Thursday, May 31, 2012

Back at Cleveland Clinic but being discharged Friday!

Well this is the first time this week that the computer has been working here at the Ronald McDonald family room in the hospital.  I've been wanting to post something all week, but haven't been able to.  I'm thankful for Lowell and my sister-in-law Lisa who've posted updates on facebook for me throughout the week. 

Last Saturday evening the 26th, Cayla was crying through nap times and started this whole routine of being inconsolable for some unknown reason.  It's so hard with babies when you have no idea what's bothering them.  We had a rough night as it got worse.  None of us were getting any sleep.  Just when we thought she was going to sleep, she would start whimpering a few minutes later and work herself up into a frenzy where nothing would console her.  By Sunday morning we were all exhausted and then when Lowell got back from teaching Sunday school, Cayla threw up on him as I left for church.  He said he'd be fine.  She looked like she was going back to sleep.  I got to enjoy being back in church Sunday morning thanks to Lowell watching Cayla.  When I got home, he was looking very frazzled and tired.  I started noticing her breathing was getting really uneven and labored.  Later in the afternoon, Cayla projectile vomited down me.  She has never spit up at all, not even a little bit, so this really started me wondering what was going on with her.  Lowell had taken a nap and the first thing he noticed afterwards when he went to check on her in the bassinet was her breathing was now retracting to the point where it looked as if every breath was like a hiccup.  I wanted another opinion, so I called our home care nurse, Elaine Lux.  Elaine and her husband Bob are the ones that started the Sonshine Corner Christian Bookstore 30 some years ago.  She was excited when Cayla's name came up on her list of patients to visit!  How awesome that God gave us a nurse that we already knew and is a Christian!  She said she was coming up to Ashtabula to run some errands and then would be able to stop by and check on her.  Cayla was sleeping for the 1st time, so I told her there was no hurry.  She had just seen Cayla on Tuesday and took one look at her and said we should take her in.  Her color was much whiter than she'd been Tues. and with her breathing and overall look, she didn't think she looked good at all.  Lowell had just called the night nurse at CC and she said to bring her in too.  Problem is that they don't want us driving her to CC, but to check her into the nearest ER and get medical transport to take her and stabilize her.  So, we went to ACMC in Ashtabula and the ER doctor took one look at her, read the discharge papers we had about her condition and immediately called for transport.  By 7pm I asked if I could feed her since it was time and they said yes.  Well, I wasn't thinking about her throwing up earlier and within a half an hour after feeding, she threw up, projectile style, on Lowell twice in the ER.  They took a chest x-ray, drew blood, and who knows what else while we waited.  When the paramedics arrived to take her, they put in an IV and off we went.  I rode in the ambulance and Lowell, Samuel, mom, and Cathie, followed behind.  They started giving her fluids on the way since she was looking dehydrated.  Thus, we arrived at CC.

If I continue this detailed, I will never get through the week... :o}  Oh well, we started in the step-down unit where we were discharged from the previous Monday, but by the time she threw up again that morning with blood mixed in and extremely lethargic and weak, they moved us to the PICU (Pediatric Intensive Care Unit).  I don't even remember all that's happened this week as I sit here needing to go back to her room, so I'm going to jump ahead to say what they've concluded as they get ready to send us home tomorrow. 

They thought it was an infection so they started her on 2 types of antibiotics.  Today they said all tests, and they took many, have come back negative and there was no infection.  Her white blood cell count was really high and actually is still somewhat elevated today, but otherwise she has stabilized.  She would lay there as they were poking needles all around her arms, legs, and head and not shed a tear.  Most of the time she barely flinched... this is not our precious Cayla Joy... She was pretty sick, but she is doing so much better now.  The cardiologists are clearing her of this being heart related, but are very concerned because they have no idea what this was, where it came from, or why it started.  This is like the other 2 "episodes" she's had in the past that led to the breathing tube and other set backs.  They had no idea what caused this in the past or what caused this all this week.  They want to find out what is triggering these episodes.  They are calling in Endocrinology, Immunology and the genetic doctor to re-evaluate and dig deeper into what's going on in her little body.  They tested her thyroid today and tomorrow I have an appt with neurology as well. 

Last night her IV in her foot quit working and they tried to put in another and couldn't after many tries.  So they had to give her the antibiotics by 3 needles in her thigh.  She was so worked up that an hour later, even when laying quiet and still, had her blood oxygen level in the 60's and occasionally dropped to the 50's.  So she was on oxygen last night, but was fine this morning without it. 

We would ask for prayer that someone, somewhere, somehow would be able to trace the source of what sets her body off like this.  They said that this could very likely continue happening periodically until they determine the cause.  Immunology can't do much until she's a little older, but have said to treat her with even a little more caution as far as being around anyone remotely sick and to diligently use sanitizer.  So, please don't be offended if we ask you to stay away or wash up first. 

Dr. Gurd did come by today and her cast was removed, but they were unable to return to recast it, so Cayla is enjoying a break right now from having a cast on.  :o)  Tomorrow it will probably be put back on.  Her foot is actually straightening out already.  I left the camera with Lowell when he left Tues night so no pictures.  Oh well.  :o)

I need to get back but could type forever with all that's going on.  I'm just glad I've been able to finally get to a computer for the first time since Sunday.   Thank you for your prayers! We're looking forward to being home tomorrow again and give it another try at home.  We didn't quite make it a week last time, so we're going to beat that and set a new record of length of time at home.  Love to all!  :o)

Sunday, May 27, 2012

Adjusting to life with a one month old

This first paragraph was a note I wrote yesterday on facebook and thought I'd start by reposting it here and then add a few notes.
We're doing well. Cayla was a month old yesterday! Hard to believe, yet in some ways it seems like she should be 2 by now... I got more done by 10:30am yesterday than I did all day Wednesday. :o) I was able to make it to revival services at church last night! Very good. Worship is private. Worship is intimate. The results of intimacy with God are seen publicly by everyone we meet and lives are changed... Looking forward to a good day today. Trying to get the whole 3 hour schedule down. Her feeding times get done every 3 hours, but I can't seem to get much else done in between. Still adjusting. Oh, and she pulled her feeding tube out last night so we got the privilege to put a new one in all by ourselves with no nurses to help. It was stressful more emotionally than the actual difficulty of doing it. I realized I didn't get tape, so I need to ask for some today at Hillcrest. Thank you so much for all the prayers for us. I will try to post more later, but have to go get ready. God's been faithful!

Had a good Saturday.  Lowell and Samuel took over and let me sleep more today!  :o)  They did dishes and took out all the trash, and Lowell cleaned up the dining room and living room... quite a feat when the dining room table was buried under a foot of hospital stuff that'd been dumped there.  Plus Lowell attacked the room that has some leftover stuff from the store in it that I've been wanting to get to for months now.  He almost has it cleared out.  He so good! 

Something's been bothering Cayla and making her cry at a moments notice and then working herself up into a frenzy.  She's not allowed to do that because it sends her pulse ox down below 82 (amount of oxygen in her blood)  and yes, that's really low and not good.  For her, it should be between 82-85, not lower than 75 and not higher than 90.  Plus it sends her heart rate up.  So, I do believe she's going to end up slightly spoiled at the moment since we have to pick her up and calm her down.  She has pretty much got to the place where she falls asleep in our arms.  Not that I mind, but I do want her to sleep without being in someone's arms... which she does, but we're headed in the spoiled direction.  Gave her some Tylenol this afternoon and she was like a whole new baby, smiling and no tears.  We see the cardiologist Tuesday and will see if there's anything causing these outbursts. 

She's just precious is all I can say.  Well, not really, apparently I can say a whole lot more, but you know... Overall she's doing so well.  She's gaining weight.  I was able to get her weighed between taking the cast off and putting the new one on.  She's up to 7 lbs 12 oz.  Well, that was Tuesday morning.  I'm sure she's more now.  We get to go again Tuesday for another cast and weigh in and visits to the Cardio Pediatric nutritionist, Dr. Erenberg her cardiologist, and the doctor in endocrinology to see how she's doing with her calcium.  She will be on calcium supplements the rest of her life.  They are trying to adjust it to just what she needs.  She currently takes about 5 and 1/2 tsps a day.

Looking forward to being back in church on Sunday morning!  I've greatly enjoyed revival services this week even though I only made it Thurs. and Fri.  Looking forward to hearing Dr. Roger Green tomorrow morning and evening!  Love my church family and have missed them greatly!  We were given clearance on Monday by her Drs. that Cayla can go out in public, obviously with caution.  Lowell said that Cayla's doing so well, we might take her and take turns sitting with her through Sunday school and church.  :o)  We'll see.  They cleared her to be able to go to daycare, so I figured church can't be too bad... Who could put a baby with so many needs at 4-5 weeks old in a daycare? Anyways. 

Well, this is just a quick update.  I feel bad I've not been able to write this week.  Many things have happened that I want to remember, so I might try to back up and write more later.  Have a blessed day in church tomorrow!  :o)

Sunday, May 20, 2012

Our last night (for now) at Cleveland Clinic

It's our last night here.  My time warp bubble is about to pop, and I can get back into my former life again.  Although it will be strictly dictated and scheduled by a little girl I got to know recently...  For the last 3 days, I have done all the tasks associated with feeding and and taking care of the Little Miss Cayla Joy.  I have not done it through the night, but do so look forward to adding that to my repertoire... 

We are so blessed and have so much to be thankful for!  We have a beautiful baby that God has blessed us with.  She is such a trooper and has pretty much just learned to deal with all the monitors poking and digging into her arms and legs as she sleeps.  She won't know what happened when she sleeps tomorrow with them all gone!  She likes to lay still and study her surroundings before she falls asleep.  She wakes up stretching and cooing with an occasional cry, but overall, despite everything, is a very content little baby.  She just loves to stare at us while we talk to her.  I almost forget sometimes she even has problems, she seems so content and normal.  She will just have her little NG tube in her nose until her next heart surgery in September.  She just doesn't have the strength or stamina to suck and swallow the amount she needs to eat.  So pumping her milk in the little nose tube directly to her stomach is what she needs to stay strong and gain weight to be ready for surgery.  I will only have to put her pulse ox machine on her once a day to get a reading of her heartbeat and level of oxygen in her blood for the doctors, but it will not have to stay on 24/7 anymore! 

We are so thankful that she did not have to have the Norwood surgery, just simply a complete miracle of God!  Her aorta is misplaced right where God intended it to be!  That is just amazing!  We would still be at the hospital a couple more weeks or worse if she'd had that surgery instead of just having her pulmonary arteries banded. So, so thankful to what God has already done in her life! 

We are so thankful for Cleveland Clinic and all the wonderful care we've had while here.  You know, I don't think I ever really went into what happened during Cayla's delivery.  The problem was that the spinal anesthetic thing, can't think what it's called at the moment, was not working on me, and they did it twice and neither one worked.  So... when the knife went in, I still felt it.  A freak kind of thing.  Everything was reviewed and done by the textbook, but for some unknown reason, they didn't work.  Within minutes Lowell had no knuckles from me squeezing his hand, and he was telling them to "Just knock the woman out!"  Which they did.  I had so many narcotics and drugs pumped into me in such a short amount of time that I was unable to eat or drink anything for 18 hours after the surgery.  None of it went to Cayla.  I guess I should say that feeling the knife didn't seem as bad after the second dose they gave me, so I thought I could just endure it... trying not to complain or cause trouble... But by the second incision, I thought I was dying and couldn't really talk, yet for some reason they knew I how I was feeling by just looking at my face... OH WELL, all that to say that they have no explanation as to why it didn't take and should in the future.  The nice thing is that the $1,750 anesthetic charge on our bill for that day said, amount insurance pays = $0.  Amount you pay = $0.  So they removed the charges for all that mess of stuff they did.  The 2 doctors came to visit me in the NICU, I guess they want to make sure we don't sue them or something.  All's well. Cayla came out fine, so that's all that matters!  :o) 

We have really felt so well cared for!  Every single day we've been here, a team of doctors, anywhere from 5 to 15, have come by her bed and discussed her stats and what to do for her for that day.  When you have doctors from cardiology, respiratory, immunology, endocrinology, surgery, pediatrics, neonatal, nutrition, and nurse practitioners and nurses all discussing her care, you get way more than a second opinion, you get them all balancing each other out in all their different departments and expertise.  I have felt such confidence in all the care she's had while here.  So, so thankful for that.

We are so thankful for the many, many family and friends that have prayed us through this first step in Cayla's life.  God has done miraculous things because of those prayers.  The social workers and lactation nurses and our case worker have all been asking how we're handling all this.  I love when they ask because I get to talk about my support system of family, of church family, of prayer warriors on fb, and prayer warriors on the blog.  I get to talk about Jesus Christ.  We are so blessed!  Five to ten years ago, there wasn't such a presence of people online with something like fb.  What an amazing thing that is.

I am so, so, so very thankful for my family. Lowell and Samuel mean everything to me and we are all so excited to start this whole new journey together with Cayla joining our family.  God is so good.  I used to tell people that of course I wasn't going to have only one child.  I loved having siblings and wanted Samuel to have them too. I just didn't think it would be so much later that they're both going to almost be raised as only children.  :o)  God's ways are perfect!!!  I wouldn't have chose this, but God did, so I'm ok with it all!  Plus, we live up here where my in-laws are and what a HUGE blessing they are to us!  I am so thankful for extended family!!  They've all been taking care of us.  Can't say enough for my mother-in-law who took me to all appointments and visits but one, out to Hillcrest and Main Campus.  Such amazingly great family that loves us!  :o)

Well, I could keep going, and will at another time, but it's late and there's much to do the next few days.  So, thanks for the prayers and love and encouragement!  :o)

Thursday, May 17, 2012

We're going home Monday!!!

We are set to be discharged on Monday!!! This is my last night alone here and I am going to try to get another 8 hours of sleep tonight. Plus, I didn't cry tonight when I left... not sure if that's good or bad... :o} I cried plenty of tears during the day to our insurance company, just bawled my eyes out while trying to settle the issue, to Edgepark Medical Supplies too and to Lowell and to Nurse Mary Lou and to Cathy the lactation nurse, and to the nurses out in the lobby and to Cayla. Everyone is so nice when you're crying... I think I just cried almost all my tears out earlier, but I did cry back here at RMH when I thanked the volunteer for all they've done for us. She said it's nice hear someone say thank you. She said many people don't take the time. Just can't say enough about this place.

Did I mention that WE'RE GOING HOME (Lord-willing) ON MONDAY?!?!? :o) I will be glad to be out this little time warp bubble I'll have been in for 4 weeks and sleep with my precious baby girl in her own bed... :o) Thanks for all the prayers!

Wednesday, May 16, 2012

Taking the NG (Nasogastric) tube home with us

Well, I'm actually feeling like a burden is lifted.  With her feeding up in the air, I felt a lot of confusion as to what I want to do and what I should do.  The occupational therapist and the speech therapist came this morning at 10am to work with Cayla on bottle feeding.  It was pretty much the same results we're getting from nursing.  She latches on and sucks and can swallow for the most part, but after 5-10 minutes she's done.  She pushes away and fusses and doesn't want more.  It's a slow process, but the verdict is that she is only able to exert so much energy to do such an aerobic exercise like eating, that if we tried to make that the only way for her to get food in her belly, she will wear her heart out trying right now.  They want her heart to rest and get strong for her next surgery in September.  She can't do that without the NG or feeding tube that's in her nose.  So, she can bottle feed for 5-10 minutes to build that skill, but the rest of her milk will be fed through the tube.  I am still able to nurse maybe twice a day or so just for her comfort sake and well-being and was told if I keep pumping I'll most likely be able to nurse her after her heart surgery more regularly.  We'll see.  So, I started some training for the tube tonight and will continue to learn all I need to before being discharged.  So... it could be this weekend that we get to go home!  If not, it's still not too far off which is a wonderful thought!

Now that it's pretty much decided, I do feel a lot better.  Cayla and I were able to sleep a great sleep for 2 and 1/2 hours this afternoon!  I felt so refreshed.  I am back at RMH for the night now that the nurse can do the bottle feeding and NG tube for me.  I've been told to skip everything tonight and try to get a full 6-8 hours of uninterrupted sleep.  Thank you Lowell for pushing me to focus on taking care of myself.  :o)  I really am trying.  I have to say though, that I cried all the way to the shuttle after leaving her tonight even though she's doing really well and will be taken care of by the nurses.   I just feel awful leaving her all night... hormones and tiredness are on my list of excuses right now.

Well, it's off to bed!  Thanks for the prayers.  There are two little things I'll ask prayer for while I'm thinking about it.  Her little behind is still so sore and red and raw that it's just turning into a crying fest for her and me everytime we change her diaper.  It's ever so slowly getting a little better, but it's taking it's time healing.  The second is that her cast has got to be so uncomfortable.  We've put gauze under it on the back of her thigh where it's starting to dig into her leg.  Earlier she was so inconsolable when she'd been fed and changed.  We had to give her some Tylenol to settle her down, but the only thing I can think of that might be bothering her like that is her cast on the back of her leg there. 

God is faithful and has given me many opportunities to talk to people and tell them what He's done already in Cayla's life.  I've actually had the 2 moms in the beds on either side of me, come many times in the last 3 days to our room just to sit and talk.  God has given me opportunities to share about Him with others, but so far that's all I've been able to do.  They both think it's great that I have such an amazing faith, but I've tried to tell them that it's not my faith that's getting me through, but the Lord Jesus Christ who my faith is in, that's getting us through this.  I have become good friends with Roseanna, an Amish mother that my dad and Pat started talking to when they were here.  She has had many struggles and we've been able to read the Bible together and talk about it.  She was amazed to see colored underlined verses in my Bible.  She'd never seen anyone write in their Bible.  She wrote a bunch of verses down to look them up on her own.  We keep saying we're going to exchange addresses, but haven't yet and I do believe time is running out.  She is staying here at RMH too, so I run into her alot.  Nurses and doctors have heard how God has spared Cayla in such a miraculous way to not have to have the Norwood surgery and Dr. Lorber said he really is amazed at how this all turned out for Cayla.  :o)  Dr. Lorber... God does work miracles!  :o) 

Ok, once again, I will say, off to bed for me... but alas, I must pump once more before my sleep!  :o)  Sorry for talking about all the nursing and pumping stuff on here, but it's like Dr. Stewart told me today when he passed me carrying my "stuff", "You really don't get a break from that do you?"  He said he's stopped by many a time and kept walking since he heard the pump going... Oh well, it's for a season and am glad I get to do it!  :o)  Good night!

Tuesday, May 15, 2012

Update and Pictures

Hi! I am finding it hard to get to a computer these days. I had a chance Sunday evening after Lowell and Samuel left, but just wasn't up to it. The few times I come back to the RMH, I come to shower or sleep. A half hour nap here is better than a 3 hour one at the hospital. So, thanks for being patient with me and the blog writing!  :o)

Cayla is doing well and on the road to being discharged.  We got the discharge checklist (4 pages long) last night.  Her basic issue now is feeding.  Do we end up going home with being able to breast feed, with bottles or with the NG tube (the feeding tube in her nose, and yes, sending her home with the tube is an option), or combinations of them.  The cardiac doctors said I could try breast feeding.  I didn' realize how big that is until the nutritionist stayed after the doctors left to tell me that the cardiac docs don't usually give the option for a heart baby to breast feed.  I asked if it's just because she didn't have the major Norwood surgery and just the pulmonary banding, but she said no, that any baby with any kind of heart surgery has been included in this so they can control the numbers closely.  The cardiac nurse practitioner, Shanna, said that she believes it's because she really is doing well and has had such good numbers with very few drops out of the target range.  I have a feeling there will still be other bottles or whatever since I don't think she can eat enough from nursing.  She also said that they just want her to continue to gain weight before surgery in Sept., and if I can do that with just nursing, they won't even make me fortify my milk like they are doing now.  I don't think I have enough time to make this work completely, but they have let me breast feed every other 3 hour feeding.  They still do all her full feedings by the NG tube, but will let me work with her.  :o)  Yesterday afternoon and evening were successful, but this morning was not.  She was too sleepy.  This afternoon, the lactation nurse came and made sure I was doing everything right and giving suggestions to make it work better.  She said she's definitely getting milk and is sucking really strong!  Yay!  We will see... 

Shanna also said that she is sending in a specialist that will take her 10am feeding tomorrow and attempt to give Cayla the bottle for the first time in 2 weeks and since surgery.  She will evaluate her to see if she thinks Cayla will be able to learn how to suck, swallow and breathe without exerting too much energy.  So she will determine whether we work with the bottle to go home on, or go home with the NG tube.  I guess I should say that whatever is best for Cayla is what I want, but I really don't want to come home with the NG tube...  There's a prayer request for tomorrow.   :o) 

Well, Cayla got her first cast on this morning. It was pretty uneventful. We waited longer for transport to come take us back than the whole doctor's visit took. :o) Here's some pictures of week one's casting.  It will take 5-8 weeks of getting a new cast each week.  Then a brace with the bar between the feet.  Then the brace just while sleeping.  We'll see how all this goes.  :o)  She did great today.  For most of it just laid there and let them work.  By the end she was getting tired of it all and started crying, but overall she did great. 

Dr. Gurd and Dan positioning and wrapping.  Their goal today was to pull, flatten, and stretch the arch on her foot first. 

Dr. Gurd adjusting her foot before they finish wrapping above the knee and casting it.

Smoothing off the toes.

After the cast on week 1
Back in her bed with her cast...

Many of you are asking how I am doing.  I should start by saying that I know my husband is very concerned about me and my sleep deprivation. It is almost impossible for me to feel like I can leave her room. Many times I cry when I leave her, feeling like I'm being a bad mother for deserting her. I feel that if I'm going to go sit outside and read a book, why wouldn't I just sit next to the window in her room and read my book so I can be there if she needs me. I am definitely having a hard time relaxing and making myself sleep. Such as right now. I came over here to the RMH to sleep for 2 hours before I have to go back to nurse her later tonight, but I feel bad I haven't written anything on the blog, so I'm writing when I should be sleeping. Boy, I'm sounding like a whiner, but I feel bad because Lowell is so frustrated with me and my lack of taking care of myself before I get home when I will really have no choice but to be sleep deprived... Don't know what to do with myself.  He wants to be here to make me do these things while I have the help.  I am trying and will leave with others, but not on my own.  I am trying to be better. 

I am feeling good physically, except for being tired.  I've been walking the 4 and 1/2 blocks back and forth from the hospital to the RMH which feels great.  Today I did it 3 times.  I'll take the shuttle at night...  My incision is fine and I've not taken many pain pills in the last week and nothing since Saturday.  BIG NEWS...My sugar levels are completely in the normal range even after eating a McDonalds sundae and some fries.  :o)  I am still getting low carb meals because I want to keep a good trend going with weight loss during pregnancy.  I'm drinking water like crazy which is good for many things right now. So just pray that I can sleep and start feeling just a little more rested before going home.

Lowell and Samuel came up  Friday night and took me out to eat Saturday for Mother's Day and bought me 2 more books while we were out.  :o)  So I'm set for a couple more days.  Lowell realized we have a mail box here at the RMH and it was full!  A bunch of mother's day cards and thinking of you cards were in there!! Thanks for the wonderful encouragement!  I got a bunch of stuff from college sororities who pitched in and made up cards and gifts for all the moms at the RMH.  The Wed. night volunteers put together hand bags full of perfumes, shampoos, chocolate and more for each mom with the picture below! 

The hand bag from the volunteers and my cards from Lowell, Samuel and Cayla.  Below I've highlighted the 2 from my children........   Don't know why this picture went sideways, sorry.
So precious, from my children...  Don't you love the card they got me from Cayla?   It's "For my sweet Grandma..."  :o)   Keep reading....

And here's the insides of their cards.  :o)

The Bentley Samuel was drooling over...  :o)

Cayla giving Daddy a sweet, adoring look as he talks to her!  :o)

Her big girl crib in the Pediatric/Congenital Heart step-down unit.

Samuel and Little Miss Sis

Grandma came up on Monday to get her baby girl fix!  :o)

Sweet girl bundled up kind of crazy but cute.

Sarah Hopkins with Cayla...

Sarah and mom Kim Hunsicker and Cayla

Sarah, Kim and brother Jason with Cayla.  So, great to see them!  Haven't seen Sarah in a year since she moved away, and Jason's back from college, so a very nice treat!

Saturday, May 12, 2012

Out of Intensive Care!! :o)

I have a few minutes here at RMH before we head over to see Cayla... in her new room in the cardiac step-down unit! We are out of the NICU and the PICU! We were unable to move yesterday because she had a low red blood cell count and needed a blood transfusion and her feeds weren't up yet to where they wanted them. So, today was the day. Lowell and Samuel took me out for a Mother's Day lunch and we got a call while we were out that a room was available and they moved her! So, we've just got back and in a few minutes will get to go see her in her new room. It is so, so nice having my men here with me! Lowell got to hold Cayla this morning which was so sweet to see. When he walked in she was fussing and he just put his face right down to hers and started talking and she was instantly quiet and looking at him. :o) Love it!
We're doing well. I'll write more later, but thanks for continued prayers. Just happy to be out of ICU so I'll get more of a feel that I really have a daughter. :o) At times she still doesn't seem like mine. Nurses are there changing her diapers, wrapping her up with all the wires, and doing so much in general. I've been very thankful for them and their expertise, but it's going to be nice to have a room where I get to be mom more. I know I'll miss having the nurses there and wish they were back, but all this means we're one step closer to going home. :o) Yay! Well, the internet was down this morning at RMH, so this is about as good of an update as I can do right now. Want to go see my baby girl! :o)

Friday, May 11, 2012

A little time away for me today.

Cayla has been doing so well these last couple of days, that when my friend Tina Siesel came up to see me today, I was actually ready to step away from the hospital for a time.  When I'm by myself, I don't go sit up on the roof pavilion or anywhere else.  I can sit by her window in her room.  I cannot get myself to leave her room.  I leave at night to come sleep at the RMH, but other than that, I'm in her room right where I want to be.  If someone else is there, I will go with them.  It's kind of weird to me, but it's just how I am.  When Tina came, we listened to the doctors' reports, spent some time with Cayla and then we went to a little stream and park not far from the hospital which felt so, so good to be out of the hospital in the sunshine.  Cayla is very stable right now, so I really felt free to enjoy myself outside.  It felt great.  We went back to the RMH and I pumped and then we took a tour of Cleveland looking for a restaurant to eat at.  We ended up in Mayfield at Buffalo Wild Wings and I had their gluten free ultimate nachos... It's been a long time since I've had nachos.  Finished them off tonight as my snack and had 2 chocolate covered strawberries with it from the RMH kitchen tonight.  :o)  I'm suffering, let me tell you!  We came back to spend some time with Cayla as I got to hold her as she fell asleep curled up against me again.  :o)  We never did get her hair shampooed, but the night nurse said it will take a couple of washings and she'd start tonight. 

Cayla was actually not weaned off the heart meds until this afternoon and the cardiac doctors want her in the PICU for 24 hours after being off them before she can be moved to the step-down unit.  So, maybe now tomorrow afternoon we might move... nothing is for sure here. 

They increased her milk intake, but are still giving it to her via the feeding tube.  What the next step is there, I don't even know anymore.  I give up saying what they think will happen, we'll just wait and see instead.

She's opening her eyes so much more and looks like a whole new baby!   I just look at her and try to picture her at home in her crib and no nurses to help, but just us taking care of her.  It's really a little overwhelming and I asked God today if I could really do this.  I guess it's too late to ask that, but I know He will help us, just hard to imagine it all sometimes.

Tired again and will try to upload some pictures.  Have a blessed Friday tomorrow and thanks again for the prayers.  She's doing well!  :D 

AND... Lowell and Samuel will be here tomorrow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!   : D  (big smiley face)

Tina and Cayla :o)

With good ole Ronald McDonald

Thanking God for a good, godly friend today who blessed me greatly!  Oh, and Happy Birthday Tina!  :o)

The water here over the stones was making such pretty waterfall sounds... Could have sat by the babbling water all day.  So peaceful and relaxing...

My little pumpkin with her eyes open this morning. 

Trying to focus tonight.  :o)  She looks so different since her 1st couple of days.

Been squeezing those cheeks all evening.  :o) 

Wednesday, May 9, 2012

A quiet day for us

Quiet days are good.  No excitement is good.  I was able to get to the hospital around 8am this morning and had a nice quiet morning with her in my lap while I ate breakfast and listened to the doctors when they came around.  Not too much to say.  She was able to have my milk this afternoon through the feeding tube in her nose.  It was just on a very slow rate of 1cc per hour or something like that.  She has had no reaction to it at all which is wonderful, and tomorrow, they *might* let me try to bottle feed her my milk.  As long as she's in Intensive Care they want to know exactly how much she's taking in, so she can't nurse until we move to the step-down cardiac unit.  But it's still a step in the right direction.  It looks right now that she might move out of the PICU sometime this weekend.  We'll see. I also got to just sit and hold her around 4:30 for about an hour and a half just rocking her, talking to her, singing to her, and enjoying her... while she slept.  As soon as she was put back in her bed, she woke up with eyes open and all alert.  Couldn't have done that while she was in my arms... ;o) She was just too comfy curled up against Mommy, that's all.

They said she will have her first casting done on her left club foot next Tuesday.  I called the orthopedic doctor and she's set for 7:45am.  We have to have a new cast put on each week for 5-6 weeks.  But it appears we can go to Willoughby instead of Main Campus.  Dr. Gurd is out there on Wednesdays.  It's about 20 minutes closer to home. 

The doctors said she's stable and weaned her off her heart meds today.  She is and possibly will be the rest of her life still on calcium.  They were able to give her some through her feeding tube and some through the IV.  They kept mentioning the DiGeorge Syndrome this morning.  The smaller test of the 2 the genetic doctor ran on the DiGeorge came back negative.  The other, more detailed one takes a week to get back which I believe is Friday.  Dr. Stewart did say that even if the blood work comes back negative, he believes Dr. Moran, the geneticist, will still give her a clinical diagnoses of DiGeorge Syndrome.  It is covering even her heart defect besides the club foot, spine, anus, ribs, calcium deficiency, weak immune system, and whatever else I'm currently forgetting.  It all fits together with the missing thymus gland.  We'll see.

The nurse practioner from the cardiac step-down unit said that Cayla doesn't need to be in either ICU anymore since she is doing so well.  It's just her feeding.  The lactation nurse said she's going to have Cayla try to nurse just to learn how, not for full feeding purposes.  So when the time comes she'll be a little more ready.

I almost got to wash her hair today, but there was so much going on in the PICU that our nurse was called to other patients.  No big deal when there's others needing so much help.  We'll try tomorrow to get a good hair wash...  but I will be glad to be off this floor.  It is a little intense and hard to see.  Children crying uncontrollably, nurses and doctors running by your room to get someone into emergency surgery, parents looking lost, confused and hurting for their child, and just not a very peaceful place... today especially.  Our room was exceptionally peaceful, but not so for others.  Dr. Stewart ran by most of the day.

Looking forward to see what tomorrow holds for our family!  My verse from today.

"As for God, his way is perfect:  the word of the LORD is tried: 
 he is a buckler to all those that trust in him."

Cayla on Tuesday with her big sock glove to help her behave and you can see part of her bruise on her arm.

Cayla on Tuesday closing her eyes everytime I tried to take the picture.  They were actually open...   You can see her nice central IV there that Dr. Stewart put in.

Today, with her eyes open but with the furrowed brow.   She had that look every time her eyes opened...  She was trying to focus too. 

Do you notice something in this picture?  Her little oxygen/air tube was taken out this afternoon too!  Just down to the feeding tube, one IV and some monitors on her chest.  :o)  She got in trouble again for pulling on the feeding tube, so she got a pink sock on that hand.  Hoping to get some hair washed tomorrow if things aren't too crazy on the floor.  :o)

Yesterday, Tuesday, I couldn't get the flash off on my camera so I just took a little video of her instead.  :o)

Tuesday, May 8, 2012

Feistiness seems to be a good quality in a hospital...

It's late Monday night as I sit here very tired after just getting to the RMH.  I just saw myself in the mirror and my eyes are really red.  Not  completely sure why since the last time I cried today was around 2pm...... when they let me hold Cayla again for the first time.  :o)  I can't really describe what it felt like having her back in my arms again.  It just feels so right.  I could have held her all day, but I was falling asleep with her on my lap and really needing to pump.  So they made me put her back, the big meanies...  ;o}  Just remember I'm tired...
The 1st time I got to hold her since being in the incubator and PICU this time round.
Later Monday evening I got to hold her again.  :o)

Last night, Sunday, since I was alone, I decided I didn't feel like going back to the RMH, so I stayed and slept in the room with Cayla.  Her morphine was being decreased all day Sunday and her agitation level was increasing somewhat, although not as much as I thought it would.  The new nurse on the night shift wrapped her up in a cocoon and she seemed content.  But later that evening she would not settle down for anything.  So the nurse finally said she'd check her diaper.  When she unwrapped her there was blood all over her right side of her body.  The little stinker had worked her arterial IV completely out of her wrist.  It had been sewed and stitched down, but that didn't stop little Miss Cayla... What a mess.  I got to hold her up in the air while the nurse pulled the blankets and such out from under her, but I still got to hold her.  :o)

The nurse also noticed that her central IV in her jugular was bleeding and oozing too.  The doctor came in and he tried to clean it up and flush it and see if it could be used.  He couldn't get it to do anything.  It had been jarred enough that it was no longer in the artery.  He left not sure what to do with it since she'd just lost her other important IV.  Well, the nurse got tired of messing with the leaking and bloody thing and just pulled the IV out.  Let's just say when the doctor came in later, he was not happy, but unfortunately I slept through all of this drama while right there in her room.  I'm just a little tired.  It all turned out to be a blessing in disguise.  It has sped up the recovery process.  Without her central IV, they can't give her TPN.  Please don't quote me on any of this, I'm not sure I remember everything they said.  TPN is the nutrition IV that's I guess like liquid food.  So they spent yesterday trying to wean her off some other high something liquid IV so they can then start trying to feed her breast milk directly through her feeding tube in her nose to see if her tummy can handle it and not throw it up or anything.  If she can take it, then they'll move on to feeding her either by nursing or bottles.  If the lactation nurses have anything to say about it...  I just need to find them on the NICU and make sure they know where we're at with all this so they can go to bat for me.  :o)  No, I'm not conniving...  But this is really great progress and has been fast forwarded because of the whole mess with little miss innocent Cayla pulling out her IV's...  So, yes, feistiness is paying off in the hospital.  :o)

Well, it's now Tuesday night and I'm trying to write in the blog again.  Monday, Dr. Stewart the surgeon was stopping by to check her vitals really quick, and found out about the IV's and said that's great!  She's progressing well!  So, since she still had the other IV in her other arm, no one was worried.  My mother-in-law came up to visit on Monday which was so nice to see her.  I am truly blessed with my inlaws.  Cayla was sleeping most of the day and fussing a little.  The doctors wanted her blood gas taken but needed to draw the blood from an artery.  So two nurses were digging around her foot for an artery to draw blood from... very hard to watch, but I just kept comforting Cayla and tried to ignore them.  Finally got some blood, came back saying it clotted and couldn't use it.  Dug around again somewhat got some... came back again saying it wasn't enough.  At this point, they had already put her in my lap to hold her.  The nurse just said to hold her still and in 2 seconds got the blood she needed that she and the other nurse couldn't get in 20 tries.  So we were all glad that was over.  She was doing well and they were talking about trying the milk through the tube on Tuesday and going from there.  I got to hold her again last night and all seemed well.  I forced myself to pack up and try to get some sleep at the RMH.  I got here pretty late, and was too tired to finish the blog. 

This morning I got up at 5am and started my day.  Didn't get out the door until 7:45.  I was on the shuttle to the main hospital when her nurse called me.  He wanted me to know that Cayla had a rough night and she managed to dislodge and pull out another IV, the last one in her other arm.  They have to have an IV in her at all times.  Preferably one in an artery.  Apparently the nurses tried to get a good line in many places on Cayla, but couldn't get it to work (so glad I wasn't there).  She had let her rest and quit trying when Dr. Stewart showed up at 5am.  He saw all the many attempts and decided to fix it himself.  So he put a central IV in, just below her left shoulder above her chest.  She can't really get to it, it's out of the way and shouldn't get dislodged.  Gotta love Dr. Stewart.  Her poor little arms are chocolate colored from her wrist up a couple of inches with bruises from the dislodged IV's.  This time she got in trouble for her feistiness...  They realized that she generally stays calmer when bundled up in a blanket, so they turned the heat off her bed and instead of letting her lay open with handcuffs, they put socks on her hands and bundled her up this week.  Well, I think that everytime they came to poke her foot or check whatever, she fought to get out of her blanket and let them know what she thought about it all.  Well, all that rubbing and fussing and moving her arms up and down in the blankets against her, is how she managed to dislodge both IV's on her arms.  Oh well.  She's doing better now.  Oh and I managed to salvage one of her handcuffs as a momento...  :o)

What all this means is that they took blood samples while she was still pretty upset throughout the early morning hours.  Well, the numbers were all messed up too.  The doctors say she looks fine, but they have to go with the numbers in front of them.  So they put everything as far as progressing goes on hold another 24 hours.  Put her on some heart meds to assist her heart and bring her numbers down. They kept her off starting with milk today and are not sure they'll let her start again tomorrow.  We'll see.  SO, maybe feistiness in a hospital isn't always good, but I do believe it will benefit her in the future with all her future surgeries. 

Got a call from the orthopedic doctor today.  He wants to start asap on her club foot to get the 1st process of correcting it done before her next heart surgery in September.  Plus, her bones are still cartilage and much easier to work with.  He does feel that her foot will need casting.  He will use the Ponseti Casting treatment on it.  Here's a link explaining it because I don't want to try to explain it.  I talked to Lowell and we are going to have to do this starting this week.  He would have normally started when she was first born, but had to wait for her to be stable from heart surgery.  So, we have to have a new cast put on each week for the next 5-6 weeks.  More weekly trips to Cleveland Clinic.  Big sigh.  Whatever needs to happen, let's do it.  So, so blessed to have insurance...  Well, these first 2 casts will probably be put on while I'm still here.  I know this is not life threatening or anything like that, but just reading this article right now, makes me cry.  I can still blame it on hormones, so I will.  I'm easily overwhelmed these days... I don't know that feistiness will help Cayla when it comes to having casts put on and off her legs each week.  It sounds like it will be her enemy since she won't be able to pull or push them off... Lord-willing.

I can't say enough how special it is to be able to be there by her bed, put the side bar down and just talk, kiss, rub noses and faces and just soak her up for as long as I want to!  She rubs back and opens her mouth and soaks it up too!  I still feel like this is all a bit of a dream.  I miss being home and with my boys, but am truly blessed to be able to be here with her getting free meals and very inexpensive lodging.  God has blessed us beyond measure.  I feel His hand on everything that has gone on.  Even all the crazy stuff.  God has lessened her heart surgery and is giving her an actually pretty quick and good (for the most part, barring her feistiness) recovery. 

We are blessed too to have so many prayers being offered on our family's behalf.  This little line doesn't even come close to letting you know how much your prayers have meant to us!! God is working miracles in Cayla's body and allowing other issues to be there as well, but is giving us the grace to accept each problem as they are found.  We are being held by His mighty hand.  Lowell is having a taste of single parenting.  Getting them both out the door on time with breakfast and lunches packed.  He and Samuel are cleaning up, doing dishes and laundry, and the whole 9 yards.  Your prayers are helping them through all of that, plus being able to focus on work and school.  God is working in our lives and when you go through rough times, you see the hand of God in such powerful ways that I wouldn't trade this whole experience for anything.  I love how God is using it to change us all!  Need the prayers and covet them!  Thank you.  Thank you.  Thank you. 

Well, something light-hearted to end this post with.  Our 16 year old son Samuel is 6'2" and likes to sport a little goatee on his chin to prove he's got facial hair... :o)  Love him!  Well, it makes him look older than he is sometimes and in this day and age when so many young people are having children, people are more apt to jump to wrong conclusions.  During the first week he was here with us and Cayla, at least 4-5different times, nurses came in the room and looked at Lowell and Samuel and then went back to Samuel and said, "So you're the father?" This made me feel very young, but made Samuel and Lowell (Grandpa) feel very old... Well, it finally happened to me last night.  A nurse walked in and saw me standing there next to her bed and said, "Grandma?"  I laughed out loud after Lowell and Samuel getting it.  No, not grandma, but mommy.  I don't think she'll ask that again.  She was older than me too, which was odd.  I would have expected it from one of the younger nurses.  But oh well, it's all good!  I needed a reality check on how I'm starting to look these days... FYI, make-up doesn't cover black circles under your eyes... just thought I'd pass that tidbit of valuable info along.  :o)  Some pictures to close with... :o)

This is what greeted me Monday morning when I arrived.  Do you notice?  All her drugs and feeds were gone!  Nothing is turned on!  Later on they had to add calcium, but the morphine and who knows what else... all gone!  Well, up until this morning some are back on again, but still it was a welcome site then!

Cayla with her face being all pulled from the tape Monday morning.  :o)  Still my little cutie!

Grandma stopped by and got to love on her too!

The rest of these were from Sunday afternoon as Dad and Pat and Lowell and Samuel were all getting ready to leave.

Sunday, May 6, 2012

Quick post-surgery updates...

From this Sunday morning around 10am that I posted on facebook:
"Cayla's breathing tube was taken out this morning at 7am! Her breathing on her own is slowly stabilizing. She still has what looks like an oxygen tube in, but it is just room air going through to help her remember how to breathe on her own. Hopefully she won't need that in for long. They said if she can't breathe well, they will have to put the tube back in... She's actually settled down now a...nd sleeping and breathing ok so that shouldn't have to happen, Lord willing.

Her catheter should be coming out today too. :o)

Dr. Stewart's surgical nurse practitioner came in to see about removing her drainage tube from surgery. She wanted to see her a little more stable before she will remove it. She'll be back later to check on her and try again.

We are unable to touch or talk to her during this time since stimulation is her enemy at the moment... I told Lowell they'll need to put the hand cuffs on me now to stay away...

Thanks for all the prayers!"

From this Sunday afternoon around 3pm that was posted on facebook:

Quick update on Cayla... Her eyes flutter open periodically. She did have some extra oxygen going through the tube this morning, I thought they said she didn't. But, they have cut the oxygen out and she is now just breathing room air. :D They still have her on a small morphine drip. Nothing compared to what she's been on. She's sleeping peacefully. They dropped her calcium line since she's currently retaining what she has. The surgical nurse practitioner came in again to check and said she's waiting to remove the tube again because there's still some fluid coming out. As long as the fluid is draining the tube will remain, but her vitals are where she wants them, for her to be able to remove it.

Quick update on me... everybody just left me. O.o Won't see Lowell and Samuel until Friday night. :o( Yes, I'm done crying for now. I must say it was hard to watch them all drive off. Dad and Pat are dropping them off on their way back to Canada. Incision seems to be fine. Didn't take anything for pain until a motrin at 3pm. Feet are still pretty swollen. Pumping and milk supply good. Ok, enough about me.

Quick update on Lowell and Samuel... they just left me and Cayla. O.o They won't see her again until Friday night. She will be a completely different baby by then. At least I get to be here with her this week as she progresses, Lord-willing. I feel worse for them, not being able to be here.  Samuel will be going through Starbucks withdrawl. Way too handy having their cafe mocha that close...

Quick update on Buddy... don't have one. Haven't seen the bird in 2 weeks. Hope he's not feet up on the bottom of his cage. Shouldn't be since the Strull's are supposed to be looking after him. Although their bird did die... ok, I'm tired. More later!

Saturday, May 5, 2012

Prayer request for the next 24 hours

Just want to ask all the prayer warriors out there to pray for Cayla these next 24 hours specifically with her being weaned off morphine so they can have her coherent enough to breathe and respond to see if she's ready to have her breathing tube removed and possibly the central and arterial IV's (jugular and wrist) removed.  I have to say that I'm glad I'm not there tonight as she starts coming to more and more and fighting and feeling the pain and silently crying.  I could not handle it, but I trust the nurses to do their best taking care of her.  She does not stay still at all and thrashes around when not drugged.  I would love to somehow through a miracle from God have her be able to be on a much lower dose of morphine but still sleep or be able to relax without all the thrashing around.  Her vitals are pretty much in the range they should be to be able to remove some of this stuff.  I know she won't remember any of this, but it doesn't mean she's still not going to be in pain these next couple of days, especially if she can't calm down.  I don't know.  Just asking for peace for my precious baby girl!  Thanks!

I will also add an answer to prayers today too.  The nurse practitioner did not want to use the central or arterial IV to leave them open in case they were needed in an emergency.  So she needed to add another IV line in her other arm.  She put the rubber tie around her arm to restrict blood flow and  then tried to find a vein to work with.  She felt and felt and felt around and finally tried a spot and missed and without pulling the needle out was digging around for the vein in her arm.  I started crying and had to go to the back of her room to not watch but just pray.  I know how that hurts when they go digging for a vein.  The poor nurse was sweating it out trying to find this.  She pulled the needle out, gently rubbed the arm down and searched again.  I'm still crying uncontrollably, hormones are still to blame here too, and I start to pray again, knowing that many have and are praying too.  The next words I hear her say a few minutes later when she tried again were, "It's a miracle!  I wasn't even sure that was the right spot, but got it the 1st try!  What a miracle!"  When I heard her say it was a miracle twice I started crying even more, but happy tears.  God guided her hand and allowed her to find it the 2nd time.  :o)  I just want to say thank you for all the prayers that help even in smaller things she's going through. 

Here's a picture of her now with IV's in both arms and some pictures of my inlaws coming to visit tonight!  :o)  So, so, so good to see them all...Mom, Joe and Cathie.  Plus the picture of the deer running down Euclid Avenue as we were waiting for the shuttle tonight.  Just a little out of his comfort zone.  It's a little blurry but he's in there. 

Her IV's in both arms and what Grampa Joe said when he saw her like this, "Rudolf the Red Toed Reindeer."  :o)

Cayla's Aunt Cathie

Grandma and Grandpa

The deer on Euclid Avenue...