Cousins Are The Best!

Make video montages at www.OneTrueMedia.com

You can see for yourself what a blast we had together with Christy, Anna and Norah! It's not quite the same without the noise factor... that's what makes it really fun!

Thanks for coming down to hang out with us. We love you all.

(we missed you uncle Lee)

Neuro Day

(These pics were taken just for fun the other day when A & J were "snuggling" in the rocker)


Yesterday (Tuesday) was Abby's Neuro Day. We saw both docs taking care of her neurological system.

First thing in the am we saw her neurologist. Abby's VNS settings are at the goal rate for now, so we will watch, wait, and see how she does over the next 2 months. We discussed her seizure activity, specifically pertaining to her dramatic increase in grand mals after receiving sedation recently. Thinking back over the past 2 times she got sedation for surgery/procedures she had a huge increase in seizures that night and following day. Hmm. Something to consider for the future, although there isn't much anyone can do about it except be prepared for it to happen again.



We also talked about the prolonged seizures she experiences during times of illness. He said it is concerning but there isn't much we can do about them either. She's already on 3 seizure meds plus the new VNS device! As she grows it is expected that her seizure activity could change... possibly for the worse. There is always the option of increasing the dose of one med or trying new kinds.

Because she has epilepsy her body is already prone to manifest stress through seizures. Stress includes any physical strain such as fever, fatigue, anxiety etc. So if we could somehow make her life stress-free we'd be good!



After that appointment we headed to Birmingham to see her neurosurgeon for our yearly check up. No CT needed this time because we had already sent a copy of a previous scan she got back in the fall. This made our afternoon at Children's a lot shorter. The visit itself went fine. He asked how she seemed to be doing and what new things she has learned. We talked more about her seizures and her implant.
After the discussions were over, he said those beautiful words I love to hear "well, see you next year!"

Josiah was a champ during our time at the hospital! (Not so much in the car though-I'm getting good at tossing him goodies from the drivers' seat!)
He's getting so much easier to take places with Abby. For one thing he WALKS all by himself, and he can hold his own drink and eat his own snacks. The biggest thing I see coming in handy is his ability to obey me... all that practicing at home pays off! The entire time we waited in the lobby (about 30 min) he sat next to me on the chairs drinking his milk and chatting about the other kids he noticed. I was relieved for the minimal contact of germy surfaces, and maybe a little bit proud of him too!



Going to Children's is always a combination of sadness, reality and gratefulness. As usual yesterday we saw so many kids with severe health needs. I noticed one baby in particular. She was about 6 months old and tethered to a ventilator, apnea monitor and feeding pump. It took two ladies to just walk her down the hall. One to hold her and carry her vent on their back, the other to push the double stroller laden with countless bags of equipment trailing behind. Josiah and I sat and watched as her mother rocked her and loved on her.

It's always in those moments I feel so humbled and grateful for the mercies God has granted me. As I hugged Abby on my lap, I said a silent prayer for the hearts of her parents.
I noticed them looking at us from across the room and we exchanged understanding, motherly smiles.

As things tend to go at our house this winter season, Abby is sick again today. She has another fever. I guess this means more time at home, more watching Signing Time and less adult human contact. Oh well... Spring is coming soon, right?

PS. Next up, pictures of our fun visit from the Younger Girls! (although they're not really "younger") he he. That was for you Chris!

The Sickies Continues

(A & J sharing secrets)

Off to the doctor's we went today. Abby is still running a low grade fever. I don't think she ever got rid of her fever from the RSV/pneumonia last week. We started taking her temp last Thursday because she just seemed out of it. Then through the weekend she was having tons of seizures (the grand mal kind). Saturday she probably had 15+ and Sunday about the same. This usually tells us she feels terrible.

Her ears, throat and lungs were fine... so it looks like she caught a virus on top of everything else. At this point she isn't showing any other symptoms so at least she isn't miserable.

We are looking forward to a wonderful visit from my sister Christy and her girls, Anna and Norah! They are coming to play tomorrow and will stay as long as we can keep them! I know Josiah and Abby will enjoy every moment with their cousins. And of course I will too! It's hard being so far away from people we love so dearly.

Hopefully we will have time to snap a few pictures to share.

Another New Tube

We are back from the hospital... again. This time Abby was treated at the adult hospital, but fortunately we saw some familiar faces! Our main nurse usually works at Children's and I think he has taken care of Abby in the ER before.

As compared to the last time she had her GJ placed here, this experience was much more organized, controlled and pleasant. I think she really needed a break today! They got her IV on the FIRST stick!!! This very, rarely happens. I was prepared to be a momma bear and insist on certain things to make this day easier for Abby. Surprise, I didn't have to! Everyone took such great care of her, explained everything and even got her into the procedure room 10 minutes early!

Whew. I was incredibly relieved. The doc had her new tube in place in less than 20 minutes and Abby was snoozing the whole time (with IV Propofol of course). I much prefer her to be out for this procedure... unlike our past experience.

Now she is resting on our bed and slowly building up her feeds again. She did great without any feeds all day.

Thanks for all your notes, calls and posts of encouragement. We appreciate knowing people are thinking about and praying for Abby.

Home Sweet Home

We finally came home Tuesday evening. Abby is doing well without oxygen and seems to be feeling a little better. We brought home another contraption to add to our decor... a suction machine. It has really come in handy! Thankfully I think we are on the tail end of the mucous wars and will be returning our new "friend" soon. Although we did think it might be nice to keep it for the next illness.

On a sad note, Abby lost her front tooth last night. It was knocked loose during her hospital stay. We think it was probably injured during her intubation because her lip was pretty bloody afterward. We didn't notice the tooth being loose until we were getting ready to head home! Our hope was that it would stay put and maybe heal up and get stronger, but it wasn't meant to be. So now our 4 year old will remain front-toothless for a while... who knows how long. I've been told preemies tend to get adult teeth later than normal. In the grand scheme of things I know it's not important, but I think it just put me over the edge into feeling rather melancholy today.

On top of that we also found out last night that her J tube is coiled up in her stomach. It probably migrated during all the horrendous coughing and retching over the past 10 days. Fortunately we haven't noticed any distressing reflux symptoms, but that doesn't mean she isn't silently refluxing. In order to protect her lungs and allow her esophagus more time to heal she is scheduled to have a new one placed tomorrow. yuck. I think after this is over we are seriously going to hibernate for a while!

I thought I'd post a few pics from our stay in RM 432

Here's Daddy and Josiah playing in his favorite hiding spot!


Mommy and the munchkins.

J loved his special time with Grandma! We appreciated it too.


Daddy fixed mommy's silly hair. Mommy can't believe she's posting this picture!

Poor Abers, feeling terrible.


J enjoying cake and ice cream for Grandma's mini B-day party! He gave the biggest smiles we had seen all week.

We are all happy to be home together!

RSV Continues...

Days 4, 5, 6 and 7 of Abby's hospitalization brought some unexpected excitement and stress.

Tuesday (day 3) went fairly smoothly, especially after we settled into our new room on the peds floor. We had actually been hopeful to be discharged the next day. HA! Little did we know what was in store for us.


That night Abby's respiratory status gradually spiraled out of control. Early evening I noticed she was occasionally dropping her O2 sats into the high 80's. I watched it for a while until I realized they weren't coming back up. She was miserable with incredible congestion and a painful sounding cough. The nurse put her on some nasal canula O2. As the hours progressed so did her respiratory distress. By 2 am she was struggling to breathe on the non-re breather bag, delivering 6 L of 100% oxygen. This is what she was on in the ER Sunday before they intubated her. So, needless to say I was rather nervous and stressed. Even on this high amount of O2 she was barely keeping her sats at 94!

They drew blood cultures, called the Doc, tried to get IV access (5 attempts!) and got some breathing treatments started. She stayed on the bag until the sun came up and we were able to put her back on the canula at 3 L O2. They started chest PT (firmly patting the chest to loosen her secretions) and continued to suction her frequently. As you can imagine, she loves this part!

Wednesday was more of the same; restlessness, fever, terrible coughing and lots of suctioning. By this point the Pulmonologist had come to see her and determined she also has pneumonia! Probably from an aspiration event during her 1 hour long seizure on Sunday. So now she's on antibiotics every 8 hours.


Thursday- not much change, until that night. Another repeat of Tuesday night where she started dropping her sats and her chest was heaving and retracting with each breath. They had to put her back on the non-re breather bag and there was talk of returning to the ICU. Of course they didn't have any beds available, so we continued to suction and give her the breathing treatments more frequently. And once again, she started to improve when the sun came up. Not sure what it is about night time, but things definitely get worse for her.

Friday was a little more restful. Her fever wasn't as high, and the breathing treatments were starting to thin out her secretions so we could more successfully suction her airway.

Friday led to Saturday, and Saturday to Sunday where we reached our one week mark of being in the hospital. Her O2 requirement was still higher than we would have liked, around 2-3 Liters. She was able to rest more comfortably in between suctioning, breathing treatments, diaper changes, medication and just plain interruptions.

They also brought in a new machine to try on her. It's called a "cough assist" machine. It's rather barbaric looking as they hold a large mask over her nose and mouth while the machine forces bursts of air into her lungs, and then pulls it back out with just as much force. It's supposed to make her cough, and boy does it ever! She gets very worked up and mad during this treatment, leaving both of us winded and exhausted. It's supposed to help her cough up the mucous because she is too weak and unable to do it herself. Whew.

It's been quite a week.

How can she be so sick and be so darn cute!?

Day 3 of RSV

We spent another night in PICU b/c there was no room on the peds floor. It's that time of year, everyone seems to be sick!

Although I appreciated the tender care and compassion of the staff in the PICU when Abby needed it, I definitely felt the heaviness and stress of the atmosphere building today. All the beds were full of very sick children. Two babies on the Oscilator vent, which we vividly remember from Abby's early NICU weeks... not something you would want to witness. Accidentally overhearing tense conversations in our neighbor's room, and watching nurses dash in and out of rooms that are beeping.

Lack of sleep along with the above mentioned was making me a very irritable mommy.

Abby had a rough night last night with plenty of coughing, suctioning, fever and agitation. Despite her junky sounding cough she has been holding her O2 sats above 90 all day. Just as I had predicted after a long night of very little sleep, she finally conked out this morning after a very vigorous suctioning which then produced a vomit! yuck

We are now in our new room on peds, which is nice. She looks like she feels miserable and sounds it too. Right now all we can do is treat symptoms and watch her vitals. Her fever is hanging on so we are trying to keep her comfortable.

It looks like we will go home tomorrow as long as nothing changes or surprises us in the middle of the night. I'm sure we will all be more comfortable at home, and I would feel better being the one in control of her meds, her feeding pump, her nose snot etc!! You moms out there can relate.

Today our nurse explained that RSV tends to peak at around 5-7 days... so we are praying that nothing eventful will occur after we are at home! Please continuing to pray that her body will tolerate the high fevers without losing control and going into another prolonged seizure. That is usually what sends us speeding to the ER.

Thanks for all the encouraging emails, phone calls and prayers lifted up for our girl. I'm always amazed during times such as these what a strong little girl she is. What a blessing to us!

RSV

Abby pictured above with Grazer, a dear and trusted friend.

She started getting sick yesterday morning. We immediately recognized the tell tale signs of an illness as soon as we got her out of her crib... she sneezed and showered me with snot. Her temp was 101.1 so we gave her Tylenol and decided to hibernate here at the house like we normally do when the kids are sick.

Early afternoon she started seizing like she occasionally does with a high fever. As the minutes passed it didn't stop, even with the Diastat (emergency med we use at home). Off to the ER we went, helplessly watching Abby struggle to breathe and trying to do everything possible to keep her airway open while in the car.

Once in the ER they took her straight back, despite the waiting room guards' earnest attempt to have me "take a seat, and fill out the registration forms." She was still struggling to breathe and was still seizing. After finally successfully starting an IV she was given 4 more meds to stop the seizure. Meanwhile her breathing was becoming more and more labored. They tried the mask, the nasal trumpet and then resorted to bagging her. Before we could catch our breath she was sedated and intubated (put on a ventilator).

She spent the night in the PICU to be monitored. Thankfully after only 7 hours she was weaned down on her vent settings and was able to be extubated (taken off the vent) last night! She slept so much better after the tube came out, and so did I.

We found out she does have RSV which was probably the reason for her respiratory distress yesterday during the prolonged seizure. She is still running a fever today and has a horrible sounding cough, but despite it all her vitals are stable and she is able to rest.

As of now (Mon. 3 pm) she is still in PICU but we anticipate moving to the peds floor this evening. Our biggest fear now is that she will develop a pneumonia from the RSV phlegm on top of the likely hood of aspiration during her seizure yesterday. We are waiting for the docs to make rounds and give us report on her chest x-ray this morning.

Check back later for more pics and update.