Adjusting at home/ Doctor visits

When I sit down to write in the blog, I want to write everything out.   I realize that I don't have time anymore to really do this and feel discouraged that I'm not keeping it up.  I want to remember how things went during this time and how she progressed.  The only time I'm really in front of a computer is when I'm pumping.  With only one hand to type with, it doesn't really work.  I haven't really found a good time slot to sit and type.  I want to enter something every day, but have almost felt so far behind and missed writing so much that it's hard to know where to begin and so I don't type again...  I guess I just need to settle for short posts these days.  I can easily add 5-10 sentences on a facebook status, but when I pull up the blog, 5-10 sentences doesn't seem to be enough.  I feel like I need to write more.  Maybe if I settle for what I can handle right now with my schedule and just post short notes, I'll feel better.  Just sorting out my thoughts...

We've been home for more than a week now and doing well.  She seems to be doing so much better overall.  She's starting to get into better sleep/eat/awake patterns.  Granted it's every 3 hours so I still feel like I get so little done in between.  Oh well, seasons come and go and change before you know it.  This season will be over and then I'll miss it... ok, maybe not, but you know what I mean.  ;o)

I woke up Monday morning the 11th throwing up.  This went on from 7am until 1pm when Samuel started in on the party.  Lowell stayed home to take care of Cayla as I stayed away from her and wore a mask.  I wasn't sure how I'd feel by Tuesday morning when Cayla had 4 appts. at Cleveland Clinic, so Lowell took Tuesday off and went to all her appts with us.  It was good he did.  He got to meet Dr. Gurd and to see Cayla get her cast taken off and a new one put on.  This is her last cast, but it will stay on for 3 weeks.  They also fitted her for her braces and shoes she'll wear as soon as this cast comes off.  I mentioned Cayla's spine to Dr. Gurd and he said he's looked at it and plans to discuss it with us when we get through the club foot casting and on to just braces.  He asked if we'd seen the x-rays of her spine and we hadn't, so he pulled it up on his computer.  He said that a typical spine looks like little rectangles with 2 circles under them.  Like the side view of a child's wagon.  There are supposed to be 2 circles between each vertebrae (you know, I really hate trying to describe stuff I know I'm not getting right, but oh well...) and there is one spot on Cayla's mid to lower spine where it looks like a disc is missing on one side. Well where this is, has caused the 2 vertebrae to touch and almost fuse together, thus causing a fanning out effect on the other side and causing her spine to curve.  This is also where 2 ribs have come out of that same spot and instead of being separated like all the others, are fused together.  I had never seen or heard anything yet about any of this, so it was very interesting to find out.  He said he'd go over what they might be able to do with her spine at another appointment.  So, that will be apparently be next on the list of things to correct on Little Miss Cayla Joy.  We did run her up to 12th floor to get her weighed with no cast on, and she now weighs 8lbs. 15 oz.  :o)  She's doing good at chunking up for surgery.  There's no set weight she needs to be at before her 2nd heart surgery in mid September, just that she steadily gains weight between now and then.  She's doing fine.

We then took her up to see the dietitian/nutritionist.  She increased her intake slowly over the next 2 weeks from 1.75 oz. every 3 hours to 2 oz. every 3 hours.  She doesn't eat much, but she is eating fortified breast milk which is fattening her up pretty good.  I have to add a whole tsp of Similac Advance to every ounce of milk.  I think it sounds like a lot, maybe it's not, but it's really upping her caloric intake. She's not done as well with bottle feeding since we've been home this second time.  She literally just poops out after 25-30 ml of milk and just can't seem to get herself to take anymore.  So the rest is given by the NG tube in her nose.  The first week we were home, it didn't take her long to be able to drink all 45 ml from the bottle.  She still only does bottle feeding every other feeding to give her a chance to rest in between.  It really is hard work for her to bottle feed.  They call it aerobic exercise for her.  Although this afternoon for the first time since we've been home this 2nd time, she took 45 ml in about 5 minutes.  She did spit some up about 45 minutes later.  I don't know.  They aren't really worried how she's getting the milk, just that she's getting it.  So we'll keep working away at it.  She is also able to still breastfeed randomly which is good. 

Our last appts. were back at the Children's Hospital building with the cardiologist and had some blood drawn.  Dr. Erenberg checked her out and said that her heart, incision, and overall appearance looked great.  We will go back in 3 weeks when she gets her last cast off and then will have an echocardiogram and set a date for her heart surgery.  Since her first surgery was so much easier than the expected Norwood, this 2nd surgery, the Glenn (I think that's what they call it), will be more invasive and involved than her 1st, where usually it's not as bad as the 1st.  But the success rate is still around 95% for this one, so we'll see.  Right now and for the next few months, she shouldn't have any major health issues and be a somewhat normal little baby girl.  We did take her to church for the first time last Sunday which was so exciting to show my sweet little girl off.  :o)  She did great.  Right now the worst thing she's dealing with is a really intense diaper rash that we hope to have the pediatrician give us a prescription for something stronger tomorrow.  It looks bruised and slightly bleeding.  Dr. Erenberg gave us a prescription yesterday, but it's not working, so we're hoping Dr. El Gammal can give us something that will. 

In another post, I'll have to write about Dr. Freedman the neurologist and share his letter he sent us.  He is the first doctor to give us a complete report that covers all diagnoses from all specialty doctors in one report.  He was very thorough and gave us many words to look up and see what they mean to know exactly what Cayla is up against.  I've been wanting a report like this to really be able to see what all is really going on with her now that they've had time to do their reports.  He is also the first one to mention her nose again, since Dr. Rajabi mentioned it back a couple of months ago, about it not having a tip or something like that.  So far she looks pretty cute with her nose the way it is, but maybe she'll grow and it won't... I don't know.  Just one more thing to have to look at.

Tomorrow, Thursday, I have 2 appointments.  The first is my 6 week check-up (even though it's now 7 weeks) with Dr. Rajabi to tell me I need to sleep and drink more... :o}  He doesn't usually do appts. past delivery since he's a fetal care specialist OB/GYN.  But since my OB/GYN here in Ashtabula got fired, I mean, is pursuing other interests, I've been told to finish this one up with Dr. Rajabi and find a new one in town.  They say the one that's replaced her is really good, but I don't think I really need one any time soon at this time, so that can wait.  My 2nd appt. is at CC with Dr. Magnuson, another surgeon.  This is the surgeon that is going to operate on her little bottom in November.  This is the first appt. we've had about this, so we'll see how bad it is and what they can do.  You know, Cayla didn't have to have the Norwood heart surgery since God placed her aorta on the "wrong" side of her heart, but she sure seems to be making up for it with all these other anomalies going on.  I believe she has been clinically diagnosed with the DiGeorge Syndrome, which is what is possibly behind all the issues she has.  Who knows?

Next week, there's no Tuesday casting, but I think Thursday is Cayla's 2 month checkup with her pediatrician.  She will get vaccinations then too.  Not sure what she really needs or not with her heart and weaker immune system.  Still researching this.  Any input would be great!  I know many have opinions about immunizations, but I feel like I don't have a choice since I don't want to risk anything with her.  I know some vaccinations lead to autism and other problems, I just need to look it all up and figure it out.

Well, dishes didn't get done, or laundry, or washing of syringes, etc. because I've been writing here.  So, maybe I can just add some quick notes here and there over the next weeks.  As far as a prayer request right now, it's my time in God's Word.  I have to admit that it gets pushed aside for "more important" things.  I do pray for people and situations as I hear about them and whenever God brings them to mind, but I need much more than that.  I am trying to work up a schedule to make sure everything gets done that I want to get done.  Also, I saw today a post on fb that a little hypoplastic left heart syndrome baby that Cael's mom knows, died yesterday, I believe.  I cried and went and got Cayla and just held her.  I am so thankful for all God's done in her life already.  She has many hurdles to cross, but they don't appear life-threatening.  God has worked great things out for her and I praise Him for all He's done with her life so far.   Thanks for the prayers and I look forward to posting some more much shorter posts.  I'm off to feed Cayla again. 

A busy morning

It's Friday morning and I do believe someone said it's June already!  Amazing.  I stayed up with Cayla last night just holding her between her 10pm and 1am feedings.  Then after pumping I went to sleep.  We all woke up at 4am when the nurse came in to feed her through the pump.  I thought since I was up I'd pump again too.  So about 4:30am or so I went back to sleep.  I was awakened by Dr. Gurd tapping my shoulder at 6am ready to put her cast back on.  So the day started.  They put her new cast on and it's much bigger than the last two, but oh well.  I got Cayla's 7am feeding ready and started that when the nurse came in and said cardiology was ready for her ecocardiogram... I must have missed that memo.  :o)  So, we took off to her eco and finished eating while there.  At 8am, the sonographer said she was done and would go get the doctor to see if he wanted to look at anything.  Well, about 8:15 I asked them if the doctor was coming because I had another appointment with Dr. Freedman the neurologist at 9am.  She said Dr. Lorber was the opening lecturer this morning and hadn't come back yet.  I told her I really needed to get back since I hadn't eaten and wasn't willing to be late for the next appt.  Plus, an eco with Dr. Lorber is not quick.  They said that was fine and he'd just look over what was done by the sonographer. 

We had just got back to our room, sat down and started 2 bites of my breakfast when they said transport was here to take us to our next appt.  I asked if they could wait 5 minutes and they said to just call for transport again.  Well, that would take forever, so Misty the nurse's aid took us over.  This was a first... to arrive and see a doctor standing in the lobby waiting for the patient!  Dr. Freedman check her out from head to toe with all her nerve endings and reflexes and who knows what.  Very nice man and explained some of the genetic reports that I hadn't known about.  They've pretty much put Cayla in the DiGeorge Syndrome category even though she has the 22 Q 11.  She might have a slight deletion on that particular piece at another level down in the chromosome chain.  I really don't understand it all. 

Then he said the occupational therapist was ready to see her now.  Missed the memo on that appt. too.  Oh well.  She took out all her books and charts and started testing Cayla's responses and abilities on her charts.  She said she'd send me her report in the mail.  Cayla did well for the most part, but if you're going to work with a baby who's only wearing a diaper then turn the heat up... Anyways. :o)

We finally got back to our room and the cardiologists spotted us back and said they  missed "rounding" on Cayla, so they all gathered around.  Not much to say, but I asked about needing oxygen at home... No, and if there's any other signs to look for to let us know if we need to bring her in again.  No, we did good bringing her in this time.  We discussed future doctor appts that they want Cayla to have and as long as I don't have to set them up, I'm good.  I'm so tired right now.  Cayla's sleeping and I came down for a minute to check the internet before going back up to eat lunch, pump and feed Cayla and the cycle continues... 

Well, just a quick update.  Looking forward to seeing my mother-in-law around 4pm to pick us up!  :o)  God is going to have to keep me going because I can't think straight anymore.  He's done it before, He can do it now.  A verse that just came to mind is:

"Fear thou not, for I am with thee.

Be not afraid, for I am Thy God.

I will strengthen thee, yea I will help thee.

Yea, I will uphold thee, with the right hand of my righteousness."

Isaiah 41:13 maybe?  I can't remember the reference at the moment.  :o}



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)

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)

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)

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!

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!

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!





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)

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)