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.
Thursday, April 28, 2011
Sunday, April 24, 2011
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!
Saturday, April 23, 2011
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. :)
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. :)
Saturday, April 16, 2011
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!
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!
Wednesday, April 13, 2011
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.
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.
Sunday, April 10, 2011
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.
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.
Saturday, April 9, 2011
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!
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!
Thursday, April 7, 2011
News
Thursday, April 7, 2011
Well I've got good news and then I've got great news. *GRIN*
Cayleigh's grandparents got to see her for the FIRST TIME today! Grammy and Grandpy Dulik flew in last night from Florida to see the little miss. Their timing couldn't have been any better.
Cayleigh has been doing really terrific and we feel SO BLESSED that she's made these strides of progress over the last week or so. She's tolerating bollus feeds really well. She's not needing the suctioning nearly as much (or at all) and is doing EXCELLENT on her stats. I'm amazed at the hand of the Lord in this entire process. He had hear our prayers and has begun to answer them, in His time, and bless us all. Please keep her lifted in prayer for continued success. Stable saturation level, stable heartrate level, that she tolerate her feeds well, that she be comfortable and more alert and aware, that she have increased flexibility and movements and that she cry and be free from illness/infection.
We are so excited because Cayleigh isn't going to have to wear a harness coming home. Down the line, somewhere between 6 mos - 2 years she will require a time where they will push her hips into alignment using xray (Cayleigh will be sedated) and then put casts on her entire legs/hips. There will be an opening for her hooha and butt so she can be changed and go potty. Oh, and no boots/splints. They said she doesn't need the splints on her feet so thats a good thing too - yesterday they were saying she needed them. They were actually going to fit her for them right then and there but Mel and Nic said Oh NO You AREN'T - because they didn't want them moving her all around after she'd just had a bollus feeding.
Did I mention Nic and I are going to be staying at the hospital both Saturday and Sunday night with Cayleigh. They are prepping her to go home - by Tuesday at the earliest! HOW EXCITING IS THAT?!
We'll have Oxygen at the house and portable, a suctioning machine, her feeding machine for the continuous night feeds she'll be on from 9pm-7am, and then her G-tube stuff.
It's scary but exciting. I can't WAIT.
Well I've got good news and then I've got great news. *GRIN*
Cayleigh's grandparents got to see her for the FIRST TIME today! Grammy and Grandpy Dulik flew in last night from Florida to see the little miss. Their timing couldn't have been any better.
Cayleigh has been doing really terrific and we feel SO BLESSED that she's made these strides of progress over the last week or so. She's tolerating bollus feeds really well. She's not needing the suctioning nearly as much (or at all) and is doing EXCELLENT on her stats. I'm amazed at the hand of the Lord in this entire process. He had hear our prayers and has begun to answer them, in His time, and bless us all. Please keep her lifted in prayer for continued success. Stable saturation level, stable heartrate level, that she tolerate her feeds well, that she be comfortable and more alert and aware, that she have increased flexibility and movements and that she cry and be free from illness/infection.
We are so excited because Cayleigh isn't going to have to wear a harness coming home. Down the line, somewhere between 6 mos - 2 years she will require a time where they will push her hips into alignment using xray (Cayleigh will be sedated) and then put casts on her entire legs/hips. There will be an opening for her hooha and butt so she can be changed and go potty. Oh, and no boots/splints. They said she doesn't need the splints on her feet so thats a good thing too - yesterday they were saying she needed them. They were actually going to fit her for them right then and there but Mel and Nic said Oh NO You AREN'T - because they didn't want them moving her all around after she'd just had a bollus feeding.
Did I mention Nic and I are going to be staying at the hospital both Saturday and Sunday night with Cayleigh. They are prepping her to go home - by Tuesday at the earliest! HOW EXCITING IS THAT?!
We'll have Oxygen at the house and portable, a suctioning machine, her feeding machine for the continuous night feeds she'll be on from 9pm-7am, and then her G-tube stuff.
It's scary but exciting. I can't WAIT.
Tuesday, April 5, 2011
It's time for an update
Tuesday, April 5, 2011
Cayleigh Jean is a Good Girl
Well, today has been an amazing day in what we pray is her continued road to total healing and success. She's been on a kick over the past 4 days where she has self recovered on desats/bradies and is just doing an increidble job.
This morning we dropped the kids off at their school & Juliette in the playroom and headed up to see Cayleigh. We find that she's been on bollus feeds since 9 am. Bollus feed is basically eating for a short period, then taking time off. This is basically how a baby would eat - you know, every 3 or 4 hours the baby eats for an hour or so and then they are done eating. So, now Cayleigh is 'eating' her feed over an hour and then she is taking 2 hours off. This means a bigger feeding at once, whereas before she was getting a small amount on a continuos basis over the entire day. We're really excited about this big step because it means she can be 'unattached' to the long tube thing and just have her little tummy plug when she isn't eating. More... portable. :)
So while we were there Daddy changed Cay's diaper (which had poopy, as always) and massaged her little edema areas on her upper thighs. He did her hamstring stretch and then put her harness back on. He also gave her meds as I pumped. then I measured out her feeding amount, 72 ml, put it in the hanging IV bag looking feeding bag, hung it, primed the line with milk to make sure it flowed properly, had the right drip and then I attached it to her tube, set the machine and started her feeding. By that time it was about noon and time to get the kids. How did we know it was noon? Because the playroom called like 3 times right on the dot - it was ridiculous, even the nurses said so. Relax dude, we're only a couple floors up and we're on the way - you aren't gonna starve.
We ate lunch and took the kids across the street to Starbucks where there is a large, brick patio in the front that wraps around the side. It was about 65 degrees outside and sunny, though windy, and we sat outside so mommys 'caffeine withdraw' headache could subside. Tayla read a book, daddy drank coffee and read the paper and the younger kids ran around. When we got back it was about time for the kids to go to the playroom so we dropped them off and went up to Cayleigh again.
I pumped while Nic changed her diaper for the second time today (and mentioned I owed one) and we just enjoyed seeing our girl. Nic did suction Cayleigh just for good measure but it wasnt necessary. While she slept Nic and I watched the infant CPR video and practiced on a dummy doll. 2 breaths, 30 pushes. The nurse gave us a little pocket guide because in a real emergency she tells us we'll forget. Nic and I decide we're putting signs up all over the place about all different things Cayleigh related from the amount of her feeds, to how often, to how to clean the site, what to do if XYZ happens and so on. You've got to be organized when you have a sick child.. you just have to.
Also - while we were up this afternoon Cayleigh was making her wincing face. Liz was standing cribside talking with us and then we heard it. Very brief, but definitely real. Cayleigh made a crying sound. Liz stayed nearby as we kind of watched to see what she did. She made more wincing faces and whatnot, and then two more times she made little noises. It was amazing. It is amazing. I'm very, very excited about this.
Please pray for Cayleigh - pray that she continue to be more alert, have increased flexibility, increased movement, that she cry, that she be vocal, that she be free from sickness or illness, full of peace, tolerate her feeds well, not need O2 or the nasal cannula and that she maintain her stable stats on her own. Thank you Lord for all of her improvements and thank you for her sweet little soul!
Please pray for our family, that we be free from illness - specifically colds, coughs, etc, that the kids be obedient, that they get along, that Nic and I be loving, full of peace, patience and that we be strict but kind.
Please also pray for my mother, father-in-law and husbands aunt as they fly out to Californie to see Cayleigh. That their travels be smooth, peaceful and safe.
Please also pray for my c-section incision as a part of it has re-opened on its own after it was healing. Pray that it be free from infection and that it heal on its own.
Finally, please pray that Cayleighs doctors and nurses have wisdom and compassion in caring for Cayleigh.
Thank you all for your prayers and for continuing to love and pray for our Cayleigh!
Cayleigh Jean is a Good Girl
Well, today has been an amazing day in what we pray is her continued road to total healing and success. She's been on a kick over the past 4 days where she has self recovered on desats/bradies and is just doing an increidble job.
This morning we dropped the kids off at their school & Juliette in the playroom and headed up to see Cayleigh. We find that she's been on bollus feeds since 9 am. Bollus feed is basically eating for a short period, then taking time off. This is basically how a baby would eat - you know, every 3 or 4 hours the baby eats for an hour or so and then they are done eating. So, now Cayleigh is 'eating' her feed over an hour and then she is taking 2 hours off. This means a bigger feeding at once, whereas before she was getting a small amount on a continuos basis over the entire day. We're really excited about this big step because it means she can be 'unattached' to the long tube thing and just have her little tummy plug when she isn't eating. More... portable. :)
So while we were there Daddy changed Cay's diaper (which had poopy, as always) and massaged her little edema areas on her upper thighs. He did her hamstring stretch and then put her harness back on. He also gave her meds as I pumped. then I measured out her feeding amount, 72 ml, put it in the hanging IV bag looking feeding bag, hung it, primed the line with milk to make sure it flowed properly, had the right drip and then I attached it to her tube, set the machine and started her feeding. By that time it was about noon and time to get the kids. How did we know it was noon? Because the playroom called like 3 times right on the dot - it was ridiculous, even the nurses said so. Relax dude, we're only a couple floors up and we're on the way - you aren't gonna starve.
We ate lunch and took the kids across the street to Starbucks where there is a large, brick patio in the front that wraps around the side. It was about 65 degrees outside and sunny, though windy, and we sat outside so mommys 'caffeine withdraw' headache could subside. Tayla read a book, daddy drank coffee and read the paper and the younger kids ran around. When we got back it was about time for the kids to go to the playroom so we dropped them off and went up to Cayleigh again.
I pumped while Nic changed her diaper for the second time today (and mentioned I owed one) and we just enjoyed seeing our girl. Nic did suction Cayleigh just for good measure but it wasnt necessary. While she slept Nic and I watched the infant CPR video and practiced on a dummy doll. 2 breaths, 30 pushes. The nurse gave us a little pocket guide because in a real emergency she tells us we'll forget. Nic and I decide we're putting signs up all over the place about all different things Cayleigh related from the amount of her feeds, to how often, to how to clean the site, what to do if XYZ happens and so on. You've got to be organized when you have a sick child.. you just have to.
Also - while we were up this afternoon Cayleigh was making her wincing face. Liz was standing cribside talking with us and then we heard it. Very brief, but definitely real. Cayleigh made a crying sound. Liz stayed nearby as we kind of watched to see what she did. She made more wincing faces and whatnot, and then two more times she made little noises. It was amazing. It is amazing. I'm very, very excited about this.
Please pray for Cayleigh - pray that she continue to be more alert, have increased flexibility, increased movement, that she cry, that she be vocal, that she be free from sickness or illness, full of peace, tolerate her feeds well, not need O2 or the nasal cannula and that she maintain her stable stats on her own. Thank you Lord for all of her improvements and thank you for her sweet little soul!
Please pray for our family, that we be free from illness - specifically colds, coughs, etc, that the kids be obedient, that they get along, that Nic and I be loving, full of peace, patience and that we be strict but kind.
Please also pray for my mother, father-in-law and husbands aunt as they fly out to Californie to see Cayleigh. That their travels be smooth, peaceful and safe.
Please also pray for my c-section incision as a part of it has re-opened on its own after it was healing. Pray that it be free from infection and that it heal on its own.
Finally, please pray that Cayleighs doctors and nurses have wisdom and compassion in caring for Cayleigh.
Thank you all for your prayers and for continuing to love and pray for our Cayleigh!
Saturday, April 2, 2011
Time to get crackin!
Saturday, April 2, 2011
Swing Baby, Swing
Today was a pretty terffic day. By far, this has been the best day since the day Cayleigh has been born - and I'll tell you why, in a few minutes.
First, we woke up this morning and the kids were pretty well behaved. At 9 am, a local day school came by the House and made us brekfast. We were super excited about getting to go up and see Cayleigh this morning before going to the zoo with the kids. So we got breakfast, headed to the car and drove to the hospital. On the weekends there isn't any shuttle bus transportation so we drive to the garage across the street from the hospital and park.
We get upstairs and settle the kids into the nearby lounge room (right outside the NICU doors) and everybody goes to the bathroom. Nic and I walk into the NICU and back to Cayleighs bed. Then we see her.. she's in a swing! She was rocking back and forth in a tan Boppy swing. It was the funniest thing ever. Everytime the swing went back, her eyes would open. When it went forward, her eyes closed. :) She looked like a real baby. I say that outloud and Mel (the nurse, Melanie, her Primary on dayshift) smiles and says she understands. It's hard to explain but Cayleigh has been in a crib since the day she was born. One of those hospital cribs, with wires, etc and in stable condition, desats every so often and whatnot - delicate I guess. We've taken her out, held her and all - but never handled her like you would a baby without Cayleighs problems. It was a really, really great thing to see.
Better yet? Cayleigh had been doing wonderfully all day and even over the night. Overnight she did excellent actually- and this is the first night she had that harness off. 12 hours on, 12 hours off now. That's the new 'rules' - instead of 23 on, 1 off. So maybe it was causing the desats. It makes sense, if it's pushing her hips in all day long it may hurt her. Mel put her in the harness and she'd been doing good even still. We didn't get to stay too long with the kids (who we let come in and see their baby sister in the swing -but not touch lol) but talked with Mel about how things were going.
Mel showed us a big box, this box is all the stuff (well, a small portion) of what we would be taking home. She then brings us the book of all our stuff we need to go over and get 'tested' on before taking Cayleigh home. How to change the G-tube, feed her with it, give her meds, clean it, care for her, suction her, etc. Alot of stuff. She tells me it's going to be time to 'get crackin' starting tomorrow. To enjoy our day with the kiddos at the zoo and that we'll be doing all the work when we're at the hospital from now on. I think I sat in shock a little while. A good shock, but still a shock. And then ,of course, nerves set in and I question what I now how to do and what I don't. She tells us that one of us will have to meet the Oxygen people out at our house because they will need to come out and see where she'll be and get all of her stuff set up and teach us to use it. That's pretty exciting..and scary.. but mostly just exciting.
It's strange. I'm very nervous even knowing how to clean her G-tube, and having had a lesson on changing it, emergencies and etc, but I'm also very excited. Nic is too. He, of course, like in many things is very confident. I, however, am 'eh' about it. I will, however, be 100% sure about it before we do walk out the doors with her *jumps up and down inside*! We both will be. We're going to be studying, learning - and most importantly - doing. I'm very excited. They don't tell us how long we have, but we feel its coming soon. it's going to be scary but its going to be great too. We ask if I can 'wear' her in the sling I have, but she says no. We can, however, wear her in something like a Bjorn carrier. Just not anything that would interfere with blocking her airways and things like that.
So, tomorrow starts our big day. I called several times today and everyone tells us she has been doing really good. She had 3 "bradia's which is when the heartrate goes down - but they were very brief and she brought herself out of it all by herself! Thats awesome too. I'm very happy. OH and did I mention how alert she has been too? God has really, so honestly answered our prayers. In His timing and in His way, but we are so eternally grateful to Him for loving us and loving her.
Please continue to pray for her. Pray for NO desats, NO bradies. Increased flexibility, increased movements, increased awareness. Pray that the Lord heal her sweet little mind, heal her sweet hips and just keep her in His palm.
Please pray for our entire family. Keep us in your prayers for strength, peace, patience and trust. And for well behaved children :) Thanks!
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