Kidney appointment for Cayden


Tomorrow we will have Cayden’s follow-up VCUG test.  Hopefully they’ll tell us that everything looks normal and she won’t need to take medicine anymore and won’t need surgery.  She certainly has been a trooper so far, and I just hope we get good news.

Here’s a little (well, a lot of) background:

When Cayden was born on 1/25/11, she weighed 7 lb, 1 oz.  At discharge from the hospital on 1/27/11, she weighed 6 lb, 12 oz.  At our lactation appointment on 2/3/11, she weighed 6 lb, 11 oz.  She wasn’t gaining weight and was taking a long time to nurse.  At the lactation appointment, the lady said to pump after each nursing and then feed her formula if she was still hungry.  I was crushed when she handed Michael a bottle in the office to feed her some formula.  I had been so determined to breastfeed with this baby after quitting with the other two (after a few weeks with Mackenzie and after a few months with Ethan).  So I agreed, knowing that she needed to gain weight, and we went home.

That night (and the few nights before) she made funny noises when she slept.  At first I just thought that they were the normal noises that babies make, but deep down I knew that something was wrong.  I just tried to push that thought out of my mind, but I just couldn’t shake it.  Never again will I ignore that maternal instinct!  I’ve always thought what would have happened if I would’ve followed my instinct and took her to the doctors earlier – maybe that would have prevented her from getting worse.  But if I keep thinking like that I’ll be sick with guilt, so I just try to think that everything happens for a reason.

The next morning (2/4/11) she was sleepy and didn’t want to eat much.  Nothing I did would get her to nurse; she just wasn’t interested.  I tried giving her bottles because at least I could force those in her mouth and she might get something.  She would also cry like she was in pain and it was a really high-pitched cry, not like a normal cry.  It was so loud and high-pitched that it actually hurt my ears.  Every few minutes she would scream out in pain and I had no clue what was wrong.  I thought it may have been the formula that we had given her earlier hurting her stomach.  At times she felt warm to me but when I took her temperature under her arm it was normal.  That was the longest, most stressful day.

Saturday (2/5/11) she wasn’t screaming as much but she refused to eat anything.  I was getting really worried and was really about to lose it.  I decided to run to Babies R Us so I could get a different type of bottle/nipple.  I thought maybe she was just picky and wasn’t used to the bottle yet.  We came back home and tried that but it didn’t make a difference.  Anytime she did eat, she would throw it right back up.  This was around 4pm and Michael was finally home from work.  I called the doctor on call at her doctor’s office and told the nurse all of her symptoms.  She told me to take Cayden’s temperature rectally and said she would wait on the phone while I did that.  I got the thermometer and saw that it said 102.2 degrees.  Then the panic really set in.  The nurse on the phone told me to take her straight to Levine’s Children’s Hospital.  We quickly packed some things and we left the other kids with my mom (who fortunately just happened to stop by our house that afternoon).

We got to the hospital and I was so relieved when they took us right back, even with a waiting room full of other kids.  They said a baby that small with a fever that high is nothing to mess around with!  The nurses came in the room and took her blood, got a urine sample, and also did a spinal tap.  At this point it was around 6-7pm and she hadn’t eaten since earlier that afternoon; she just wanted to sleep.  After a while the doctor came in and said she had a urinary tract infection, an infection in her blood, and her spinal tap fluid was very cloudy and grew bacteria, which meant bacterial meningitis (a very serious infection).  Once he said that my stomach sank.  I knew it was an infection of the brain/spinal cord, but I didn’t know much else about it.  The doctor was very non-emotional and just stated the facts, which didn’t help at all.  He told us that she would be there at least a few days and it would just depend on how she improved.  When you hear that your newborn child has a very serious, life-threatening infection it would have been helpful if the doctor was a little more compassionate.  Fortunately, all the other nurses and doctors that we ended up seeing were absolutely awesome.  After the doctor left the room, I started crying and just sat there with Michael on the bed.  Then I started Googling anything I could find out about meningitis, which is probably not a good thing to do, but I had to learn about it.  After reading some, I realized that she had all of the symptoms: high fever, lethargic, not wanting to eat, irritable when moved, high-pitched cry, fast breathing, vomiting, etc.  Soon after that the nurse came in to start Cayden’s antibiotics.  After a few of those were done (they were in a timer pump through her IV), we finally got up into a room around 11pm (she still had not eaten).  I was about to die because I had not been able to pump this whole time.  The nurses were awesome and actually let me use one of the hospital-grade pumps  while we were there.  I called family and we got settled into the room.

Sunday (2/6/11) morning she actually wanted to eat a little bit, which was great because she hadn’t eaten anything the 14 hours before that.  The doctors said that they were going to do some tests to try to figure out why she got a bladder infection.  The infectious disease doctor talked to us and said that the culture that grew was E. Coli bacteria.  It wasn’t contagious and they said that the bladder infection got into her blood and then got into her brain/spine.  They then told us that the treatment is 21 days of IV antibiotics and that we would be there for a while.  He did mention that she was doing well for a baby with this type of infection, which was good news.  Later that day they did an ultrasound of her bladder and kidneys, which we were told was normal.  She also breastfed one time that day, which gave me that little glimmer of hope that I needed to know that everything would work out okay.

Monday (2/7/11) was a better day.  She wanted to eat more and was awake some. She wasn’t throwing up anymore.  Other than the nurses waking her/me up every few hours to check her vitals, hearing the alarms going off because one of the many cords attached to her had moved around or slipped off, having to pump every few hours, and her waking up to feed, everything was going great!  You don’t get any sleep with a newborn anyway, and even less so in a hospital room.

Cayden in the hospital

Tuesday (2/8/11) – Still getting better.  They did a repeat spinal tap to see if the culture would still grow bacteria.  The doctor said that the fluid was still cloudy, and not to be surprised if it still grew something.  She said that this type of infection takes a while to clear up.

Wednesday (2/9/11) – They told us that they were going to put a PICC line (peripherally inserted central catheter) in Cayden’s arm so she can get the rest of her IV treatment at home.  They said that IVs don’t do well for a long time, especially in babies, and that the PICC line can stay in for years, if needed.  They were going to try to put it in her arm, but if her veins were too small, then they might have to put it in her abdomen.  It’s like an IV, but the tube goes all the way from the arm into a vein near the heart.

This same day Michael starts to gets sick so I panic and send him home for the night.  I didn’t want him spreading any germs.

Cayden in hospital

Thursday (2/10/11) – This was they day that they did the PICC line insertion.  She had the procedure done in the middle of the day and couldn’t eat for 4 hours beforehand.  She could have Pedialyte and that seemed to sort of satisfy her.  We had to go down to the X-ray floor for the procedure.  We had to wait a while, so the nurse and I and Cayden in her big rolling crib/bed are sitting out in the hallway waiting for them to get ready for her.  She had to be put to sleep, and leaving her in that x-ray/operating room was just about all I could take.  Michael wasn’t with me so I was just all alone waiting in her room for her to get back.  They called me on the room phone about 2 hours later saying that she was starting to wake up and I could come down and feed her if I wanted to.  I couldn’t get down there fast enough!  She was still groggy from the medicine, but I did get her to nurse for a while.  I think this was the day that they also did her CAT scan to check on her brain.  They said they could see where the inflammation from the infection was from, but that was normal and everything else looked normal.  She also passed her hearing test (meningitis can affect hearing so they wanted to check).

Friday (2/11/11) – Today, Cayden had the VCUG (voiding cystourethrogram) test done.  This is where they use a catheter to put a special dye into the bladder and see through x-ray if it travels back into the kidneys.  In a normal person, it will not.  In Cayden it did in one of her kidneys, and the radiologist said she has level 2 reflux (level 1 being the mildest and level 5 being the worst).  The doctors said that she will have to take preventive antibiotics to prevent another urinary tract infection.  At least then we knew what had caused everything.

Cayden's hospital room

We were finally able to leave the hospital around 5pm and realized that Michael’s car had been tried to get broken into.  The lock on his door was knocked off and he couldn’t use the key on the driver’s door.  Just what we needed!  After talking to security, we finally were on our way home.

A few hours later the home health nurse came over and showed us how to give Cayden her IV medicine.  I was scared to do it at first, but after a few times it was no big deal.  They delivered all the medicine and each dose had to be given to her every 6 hours, for 30 minutes each time.  She had to have this medicine for 11 more days.  I was so glad when that PICC line came out – I could dress her in normal clothes and I didn’t have to wake her up when it was time for her medicine.  The night that her PICC line came out she started taking her oral antibiotics every night and has taken them since.  She has two little scars on her arm where the PICC line went in, but other than that you can’t even tell she was ever sick!

Cayden with her PICC line

I will update after her appointment!

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