Moving on up...

Thursday, March 31, 2011
The Last Day Of March

I don't have much to say about today.... but isn't that how these blogs always start?

I went up to see Cayleigh this morning while Nic rested his ankle which has been giving him alot of pain. She was doing pretty good, in my opinion, and the nurse told me some good news. She mentioned to me that they would be removing her PIC Line (the line that runs almost to her heart) tonight and that she was going to be having her last antibiotic round today too. I was pretty excited about that to be honest. Cayleigh had a dirty diaper when I got there so I began the long process of changing her diaper, cleaning and changing her G-tube dressing and adjusting her harness. By the time I was almost done, and mind you I was giving her a massage and checking all the indents on her skin, the Physical Therapist came up to see me. She went over alot of different moves to do with her - but primarily some hamstring stretches to do with her.

She said to me that because Cayleigh is in the harness, her hamstrings become pretty stiff and tight. It's a good idea to stretch the muscles and help her to stay loose. She also sohowed me a move that involves putting your fingers right about her butt cheeks, and gently rounding her hips & legs up (sort of putting her into a C shape) really gently. This prevents her from having a flat spine. When the harness comes off, their back lays flat against the bed. It doesn't allow for curving to the lower spine which everyone has slightly. So this little rolling up, and then slight moving of her hips to the left and right will help her maintain flexibility.

I asked the nurse on hand if she thought it looked like there was some breastmilk in the secretions Cayleigh was having and she said she thought that, at times, there was. She said she'd made note of it in her files. I explained to her that, over the course of the week, it seemed that Cayleigh has been having more desats. She refers to some chart that shows the last 48 hours and says it looks like she's been doing the same. I tell her no, I've been with her since she's been born and I am not talking about the last 48 hours I'm talking about the last week and I want to know why. I ask her to ask the doctors about reevaluating her meds. She's gained over a pound in the last week - she may need more anti-secretion med or more reflux med - or a different reflux med. They need to figure it out and be aware. She tells me she will let the doctors know my concerns.

So by the time all of this was said and done, it's been almost 3 hours (1 pm) and I needed to head back to the house to get some lunch, pump and then Nic and I would head back up. I did and then Nic and I returned to the hospital. The first thing Nic asks is about whether the doctors are going to adjust Cayleighs medicines. She tells us that they want to wait and watch what she does. Over the last 48 hours they've upped her food and since her stomach is really small, it will take some time to adjust to it. She tells us that she is tolerating her feeds well but she still needs time to adjust to the amount and whatnot. The reflux could subside, blah blah blah. Nic gets a little pissy and asks how many desats she needs to start having before they adjust her meds. Part of this, I think, is that he is in pain. I know I have been very short tempered shortly after having surgery, I still have pain now and get a bit short when it hits me. He sits down and I start changing her diaper.

I ask a question about changing her G-tube dressing and the nurse tells me I don't need to. I'm confused, I say. The dressing she has on there is obviously the same one I put on there earlier. She says it is. I tell her there is some green stuff on the white, top layer. I thought I was supposed to change it every time I change her diaper. She tells me I don't need to. She says this isn't green - its yellow. And that some discharge is normal. I tell her I can't tell the difference. I feel myself getting frustrated and see a doctor. She asks me if I'd like to talk to him and I say yes.

I start the conversation by telling him that I've already asked the nurse these questions, but he's the doctor and I want to hear it from him. I talk to him about the secretion meds - he says that they adjust the amounts twice a week and they are going to be adjusting those. Good. I ask about the amount of food she is having and ask if she is tolerating it - he says yes. She's at 20 ml, and she seems to be doing good. I ask him about the G-tube. He comes over and says that I don't need to change it every time I change her diaper. Only when it looks saturated or dirty. I tell him the top layer, the white stuff, had the green stuff. I proceed to pull it out of the garbage. I see the nurse give me a look and I'm pretty sure I shoot one back. I ask if he thinks that is green discharge. he says it isn't. It's a normal yellow stuff.. not the same thick mucus like stuff she had when it was infected. He tells me the ace bandage like stuff that sticks to her skin pushes and moisture up and then absorbs it. Because I'd put this gauze layer on top of that layer to help stabalize the G-tube, it absorbed the 'yellow' *cough green cough* discharge. But because the ace bandage stuff wasn't wet or dirty , we didn't need to change it. He said before, they were changing (the nurses) it at every diaper change because it had been saturated. He says now we can leave it on until it looks nasty or wet. I ask how long? I feel myself getting upset. I need rules. He says "You will just change it once every 24 hours unless you see the pad wet". I am immediately relieved. I feel myself not so upset anymore and say thanks. Truly, that was all I needed. With as many questions and unknowns and I (we) have to deal with - I need some stinking rules or guidelines when it comes to some things. My daughters dressing is one of them.

Anyhow, he left and Nic ended up leaving because he needed to rest his ankle. I sat down to hold Cayleigh and proceeded to soak up the cuteness. Then a lady comes over who I recognize but she is in street clothes so I wasn't sure. It was the genetic doctor. She sits down and tells me she's glad she caught me. She was leaving and wanted to swing by to see if we were here. She then tells me the doctor told her my findings with the Worster-Drought Syndrome. She is really excited. How did I find it? she asks. I tell her 'google'. She looks stunned. I tell her that I've been researching all kinds of things and that I just finally came across this syndrome that seemed to match her symptoms. I tell her I found it on a UK hospital website. She asks me more about it and I explain what I've learned. She says that it may be related to the 15 cases-to-date 21.1.Q duplication (or whatever it was) genetic thing they had found. Basically, she was saying that, while they put these symptoms together and called it a syndrome (which means not genetic), they may have found the missing genetic problem that could be the missing link. They, then, could get the credit. She tells me she is going to be presenting this tomorrow before the huge board of geneticists that will be meeting. She will be contacting these UK doctors to see if they've done genetic testings (the really in depth ones that THEY have done on Cayleigh) and if they hadn't - UCSF would be requesting that they do to see if there is a missing link that ties the cases. She asks me if she can take a picture. Genetics people use pictures to link the features, etc of the people affected. She then takes a picture of ME, and then two of Cayleigh. I'm not sure why she took it of me - but, whatever. If it helps, it helps.

So, after she left I turned back to Cayleigh. She was awake now. After the flash of the camera she was up. And she STAYED up. She was looking off the left, as she often does, but then started to focus on me. I was really excited. For the next hour she stayed up with me while I talked, prayed and sung to her. She was even focusing on me for the majority of the time. It was AWESOME!

We'll have more news tomorrow and over the next coming days. Please pray that Cayleigh make good progress in that she tolerates her feeds, that she have no infections or illnesses -viral or otherwise, that she have more alterness, more focusing, increased movements and flexibility and NO MORE DESATS! :)

Thank you all!!
and ENJOY

(PS. I snuck a huge flower headband up this morning, while Nic was here, and I took alot of pictures with her in it. :) )

That's just her

Wednesday, March 30,2011

Today was better than yesterday. Nic and I headed up to the hospital to see Cayleigh around 10:30 this morning and stayed with her until 2:00. We gave her a bath in her crib and she really enjoyed it. I cleaned out all of her crevices and creases and then gave her a rreally nice rub down/massage with her baby lotion. She did really well the entire time except right at the very end when she desated - BUT she brought herself up all by herself.

I asked Sue if it's normal for babies to desat and then bring themselves up on their own. She kind of got this look on her face and then she said that she's learning about Cayleigh as she cares for her. That her situation is unique and that, in regard to her secretions, desats and little quirks, "that's just her". She is her own, unique little puzzle and we are piecing her together, figuring out what works for her, what she likes, what she doesn't like, what she needs and so forth. I will say that when she desated I didn't freak out for the first time. I just sort of watched her and then was prepared to suction her. That's a big step for me. I'm ready for this challenge - through Christ who strengthens me and gives me wisdom. Please pray that my husband and I be blessed with wisdom, patience, peace and a real sense of what Cayleigh is needing - as only He knows.

We left her be without picking her up because we wanted her to get some rest. Her heartrate was still a little bit high today. We asked the nurses about this, and also the neonatologist, but they all didn't seem to have any real reason as to why it's higher. The doctor mentioned that by the time they start to find out why it's higher it ends up going back to normal. Although that doesn't seem good enough to me - I am going to go ahead and just accept the answer so that I have one less question in my mind.

We did meet the neonatologist that is on this week. He came up while we were talking to the nurse, Sue, who has been taking care of Cayleigh the last 2 weeks. The guy just stood there, looking like he wanted to interupt us, until I said hello to him. He introduced himself to Nic and me (he had, apparently, met Nic briefly before) and talked about wanting to sit down and talk with us. ANOTHER meeting. This one is going to be Monday at 11 am. Meetings make me nervous, really nervous .. but, you just have to bite the bullet.


So Nic and I came back to the house and made some lunch for ourselves, then headed up to our room so I could pump and he could rest his ankle. He's been having alot of pain and it's catching up to him with all of this walking around. We do walk..alot. Everywhere we go - but its so, so much better than driving. I sit in the passenger seat and get road rage. The people here ... well... it's just crazy. If you've never been here you wouldn't understand. If you have, then you do. That's all I can say - its just crazy.

We headed back up to the hospital at 4 and saw our Cayleigh laying there. This time, though, I felt like I had an answer to all of the questions I've been asking myself, and doctors, over the past few weeks. in the past several weeks I've been doing extensive research on all of Cayleighs many symptoms. I didn't know what was going on with her as far as what she has, what can be done to help her right now or what her future is going to be. I told Nic today that there have been nothing but questions for me since she's been born. TODAY...yes, Today, I was pumping and doing more research and then I found it. Yes, the it that has answered my questions (as far as I'm concerned). It is called Worster-Drough Syndrome. It brings together all of her many symptoms and ailments..and it gives me some hope. And so, I wrote down everything about it and I took it to the hospital with me. As soon as I got there I asked to talk to the neonatologist. She came down and I explained everything about it. She had never heard of it - but took all of the information I'd found and said she was going to look into it. What's funny is that I found the information on a UK medical hospital website. I feel like I'm not so alone anymore. Mind you, only 1 in 300,000 babies have been diagnosed with PMG. So anyhow - I guess this will come up at the meeting on Monday to see whether they think this could be whats ailing her.

Nic called to check on Cayleigh a few minutes ago. She's doing okay. The nurse Liz said that she's had a few desats since she's been on. She was changing her diaper right now and her heartrate was 180. She said she had to suction her stimulate her. I wonder if she is even giving Cayleigh time to bring herself out of it. Sue, the nurse who is on during the day and has had Cayleigh a few times now, allows Cayleigh time to bring herself up. It's a little disheartening to hear - so please keep her in your prayers.

So this is a basic rundown of her day - she's doing good as far as I'm concerned. We are going to ask for continued prayers for our sweet Cayleigh. Please pray that she have stable heartrate, stable oxygen saturation and that she breathes easy. She's our sweetheart and we adore her.. so please keep her in your prayers.

Please also pray for us, for God to sustain us, keep us close and as a united force. That we have patience, peace and wisdom.

Please pray for the doctors and nurses who care for her to have wisdom and compassion.

Please pray for the kids as they prepare to come here to stay. That they have peace, that they know they are loved, that they feel secure and that they are well behaved.

Thank you all for your prayers!

Stupid desats

March 29, 2011
I think the title says it all.

Today was not such a great day. Well, it was a great day in that my precious baby girl is alive and the Lord has blessed us with her. Not such a great day in that she desated, 4 times, while Nic and I were there.

Her heartate was in the 180s, even getting up to 191, the nurse assures us this isn't due to any problems. She says it could be because of the antisecretion medicine. She's been on that medicine for awhile now and her heartrate hasn't been that high. I ask if it could be due to infection or a cold or something..she says no. Fine

She had desats throughout the day. None of them required more oxygen or the little mask (Praise the Lord) but 3 of them required suctioning. NO MOTHER SHOULD SEE HER BABY TURN BLUE. It makes me sick. It's SO beyond frustrating.

Anyhow, I don't really have alot to say. She's at 13 mls of feeds and this lady today didn't have her vented during her feeds like the nurse yesterday did. She did tell me she'd put "please have baby positioned in Boppy pillow" on the chart though, so that was nice.

I'm going to vent. The first time, Nic was holding her and I was talking to her. Suddenly I'm looking at her and her mouth, then cheeks turn blue. We suctioned her and she was ok. Then, not too long after she desated again. Then, I was holding her tonight and was praying (closing my eyes, talking into her ear) and I suddenly feel no movement. She wasn't breathing. I look at her and she's blue again, eyes rolling back. We suctioned her and she was ok. The final time, we just put her in the boppy and I was praying with her and she stopped moving (breathing) again. That time, I grabbed the suction thing and tried both nostrils but got nothing and she quickly recovered all on her own.

I'm not angry because I know in my heart God is in control.. but I could be angry, very easily. I am just really frustrated. I want her home... but I don't want to worry so much that I cannot, for even one second, take my eyes off of her. How would I take a shower? Go to the bathroom? Cook dinner? Drive in the car? *sigh*

Please pray that Cayleigh doesn't have anymore desats.
That her heartrate stay in a stable range (nearer to 160s)
The her oxygen level stay in the high 90's to 100
That she have control enough in her swallowing to rid herself of these secretions
That she be protected from getting sick in any way
That her G-tube site continue to heal, be less red, no discharge and that she handle her feeds well
That she have increased reflexes
Increased awareness
Increaed movement
Increased flexibility
and that she start to cry.

Please pray for Nic and I..not sure for what exactly, but patience, peace, sustaining, love, faith and positive attitudes come to mind.

We will have the kids coming to stay with us up at the Ronald McDonald house full-time and have them in the school at the hospital for an unknown amount of time. My mom has a cold, and since she can't handle the kids full-time we are going to be bringing them here. Please pray for a smooth transition and for wisdom in raising and disciplining these children.

Thank you all for continuing to pray. Please don't stop -ever.
here are some pictures

BTW. I will say that tonight, while I was holding her, she locked eyes with me for a short time. It was amazing.. AMAZING. :)

Just Pray On It

March 28, 2011
*My Pumpkin*

I will just start this post by saying that, since the last meeting with the doctors who said we 'may be going home in 3 weeks', any desats are like a blow to the face. I'm going to simply say she had one while we were there today...while I was looking right at her, talking to her, my baby turned severely pale and blue.. and then the nurse jumped over a garbage can, ran over and suctioned a bunch of crap out of her nostril. No mother should experience that . .. ever. EVER. (or father, sorry babe.. I was speaking from perspective)

This afternoon, Nic and I met my mother in San Fran at the BART station and dropped her off because my mom wanted to have her for the week since she's got surgery next week on her shoulder. (my mom does) We dropped her off this afternoon and then went straight to the hospital.and headed directly up to the hospital. I have to admit, it was a both very weird and slightly less stressful not having Juliette to deal with while going to the hospital. It was weird in that she is a staple in my,our, lives. She's like my little buddy. She's definitely daddy's little buddy. But, it was nice that I didn't have to redirect her several times, see any tantrums, play I Spy the entire bus ride and so forth. I definitely miss my little buddy though :-/

When we got upstairs there were a bunch of people, doctors, chairs in the room. We met the current nurse and said hello, washed up and went to see her. Nic changed her diaper and I asked the nurse why her heartrate seemed high - it was upper 170s. She said it had been in the 170s and 180s all day. I told her that wasn't normal for her so she must be having discomfort. I told her I wanted her to have some pain medicine. Nic agrees and says its only been a week since the surgery so it could hurt still. As I sit here now I have the thought that I want them to check her Central Line. This is probably because the nurse tonight kinda freaked me (maybe us both) out by saying that the Central Lines (which go close to the heart) get infected all the time. Nic told her that we were told they were better for her to have.. she proceeded to tell us about how delicate they are and susceptible to infection. (NOTE: I called while typing this: I asked if her heartrate is higher due to possible infection in the Central Line.. they assured me no. There are many other things that would be going on if there were an infection. I'm satisfied that isnt the cause. However, the heartrate is now only 165. I told the nurse I feel its becuse we gave her the Tyenol. *hint hint Lady.. hint hint*)

Speaking of which - Nic gave her the Tylenol suppository, without gloves, and held it for the 3 minutes it takes to dissolve. Like she did to the nurse, Mel, the other day, our sweetheart proceeded to poop on daddys finger. (::Insert Hysterical Laughter Here::)

While daddy went to wipe off the poo.. I got in there and finished changing her. This involves wiping out all of her many crevices. She has some swelling in her upper, inner thighs and has alot of little rolls in there. So we have to wipe them out really good to prevent build up or infection on the skin. I changed her, and had just begun to slip the other diaper under her bum when she pooped on her outfit. SO, then I had to clean her up again, rub her down with baby lotion (more like massage her) and then take off the outfit. It takes two people to change her (well for us) as one of us holds her up, the other takes out the dirty outfit, slips the new one under her on top of her open harness and then we can get her dressed. We have to position the outfit right, the harness, the diaper.. etc. It's quite the ordeal with all of the wires, tubes, the G-Tube and everything else, but then, VOILA, she's dressed.

Besides the desat I opened with (sorry about that opening everybody), she was great tonight. We both got to hold her for quite awhile, and just bask in th the Cayleighness. I was praying with her and it came to me that instead of praying that she suck and swallow - I will pray that she have a stronger swallow, stronger muscles and be able to handle the spit all on her own.

Praise here - the G-Tube site is looking better than it was. The nurse, however, scared me a bit. She told me that she hadn't changed it because there wasn't any leaking of food. I asked her 'well, what about the green stuff?" She looked worried. Green stuff? She quickly changed the pad and there was green stuff. It was really easy to clean (says daddy) and wasn't as thick or puss looking like the previous stuff. The redness is less angry red and more pink red. I'm very grateful for this.

Also, the really bad baby acne/rash thing looks like its going away on its own as well.

Please pray for our sweet Cayleigh, for us and for our family. Thank you all for continuing to read, continuing to pray and continuing to be so wonderful.

I don't eat food with eyeballs...

Sunday, March 27, 2011
Cayleigh Jean is 38 Days Old

One of the 'perks' of living at the Ronald McDonald house is that some businesses extend 'treats' to the residents here. One such business is the Exploratorium in San Francisco. The place has a very old look to the outside, with a huge, gold dome top and Romanesque carvings in the, large pillars and the like - it's really a beautiful building. Inside is quite fun with TONS of stuff to do for kids of all ages. So we took the kids there yesterday and they had a really nice time.

Today we took the kids back to Mountain House after going to church this morning in Livermore. Jacob had a birthday party to attend at 1 pm so we no sooner got to my moms than we turned around and had to get him ready to leave. Tayla was excited to be home and back in her comfortable environment...but did give me kisses and hugs before we had to leave again.

When we left, we headed straight back to the hospital. Unfortunately, there is no shuttle transportation on the weekends. Paying the parking prices at the hospital is not something I miss very fondly. It's just unfortunate that they don't provide free parking to those who are family of patients staying there. As a matter of fact, even employees have to pay for parking from what we were told. I think the parking garage alone (as, almost frighteningly jam packed as it is) pays the hospital's bills. :)

We get upstairs and take Juliette with us to see Cayleigh. I walk in a little behind Nic and notice a tall, bald man wearing blue scrubs standing over Cayleigh. I get a panic feeling when I walk up and see him looking at her. I didn't know what was going on as 2 nurses and him stood there looking at her face. Come to find out, the small patch of pimples on her left cheek that I noticed yesterday (and pointed out) and little bumps Nic had seen the previous day (and pointed out) got progressively worse and was all over her face, chin and forehead. He assured us that this was just baby acne. The nurse had called him to look at it because of how rapidly it spread. Given its locality and coloring, however, the Dr (resident) assures us that it's just baby acne. At worst, he thought it might be a yeast thing but it would have been much redder - and that would have been easily treatable. *PRAISES*

Cayleigh was out of her harness. The nurse today tells us that its now 4 hours on, 4 hours off. Before, she says, it was 3 on and 3 off. We tell her that we were told it was 23 on and 1 hours off. She says no, 4 on 4 off. We say ok. It seems like stuff changes with each shift.

She did really well while were were there. She was sleepy and we prayed over her. The nurse showed us her G-Tube site which was MUCH less red than it was before. She was really easily moved (limbs) and we were, overall, happy with how she was doing. One thing different is that they were no longer 'venting' her during her feeds. So now, they have her tub thing closed (and not attached to a hanging syringe) during her feeds (which are up to 6 ml now). They are going to watch and see how she does. Ideally, she will have it vented an hour after she eats. She did seem gassy. She was farting and even burped from her mouth. I don't know what the think about all of this because I don't know the first thing about G-tubes. The nurses think I'm a little 'overly worried' about her - I call it being her MOM. If I have a question, I ask. If I have a concern, I voice it. She's my daughter. That's MY job. (her Daddy's too. But apparently he isn't the 'worrier' - I am) I think it's just me being cautious, curious and needing to ask the same question to different people over and over because they give me a different answer depending on who I ask.

So anyhow, we ended up leaving just as Jessica (my sister) and Gary (brother in law) were getting ready to head up to the hospital. Nic and I headed home with Juliette and settled in to the room for a little while to decompress from the day. Jessica had asked if we wanted to go with them to a Broil Crawfish place in San Fran that our husbands had gone to before with my dad & brother. We said sure - it would be nice to get out of the house.

Jessi and Gary picked us up and we headed to dinner. It was raining - as is a seeming constant in San Fran - when we arrived. It was a blessing that we even found parking remotely near the place. We walk in and the place is small, but seems large. If that makes sense. We all order. The guys get crawfish, Jessi and I split crab legs. We were going to order shrimp - but after seeing the table behind us who had shrimp that were fully in tact - eyeballs, legs and all - we decided on the crab legs! I don't eat food with eyeballs, neither does she.

Dinner was terrific. Being 'away' from it all was terrific. All in all it was a very nice night. Though, Jessi did tell me that while she was there Cayleigh had a desat which require suctioning. That's always a bummer for me. She did, however, tell me that the nurse mentioned that if Cayleigh weren't swallowing at all she would have alot more secretions that she does. that made me really think about it - and smile inside.

In all of this God has been very, very good to us. We've been blessed with a beautiful little girl who is here with us and is a real fighter! She's strong. She has come a LONG way since when she was born and she continues to prove everyone wrong.

We do ask that the Lord would continue to heal her. That her G-Tube site would be free of redness, puss and any infection. That her secretions would no longer cause Desats of any kind. That she would 'awaken' and begin to swallow stronger and handle her own secretions without assistance. That she would have increased flexibility, movement and alertness. We pray for wisdom for the doctors and nurses in caring for her, that they would have compassion and wisdom. We pray that the Lord would put a hedge of protection around her and protect her from the enemy, from sickness or disease.

Please pray for our children. That they would know they are loved, have comfort no matter where the are (San Fran or Mountain House or here). That the Lord would watch over them, protect them and keep them safe from the enemy. That they would be kind and loving..and obedient. :)

Please pray for Nic and I. For strength in our marriage, in our faith and for each day to bring new affections and love for one another. Thank you all for every prayer you pray. I'm including some pictures of her today. One is of her, getting better, g-tube site, the other is of her double chin (I love it) :)

Ohh how i love the smell of my baby

Cayleigh Jean is doing great. She does have an infection of the skin around her G tube site, but is getting antibiotics to treat it. She was leaking her stomach juice out of it and thats what caused the infection. Other then that she is doing great on her stats, they even dropped her oxygen flow to 1/2 liter, and is not getting any saturation. She is wearing a harness 23 hours of the day to try and put her little hips back into place. She is so cute in this thing, she is like a little bundle of joy.

I find it wierd that i love to smell Cayleigh, i have a blanket from her that i smell every night before i go to bed and i find myself smelling her dirty clothes that i need to wash, because i cant get enough of her. (i know iam goofy) but i love my pumkin butt. Its a combination of baby smell, breast milk, and dirty diapers... LOL...but ohhh well, what can you say, its my first baby and she is PERFECT!!!!

Thanks everyone for the continous prayers for our PRINCESS!! She loves you all and cant wait to see everyone on the outside of the NICU.. We will be posting pictures of her very soon, keep posted....

"The" Meeting

Wendesday, March 23, 2011
The Meeting

Nic and I made it to the hospital, with Juliette in tow, and dropped her off for 1/2 hour in the children's playroom on the 6th floor. We were told they didn't have volunteers today so she couldn't stay to play without a parent. We ask if she can stay for 1/2 hour so that we can focus during our meeting and they make arrangements for her.

Nic had been up earlier with Cayleigh while I stayed with Juliette who had the sniffles today. (please pray those clear up!) Cayleigh had a great day, the IV in her head was taken out and she was in her pink, fleece looking harness without desating. Nic says the OT told him they were going to start it off a little loose and then work it to the tightness she will require to get her dislocated hips back in place.

We make it upstairs to the 15th floor and head to the meeting room. The social worker is there, the pediatrician, the genetics doctors, a nurse and the lead physician are all in attendance. The neurologist wasn't able to make it due to schedule - her name is Dr. Farmer-Barker. She will be the one following Cayleigh through her progress and even after discharge.

so the lead physician basically asks us how we feel everything is going, what are we comofortable doing and what the plans are for the near future. Nic and I basically tell her that we're comfortable with everything. We have our reservations about evening shifts or if one of us has her in the car solo and the other isn't present. We want to make sure she is not desating or anything without us knowing. Which, she has gone drastically down to having just 1 per day - so KEEP UP THE PRAYERS! Let's shoot for ZERO!

She tells us about all of the potential equipment we might be having, and be trained on, before bringing her home. A portable suction device, oxygen with the nasal cannula, the desat monitor and the G-tube stuff and we will need some home nursing as well. She tells us that she'll also be on medications such as the reflux meds they are using, robonal (the anti secretion stuff) and viatamins. She won't have an IV, she'll just get them through the G-tube.

When? Well thats the question that doesn't have any definite answer...our hope is 3 week! She needs to be up to 21-25 ml per hour in her G-tube (she's upped from 6 to 9 today) so that her small stomach (which is small compared to others her size - but who compares?!) can begin to expand and stretch to hold it and digest it. Around that time (when they get up to the 21-25ml) they will remove the PIC line too.

Like I said, she's got her pink harness on. Before, when they put it on her she desat'ed until they took it off of her. Today she's been good! Pray for that!! she'll wear the harness, which will slowly adjust the congenital hip dislocation and bring the hips into alignment. She'll require a great deal of Occupational Therapy and Physical Therapy to work on getting her aware of everything she should be doing, bringing things to her mouth, walking, etc. (obviously in the future) and I (we) will work with her at home too.

The genetic dr, Dr Wagner and Dr Sheh, tell us that they have a very small finding which basically only has 15 reported cases anywhere. They used such an in depth test, one that goes far beyond normal genetic tests, that they found this tin part of one of her chromosomes that was duplicated. It's called 1Q21.1 Duplication. Don't bother googling it - there are way too many different things that people think and there is absolutely no research or evidence to back it up. They don't know what it causes, what it means or how its caused yet. It's a new finding with a new test. There are people in the study that are totally normal, one with mental retardation, one with ADHD, one with Autism, one with a heart defect, one with dislocated hips, one with arthrogryposis (which Cayleigh does have).. they are all totally different. We agreed to get both of ourselves tested for their research and to know if either of us had it. I'm not the least bit worried about it - to me, they were grasping at straws in the air and came up with this. It doesn't change anything whatsoever, no new treatments, no nothing. I like nothing.

So that's it. My baby is a champ. Please pray for her to continue to make progress and to defy the odds and expectations of doctors. Pray for her doctors and nurses to have wisdom in caring for her. Pray that she maintain stable stats. That she does well in the harness. That she tolerates and digests all her feeding increases well. That she doesn't get sick in the NICU, that her G-Tube heal and have no complications.

Thank you all! Enjoy the pics (Yes, she is his clone)

Life in a Jelly Jar

Tuesday, March 22, 2011
Cayleigh Jean & the leaking G-tube

It seems like it's been harder and harder to get my blog time in but I'm definitely going to work on it. With trying to jumpstart my headband business to contribute some kind of (hopefully) income so it's not just my husband, being back and forth between the hospital and the Ronald McDonald house, pumping, (trying to) be the wife my husband deserves and everything else I just feel tired. It's a good tired though. I won't complain - we are so very blessed to be at the Ronald McDonald house. We have a hotel room sized room with our bed and a twin bed that Juliette uses. We have our own bathroom and 2 dressers which is really nice. There's a common area/dining room downstairs where they have tables and chairs that sit just outside the playroom. There are 4 levels of the house - the top I think is just to get to the roof or attic..I haven't been past the 2nd floor where we stay. There is a shuttle that runs Monday through Friday until 9 pm that we can get on 1.5 blocks from the House and drops off just down the block from the hospital. Plus, it's really good that Nic and I get to walk so much (*laughing*) because we have to walk everywhere. It's not that we don't have the van - it's that there is NOWHERE to park out here.. without paying through the teeth anyhow.

Cayleigh was doing pretty good today. When we got up to her she was 'sitting up' in her boppy pillow that we brought from home. She has an IV in her head still even though they inserted the PICU central line in her inside,upper right arm (they put in a Central Line which runs like a vein through a tiny catheter thing and stops just outside her heart). Nic told me tonight that they'd decided to pull it out just a little bit as they felt it wasn't in the right position. To insert this thing they use an ultrasound machine - it's a pretty intense procedure that takes an hour to do. They'd tried it before in her leg and weren't successful, but this last time they were.

The IV in her head makes her look really sick, but (in my opinion) she's not! Besides the fact that it makes me nervous to hold her and they shaved my babies hair - I question why they need to have this IV in her head when they have this deep set one in her arm. It's frustrating. They tell us it's because they don't want to take out a 'good' iv. Well, we'd sure wish they'd just pick one and take something out. She's not a pin cushion after all.

The nurse, Liz, tells us she is just about to change Cayleighs G-tube dressing. It's quite the process. First you have to clean the area- and when she did it I noticed there was some redness around the site. I asked her about this because when the surgeon lady showed us how to change the G-tube she said redness is an indicator of infection. She tells us its fine and that they'll watch it. That its a new wound and will have some redness. Then she uses this adhesive stuff and wipes it all around the area, then she puts on this tan powder stuff and rubs that in - which is to absorb the moisture, then you put on this cut gauze stuff. It looks complicated but I suppose it isn't. She tells us that the OT (occupational therapist) is going to be there at 1030 and since we had only 30 minutes until she came at that point I tell Nic I didn't want to give her a sponge bath until after I held her and the OT lady was done.

I held her awhile and then the OT woman shows up. She's from Ireland and is soft spoken. Cayleigh is really sleepying soundly and relaxed so much so that the OT says she's never seen her so easily stretched. It's partially because this is one of the first times she's worked with her half sleepy and partially (mostly) because she was relaxed on Mommy. she does all of her exercises and explains everything she's doing and how to do it while i'm holding her. I'm secretly happy she didn't ask me to put her down and that I got to hold her. :)

We put Cayleigh back in her crib so that we could give her a sponge bath. She couldn't have a regular bath because of the g-tube so we were going to bathe her in her crib like we'd done before. We had to get it done because, at noon, we had to pick up Juliette from the playroom (its open 10-12 in the mornings). We each take a side of her and begin washing her with warm, soapy gauze. We only got to wash the left side of her head/hair because of the (stupid) IV in her head, which was kind of disappointing. We finish up and Nic notices the gauze we'd just had changed was already leaking. He asks Liz if we can go ahead and change it again and she says yes. I was a bit hesitant and told Nic I wanted her to do it but he wanted to take charge because we'd have to do it later when she's home. I just felt like it is too close to surgery and so I thought it best to let Liz do it - but he did it very well. It freaked me, and him, out when he took the gauze off and there's this chunk of her feeding around the wound. He shows it to Liz and she says it's ok, it can happen, its just from the slight leaking. It seemed hard to get off, but Nic does and then he completes the rest of the steps.

While he's doing this a hospital volunteer is walking Juliete in to the room. She tells us that Juliette wanted to see us. We both know she wanted to see Cayleigh. I help Juliette clean her hands while Nic and Liz button up Cayleigh in her nice, warm, fuzzy, purple and brown Carters jammies and get her situated.

Juliette comes over to the crib and tells Cayleigh her big sister is there. it's very sincere and sweet. She watches Liz and Nic situating Cayleighs wires and whatnot and just stands quietly. She's a champ and Cayleigh is too!

The child life person brought us a makeshift mobile, that doesn't move, but makes music and has some cardboard,plastic covered black and white prints for her to look at. So when we were leaving Nic and Liz worked together to get it hung on the plastic tube extending across Cayleighs crib. I took a few photos but we haven't uploaded recently - so stay tuned!

On a funny note, when we first got there, Nic was changing Cayleighs diaper and, mistakingly, removed the dirty diaper from under her bum before putting the new one down. He went to grab a wipe and she pooped right there, onto the bed. HYSTERICAL. :)

Tomorrow we have to meet with the doctors, genetic doctors, etc at 2:30. Please pray for us during this meeting.
Please pray that Cayleighs G-tube surgery heals and has no infections
Please pray for excellent health and stable stats for her
Please pray for excellent health for Nic, Juliette and I so we can see her daily

Thank you all so much!
Additional prayers for other house babies:
Adrielle (baby boy)
Andrew (3)
Emily (preemie)

Thanks!

No news is good news

Sunday, March 20,2011
Ronald McDonald House

Nic and I made the 1.5 hour drive back home so we could go to Cornerstone Fellowship this morning with the kiddos before taking them back to my parents' house. It was nice to be back in a familiar place and meet with people who love, care about and pray for our Cayleigh Jean. We dropped the kids off after church, kissed them & squeezed them tight and then headed back to San Fran.

We got 'home' and dropped off some more pillows, the rest of my hair accessory materials and some of Juliette's stuff. Then, we hopped in the van and headed to UCSF Children's Hospital. It was exciting...we hadn't seen her since Friday night. To be away from your baby that long, no matter how good of hands she is in, is very hard.

We walked in and I noticed her heartrate was a little high (to me) at 170's but when I got to her crib I see she's wide awake. Their heartrates are normally higher when they are awake and alert..makes sense, so is ours. It was strange walking into the West Wing because the entire first room was empty. No cribs. I asked our nurse, Kelly, if they were cleaning the room and she said that they'd just moved the babies into the back 2 rooms for staffing purposes. I said to her it was a good thing there weren't alot of babies - that means they're healthy. :)

Meanwhile, Cayleigh has on one of those hospital issued white, long sleeved, wrap style shirts. Then I notice she's got an IV in her head again. This time the IV is on the right side - AND they've shaved the front, middle part of her hair. WHY did they have to shave her hair? Last time she had an IV in her head they didn't shave her hair. *sigh*

Cayleigh also had a paper mobile with bright colors on the tubing stretched across her crib. The tubing is used to hang her G-Tube syringe that is used for 'venting'. The venting is basically an open syringe, with the plunger taken out, that collects anything pushed out of the belly - including air. It bubbles when she 'burps'. Its kinda intimidating to figure out how to hold her with the IV in her head and the GTube thing hanging but we figure it out with Kelly helping us.

Juliette is with us and she is excited to see Cayleigh. Her "baby Cay Cay" as she says, was wide awake for quite awhile. Juliette was standing near me as I was holding her, singing to her (by her head) and twirling around. Nic got a little nervous when Juliette grazed my upper arm and was too close to Cayleigh's head so he decided to take her to the cafeteria for pudding.

Around us in the room are 3 other babies. 2 sets of parents are there. Directly across from us are an odler couple with newborn twin girls. One of the girls is in a carseat next to the father on the floor, asleep, and isn't in the NICU. The other girl is behind a nursing screen with the mother and she is the patient.

To our right is a mother and father with a dark blonde baby girl who isn't attached to very many wires. They've got her carseat there which is a sign they are going home soon too. We find out she's 3 weeks old.

Across from her is a little girl baby who is sleeping soundly in her crib.

Back to Cayleigh... as I'm singing to her, holding her and talking her heartrate comes down. She's doing really well according to the nurse. While I'm holding her she does a slight breath holding thing but brings herself right back out of it. She does the breath holding thing while she's straining like she's pooping. I tell her not to do that to mommy again. She agrees not to. :)

Our time doesn't last too long because we've got to get back to the House before 7 (which is shift change..and that lasts to 745 ish which is too late for Juliette to be out) so we put her back in her crib, Juliette prays over her and then daddy and I pray over her. She is half asleep and I tell her I'll see her tomorrow.

Back at the house there is a common room full of people ....most of them are the folks who made dinner tonight. There is a table with 3 bowls of salad, 2 tins ofbaked ziti, some french bread and sodas. I'm elated because I know my husband loves Italian food - and I'm a fan too.

This is pretty much all that happened tonight so far. Right now it's 11 pm and I'm going to be calling to check on her in a few minutes. Juliette is passed out,sound asleep and Nic is watching TV. I won at Dominoes tonight :) (just thought I'd throw that out there)

xoxo

Please pray for Cayleigh
That she digests her feedings well
That she handles increases well
That her heartrate and O2 rate stay within the doctors 'normal' ranges
That she begin swallowing soon
For increased flexibility and movement
That she start crying
and that she can come home soon

Please pray for the kids (Applies to Cayleigh too)
that everything is as normal as possible for them
that they have good behavior
That they are protected by the Lord no matter where they are tonight
and that they know we love them

Please pray for us
That the Lord sustain us, give us strength, faith and peace
That our love for one another continue to grow despite bad times
and that we continue to draw closer to God

A day without a blog

Saturday, March 19, 2011
God is Good

Every family of a NICU or PICU child at UCSF gets a social worker. Their job is to support the families emotionally, doing paperwork for us, etc. and they also help try to make us more comfortable. For breastfeeding moms, we recieve a 15 dollar food card to use in the cafeteria. Mind you, 15 dollars gets you about 1 meal, but its still something!

Our social worker stopped us in the hallway as we were leaving yesterday and told us we were moving up on the list for the Ronald McDonald house. Last night, she called to tell us that we were in! Now, we had no idea what that entailed, but she said we'd need to be available to 'move in' immediately when they did call. She said that John would be calling from RMH and we would have 24 hours to get to the room. John called just a few minutes later to let us know we were in!
The Ronald McDonald house is located in the Mt Zion district of San Francisco. We were to meet with John before 11 am this morning so that we could go over paperwork, get a tour and get settled before the end of his shift at noon.
So this morning we brought all of the kids with us and made the trip to San Fran. After getting a little lost, we found the house nestled in the middle of an unassuming block of businesses. The front door was locked and we had to buzz in. John is a very, very tall, slim older man with gray hair, black rectangular shaped classes. He sits down with Nic and I as the kids go into the gigantic play room to start playing with a little girl who was also in there. Her name was Daisy and her sibling was also at UCSF. We went over all of the house rules, paperwork and where to park and then went on a tour. Staying here is similar to staying at a house in that we can use the kitchen, do laundry and we have our own room. There are common areas and play areas for the kiddos. A few nights a week people come in to make dinners and they have coupons for us to take the kids to the Zoo or Science Museum if we want to.
I don’t know how many times Nic or I thanked John for the blessing of being able to stay here. We’re both still quite taken away by this incredible blessing. People wait MONTHS to get in. But, thankfully there were 2 families (both of whom were, at one point, in our room at the NICU) who got to take their incredible little babies home recently. Double the blessings I suppose!
At any rate, we’re all settled in and have been here with the kids today getting adjusted. We’ve been calling to check on Cayleigh all day. Earlier this morning we called and she’d had a mild desat and they suctioned her, gave her a little O2 and she was ok. I called the next time and the nurse said she had a mlld desat and she suctioned a huge booger out of her nose and then was fine. I called the next time and they said she had just an O2 slight desat (called an apnea) but recovered all on her own. Basically, this is when they hold their breath. She said its common in preemies and babies who’ve recently undergone the G-tube surgery because their tummy is tender. This last time I’d called they said that she was doing terrific and that, since noon, she’d been off her nasal cannula. This was around 4 pm. I called just now (its 10 pm) and the nurse said that she had started desating more and dropping her heartrate a little bit so the nurse restarted the cannula at room air like she had last night. She said she doesn’t know why she started it but that just having some flow through her nose to help her – she said her secretions are definitely better. She said that they don’t have O2 in the nasal cannula .. just the flow in her nose. They’re just going to wait and see how she does and eventually they will try again. She’s still -1 week old gestationally. Apnea is common in preemies.
What I mean by this is that I delivered Cayleigh at 37 weeks they did the evaluation they do on every child and adjusted her to be an actual 35 weeks. So at 4 weeks she’s actually -1 week. Thus, still a preemie.
As far as her feedings goes, she is doing much better. Continued prayer in this area would be greatly appreciated so that she can be moved up in her feeding amounts.
So that’s it. We definitely need prayers for Cayleigh still.
Prayer that she begin doing better with her breathing and not have anymore Apnea/Bradia ‘s
Prayer that she does well with her feedings and digesting
Prayer for the kids that everything is as normal as possible with this change. (they’ll be staying home and my mom will be taking them to school/etc and caring for them Monday-Thursdays)
Prayer for God to continue to sustain us
And prayer that we are continually faithful to our Lord

Thank you all – pictures to come tomorrow!

GOD is GREAT

We recieved a call last night when we got home from visiting Cayleigh Jean, (She is doing great) it was from the Ronald Mcdonald house in San Fran. They said they had a room for us to live in for as long babygirl is in the NICU. This is such a blessing because we had to travel 2 hours everyday to go see her and it was getting exspensive. Now we are only 15 minutes away from her and its a free shuttle bus. Instead of 15 dollars a day to park. *Praise GOD*

So we packed up some clothes and the kiddos and are staying in our nice (hotel room) till our baby is home with us. This place is nice, laundry room, Kitchen, playrooms all over the place, and they cook dinners every so often for everyone who is staying here. The two oldest will be staying with us on the weekends because they are in school. So Mommy, Daddy, and JuJu has a new home for awhile.

It's been 1 month already.

Thursday, March 17th, 2011
Cayleigh Jean turns 1 month old today

I can hardly believe it's been a month already. It seems like just yesterday I was at St Joseph's about to go in for my c-section. Though I don't think about it often, I do recall that right before going in to the c-section I felt like something wasn't quite right. Then came the horrible surgery story and us being told she likely had Trisomy 18. Hey doc, guess what? SHE DOESN'T! Praise the Lord!!

My little princess turns 1 month old today and she's made incredible progress so far in alot of areas. She had her g-tube inserted via surgery the day before yesterday and today she got her first feeding. They started slow on 5 ml and checked 1 hour later, I guess 1/2 of it came back. Her nurse, T, told me that is relatively normal with g-tube babies on their first feeding because they haven't had any food for the prior 24 hours. This evening Nic told me, as I was driving back home in the San Fran traffic, that they'd started her on another round of her 5 ml and that they were going to wait 2 hours this time to check digestion. Let's all pray she begins digesting her food well and tolerating it without problem.

Dr. Herosi was in to check on Cayleigh while I was cribside. We, T and I, had just gotten her dressed in her "Daddy's love" outfit. Though she could fit in a Preemie outfit (which is the first one I tried on her), she is very stiff and gets upset when you try to put her arms into the sleeves. Imagine if your elbows were bent and hands out in front of you... and then try putting a long sleeved shirt on. You can see how that could be a problem, right? So anyhow, we put the outfit on her, leaving a button undone over her G-Tube and her right leg out because she had an IV in that foot. The Dr. came and unbuttoned her outfit and noted that the right side of her belly looked a bit bloated. I, too, noticed this. T tells him that when she got on shift it looked this way. He pushes around on it and watches Cayleigh, who is awake, but she doesn't so much as flinch. One of the Ped doctors is there too and is looking at her. I ask him if it hurts her? He says it doesnt appear that she is in any pain. I tell him that she doesn't cry. The Ped agrees with me - and then T says that when she is uncomfortable she makes the whincing face (but used a more professional term for it) to let us know. He says he doesn't think it is a problem and to go ahead with her feeding. (this is right before the first feed today)

I button her back up and begin holding her. I sing to her, pray over her, hum alot and cover her in kisses. I try not to breathe on her because my ears are a little itchy and I don't want her to be exposed to it. That's the problem with not being up at that NICU 24-7 - you get exposed to the other people in the hospital, the streets and the parking garages. Then, you go home with 3 kiddos and get their germs. It's a germy place out there.

Nic and I take turns going in with her today because Juliette is with us. She really takes the day like a champ. I take her down the the 6th floor in the Family Resource Room where there is a wall of toys arranged in new packaging. There's a small room with about 8 tables and a bunch of kiddos, some with parents, some with nurses. Some of the kids are sick and from the cancer floor above. They all vary in ages too. Juliette and I are sat down at a small table with a light skinned woman and her 2 year old son. He's got short, curly hair and big brown eyes. I notice he has an IV in his right forearm. It must be a central line. I look at the mother and then back at him. He's wearing a hospital gown and little pajama pants under it. He doesn't seem to feel very good. Juliette, in her innocence, asks him what's on his arm. he tells her its a thingy that they give him the green stuff with. radiation springs to my mind. He's 2. almost 3. I look at Juliette, stroke her soft brown hair and kiss her on the head. I am reminded at just how fragile and precious life it- and how blessed I am that she is healthy. I think to myself that she is looking at me how I look at other mothers with healthy babies my Cayleighs age. It's not a look of jealousy but of "I hope she knows how lucky she is" and "We'll be there one day".

During the game, Hospital Bingo, we learn that EVERYONE wins. even the kids playing in their beds. Some are too sick to come around other people with chemo and whatnot so they can play in bed by tuning into the channel that they were filming the game on. They go through, B "heart", N "social worker", G "kidney", O "radiologist". I'm half glad they are making the hospital less scary and half sad that these babies even have to know these things. The room is also filled with siblings of the patients too, like Juliette.

Juliette and the baby at our table, I call him a baby but he's almost 3, have the same card. The mom and I talk a little bit and Juliette helps him when he doesn't cross off the ones they've called. She's good at being bossy. :) They both win! Yay! Juliette is off to claim her prize -a pair of Barbie dress up high heel pink with butterfly shoes. Oh boy. They're too big, but you already know she wore them.

We do our switching throughout the day. Cayleigh's IV in her head, toward one of my last vists, has a purplish/red spot. T tells me she is watching it. That she must not have the greatest circulation (duh, she's laying in a bed all day) so it could start to collect fluid. At which point I'm sure they'll take it out. Then she'll have 2 in her feet. I'd rather them in her feet myself. Actually, I'd rather her do really well with the feedings and then not need one of the IV's at all. and, she WILL.

So during my last hold I noticed that Cayleighs O2 would go down slightly, 80s, and not her heartrate. She did this a few times. T was over and suctioned her. Only one time in the nose she got something. Nothing in the mouth. She says that when a baby gets the G-Tube its very tender in their tummy and so they hold their breath so that it doesn't hurt when they breathe deeply. She says to just rub her or rouse her a bit to get her to start breathing, just a little quicker and with lighter breaths. I tell myself she only did this because she'd just had her Tylenol suppository (which, I asked for and it was time for).

This morning, daddy bough Cayleigh a huge Elmo Happy Birthday balloon. T, the nurse, came back with a gift for Cayleigh too. She whispers to Nic not to tell any other parents. It's a beautiful, super soft, rose swirl light pink pattern fur on one side and a soft velvety other side. It's really beautiful.

I can't think of anything really else that happened other than that this going back and forth is for the birds. It's ridiculously expensive to drive back and forth even 3 days a week with gas in a van, snacks to eat, the bridge toll, then parking. *sigh* You're looking at almost 100 bucks three times a week. and that's not even how often we WANT to see her. God is really good and is blessing us - and we're trusting in Him for this and every other area of our lives. Most of the families there stay at the Ronald McDonald house - so please pray we get in there soon. It's be great to get a family room so we can bring the kids and not worry about racing back to pick them up from school.

Please pray for Cayleigh
Pray that the swelling/bloating in her tummy goes down
Pray that she tolerates and digests her feedings wonderfully
Pray that she has no secretion build ups
Pray that she starts swallowing
Pray that she gets to come home soon - with no problems! :)

PS Cayleigh coo'd just a few, very soft times today - T heard it too.

Birthday Girl

So Cayleigh Jean turned 1 month today, so daddy went down to the gift shop in the hospital and picked her out a huge ballon with elmo on it, that sings happy birthday. I also got her a book called "5 little monkeys jumping on the bed". Iam pretty sure she enjoyed her presents because she turned all red and had a wincy face... WAIT.... that was her pooping...lol.

Anyways princess has had a good day so far, she is resting still after her surgery a day and a half ago, but she wakes up for 45 minute incriments every so often. I love seeing her huge beautiful eyes. She also started her feeding again but you have to wait and read MOMMYS blog later because she explains and writes alot better then i do on here. Mommy and juliette just left a little bit ago so keep your eye out for the blog from mommys. Sorry guys this is short but i just wanted to let you guys know Cayleigh is having a great day. Thanks for all the prayers for Cayleigh! She loves you all!!!

15 minutes to midnight

Lord,

I pray that Cayleigh rids herself of the secretions that are causing the 4 A's & B's she had this evening. I know that you are God, that you have a plan and that you are in control - but Lord, I really want my baby girl to be better and to be rid of these secretions without any further surgeries. I am trying to be strong, trying not to have any fear of the future and to trust in you completely. I think that I do - and I just pray for my precious daughter who is so small but has been through so much. Lord it doesn't seem fair. It bothers me that my baby can't swallow. It bothers me that she can't yet cry. God I just ask for you to please heal these areas in her physical being so that she can come home with us. Lord, I know that she is yours & I praise you that she is ours here on Earth. I just ask that you would let her be recovered from whatever is preventing her to be doing all of this seemingly simple stuff (the swallow and crying). Father, I am not even going to pretend to be worthy of your grace and mercy but I know that I am because you have said so. I trust in you Lord and I ask that you hear this mothers broken heart cry out to you. If it is your will that she has more surgeries I know that it will be done & I know you are in control. Father please hear my prayer. Watch over my sweet angel and she lay sleeping in her crib tonight so very far away. Please give her peace and comfort as she recovers from this surgery and Lord Jesus please take away anything preventing her from swallowing so she can rid herself of these secretions. I speak LIFE over my child in the name of the Lord Jesus Christ, my Savior, the Great Physician, the Prince of Peace.

In Jesus Name

Amen

Just Pictures

Daddy sent me pictures of Cayleigh since I can't be there with her today. I thought I'd share them with all of you. Please keep Cayleigh in your prayers. Pray that she has no complications from her surgery, that she has comfort & not pain, pray that the congestion in her throat/chest from the breathing tube goes away and causes no problems with her heartrate or O2.

For Nic and I - that we don't get sick. no sore throats, coughs, fevers, nothing. No panic/anxiety and a continually strengthened relationship and marriage.

For the kids - for as normal a life as possible as we go through all of this. That they behave and stop fighting (:) )

For the nurses and doctors to be guided in caring for her and be given wisdom in caring for her

hello from the hospital

Well its daddys turn to stay at the hospital. I talked to our social worker and got a makeshift room to stay in at the hospital. Its nuthin fancy, just a cott with a divider for a wall. Oh well iam close to my Cay Bug so thats all that matter. She has been having a great day, a couple times here heart rate would drop and i would just adjust her in my arms. (but hey you would be a little irritated too if you just had surgery and all they are giving you is tylenol) and not liquid form, they have to stick it up my poor babys BUTT. I just hold her hand and tell her daddys here, you will be living the good life at home soon. She has actually been up for about 3 hours staring at me and the lights on the ceiling, (she loves her lights). I keep talking to her and showering her with kisses, that tickle her little nose because of my beard.

So she finally closed her eyes and is taking a nap, so daddy snuck down to the cafeteria for some dinner. Shift change is in about an hour, and the night nurse will be taking over. I hope its the nurse Cayleigh has had for the past two nights, Samara and I really like her, she takes great care of our Pumkin Butt.

Everyone praying for Cayleigh I thank you from the bottom of my heart, and keep up the good work. The lord is the great physician and his healing power has been amazing. Thanks again everyone.

Good Morning

Wednesday, March 16, 2011
8:08 am

I just called to check on Cayleigh. Her stats were perfect throughout the night. *PRAISE THE LORD* The bad news is the IV in Cayleighs foot, which they told us they wouldn't replace if it went bad, went bad. When I called jsut now they tell me they've put an IV into her scalp. The nurse says she was comfortable during the procedure. Honestly? How the HECK do they know she was comfortable? Because she didn't make any actual noise? Did they look at her face to see if she was in pain? This makes me angry. Daddy is calling to ask them why they did that.

8:45 am

Nic called back and said that both the IV's (the one in her hand, as well as the one in her foot) were not any good. That the nurse felt she wasn't getting her fluids, or preventative antibiotics, very well last night. It's the nurse I liked (one of them)..the one who is tall, slim, has long sandy brown hair and big blue eyes. She's got a sort of larger nose - maybe Greek I think judging by her bone structure and attributes. I like her and she has been the NICEST nurse as far as how I've seen her responding to Cayleigh. She calls her lovebug. :) So, I guess it's ok that the IV is in her scalp - but Juliette and my mom are coming up today with Nic so I know it's going to be a little stressful for them both to see it. Probably for me too. My first thought? That baby girl needs a headband :)

G-Tube

Tuesday, March 15, 2011
Today Cayleigh had surgery

This morning Nic and I woke up at 5:30 at my brothers apartment and headed on the Muni bus/train to see Cayleigh. I only pumped for 20 minutes or so before we left. no time for a shower or breakfast. We walked out, in the rain, and thankfully I had an extra hooded sweatshirt in the car because Nic didn't have his and it was cold. The Muni was just pulling around when we arrived.

We got on the Muni and I showed Nic how we pay and get the ticket, that it's good for 2.5hours etc. I go on talking about a variety of subjects because, when I'm nervous, I tend to talk alot. I tell Nic I'm talking too much because I'm nervous. Then I think of Tayla and how she talks alot sometimes. I tell him I think I've realized that she does it because she has something on her mind. I make a pledge to myself to ask her "what's on your mind" when she starts talking alot. At one stop, a long haired, dark blonde lady steps on. I notice her looking at me and Nic alot. She has scrubs on but I have no idea who she is. I ask her how far UCSF is and she says 5-10 more minutes.

We finally arrive at the parking garage in front of UCSF. It seems that everybody on the bus unloaded when we get off. Nic and I grab hands and walk through the garage, across the street and to the Benioff Children's Hospital and head inside.

I don't know how to put into words how I was feeling. It goes something like this:
You carry this baby in your womb for nearly 9 months, give birth to that baby and find out she's not coming home with you, then feel helpless that you can't help her or take the pain away for her or do the tests for her, then find out they want to perform 2 surgeries on your 3 week old, 6 lb 2 ounce baby who 'may be difficult to put under' in the hope to possibly, but definitely not definitely, help her not have bad reflux or desat with As and Bs anymore.

Imagine meeting a sea of faces, each one telling you their name, what they do, if they are a resident or attending or intern or whatever, using words you don't understand and saying things you don't want to hear. They always tell you frightening 'possible' situations or problems, and I understand they just want to be honest - but its mind blowing. They always preface with 'this is minor'...but when you talk about blood transfusions, her not having alot of blood to begin with, them not knowing if things will work, the risk of infections, it begins to become a blur. A total blur

Everything, and I mean everything - every face, every name, every word, every occupation, every test, every result- even things about yourself that you know like what you ate this morning - becomes a total blur. I was asked who delivered her and I shot off the wrong name. ... worse yet, I thought it was right. *sigh*

This all being said, Nic and I were feeling this 'blurred' emotion. It's a hard mix of trusting in God and believing that He is in control and knowing that all we can do is to trust in Him, but still feeling those terrified emotions, hearing those 'what if's' ringing in your head and having that natural helpless feeling you have as a parent of a NICU baby. The blurred emotion combined with very little sleep took an emotional toll on us both this morning.

We got up to see Cayleigh just minutes before the shift change took place. We couldn't hold her because they were going to do shift change soon, she was snuggly wrapped up under the warming thing and was ready to go since 'they'd' (the operating room team) would be calling for Cayleigh soon and we needed to be ready to go. Nic and I walked out while they were doing the shift change. Since the parents lounge was being used by a sleeping mom, we are going to go to the parent lunch room around the corner. I use the bathroom and when I come to the room I see a short, stocky Asian man sitting across from Nic talking. He's wearing purple scrubs. Dr Herosi (her-Oh-see) is the attending surgeon. He starts talking about everything they'll be doing. I don't recall it all, but I remember the 'possible' bad things that could happen. At the end I ask if I can pray with him and Nic & I lay hands on him and pray. After that, Steve (Cayleigh's day nurse today) comes in. It's all a blur but we come around the corner to the elevators just in time. They were strolling Cayleigh into the elevators to go to the Ped Surgery floor. Nic and I got into the elevators with them.

Down we went to the Pediatric Surgery floor and we walked to this small room. To the left, there is a little boy with big eyes and his mom & dad. The little boy is in the surgery bed and we know he's going to be having surgery today too. We are rolled in to the right hand side of the room. The seriousness of it all starts to really hit you. This panic feeling you cant help but have. There are so many people. They all come in and out in turns asking our cell phone numbers, discussing stuff we dont understand, asking us questions and 'explaining' what they'll be doing. As each team comes in, I ask if I can pray with them and then I do. Nic and I stay right next to Cayleigh and talk to her. We stroke her head, pray with her and I sing to her.

The nurses then say we need to get going to surgery. I hug the nurse, Steve, and thank him for taking care of her. Then I break down and start weeping. I walk out and walk down the hall a short way and pray a bit. It's hard.. that's the only words I have for that situation. Nic was whispering to Cayleigh when I walked out. He got choked up saying that "she doesn't even know what's going on". I tell him no to let that thought get to him. I've had it before too and it drove me crazy and I just had to pray through it.

Nic and I decide to keep our minds occupied - and our stomachs full - by going to the cafeteria. We get to the 2nd floor and walk into the huge rooms. I get my food and Nic gets himself a bagel and coffee. The thing that drives me to eat when I cant even fathom it or feel hungry - is that I need to feed my daughter. Even if she isn't breastfeeding right now, she is getting my milk. Since she's only 3 weeks old I've got a long time to go so it's important to try to get all the nutrients she needs. Left to my own devices right now I think I'd rather just sit by her bed all day.

Speaking of which - it makes you go crazy being up at the hospital in the NICU all day. It's not just the stress of your own baby that gets to you. It's the stress, cries of other babies, beepings of machines, noise of nurses and doctors and whatnot talking and then of course the images you won't ever forget like seeing a baby get tubed - hearing a siren and 20 people running because a baby had untubed themself and can die within seconds - watching a nearby babies heartrate soar to 235, the huge machines being drug all around.. its everything together that leaves you feeling more tired than running a marathon would.

I've been at the hospital since Sunday and yet it feels like its been weeks. It makes you feel, as a mother, like you're not a good mother when you just want to get home and sleep in your own bed for a night. But, I know I'm not a bad mother. I know I just need a good nights sleep and to step away from the stress. I've been having a hard time coping with that lately. The stress is unreal. The anxiety is a constant. Both these things catch up to you, no matter how much you pray, and then you physically become susceptible to it running you into the ground. I spent almost 2 hours tonight just trying to get them to take my blood pressure to make sure this feeling of someone physically pushing you down into the ground from up above you. It's crazy and I really hope those go away with enough prayer of my own and from others.

Back to Cayleigh - the surgery went terrific. They had no problems getting the breathing tube in, the laproscopy worked so they only had a minimally evasive surgery to perform and they were done a little ahead of time.

When she arrived back to the NICU she was wide awake. Almost looked in shock. She was shaking from the medicine. I quickly put my hands on her and started singing to her softly, talking to her and keeping her calm. I hate those shakes you get from anesthesia - I had them after the c-section. What works best is someone holding you during them...so thats what I did with her. It also helped bring her heartrate down a bit since it was 190 when we first arrived. She just did, after all, have surgery.

A chaplain was walking by and asked if she could pray with us. We said yes and she did. She then said she would be by to pray for Cayleigh many, many more times too. We thanked her.

While she was standing there, Cayleigh made her whincing face - and when she did that she made about a 2 second long noise that sounded like a really really small cry. The nurse heard it too! We were ecstatic.

She made a few more noises today too. Its baby steps. Good O2, good heartrate, she's perfect. They gave her morphine one time. Started her on some antibiotics, and giving her Tylenol suppositories. She has a little raspiness and they said it was normal and deep from the breathing tube. They said she'll bring that up herself.

So anyhow. its been quite the night - I'm exhausted. Maybe the blog didn't make sense but I didn't reread it or anything. I hope you all understand, I'm just trying to keep you in the loop.

PS Nic called just now and she's still doing great. :) Keep praying

We ask that the Lord give her peace and that she is pain free
we pray the congestion that was a little deep from the breathing tube doesnt cause any problems and resolves itself
We pray she starts making even more noise :)
we pray for no complications, no infections
We pray no more secretions and NORMAL O2 and NORMAL heartrate
We pray for wisdom and compassion in the nurses and doctors taking care of her
Thank you Lord for every breath she takes and for blessing us with her.


BEFORE SURGERY PICTURES





AFTER