so done with this...

I apoligize for not keeping you up to date.  We came home after our last hospitalization with a PICC line in and directions to administer IV antibiotics.  Sunday 8/15 was our last dose of IV antibiotic and the home care nurse was to come on Monday and remove the PICC line.  Sunday I was looking forward to getting that thing out.  By Monday at our visit to the pediatrician, I had seriously considered asking if we could keep the line in for a few weeks, in case we ended up back in the hospital.  Then they wouldn't have to put in a new IV line.  Call it mother's instinct or a whisper from God, but I listened.

And thankfully so.  We were back in Children's Emergency on Saturday night because of fever.  And no surprise, were admitted for UTI.  We are now up to 3 hospitalizations in her short, 11 week life.  I haven't written because I just don't know what to say anymore.  Same drill really.  IV antibiotics, have to stay until fever is gone for 24 hours and culture has grown.  Someone coming in every other hour to poke or prod or bother Cailynn in some way.  I've gone from being afraid, unsure, overwhelmed at our first stay, to an "old pro" this time.  We've run into doctors and nurses from previous visits that still remember her name.  Not sure if its because its only been 2 weeks since we were here last, or because she is so memorable in her cuteness!


Talked to the uroligist yesterday, and after asking my million questions that all boil down to, "Why does this keep happening?" have come to the realization that we will be back, probably in a couple more weeks, and will keep coming back until she is able to have her "big" surgery to correct her "plumbing."  So more tests will be ordered...

(later......) Just heard from the nurse that we have been scheduled for an MRI at 9pm tonight, so I guess we are not going home today.  She will be sedated and she will need another IV put in because they cannot put the contrast fluid through her PICC line.  She also has to be NPO for 4 hours, so no more breastfeeding after 5pm.  This will be rough as her fussy time is between 7-10pm.  But we will make it through because we have to.  I'm upset she has to have another IV line, I know how much that hurts her, but what can I do???  We just have to endure, deal with whatever comes up, and keep trusting God.  Can't say its as easy as it was at first.  Both Trent and I are getting emotionally worn out over the whole condition.

Thank you for being interested enough in our lives, in her life, to continue to read her blog.  Thank you for your continued prayers.... don't really know what else to say.... 

Plan for the day.... GO HOME!

The goal today is to get home.  We will have spent 6 days in the hospital, but with the successful procedure yesterday, hopefully we will not end up here again until our next surgery is scheduled.  Our urologist performed a cystoscopy with puncture of the ureterocele.  It took less than an hour, but seemed like forever without my baby.  The hardest part was after the doctor came out and told us how the procedure went and that she was in recovery, waiting for them to bring her back to us!! He did gain some new information from the cystoscopy.  It seems she does not have any valves where the ureters come into the bladder, which is why her VU reflux is so bad. 

We don't really know what is next for her, and I didn't really want to ask yesterday.  I just want to get through this experience and we will find out what is next at our next doctor visit.

She spent a few hours after the procedure hooked up to monitors and IV fluids, but was off of them shortly after lunch.  Thanks to friends, Mom and Dad were together for the procedure and when she returned.  It was probably the most time we have spent together all week!  Cailynn spend the rest of the day mostly in Mom's arms nursing and sleeping. 


It seemed like last night lasted forever, but here it is, almost 6am and I am in the final countdown!  I expect today to consist of long periods of boredom interrupted by bursts of flurry and activity as the different doctors and hospital people come to get everything set up for us to go home.  Because of the IV antibiotics she must be on for another 10 days, we need to coordinate the home health care before we can be discharged.  While I'd love to be out of here as soon as possible, I'm shooting for dinner at home.

I just want to thank those of you nearby who were able to come visit us during our stays in the hospital.  I really appreciated your company and support.  And to each of you who thought of us during your busy day, Thank you.  It helped a lot to know we had a lot of people all over the country, and even the world, thinking of us and praying for us.  I hope to not have to update this blog again soon for anything other than a doctor visit.

hospital pictures

with daddy

talking to Nana

just hanging out

catheter bag in background

Day 3...I think?

Got the PICC line in by noon.  First x-ray showed it needed some adjustment so the IV therapist came back & readjusted the line.  Second x-ray showed it was good enough.  Apparently she doesn't have very good veins.  Poor baby went though a lot to get the PICC line it, including getting doped up with morphine and Versed.  She is a very squirmy baby and even with the pain killers and sedative, she was still pretty wiggly.  I was glad that I got to be with her during the procedure.  With the PICC line in, we should be able to come home after the surgery.  The hospital will then send a home nurse to our house to administer the IV antibiotics and change the dressing.  I still need more info on how exactly that will work, but glad to hear that we don't have to be in the hospital for 2 weeks!

The big kids left for Disney World with Nana and Pop-pop today.  I was sad this morning as I thought of them leaving...wishing we could all be going together.  But I know that they will have a great time, and it will be easier for Trent to just have one at home.  And that means less for me to worry about too.

We had visitors today!  Trent and Carissa came by for at least 3 hours and then my friend Amy came and brought me twizzlers! :)  I am so thankful for our family, friends and church for all the prayers and support.  It is comforting to know that when I am too tired or overwhelmed to pray, so many of you are interceding for us.

We're back!

I am writing this from our 3rd night in a hospital room in Children's again.  Cailynn had a fever last Monday night so we had to cancel her surgery on Tuesday.  The fever went away for most of Tuesday, but Tuesday night it went up again so Wednesday we came back to ER.  They did not have to do a spinal tap this time because of her age and her history, quite a relief for us!  The blood test came back fine, but they didn't even have to send out the urine before we were pretty sure we were going to be staying.  It was cloudy, like last time, which indicated an infection.  Another IV block was put in as we waited for the urine test to come back.  I had anticipated the likelihood that we would be staying so I packed an overnight bag.


We got up to our closet of a room about 8:30pm at which time Cailynn seemed to be in a lot of pain and crying.  I got her calmed and asleep by 10 pm and had a decent night.  During the morning exam the doctor thought baby's lower abdomen was swollen so ordered an ultrasound to check for a hernia.  Fortunately no hernia!!!

We were supposed to leave for a family vacation to Flordia/ Disney World on Saturday.  I was still hoping that we could make it, even if a couple days late.  But later that day we got the good/ bad news.  Good news - our surgery was reschdeuled for Monday!  Bad news - we will have to miss our vacation.  We were incredibly dissapointed (it would have been Trent's first visit!) but obviously Cailynn's health comes first.  And I don't think Mickey is going anywhere....

Once we got that news, and that we were going to be here til after the surgery, I requested a bigger room!  The urologist ordered a folley catheter to relieve pressure on the uerterocele and in order to keep things clear in her bladder to reduce chance of infection.  Later in the day we got a nice, big room!

Day 2 -
After a night in the big room with the big couch/bed, we got our next batch of good news/ bad news.  The urine cultures had begun to grow, but what there were growing was a bacteria uncommonly found in the urinary tract (Pseudomonas).  So our antibiotics were changed.  But because of the bacteria and because of her age, the antibiotic therapy for her will be 2 weeks of IV antibiotics.  After digesting the idea that we would have to be here for 2 weeks, the doctors started talking about putting a PICC line in Cailynn to replace the IV block.  The IV only lasts an average of 3-4 days.  A PICC line is a very small, flexible tube that they put in her vein and thread to the vena cava.  It is more permanent IV line, so that they don't have to keep poking her and putting in new IVs.

They give her a sedative to put in the PICC line so we were told we couldn't nurse 4 hours prior to the procedure.  I was told to stop nursing at 2pm because the procedure was scheduled for 6pm.  But the IV therapists were called of to a couple different emergencies in the hospital and our procedure was postponed twice before they came in and cancelled it for today and let me feed the baby (almost 6 hours!)

The IV nurse came back tonight and talked to me and plans to have Cailynn first on the list for tomorrow.  Tomorrow's nurse arrives at 9am and she told me we can nurse until then.  Apparently the first nurse had planned on using versa and morphine as a sedative, but the nurse tonight didn't see why they needed the morphine, so we didn't have to be NPO for 4 hours.  That was a relief.

So now its almost 11pm, 2 more hours til her next round of antibiotics.  Praying the IV line she has in now is still good...  then maybe some sleep.  Tomorrow morning we will have the PICC line put in, x-ray to confirm placement, and then maybe take a walk around the hospital since they will let us off the floor.

Good night...

sick baby, surgery postponed

Yesterday evening, Cailynn got a fever.  She was feverish and cranky throughout the night.  I was up with her a few times throughout the night and she had some vomiting.  Sounds exactly like the virus her sisters had last week, so I am assuming that is the case.  I called the urologist and they had to cancel and reschedule her procedure.  Its scheduled for October 3rd, but we were put on a cancellation list so hope to get in this month still.  We really don't want to go through the ER stuff again, so hopefully by this time tomorrow she is doing better. 
Thank you for your continued prayers.  The unpredictable nature of all this has taken a toll on both Mom and Dad.

countdown to surgery #1

We finally heard from the surgical department at Children's Hospital.  Cailynn's surgery is scheduled for 3:45pm tomorrow.  We need to be there 2 hours before to check in and do pre-op.  Because the paperwork we received said no more breastfeeding 8 hours before surgery, I was eager to talk to someone at the hospital because that was just not going to work.  At first the nurse that called said we couldn't nurse after 9:45am - 6 hours without nursing a 2 month old!!!  I burst into tears.  He was very nice about it all, but I was still upset.  I had done research on the internet and found out that many Children's Hospitals have a 3-4 hour cut off and I was so hoping that we could use that.  Shortly after hanging up with the nurse, he called back saying that he checked with the anesthesiologist and they gave us 2 extra hours, so we can nurse til 11:45.  I was so relieved!!!  I also found out that once we check in, Cailynn will be given a "cocktail" sedative and then taken back to the surgery room.  They will give her gas to knock her out and put the IV in after she is unconscious.  After our experience in the ER, that was a relief.  I was also told that we can nurse immediately after she wakes up in recovery.  We will be admitted for overnight observation because of her age, but should be able to leave Wednesday as soon as the Doctor sees and releases her.