed so I will end here. Thank you all for your thoughts and prayers.

Slow but steady wins the race...

Well, lets see...what is new in the last few days...

Laney has stayed off of the C-pap machine. (aka. mid-evil torture device for small babies/breathing machine) It is wonderful to be able to see her face now that all the swelling has gone down. I also have to say that the shape of her head has greatly improved by not having things strapped to it so tight. She is looking more and more like a regular baby just a really small version. We have to laugh because yesterday there was a near full term baby admitted to our room. All we could say was how HUGE this kid was. I think he was just over 6 lbs. Our perspective is permenantly skewed.

We gave Laney her first tub bath on Wednesday. She refered to it as spa day! She did really well. She didn't cry at all. We kept her wrapped in warm wet towels and she basically slept right through it. As the water started to cool off she wrinkled her nose a bit but hung in there and was quite a trooper. I think we are going to be ready for another one tomorrow. Daddy will be in charge of this one!

She had an eye exam on Wednesday. In case you don't know, premature babies that are about 1000 grams or less or are on oxygen support are at risk for having problems with their eye development. Eyes are the last thing to mature on a babys, sometimes not even full term kids are mature. Anyway, because she has been on breathing support and she got down to 950 grams she has to have these eye exams. I won't go into details but it is horribly brutal...and I am a nurse! I don't recommend any parent ever watch. After all was said and done her eyes are doing ok so far. They are ok for her age but are developing a little different than normal because she is on oxygen and out of my tummy. But all things point to the fact it should resolve and develop normally. Unfortunately for Laney she has to have another one next week just to check for progress and changes.

She is still sitting at 3 lbs. 4 oz.. Breathing is a little tougher now without machines helping and her course of steroids being done. So she is burning a few extra calories on that. They are increasing her feeds to help compensate so we will see if that works tomorrow. She has graduated to being able to wear clothes so we thought we would throw some pictures in. Yes, these are preemie outfits and yes, they are no where close to fitting her. What can we say, we try and she is cute anyway.