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!

HOME

Wednesday, April 13, 2011
Home

This morning Nic and I packed out all of our stuff at the Ronald McDonald house and headed to the hospital. Todsy was the day Cayleigh was coming home they'd told us. When we arrived at the hospital we found Cayleigh in her crib but her 'going home outfit' hadn't been put on her. We asked the nurse, who we'd never seen or met before, why she wasn't ready to go home just yet. She had this look on her face... she stumbled over her words and spoke quietly as she told us that, after not havin any Desats/Bradies over the last almost 2 weeks, Cayleigh had a low heartrate/low saturation last night. She said that the doctors would want to talk to us during rounds. My heart broke into a million pieces and I wept a bit. I walked over to the window and layed my head in my hands and prayed.

Shortly thereafter the doctors came over. They wanted to make sure we were ok with bringing her home and that we were comfortable. Nic was definitely comfortable, I tried to be.. though, inside, I was pretty uncomfortable.

I don't think anyone can be comfortable in the current situation we're in with Cayleigh. But as I type this I'm confident that this is only a current situation and nothing more. By the grace of God, and prayers from all of you, she will stops having desats altogether, she will not need the oxygen tube anymore and she will begin not only to suck and swallow but to eat, focus easily, have no more muscle contractions and be flexible and loose. I believe this can happen, i just need prayers . Alot of prayers.

So I'm not good at sharing my emotions and telling Nic how I'm feeling. Tonight I had a little breakdown. I told him I didn't know what was wrong or why I was crying. Instead I talked to Cayleigh through tears during her spongebath time. I told her that I was sorry. I was sorry because I didn't feel like I was strong enough to take care of her, that I was sorry because I felt like a bad mommy but then I looked at her, and she looked at me, and I told her just how much I loved her. I told her that I wasn't going to have post partum and that I was just having a meltdown. Its true though. I've had no time to cope.. and sometimes it all just creeps up and bites me in the butt. The emotions overwhelm me or I get worried.. so please definitely pray for me. I confessed to Cayleigh and I think she & I are good. :)

Cayleigh has, according to this machine which Nic and I aren't so sure about, had a couple of A&Bs today. Please pray that these STOP. In JESUS NAME. I don't know the right prayers to pray or words to speak but I would really, really, REALLY just like the episodes to STOP. Please ask the Lord to heal her from these so I can have some kind of sanity.


I've got a doctors appt tomorrow to finally get a 6 week checkup (8 weeks later). I had a part of my incision reopen and the doctors at UCSF called to tell me a culture came back with some kind of bacteria thing that casuess slow healing. I guess we find out more tomorrow. But this will be Cayleighs first trip 'out'. Please pray for a good, safe trip for all.

Please lift us up in prayers. The biggest thing is the A&Bs. That those END. STOP. NOW. everything else is icing on the cake

PS Cayleigh really enjoyed the Bay Bridge coming back... it was dark, then light, then dark, then light as we passed each little cement barrier thing. Her eyes were WIDE open and she was looking all over, moving her head to the left and the right. I've never seen that before in her. Very cool.

The First Night

Sunday, April 10, 2011
We Made It

After my mother and father in law, and Aunt Sue, left yesterday it was nearly 9:00 pm. Cayleigh had been up since noon and was up shortly after they left ..although she did fall asleep briefly in both Great Aunt Sue and Grampys arms. It was a little unnerving because I think we both wondered if there was an issue with her being awake so long that was perhaps neurological - but of course, we rebuked those thoughts and she was asleep through the entire night.

Nic was amazing, as always. He would get up and take care of changing and hooking up Cayleigh's new bag of feed right after I finished pumping. I now have a pumping schedule - 1/2 hour before Cayleigh eats. It keeps it simple and ensures we aren't having to wait to dethaw any milk. I think we both got a good taste of what its really like with a newborn even though she stayed asleep for the changing & feedings. I did get more sleep because I was able to fall asleep after the pumping equipment was done, the extra mlik stored and everything was happy. What's scary is that I don't think I woke up from the phone alarm - only when Nic woke me up. I think I'm going to invest in a large, loud alarm clock.

So right now its 1:40 in the afternoon on 'day 2' of our sleepover. We're not entirely sure if we're going home tomorrow or Tuesday because we hear conflicting things. Well, more truthfully is that the nurses say they've been told Monday - and I read on the chart when we arrived yesterday that we'd be leaving tomorrow... but the doctors, during our impromptu meeting, told us that we'd be leaving on Tuesday at the earliest.

Anyhow, I'm here, Nic's here, Cayleigh is asleep and we're watching Chuck & Larry on USA. It makes me understand how God wants us to truly live - to love the sinner, just hate the sin. We don't need to be ugly toward these people, just to pray for them, show them God's love and let God do the rest. :)

Please continue to pray for our Cayleigh Jean. Lift her up that she has stable stats forever & ever, improved movements and flexibility, that she be alert and active, that she stay free from sickness and that she suck and swallow on her own to handle these secretions without problem.

Bittersweet

Saturday, April 09, 2011
Slumber Party

Tonight I sit here, not pumping, but instead laying in a pulled out makeshift bed/couch thing that lines up next to another one on which my husband, aka daddy, aka my very best friend, aka my rock, aka Nic is going to be sleeping. On the other side of his couch thing? Cayleigh in her crib.

To say this room is tiny would be a gross understatement. But, we must persavier through this - with many, many prayers asked for - for the next two nights. We are across the hall from another NICU room, down the hall from the West wing, down the hall/around the corner from the North where she was. The nurse comes in to check on her/us every so often. She just told us she'll be back at midnight. Yippee *sarcasm to be noted* They've (and when I say they I mean different people in different departments) been in and out all afternoon.

We got here just after 12 after dropping Juliette off to my brother & his girlfriend Allyson for the next two nights. Tayla and Jacob are with my mom and dad. We took the Muni bus/train thing here with our bags for overnight and some snacks in hand. When we arrived we were told the room wasn't open yet. So we packed our stuff next to Cayleighs crib in the NICU room and waited. Finally the room opened up - at 3:00 roughly and we were getting ready to move in to the room. Unfortunately, 3 is when she's supposed to eat so that got delayed until 3:40 which threw us all for a loop.

We're all equipped with machines and whatnot but its still a bit scary at first. By now I'm not quite as excitable as I was earlier, but I'm sure I'll get there. I feel like I've been nothing but anxious lately. Nervous, excitable, overly cautious - all things I'd really appreciate prayers to overcome through Christ's strength and peace. I'm so, so glad Nic is here. I couldnt do it without him..and I say that, of course, after having the Lord helping me and even giving me the tiny bit of strength I do seem to have first.

She's over there, making her little grunty noises right now. She's been up since noon. My mother and father in law, along with Nic's aunt Sue, were here this afternoon and left just a short time ago to catch their flights home. It's bittersweet. My husband doesn't get emotional much but you can tell he was sad that they were leaving, likewise I'm sure. I know Cayleigh misses them too. She was up the entire time they were here. She's still up right now. It's a prayer answered but of course Nic and I are a bit worried because she's been up this long straight without much sleeping. Please pray we both have peace, wisdom and patience.

So we're here and will be until Monday morning. We're really hoping we get to go home on Monday. That's what we have heard from the past few nurses and other people so.. we shall see. It all depends on if we have the equipment we need to care for her before we go. It's going to be a trip..taking her home. Away from this place, away from a hospital, away from it all. And I'm not going to lie that its all very overwhelming right now but like my mother in law said, it will all be second nature to me in no time.

Please pray for us. Pray mostly for Cayleigh.. that she maintain excellent stats, tolerate her feeds well, have no rashes or skin breakdown (a little red around her leg creases earlier),be free of illness and sickness, awake (but not TOO awake lol), have increased moving and flexibility, and that she be given the ability to swallow (and suck).

That's about it for me.. I'm going to be up again in an hour and a half so... goodnight all!