Morning

M finally got to sleep around 4am and only slept until about 7:30. She woke up with a fever again. Her fever spikes at the 3.5 to 4 hour mark. Its clear to me that she NEEDS Tylenol.
She doesn't want to eat anything. She did start drinking more water and went to the bathroom already. Geez, that was a chore! I finally get her potty trained and to get her in to the bathroom I have to bring an IV pole, her pulse ox cord and O2 tube! Yowza! Needless to say, she was less than happy about her new attachments.
She asked if we can leave and go to the zoo tomorrow. Ha!
She's so sweet. She tells all her nurses, docs and RTs thanks when they're finished examining her. She apologizes and excuses herself when she coughs.
I'm very afraid. She's very sick. Her color is better today though. The O2 assistance is helping her cough less. I just hope she can get over all this quick and be back to herself in no time.
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Swabs

The nurse came in and did the swabs for RSV and thr flu. She was protected by a mask and disposable yellow gown. Apparently the RSV culture takes 24 hours, the flu cultures take 72. That explains why they start treatment before they know.
Her throat is red. The docs think its irritation from all the coughing, not infection. She got Tylenol for the fever, finally. Hopefully she'll get some sleep now. Just waiting on the pharmacy to send up the IV fluids, antibiotics and Tamiflu.
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admission

The on call pediatrician just came in. She wants to swab for RSV, give Tamuflu for possible H1N1 infection, IV fluids for slight dehydration, and antibiotics to blast anything else.
I'm officially scared.
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Pneumonia

Yesterday evening Maryam started coughing pretty bad. All day she didn't want much to eat so I had a feeling she was getting sick. I was right. Last night she didn't sleep well and this morning she was running a temp.
This evening we took her to the ER because ahe was getting much worse. The neb treatments weren't working, her emergency inhaler wasn't having much of an affect either. During her afternoon nap she was breathing so fast that I counted 170 breaths a minute. That's when we decided to take her to the ER.
When she got in her fever was sown a little to 99.8 but her O2 sats were only 88% on room air.
She was given O2 immediately. Chest x-rays were ordered and confirmed pneumonia in her upper right lobe. Because she needs O2 she's being admitted. Right now Brett and I are following her ambulance transport. She's on the way to a Kaiser facility where they have her entire medical history.
I'll try updating more as more information becomes available to me. Keep her in your thoughts and prayers.
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Rotovirus (insert sigh here)

Here is Daddy sleeping next to Maryam on Wednesday morning when she woke up at 5am not feeling well. He rocked her for a while, then laid her down in her bed. He proceeded to pat her butt and rub her back until she fell asleep. Looks like he got a little nap in there too!
We had to take Maryam back in to the doctor today because she's on her 6th day of diarrhea. Her doctor said that her symptoms sound like Rotovirus, which is unfortunately VERY contagious. HOPEFULLY Ian and Anna didn't catch it from her on Tuesday night. Dr. Mohan told us to keep giving her the Pedialyte through today and start her on half formula/half Pedialyte tomorrow and see how she does. We can't let her lose too much weight, and we don't want her to get dehydrated. The next few days is going to be trying to find a good balance for her tummy. Wish us luck!

I added this picture because she just looks SO grown-up! I can't get over how much my little girl has grown in the past two years.

Restless Maryam

Last night Maryam went to sleep around 10:15, which is early compared to the two nights before where she didn't go to sleep until after midnight. But last night she woke up every 1 1/2 to 2 hours crying in her sleep. She kept rolling on to her back and rubbing her tummy, so my first thought was that she needs to relieve some pressure. I inserted her tube and nothing. Then I saw how much she was drooling in her sleep and thought maybe she's teething bad tonight. I gave her some teething gel and she stopped crying and fell back to sleep. This went on ALL night.

I tried looking at her mouth this morning and I can see a new molar breaking through on the top left, which I thought I felt in the dark last night. And then there are still the other 3 or 4 molars that are trying to break through in the rest of her mouth. This process takes FOREVER! Its a amazing.

Thanks Christi!

Christi Carnes, the digital scrapbooker extraordinaire, has mastered the use of html code to make Maryam's blog super fantastic! Kudos Mrs. Carnes, Kudos. My favorite part is what she said, "it was nothing, it only took 30 minutes!" Gotta love her. To see what she did with her own blog check out Christi's Blog.
Maryam still isn't feeling too hot. She was up for 3 hours last night mostly due to discomfort from the diaper rash. I think I've finally got that under control. Now, if only I could stop the diarrhea. My new game plan is to give her Pedialite until there is no more diarrhea between feedings. If 4 hours passes without her having more diarrhea, I'll try to put her back on the Pediasure. Wish us luck!
Maryam had PT today and I think it went well. My little sensory kid strikes again. We think the toe walking might be from not liking the tile floors. We don't have any carpet, we have tile in the living spaces and hardwood in the bedrooms. When she's on carpet she tends to walk normally ie, at PT. So, my new plan for the toe walking is to keep her in shoes for a few days and see if she stops toe walking. If that works then I guess she'll have to wear shoes at home or at the very least slip around in socks.

Checking out the terrain

Mr. Bishop in our amazingly landscaped backyard. Don't be jealous y'all!

Here is Maryam checking out the backyard. She NEVER wants to go outside to play, probably because its way too hot! But yesterday she kept pointing outside and saying, "iontdat." Which we have figured out means, I want that. So, we took her out to see what she thought. Mostly she lost her footing and fell down a lot. But she did have fun putting her hands in the dirt and picking up and dropping rocks. Of course, I didn't get any of that on film, because I left the camera inside. By the time I came back out, she was on the porch and ready to go back inside.

Even Mr. Bishop got tired of being in the sun!
Today we took M out front to check out the front yard. Daddy was out watering, our sprinkler system needs some work, and M was wandering the yard. Our street is on kind of a hill so there is a good 3 feet difference between our house and the house next door. M was over looking near the property line when she slipped on some dirt (SHOCKING) and then rolled into the neighbor's yard. She rolled twice! It was hysterical! The good news is, she stood up and laughed! She wasn't embarrassed or hurt, I think she thought it was fun.
We're still testing Maryam's O2 levels at night. A couple of nights ago I put the pulse oximeter on her and she wasn't staying over 90% on 1/16 liter of O2 per minute. So, I turned her up to 1/8 LPM and nothing! It didn't budge! FINALLY it went up to 92%! This scared the crap out of me. It took me going all the way up to 1/2 LPM until she finally got up over 95% and even then it stayed steady around 95-96%...not good. I started skimming my memories for the day, was she feverish, was she breathing hard, did we give her the breathing treatment, does she need lasix? Then, it happened. She rolled from her back to her stomach....and voila! 100%! Clear as day...100%. So, I turned her down to 1/4, still 100%, turned her down to 1/8, still 100%, turned her down to 1/16 and we got some movement...98%. 20 minutes later I go in to see how she's doing...still at 99% on 1/16 LPM. Relief....I was going to finally go to bed. Then it happened again....her levels started dropping. When it stayed at 92% for more than a minute I got up to look at her, I wanted to see if she had her face buried in the sheets or something, NOPE! She had rolled on to her side!
OK...I've never been more convinced that her O2 needs at night are positional. When she's on her tummy, she's fine! Its when she's on her back or side that she starts requiring help. When she had her Preemie Follow-up appointment in June her neo put in a referral for Maryam to see an Ears, Nose and Throat doc because her tonsils looked large and because Maryam is a restless sleeper. Her appointment is July 31st and I'm definitely convinced now that she needs to see this specialist.
In molar news, it still hasn't cut through. Last night poor Brett had to stay awake with her until 6am. Stupid me got dehydrated, so I was pretty much useless. I had her up until 2:30, when I got so dehydrated that I got sick and could barely stand. At that point Super Daddy took over and I started to recover.
This evening we went swimming with The Carnes Fam. Anna tried teaching Maryam to do Patty-Cake better! It was super cute! Super Mom Chrissy actually took photos of the girls together, I stayed in the pool. When she sends me copies, I'll post them. Tonight Maryam went to sleep at 11pm, since she only had a half hour nap today, ran a muck ALL day, went swimming for an hour and a half and only had 5 hours of sleep last night, I'm anticipating a full night's rest. Good night!

Feeling old!!!!!!!!

Mayda and Tyler.

Mayda and Austin.
OK, so Mayda's eldest son, Tyler, promoted today from jr. high school to high school. Normally this sort of event doesn't bother me AT ALL. But today I was the emotional equivalent of a pre-teen girl who's parents just said she couldn't date the boy of her choice. It was CRAZY! Just being in our old Jr. High gym made me emotional. I kept thinking about how Maryam is going to grow up one day. DUH! Of course she's going to grow up, she's a baby, she has no where else to go!
Of course it didn't help that Mayda was all emotional either. I was there the day Tyler was born, it seems insane that he could possibly be old enough to be starting high school in the fall. And to top it off, later in the day her youngest son, Austin, promoted from elementary school to jr. high school. For starters, I didn't even know that this particular event was celebrated, but it really got me thinking. Tyler will be graduating from high school in 4 years, just as Maryam will be starting elementary school! And Austin will be in the high school graduating class of 2014, 20 years after Mayda and I graduated...Chrissy too! Ladies, we're getting old!!!! Mayda and Maryam....the outfit is from Auntie Mayda.
Emotional tangent over.
Maryam's oxygen saturation isn't doing as well as it was a week ago. Today she's been sating around 95-96%. Not ideal, she has to stay over 95%, but we'd like her well over 95%. We gave her a dose of Lasix, as we were told to do, but it hasn't seemed to help. (I think that's a good thing, because that means there is no fluid build up!) She has an appointment with her pediatrician tomorrow, I'll see if she has any suggestions that might help us.
Brett and I noticed today that Maryam has started losing weight. We cut back 100 calories/day (which is practically unheard of in the preemie world) to see if it encourages Maryam to eat more food and drink more liquids orally. I think it has helped her want to put more into her mouth, she even dripped some pediasure into her mouth from her bottle today! But I wonder if the sudden weight loss could have affected her lungs. Her pants are getting too big for her! Today she was cruising and crawling around and her pants kept sliding off of her hiny.
I also wonder if the low oxygenation could be due to exhaustion. Maryam decided that sleep wasn't important last night and exchanged 4 precious hours of sleep for PLAY TIME! Seriously at 3:48am she was standing in her crib laughing and saying, "mama, mama, mama.....dada, dada, dada." She didn't go back to sleep until 6:30! Thankfully she slept in until 11am, so Brett got to make up some of his lost sleep. So far today she's only had a 25 minute nap. Raise your glasses folks...here's to hoping Maryam sleeps tonight, clink, clink, clink!

And the winners are....

Emily (Dakota's Mommy), Auntie Brande and Yaya. Great guesses ladies! Maryam has a viral infection called Herpangina. Its a form of the virus that causes hand-foot-mouth disease. Now tell me, how does a baby that rarely puts anything in her mouth contract such a thing? According to the doctor the sores in her mouth are painful and we are to keep her on Tylenol or Motrin until the sores go away. And on top of that, Maryam also has ear infections! She was given Amoxacillan, 6mls 2 times a day for 10 days. Poor little punkin.

Oh and she hasn't stopped hurting herself. She keeps putting her hands in her mouth and hurting herself. And the sores are on her tongue, on her lip between her bottom lip and her gums and on the back of her throat. She has one on the outside of her top lip which looks like a zit and another sore on her chin. Its crazy! It just came out of no where. Apparently it will clear up in a few days. The doctor said that her fever could be from either the virus or the ear infection. Either way it should be gone in a few days.

The bummer, no trip to Disneyland with Auntie Katie. The good news, Maryam is in the 45% in both height and weight for her ACTUAL age! HOORAY!!!!! She's up to 22lbs 9.6ozs and is 30 3/4 inches tall!

Hopefully Maryam will sleep tonight. Now that we are aware of how much pain she has been in, we decided to set alarms so that we can wake up before she does to administer her pain meds.

Sicky Baby

We've been fighting off fever ALL day! The last time we checked it Maryam's temp was 103.5. She's been breathing rather fast, around 60 breaths per minute, but I think that's partially from the fever. I say partially because she did have some wheezing today so we had to give her a few Albuterol treatments. We will continue to monitor her through the night and if her temp goes over 104 and we can't stop her from crying, then we'll be taking her into the ER.
Maryam was up from 3:09am until after 7:30am, it was a rough night for all of us. She did manage to take a 3 hour nap this afternoon. We just hope that she's feeling better for her baptism tomorrow. I'd hate for her not to be able to come to her own party. That's just sad.

"sleep is over rated"

That's what my friend Christi said her children started thinking.....that sleep is over rated. I'm starting to think Maryam feels the same way. Because while she should be sleeping, she's crawling around and playing with her blocks.

Funny story. Maryam crawled across the living room, over to the kitchen then crawled under the dining room table where she proceeded to take a poop. I thought it was pretty funny when she did it this afternoon. Then earlier tonight she crawled behind the reclining chair and pooped again! According to my mom and dad and Grams, I use to do the same thing. According to Brett's mom, Paddy did this when he was little too! So, I guess Maryam enjoys her privacy! THEN, just now, at freakin' 4:30am, she crawled behind the reclining chair to take a poop again! Ah my weirdo baby. Oh and she's learned how to manipulate her nasal cannula so that she can crawl right out of it. I'm thinking the tape is going to have to go back on soon than we had hoped.

The good news is even though she's awake at 4:42am, she doesn't seem to be sick at all. She's not warm she's not cranky and she's not crying. She just woke up and decided its time to crawl and play with her blocks.
All three of these photos were taken a few minutes ago. I wish I looked that good this early!

Fevers and sleepless nights

So, Maryam woke up at 4:19am and didn't get back to sleep until nearly 7:30. That sucked. Poor little punkin just isn't feeling well. I thought she was a little warm last night when we got home, I took her temp at it was 100.7. I figured, low grade, its probably just more teething yuckyness. However last night was different. She didn't wake up ready to have a party in da crib, she was crying. And it was one of those sad mournful cries that comes with big crocodile tears that breaks Mommy's heart. After about 3 hours of rocking and trying the whole CIO thing ( I SUCK AT THAT!) I finally managed to rock her back to sleep! My back is killing me because she wouldn't let me sit. That's when I knew she really wasn't feeling well.
But when she woke up at 9:30 she wasn't hot, or cranky or sad, she was back to being her happy self....my weirdo baby strikes again. So, we proceeded with our day as normal. We went to PT and she was fine! THEN, as PT was ending she got hot and cranky again. By the time we got home from PT her fever was up to 102 and we were starting her Motrin/Tylenol regimen again. I can tell she's feeling a bit dehydrated because she's drinking from Honey Bear pretty good today. So, I'm giving her extra water via G-tube after each meal and presenting Honey Bear cup every 15 to 20 minutes.
Deep down I think its just the yucky teething because she's acting normal, she isn't coughing, sneezing or having a runny nose. She hasn't touched or pulled on her ears and she isn't retching any more than normal.
But PT was GREAT today! She crawled across the play room while her PT criticized her every move, I love that. I find it fascinating how what I "misconstrued" as uncoordinated is "tucking her left knee and hyper extending her right hip." Its amazing what her PT sees that I don't! Am I crazy or do all babies start out crawling funny? At the end of the session the PT did say, "Well, she did just start crawling." I KNOW THAT! Does she?

Changing beds

We decided that Maryam had out grown her Co-Sleeper. Actually, when I saw her stand-up in it, I knew it was time. We didn't want to see her take a header out of it. So these two photos are of her last night sleeping in the bed she's slept in since the day she came home from the hospital. This bed has gone through some changes during the past year. It use to have an Apnea Monitor hanging from it, and of course an IV pump to pump breast milk and formula into her NG tube. We also use to elevate one side because of her severe reflux. Once the Gtube was placed and she had the fundo we rigged it so that we could hang the tube between two IV poles on either side of the bed so that Maryam could stay vented during the night and we stopped elevating it.

Here is Maryam in her new crib (standing of course). We've been pretty lucky since December because everything about her bed looks "normal!" No IV poles because we manage to get all of her food into her before she goes to bed. She tolerates the Pediasure much better than her old formula so we don't have to drip her food into her tummy anymore. We simply bolus the whole 200mls over about 15 to 20 minutes.

Here is Maryam sleeping in her crib for the very first time! She has been doing well. She's napped in it everyday and hasn't had any problems. I was worried that she'd miss her old bed, I guess I was wrong. One thing though, she's been up EVERY NIGHT for anywhere from 2 to 4 hours partying. She just wakes up like she had a shot of espresso and we can't get her back to sleep for a while. She just sort of has to "play" off all of her energy. Brett and I sure are getting tired though!

Inhalers and buttons

I forgot to mention that Maryam pulled her Mic-Key button out Thursday morning. It was during a feeding, she just grabbed it and yanked it REALLY hard. The button came out with the balloon fully inflated and in tact. She bled a little bit, and cried a lot. But she was fine after about a minute or so. I guess I had better train the grandparents on how to put a new button in just in case she's in their care next time it happens.
Maryam also decided that she hates her inhaler. I have to pretty much wait until she's asleep to give her the steroid treatment, because if she's awake she fights it off with tears, kicking and screaming. Its not pleasant for either of us. I don't get it though, why all of a sudden? So strange! I even started letting her play with it, in hopes that she'll find it less scary if she can handle it on her own terms, but nope as soon as it goes to her face she gets upset again.
She is getting better at crawling around! She pivots on her tummy 360 degrees in both directions trying to get to which toy she wants. She'll travel about 6 or 8 inches trying to go after a toy or the dog or Mommy. But once she gets to the desired object, dog or person, she roles back on to her back where she's more comfortable. She is definitely getting stronger, but she's still very weak in her shoulders and has a hard time holding herself up for long periods of time. The good thing is she's feeling more comfortable on her tummy and is able to lay on her tummy and play for short periods of time.

I'm posting now because Maryam decided to have a party in her co-sleeper at 2AM and its still going on. I'm not going to be home today so I figured now is as good a time as any!