No News Is No News,

12:24 am... I've been up almost 24 hours

Just a quick update as I pump (you're welcome for that visual). I got back to the hospital with the kiddos after stopping off to pick them up some coloring things. Can I just say that I remember when markers and crayons and colored pencils were like a dollar? Geesh. 9.99 for colored pencils.. yeah, if they are made out of GOLD.

Anyhow, I got up to the hospital and on my way there I'd received a call from Cayleighs night nurse. Shes a tall, curly long brown haired girl with fair skin and pretty eyes who we met last night. She asked me if she could take Cayleigh from her current wing of the ICN (Intensive Care Nursery) to the area where her 2 other babies were. I say yes. She didn't want to run back and forth because Cayleigh is so precious and needs TLC. I like her

We arrive, in the rain *sigh*, and I walk in to find Cayleigh wide awake, staring at the Tiny Mobile swing above her head. I'm excited because I'd brought her Aveeno Baby Wash (she gets a breakout if you use ANYTHING else), several snappy outfits, socks and hats for her. I also brought her special oil that I do my massages with her during ROM time. Cayleigh is 'eating' and so I just hold her hand and we talk about the brightly colored animals on the mobile. I talk to her about Mozart and Bach and ask her which song she likes better..she didn't respond to me at all. she was totaly fixated on that dang mobile. I will say that she was tracking the animals though. I think she just decided to ignore me today.

After she was done, I decided it was bath time. My nurse went to break and I had some lady I didn't care for covering for her. Another baby, Lexi (who is a HUGE 6 month old thats absolutely adorable) managed to pull out the feeding tube that goes in her nose to her stomach. It was pulling teeth to get a wash basin, but I got one. We had a bath, a massage and did ROM and she was a happy Bug.

Unfortunately at this hospital they don't have crap in the way of child activities for siblings. The parking is MUCH cheaper, and I don't have to deal with SF or the people and traffic there.. but gosh does it have its downfalls. So the kids can't be bedside because Cayleigh is on 'droplets precautions', but the nurse I like came back and said they could sit in the empty bed area. This new side we're on has only 3 babies and its big, open and really quiet. Or, it was until my kids got in there. We stayed not too long afterwards but the kiddos got a real kick out of Lexi. The nurse is her primarty and you can tell she loves her. She tells me that I should talk to the dr so that she can be Cayleigh's primary too if she'll be there long. I tell the nurse I'm going to make Lexi an over the top bow headband and bring it tomorrow, she seems excited. :) (I've already made it - see the pics)

I prayed with Cayleigh and I'm so exhausted right now and feel so stressed with Nic gone and the kids not being able to have anything to do or to be in the parents lounge alone because they are under 10 that I just need prayers for peace.

I'd like to ask for prayers for Cayleigh:
Please pray that:
1. The doctors have divine wisdom and guidance in testing and treating Cayleigh to 'cure' her desats altogether
2. That Cayleigh immediately have a strong swallow, strong suck, strong cough
3. That she have fluid, easy, pain free movements in all extremeties
4. That she not only focus on, but respond and interact with me (us/others)
5. That Cayleigh have peace while her family isn't with her, that she not be scared or lonely (makes me tear up thinking about it) and have total comfort . That the Lord would sit by her bedside and talk to her and comfort her. I believe it
6. That she have a sound mound.

Pray for Nic:
1. That he be safe during his travelling on planes and in vehicles
2. That he be a light to shine for Jesus Christ amongst non-believers and that he can share his faith and what God has done in his life recently through Cayleigh Jean
3. That he be safe during working. along with his coworkers
4. That he have peace and comfort during his time away

Pray for the kids:
1. That they behave
2. That they have peace and comfort with all these changes going on

AMEN

Lexi's bow :)

Hostile Momma

Saturday, June 4, 2011
Mommy, RN, PHD, WhateverIgottaBe

I got to the hosptial today at around 5:30 am, after dropping Nic off at the San Francisco airport. It was an early up (4 am) to say the least and we'd gone to bed around 11 after leaving the hospital late with the kiddos. When I got to the room a nurse was there taking her vitals. No fever. Last night she'd spiked a fever to 103 and then it went away after some Tylenol. She hadn't any desats last night the nurse told me. She also tells me that she had just changed Cayleighs diaper and that she'd just switched to Cayleighs 'new bag' of feed. She tells me that they will be taking another xra (the 3rd in her time there so far) to check her lungs again. They will also be by to take some blood to check her oxygen in her blood. Ok. I kiss Cayleigh, lay hands on her and pray and attempt to sit on the 'bed' thing and rest, but then remember that I have to give them my miolk. Of course, I'd forgotten to bring my stored milk with me to the hospital this morning which meant that I would have to go back later today- no better excuse for me than to 'have to' lol :)

So I sat down and then pops in the lady who is going to do the poking of my daughter. Our rules before 'letting' Cayleigh be hospitalized were that she was not to have any poking or prodding unless it was really necessary. First, I ask her who she is. She's got short, spiky black hair, too much eye makeup and looks young with bright blue scrubs. she tells me she is from Respratory - I ask her why she's got a needle to take my daughters blood then. She looks at me strange as if she'd seen a ghost. I tell her that I thought only a nurse or a phlebotomist (spelling? ugh) takes blood. She said that when 'doctors need the blood quickly they often times just send someone from their department' which screams to me code for "we're understaffed".

She puts a warmer on Cayleighs heel and tells me she has to wait for a nurse to open the drawer to get the needle. Ok, I say and I lay down. 5 minutes later she's back. I shoot up again and am at Cayleigh's side. She's asleep you know - I tell her. She says she's so cute and goes on about how precious she is, I tell her I know. (I'm sleep deprived and a little irritated - it mustve been the flourescent scrubs) She then seems nervous. I think I intimidated her. Well, she isn't a nurse and she should be doing oxygen related things - she wasn't an RN even. *sigh* case and point: She has a little box shaped poking thing that is simliar to what you'd use to prick your finger. She looks at it, rotates it and then finds where it is supposed to prick. So, she takes Cayleighs leg up in the air (and I put my hand on her hand, lower Cayleighs leg and gently remind her that my daughter 1. has contractures and I've noted it on the list of things about Cayleigh that my husband attached to her crib for me and 2. has dislocated hips so could she please not put her leg in the air like a gymnast - she isn't one...yet. :) So she then pokes her foot and Cayleigh had lots of blood flowing from that precious little heel. This woman then takes a tiny little sucker thing and for the life of her, bless her heart, can't seem to get the blood into the sucker thing. I must've looked at her and then her attempt and back at least fifteen times before I suggested she 'try again'. I suggest to her getting a bigger syringe. She tells me that's a good idea and within seconds she's back. She has another block poker thing and I'm not thrilled that my baby has to be poked twice because she's a dope. At any rate, she poked her heel again and again cannot manage to get the blood into the syringe. The problem is, she tells me, that there cannot be any air in the sample because it would give an innacurate idea of her blood oxygen level. well duh. So I proceed to grab the syringe out of her hand and tell her to hold the heel and apply pressure gently and steadily. she looked suprised for all of two seconds and then decided that was a good idea as I started collecting every drop of blood from her heel. Mind you - this woman spilled Cayleighs blood all over her bed linens and it was all over Cayleighs leg. *growl* I then turn the syringe upside down, flick it a few times and press the plunger upward, expelling the air, and the sample is perfect. She's super excited and tells me all about this little machine she has with her. She tells me its a mini lab and gives instant results. I stand by her and watch with her as she puts the sample in and we wait for the results. I watch and see a bunch of upward arrows and then 2 down. Down isn't good I tell myself. I look to see what the symbols next to the down are and see that one is for Potassium (thanks Professor Fig for teaching me the periodic table). The other one I dont know because it's a compound and I usually skipped first period. (lol) She tells me that Cayleighs oxygen level is really high. Then she leaves.

Ok..... so then the nurse comes in and tells me that they are going to be doing an xray soon. I tell her I want to talk to a doctor. She says ok. I lay down, ten minutes later the little irish doctor guy is there. He talks, alot (like me), and I half coherently understand him as I sway back and forth. I did catch him saying that they sent blood cultures off yesterday but those won't be back for up to a week, they also did another blood specimen (the poking lady) and that would be back today. I ask about the oxygen levels but he said he hadn't reviewed the results yet so they don't know anything. They really wanted to check her carbon dioxide levels in her blood. Often in preemies with chronic lung disease, their lungs dont get enough air and so the level of dioxide in their blood is elevated. He wants to see if that is the case with our sweet Cayleigh. He also says that if it is, she will likely be on a CPAP machine at home for nighttime. Ok I tell him, but it wont be. He confirms that yes, she must be swallowing since she doesn't have aspiration pneumonia. Tells me that the ENT wants to check her larynyx again (they'd done so at UCSF) this time to see if she had a cleft in it. He said that thought had come to him as a possible reason for the obstructive apnea. Interesting I tell him (but it wasn't). I tell him she also has a really high palette. He takes note. We'll be talking more later he says. Oh, and they are going to take a catheter to my daughter to get a urine sample so they can rule out any UTI or bladder infection because of that sudden onset of fever last night. I say ok, but its not going to stay there. He assures me that it wont. He goes on to say that while UCSF was ok with us taking Cayleigh home having a baseline (normal) of 5 or less desats during a day he wasn't comfortable with that. He tells me that he understands from the conversation he and I had on the phone last night that I didn't want her to be institutionalized but we'd have to find a happy medium. I then tell him that while I understand his concerns, they do nothing at the hospital above what we are equipped to do at home to suction her during desats and that I will be the one who decides when she is going to come home with me. I tell him that he should be aware that I will go AMA (against medical advise) should I feel that they are doing nothing for her because my daughter WONT be institutionalize. He says ok. I wasn't mean - but I certainly made my point.

So I layed down again, this time for a half hour. The nurse comes in and takes vitals, no fever. I tell her that I'd changed Cayleighs diaper after the lady stuck her foot twice because she'd pooped herself. She tells me "I would too". I laugh, so does she. My boobs tell me its time to pump so I stay up and the nurse says she'd be back in a half hour to take us to Xray because I'd mentioned to the dr that I expected to be there when the xray was done because my husband told me the first tech pulled my daughters arms up to her head and could've hurt her. That doesn't sit well with me. I also ask her for Ilex for Cayleigh's g-tube site because it was a little red on the left side again - and for mepliex to cover it. She says sure. She asks me if I have medical background and I tell her no, I'm just her mother.

I pump, then a LPN goes down with me to Xray as I hold Cayleigh and she pulls the portable oxygen. I like her, she's really nice and doesn't talk too much. Cayleigh and I sit quietly and wait for the tech to be ready. In the room I hear a tech talking to a little boys dad. Apparently he'd swallowed soemthing that was stuck in his intestines. They didn't know when it would come out or if it even could. Didn't know if it was obstructing but the kid hadn't pooped since Wednesday. That just goes to show you - if somebody offers you penny salad, don't eat it. (I really need to get some sleep)

We go in, I put on a full xray vest thing and then tell the tech I will move Cayleighs arms. We velcro her little arms and she looks at me and has tears in her eyes, and I momentarily break down and tear up a little bit - but then I wipe her tears and hold her hand and tell her its ok. I tell the tech that Cayleigh needed a cover for her lady parts. She obliges and covers her lady parts from the xray.

Seconds later, we're done. We all head upstairs and I change Cayleighs diapers again. This time the nurse comes over and asks the assistant if she can wait to change Cayleighs bedsheets until after the catheter. I was just opening my mouth when the assistant, not stopping for a second, says to the nurse that she can't have this baby sitting in sheets with blood and spille medicine on them. She tells her she will put down some absorbant pads and the nurse says ok. I like her.

The nurse asks if I am going to stay for the procedure. I look her right in the eyes and tell her if she can't handle it that I will, but that I need coffee. The LPN assistant girl says she will help. She understands that Cayleigh has the contractures and will be gentle with her pressure to move her into a frog position for the procedure. She'd watched me moving Cayleighs arms in the xray room and saw how slow to go. I say ok and then head down to get coffee. I got downstairs and that dang place was closed until 1130. So I got Wolfgang Puck coffee out of a machine (FABULOUS) and pretzels., oh and Peanut M&Ms....aaannnd a diet coke.

I walk upstairs and I hear them laughing. No sooner did she try to stick the cathter in than Cayleigh proceeded to poop all over their hands. :) The LPN was cleaing it up and they were going to start over. A bright spotlight warmed Cayleighs little lady parts and acted as a guide to help see her little who-ha area clearly. Just then a guy across from us who is Cambodian asks for someone to take his sons temp. He's been there before us and I guess he keeps spiking temps every 12 hours. The LPN goes to do it as I tell her that I am more than able to help. The little boys temp is 103. Poor guy. Meanwhile, the nurse proceeds to apply iodine to the little area to start her attempt again. She seems to fumble around trying to 'see' where her urethra is at. I have Cayleighs legs pulled apart an after 10 seconds of her looking around I went ahead and pulled apart her little area so the nurse could find it. Geesh... I felt like I was doing the work today. Somebody put me on payroll.

Anyhow, I left at 11:30 am to head home to get the kids, its 3:17 now and I got here around 1 (lots of rain) and of course 1 Diet coke, M&Ms and 2 coffee's later I couldn't sleep. So - we're on our way back up there to take Cayleighs milk! :)

That's all for now... I'll post again when I've rested and dont sound so hostile. lol

Back to the Hospital

Nic is on his way to Oakland Children's Hospital with Cayleigh to see if, perhaps, her increased desats are due to obstrutive apnea. What's obstructive apnea? Well, its basically when something is blocking her airway. Previously, 'they'd' said that she had brain damage that caused this apnea/desat. Her Pediatrician, Dr Weger (who is amaing),mentioned at our last appt that she clearly saw Cayleigh's chest wall rising during her desat which means this isn't a BRAIN problem, it's an OBSTRUCTIVE problem.

This brings me back to when I had Cayleigh and was sitting on the toilet at St Josephs, heavily medicated, and was looking on the computer to try to find out something -anything. I purposely never looked up the "Trisomy 18" that they'd misdiagnosed her with. Instead, that night I came across a blog post that came from a woman who's child had no gag/suck/swallow/cry. Ended up that she had a floppy airway. It mentioned a swallow study to see if this was the case. When I brought that up to the medical team there I was brushed under the carpet. What's peculiar, however, is that when I looked through my computer history to try and find that blog again to show Nic - I wasn't able to find it. Like...it wasn't ever even there.

So, now it's coming full circle. For those of you who know me, I've never been the best person - I've had my share of valleys and mountains... but since Cayleigh's birth I've drawn very near to God. If nothing else - I can above all things, and without a doubt, say that God works in mysterious ways. That His timing is not our timing, His ways are not our own. But you know what? He Delivers! (Literally) - I don't care who you are .... you CAN'T sweep God under the rug.

I woke up this morning with a bit of a stomach twist, a high fever (almost 102) and a headache. I stayed up for as long as I could and took care of making calls that needed to be taken care of. One of those calls was to Dr Weger - in which I spoke candidly about how I don't think Cayleigh has a secretion problem ---- but if there is anything causing the gagging it's because this RObinul medicine has caused her secretions to be too thick & I told her that I whole heartedly believe this is something different causing these problems. Cayleigh DOES make noise. A pulmonary doctor we saw once said that her tongue blocked her airway causing a noise called Stryders. It's a high pitched little squeak. Well, I had my finger in her mouth, and she was sucking on it, her tongue was down - and she made that very same noise.
I'm not saying that doctors don't give their very best opinion. What I am saying is that Cayleighs doctor - the Great Physician - has this handled.

As much as I want to be there, I can't because that would be selfish of me & ultimately nothing would be gained. So I sit here, blog to you all and try to keep composure. May God's good and perfect will be done.

From what we know: They'll do a sleep study, laryngoscopy and hopefully we'll figure out the REAL reason she desats. My being sick comes at a most inopprotune time but thankfully I have my rock, My husband, to see things through. It's sad that Nic's leaving here in two days for a 3 week job, but it's also a good thing because we'll be moving into our new house when he gets back. As far as Cayleigh is concerned - they've promised us that they won't poke & prod Cayleigh. We're big on her NOT getting IV after IV. I wish I were with them.. *sigh* Please keep her in your prayers and thoughts. Thanks for listening

Stupid Nurse

‎Here's the latest:

Nic was holding Cayleigh last night when the Lord put on his heart to ask the nurse to check the balloon on Cayleigh's g-tube. He suddenly remembered seeing the nurse the night before putting her meds directly into the "balloon' port of her G-tube. The balloon should only hold 5 ml and is what sits inside her stomach to keep the tube from falling out. When the nurse came in to check - she pulled out 4 viles of fluids. That's approximately 20 ml.



The balloon obviously lost its elasticity and became very loose. It moved all around and leaked a bit. After alot of hoop & hollering we didn't get anybody to come look at the thing from the surgery team until this morning. They didn't want to chance replacing the G-tube and needing to have surgery since the operating room 'wasn't staffed properly' at night to handle it. this is what we were told. The charge nurse admitted fault and said that they should have handled it last night but it was out of her hands.

Fast foward: this morning a resident came and changed the tube bedside. an hour ago it was clear leaking fluids (not breastmilk) that soaked up her mepliex absorbant pad that surrounds the site. Her systolic blood pressure reading was high so a male nurse came in, drained her tummy, and it went down.

Everything was ok, except that its now leaking air, and her dyastolic was high. So the nurse came over and took her bp cuff and put it from her leg to her arm per the doctors. it was still high, 30 minutes later a doctor came back. took the bp and it was now normal. she says the site looks ok and that she is going to have someone from the surgery team come back up to look at the site. (again) she promises us it will be some time before the end of her shift (which is 7 am tomorrow) and apologizes again because, now, THIS is the only thing keeping us in the hospital.

All of Cayleighs tests have come back negative - praise the Lord. They started yet another IV in her right leg since the one on the left was too swollen for our taste. We should be able to get moved out of the ICU and into the normal unit until this mess is resolved. Stupid nurse.

Update:

Update:

The test for RSV, Influenza and other viruses came back as negative. As a preventative measure, the nurse took a sample to send out for testing of Whooping Cough. Nic & I have both been vaccinated against this virus and the nurse says Cayleigh shows no signs of it. In order to bring her out of isolation she will need to be free from viruses and so this is a necessary last step.

Cayleigh did vomit for the first time ever earlier today and the contents appeared to be stomach bile according to both myself and the nurse who saw them. This is a strong indication that the Nissen they put in has either slipped or become loose. In which case, she will require an additional surgery to correct it.

Additionally, Cayleigh had a disdended abdomen around the G-tube site earlier. The nurse took out several viles of air and this seemed to resolve the problem.

We are awaiting a 2pm dye case in which they will insert die down her throat, to go into her stomach, to see where or if the problem is with the Nissen. We will keep you all posted.

Cayleigh does have alot of secretions, is spitting alot of spit out and still has some gagging. We have given her Tylenol and it helped her rest and brought her heartrate down as well.

Keep up the prayers!!

Cayleigh & The Giant

Update:

The PICU nurse tonight, Cindy, (who dares come into the "dun dun duuuun" Quarantine room without a mask on occasion) tells us that since Cayleigh has been here she hasn't had a fever. She asked if I rode with them in the transport (on the helicopter) and I told her no.

{Side note here: They were going to let me go on the helicopter with Cayleigh, a once in a lifetime opportunity. Then, they asked me 2 questions: A. Are you afraid of heights and B. Are you claustrophobic? The answer to both of these questions is HECK YEAH..but I said nothing. Not, rather, until she proceeded to tell me that it is 1. Highly windy today & will be very shaky and 2. I will have to sit in the front where the bottom is nothing but a see through thing.. meaning I would see nothing but the ground & it will look like my feet are dangling from thousands of feet up. Needless to say, I'm a big pansy. I drove in the van instead. It'd probably be better that I didn't hurl all over everyone in the cockpit }

Cindy proceeded to say that she thinks the 'fever' they said she was running was purely environmental & that it was probably very warm inside of that isolette. She thinks Cayleigh is suffering from some sort of virus - but labs will tell. We may get to go home.. however, there are more tests to run just to rule out the Nissen being too loose, and to confirm the pneumonia with UCSF's radiologists. It's 11:04 pm and I'm up way past my bedtime.

Sidenote: Cayleigh has been making crying noises pretty frequently tonight because she's madder than a Raiders fan in a 49ers store - they arent feeding her. I would be too.

PS
I am reminded of the battle between David & Goliath as I reflect on Cayleighs life. She is but a small and meek soul who is going up against some really big giants in her life (Polymicrogyria, Arthrogryposis, Poor Swallow, Stupid Secretions, Not much movement) - let's refer to them all as Goliath. But, just like David in the Bible, my sweet Cayleigh is going to take down Goliath with all the power given unto her from the mighty hand of God our Father who has said she WILL be healed. By His stripes, she IS healed. Amen, amen.

*flips Goliath the bird*

Back In the Saddle Again

Thursday, April 28, 2011
Welcome to the PICU

I don't know if its a good thing or not to walk back into a hospital and have nurses and other staff recognize you. *sigh*

This morning, while I was giving Cayleigh her bath she had 2 pretty nasty episodes of As&Bs where I had to push her around a little bit to get her to perk up. So, I got on my knees, looked up her nose and tried to suction her. I felt a pull on both sides like the suck wasn't going all the way up - and there were 2 huge boogies. One on each side. Well, some water and a suction later Nic was able to pull them both out. The size of a pencil eraser on each side of her sweet little nose. We high fived one another and I continued my massage with her.

Well, then she did it again. Not as bad, but stll having an episode. Then again, with my mom on hand and I had to perk her up again. Then again, again, and a few times for Daddy who had to blow air into her twice. We were going to the Babies R Us to get her a new swing with lights & sounds to keep her interest, help her track and focus. However, she had other things in mind. I was standing downstairs in the dining room, looking up to Nic who was at the rail of the upstairs...we agreed if she A&Bs again we were taking her in to get checked out. No sooner did we say that then she did - so I called 911.

The firefighters came, they hooked her up to their machine and gave her a higher O2 dosage. I was fine and held it together until they asked me her birthday. Then I broke down and started to cry a bit..got it together again and finished answering questions and explaining what had been going on. 8 episodes within 2 hours? So she was, of course, well behaved until right before the ambulance came. She A&B'd on them before the ambulance got in the door. They asked where we wanted to go & we said ValleyCare (which is what our doctor had suggested since they had a NICU), well, the ambulance didn't go to Livermore and said they'd take us to County because, they too, had a NICU.

Fast forward an ambulance ride later (Mommy rode w/) and we get to an ER where there are literally inmates with armed police/sheriffs with them there. Not what I wanted to see. I sat, for what seemed like forever, and these people I saw were CLUELESS. I was getting angry, at myself for forgetting her diaper bag, at them for being incompitent and then at whoever I could think of just because. Then Nic arrived, and I had no service so I couldn't call to ask him to bring the bag, and he didn't have the diaper bag either. The ambulance folks told him that the hospital would have her medicines and anything else she would need. NOT. So we went through clueless people who said "she sounds raspy" (well, DUH) and finally got a guy, Rudy, from respitory who came in and was the first one to actually see her. Some poor nurse and an admitting lady came in, and indian and mexican lady, right after and Nic was NOT happy. All admitting wanted to do was put a band on Cayleigh and Nic lost it with them (albeit rightfully so - HIGHLY stressful) and then calmed down. Then they were going to come take her to Xray meanwhile they had paged an ICN (Intensive Care Nursery) nurse to come try to start her IV. Well, Nic asked how they (radiology) planned on transporting Cayleigh since they didnt have any oxygen? They left, came back and said they'd bring the xray machine to us. I think he scared them.

OH - so the nurse asked us why the ambulance had brought her to their hospital! Apparently, they didn't have a Neonatal Intensive Care Nursery, they only had an ICU for babies that had been born there- so they weren't equip to handle her. Of course they weren't. *sigh*

Fast foward - they got her hooked up to a nasal cannula and upped her 02, the xray came back and said she had some pneumonia in the right lung. No fever, stable stats. they were air lifting her to UCSF. The ICN nurse was great, got the IV in and really cared about Cayleigh. Some random lady came by and told me to lay my hand on Cayleighs head every morning and pray for a sound mind, and everything night thank the Lord for her sound mind. Weird huh? ;)

Ok, so we're putting her in the isolette with the UCSF people and suddenly her heartrate goes up to the 180s. Apparently, come to find out, she went up to the 220's in transit. Also, she started running a fever. Seems like a simliar scenario to when she had pneumonia last time.

So we're at the PICU (Pediatric Intensive Care Nursery) now and in a room under quarantine sorta (a nice big, private room though!) and are waiting to get tests back on bloodwork. They say that the Nissen (band around the tummy that is supposed to prevent reflux) may be too loose or might have slipped and that may be why she possibly aspirated her feed. So now they are not giving her food and she isn't happy - she's fussy. I don't like it, I don't like it one bit.

My parents have the kids and I'm very grateful to them for that. My in-laws started a prayer chain, as did many of my Facebook friends and family, and I am also so very grateful for that. Please pray that Cayleigh can fight this monster - and conquer! Pray that the Lord would give the staff here wisdom and compassion in caring for Cayleigh, peace for Cayleigh and comfort and TOTAL healing, and peace for mommy and daddy and siblings. Thanks all.

A quick praise!

Sunday April 24, 2011 Easter Today we took Cayleigh to church for the very first time. What a wonderful first 'outdoor' adventure for her to a public place. Nic & I were definitely on guard to shield her from the germs that were sure to be lurking behind us ..just waiting to get her. Alas, we made it out of there with her unscathed & the Lord has kept her from getting ill. Praise God! I wanted to share a video that I took yesterday of Cayleigh shortly after one of her mid day massage & range of motion (ROM) sessions. If you're familiar with her arms, they are usually extended in fists, directly outward and bent at the elbow. The more R.O.M. excercises and massage sessions we do, the looser she is becoming - EVEN when she's awake! How about that?! So, without further ado, here she is. ... and Happy Easter to all!

Happy Easter Everybody

Saturday, April 23, 2011
Where, oh where have we been?

Gosh, if I said I could update you on everything that has happened since the last blog post I'd be a liar. Instead, I'll update you on today because today is a happy day.

Cayleigh went to her first Easter Egg Hunt here in Mountain House and ate her lunch while her brother and sisters fought the savages to scoop up eggs. She didn't mind being outside since it was a beautiful day - and she tolerated her feed pretty well. Daddy & I have kept her, for the most part, indoors (in our room), so it was probably an interesting change of scenery for the little miss.

Fast forward to tonight: Cayleigh was laying on our bed, eating, while I was talking to her. She locked both eyes on mine and stared at me for a solid 20 minutes. I was talking continously to try to keep her attention (and because I tend to do that anyway) and was smiling alot. She tried, very very hard, to smile.. I think. Plus, she was obviously excited because she made this really hoarse crackly noise like she was trying to talk to me. I think it was a coo.

I don't care what any doctors say or have said... my baby girl is going to be just fine. I know it in my heart & I'm pretty sure she does too. :)

If you're interested in hearing the latest on all things Dulik related,feel free to follow the "Our Family" or "Our Story" tab at the top here - I can't remember what I named the page. :)

My Peanut

Saturday, April 16. 2011
All things come easier with time

To say that I've fallen in love with my daughter would be a gross understatement. She's the light of my world - the sunshine in my day. Today, Nic went back to work to 'see how it goes' so to speak, here locally before he makes the venture of flying across the country to work. He left a little after 6 am and was gone until just before dinner time.

Our room has become the place of Cayleigh, Mommy, Daddy and noone else. period. I take that back, not noone else - its just that you have to A) wear a mask, B) use hand sanitzer after you've washed your hands and C) you can't touch her. Other than that, it's a free for all.

The reason we are keeping it so locked down is that we had our first pediatrician appointment yesterday with Dr Gach, who suggested that we don't take her anwhere - not even outside unless we have to put her in the car to go to a doctors appointment - for at least a month. Just getting home from the NICU, we don't want to expose her to anybody we dont have to -- especially not their germs. Also, taking her outside doesn't allow her to regulate her body temperature very well. So until her immune system is better, she's bigger (primarily her airway) and her body temperature is more consistent we are going to keep her in her room. Our bed is her bed. No, seriously, she really REALLY likes it. According to daddy she can just keep it. We'll sleep on the floor.

Today I was lucky enough to have my mom spending time with the older kids so I could take care of my sweetheart. We start our days with a feeding, then a sponge bath, a massage, Range of Motion excercises, a few songs and lots of kisses. I hold her alot and I rub her tummy during her feeds like she prefers. I think it helps her digest better, takes her mind off the gas and makes her feel better. It makes me feel better too. We lay together and talk. i had her on my legs, out in front of me, and then I held her on my arm (its tricky to hold her too close with the G-tube) and she and I talked. She stared at me. She was trying (I believe) to mimick my facial gestures - she was certainly studying my smile real hard and moving her little mouth ever so slightly. She was absolutely deadlocked in on mommy for a few hours today. It's like she's coming awake now that we're home - we're getting to really know one another and I couldn't be happier.

I'm eternally grateful to have a husband who gets up to do her feed bag while I pump. He's wonderful. Really, I'm not just saying that - he's been the best thing ever to happen to me (besides the kids of course- well in addition to the kids. like I tell them - I love them each more than anything in the world, just in different ways) Cayleigh is his little clone.. it's hysterical. I'll go ahead and quit my rant and just give you guys the pictures! :)

Please keep Cayleigh in your prayers. That she make excellent progress, handle her feeds well, have increased flexibility and range of motion, that she can swallow her secretions on her own, is able to wean off oxygen soon and that she be alert, happy and know she is loved.

Please also pray for the kids, that they know how much we love them, that they don't feel neglected but instead respond positively to the new situation at home, that they are well behaved and obedient.

Finally, please pray for Nic and I. That we be encouraged each day with newfound hope, progress and strength. Thanks!