Vesicoureteral Reflux

Jaely was diagnosed with Vesicoureteral Reflux (Grade II) yesterday at Phoenix Children's Hospital. Basically this means that some of the urine that travels from her kidneys down the ureters to her bladder back-flows (has a reflux) and travels back up the ureters and possibly her kidneys. This makes her more prone to urinary tract infections and any infected urine could enter her kidneys and cause them to become infected. If her kidneys become infected they could cause damage and scaring effecting its ability to function in the future.  Jaelyn will begin to see a specialist, a Pediatric Urologist starting Aug. 12th, to determine her plan of action. She will go on prophylactic antibiotics for a period of time depending on what the urologist decides for  her. It varies depending on the child from 3 months to a year and then we head back to PCH to repeat the procedures she had yesterday (VCUG and ultrasounds) to see if she has outgrown it or if things have remained unchanged. If unchanged she will continue daily antibiotics until she is tested again and the cycle continues until she outgrows it or surgery is deemed necessary. 

The tests yesterday were awful and I never wanted to have to go through that again. Unfortunately we know that we will have to go through it at least once more. Until the problem is corrected.  There is nothing worse in the world than holding your child while they are in pain and knowing there is nothing you can do to take it away from them. 

I found this website that explains her reflux very well and has great pictures to go with it. 

http://www.pedisurg.com/PtEduc/Vesicoureteral_Reflux.htm 

We love bath time!

Being a Mom is the Absolute Best

Being a mom is the absolute best. It is the very moments that I want to pull all of my hair out, that when I think back to I tear up because of how fast they grow, then smile and laugh hysterically, that I will remember the most.

Choking

My house has at least 100 choking hazards in it for Jaelyn to get to and choke on. This is a new experience for me because when the boys were putting everything in their mouths, I didn't have the small toys (Lego Stars Wars toys, Bionicles, etc.) that I have in my house now. I am constantly having the boys pick up their toys and keep them out of harms way. But of all the things to become lodged in her throat, this little piece of tape was the culprit. Yesterday morning I slightly panicked when she started drooling non-stop and was hacking like she wanted to make herself throw up. I could tell her airway was not blocked and she could breathe but there was clearly something back there that was not supposed to be. What did I miss? I had made sure nothing was on the floor in my room that was too small for her! Finally after a few sips here and there of her bottle she was able to make herself throw up. Inside her mouth I saw a white ball that I quickly grabbed out and there was this little, clear piece of tape.

Jealyn Update #3 (I think)

Steph's comment today made me realize that I have done a Jaely update in a while. She is doing really well. She was pretty fussy yesterday, but doing great this morning. I think yesterday was a possible result of two more teeth coming in on the top... I say two more, but the fact is that she only has two. I looked at the boys' baby books and Jacob and James had 14 teeth at 13 months of age. Jaelyn will be lucky to have 4 at 12 months - she is proving to be as different as she possibly can from them.

I have not schedule her appointment yet at children's. I was waiting to hear from her peds office (the scheduler) but haven't heard from her so I will probably give them a call today. I will let you know of her appointment date when I hear of it, but I am sure there will not be any results for a few days after that.

Her poor system is overwhelmed with the antibiotics she is having frequent and runny bowl movements. So we are trying to keep up with the probiotics to help that out some. She has developed quite the rash from it though so we are changing her more often then normal. The cloth diapers do help tremendously though - I cannot imagine what her rash would look like with disposables. In fact, when I know I am going to be out for a long day, sometimes I will throw some disposables into the diaper bag so I don't have to haul a bunch of dirty cloth diapers home with me. By the end of the day she is so red. I am not sure why I ever used the disposable diapers with the boys!

Jaelyn and I have become very attached to each other. When I leave the room, even if Josh and both of the boys are in there with her, she will let out a whimper to let me know she is unhappy about it. Sometimes she will even full on cry. I have to say that when Josh takes care of her for a day on the weekend to give me a break, when she is put to bed and I feel like I have not held her enough during the day, I really miss her... even when she was right in front of me the entire day. As we speak she is standing up holding onto my legs as I sit in the computer chair.

I actually had a dream last night that I watched her stand up from the middle of the floor all by herself without using anything to pull herself up and then she took a couple steps until she grabbed onto the tv stand... I was soooo sad!!! I want her to stay a baby forever! Thank goodness it was only a dream.

Jaelyn Update... again

Just when I thought we were in the clear and the nurse was calling to let me know her fevers were in fact caused by something viral, the results of her specimen came back with ecoli in them and she does have a Urinary Tract Infection. No problem... antibiotics (with some probiotics to help her little system on those harsh drugs) will do the trick. Not so fast. Babies that have UTI's (under age 2) they treat very aggressively because they are at high risk for having vesicoureteral reflux (VUR). In two weeks, Jaely will need to visit Phoenix Children's Hospital to have an ultrasound of her kidney's and bladder. They will also (this is where I started to cry) catheterize her again and insert a die to make sure there are no kinks in her intestines. It is a procedure called, Voiding Cystourethrogram or VCUG. What can happen in babies is instead of everything flowing out the way it is supposed to from the kidneys to the bladder, the urine flows backwards, from the bladder to the kidneys. This puts an infant at risk for kidney infection and kidney damage. If test come back positive, which I feel good that they won't, she will take an antibiotic every night for about 6 months and will have the tests again. Eventually, they say, most babies outgrow it after several years and no surgery is necessary.

I feel like this is all my fault. I should have been more careful with diapering her, changing her, wiping her, etc. but the dr. reassured me that if it was that easy, babies would be prone to this infection and get it all of the time. She said that I did the right thing by bringing her in when I did - which really did not make me feel much better because as her mom that is my job. Yes, she had Hand, Foot and Mouth Disease, but after all symptoms were gone, it was not normal for her to continue her high fever. Even if it is not my fault, I feel horrible that my sweet baby girl has to go through all of this again. Putting the catheter in the first time was traumatizing enough. I asked about being able to numb her, our Pediatrician said it will be up to Children's hospital to decide. I certainly hope they can - I hate to see her in that much pain.

Jaely update...

She is doing great! Her temp was gone the very next morning, of course after all of those awful tests! We are still waiting results for some things, but I think it is safe to say she is in the clear. Some blood work did come back and showed that she is anemic. She will start vitamins with iron to help - I am trying to give her more oatmeal too which has 40% of her daily value. Hopefully this will help - next Dr.'s visit - 9 month appointment in just a few weeks!

(Don't stop reading here - read about my adorable boys below... !)

Playing "House: The Tooth Fairly" Together

I think with this screen generation of children, many have forgotten how to entertain themselves and play together without some sort of stimulant. James and Jacob, the past few days, have been awesome using their imagination to play and getting along wonderfully... just when I thought they were extremely sick of each other, they have started getting along better than I think they ever have!

Today they played "House" together, which I have mentioned is Jacob's favorite game. I walked into James' room and they stopped playing. I did not know what they were up to and usually silence means they were caught doing something they were not supposed to, but not this time.

I asked them, "What are you doing?"

"Nothing," James said.

"Playing house," Jacob replied. "James is the tooth fairy."

"Yea," James said. "I am the tooth fairy and the daddy."

hmmm.... I thought to myself.... coincidence?

"Get out," they told me. They were embarrassed to play in front of me.

I slowly closed the door just enough so that I could still peak in and watch. Then Jacob pulled up his pillow and underneath was one of their trains. Jacob acted very excited, "Wow!" and James said, "Whoa! The tooth fairy brought you GeoTrax!"

They make me smile :)