Thursday, October 31, 2013

Thursday 10/31/13

 Sorry we haven't had many posts lately but we were getting all settled in after bringing Ava home!!! We have been so busy it has been difficult to find time to sleep and going to work and leaving Amber at home with our four kids has been rough on both of us. Poor Ivy has croup and Ava has little Ava problems that take up a large part of our days and nights. She is doing well though and we are all happy to be home. We still have a long road with several doctors appointments up and coming. 
Ava in her favorite sitting spot and Ivy with G.G.

More updates to come more regularly I promise. 

Saturday, October 19, 2013

Friday 10/18/2013 G-tube surgery

Ava had a g-tube (gastrostomy "button") placed today. It is pretty close to her Colostomy site on her belly. They did the surgery laparoscopically through the belly button. They pull the stomach up to the wall of your skin and then stitch it to the wall. Then the hole goes from your skin all the way through to your stomach. So if she were to drink something...it would come out the hole. In the hole is placed a Mic key button. It is a port that stays in place for 3-6 months at a time. We change out the port at home. Then feeding tubing is connected to the port to be able to feed Ava. At first she will be on round the clock feeds. So, when we get home she will still be attached to a pump and an IV pole around the clock, but I am hoping that the feeds can be condensed within a month or so. 

She got out of surgery about 5pm. Ava was a little cold after anesthesia, which is normal, so nurses spent a few hours trying to warm her up. She has had 2 doses of morphine, but otherwise they are trying to control the pain with just tylenol. She will start getting 7mLs into the port at 6am tomorrow, then will go up by 7 every 6 hours until full continuous feeds are met. She's on a bit of oxygen after anesthesia and with the morphine.

I went in to visit Ava before surgery. She had pulled out her NG the night before, and since her feeds had been stopped for surgery, they didn't put it back in. THIS WAS THE FIRST TIME I HAVE SEEN HER FACE WITHOUT TUBES ATTACHED TO IT!    It took NINE, yes NINE attempts to get an IV before surgery. This made me very sad. I grilled the poor newbie training nurse about who was called to place it.  The night IV team tried. A floor nurse tried. Then they decided to wait for the day IV team, who also couldn't get it. Finally they called life flight who wheeled her into the hallway for better light and they got one in her head..which is the worst place for an IV because they go bad the fastest.   The anesthesiologist in surgery told me that the first thing he'd do was to get a new IV after she was knocked out. I told him about the 9 attempts and he told me not to worry-that she wouldn't feel a thing. When he returned her to the floor with the same IV in her head he said that his ego was bruised- I thought that was kind of funny. You KNOW Ava is a hard stick when an anesthesiologist can't even place an IV in her when she's knocked out. When the surgeon called me, she said that the surgery went really fast and that most of the time in the OR was spent trying to get a better IV. Ava was so happy this morning despite not being fed. She loved all the attention of people around her bed. It felt so wrong and like such a betrayal to send such a happy innocent baby off to pain-land...again.

Shaun and I completed the g-tube teaching course this afternoon which is a prerequisite for both parents before going home. They only offer the class on Tuesdays and Fridays and I did not want any more delays from discharge so we crammed it in though it meant not being able to see Ava right when she came back from surgery. Ivy got to come to the class and she was so good. We've already completed the colostomy care teaching. Tomorrow Shaun and I will complete as much of the discharge stuff as we can, including CPR, so there aren't any hang ups later when we are able to be discharged. If there aren't any surprises, we may be able to go home very soon. I am trying to figure out how to involve the boys with discharge and moving so that they are a part of the transition. As hard as it is here.....it will also be very hard to go home and BE home with a whole new life and set of challenges and to spend the winter in a kind of isolation from other people to protect Ava's lungs. 

This is Ava before surgery today. NO TUBES ON HER FACE! 

This one is after surgery when they were trying to warm her up.




Tuesday, October 15, 2013

tuesday 10/15/13

Neener neener neener. I discovered my tongue today. She waas sticking it out at everyone. It's amazing what babies can come up with when they're bored. It's good that her oral aversion is not nearly as bad as it could be. Her issues with eating are more with coordinating the suck/swallow/breathe effort rather than hating the bottle or the food or the texture or anything touching her mouth. 
had to put her in a play suit without feet for jammies because Ava is such a long baby, not abnormally long...just normal-long...which is long compared to other NICU babies. I asked if they'd like the gown type without the feet and the nurse said the feet ones were better. I've been using the gown type for Ivy since I hate stuffing her feet back in jammies and zipping her up when I am half asleep..doing half of it with my eyes shut anyway. 



Monday, October 14, 2013

monday 10/14/13

bath night.  If anyone has any 6-9 or 9-12 month jammies they'd like to donate to Primary Children's, they could use some. 

 
yes, she has dimples- It's freakin' cute!


Friday, October 11, 2013

friday 10/11/2013

Played with Ava with occupational therapy today. It was fun. Ava was a trooper. She started coughing a lot right when we started and she vomited quite a bit and she took a minute to recover. I hope the NJ  is pulled by the time I get there tomorrow. I think it will help the vomiting situation because only one little tube will be holding that sphincter open instead of 2.

  

 
yes, we are smiling in this photo. can't you tell?

 On other fronts: The 2 yr old daughter of a girl I've met in my Tuesday meetings got her heart today. They must have found out last night, because she was in surgery today for the transplant. I'm really happy for her. Another baby had to pass away for this to happen. 

Thursday, October 10, 2013

Thursday 10/10/2013

New doc on today. We have a short term plan, finally, even more aggressive than I anticipated. Ava should be on full feeds by Saturday. So far she is tolerating the feed changes just fine. I thought she would. I am going to try and connect with the surgery fellow tomorrow to see what criteria he would like met in order to be able to schedule Ava for the g-tube surgery. I imagine he'll want her off oxygen, and for her cold symptoms to be improved. She is still pretty congested. She is in a good mood most of the time. She whines when she's bored, but other than that is happy all day. She slept the entire time I was visiting this afternoon, so I went back about bedtime and the nurses made an effort to keep her awake for me since I called to say I was coming. I got about 15 minutes of awake time, then she fell asleep in my arms. It was worth the drive for the 15 minutes.    The clonidine was weaned from every 8 hours to every 12. Her blood pressures are high again (I hate this med!). It has to be weaned super slow because of the affect on blood pressure. I think it was a really pointless drug to prescribe for a heart patient.    I was told today that the nurses no longer hear her heart murmur. I am wondering if she outgrew the second, smaller vsd/hole in her heart that wasn't repaired. I'm not sure. Cardiology was notified of the change. 

for my benefit:
nj 12  ng 17
0100 nj-10 ng-19
0700 nj-8  ng-21.       10/11/13. friday
1300 nj-6  ng-23
1900 nj-4  ng-25
0100 nj-2  ng-27
0700 nj-0.  ng-29    10/12/13.   saturday.  FULL Continuous NG feed!

  Ava is 12 pounds now. 

wednesday 10/9/2013

No progress. Ava pulled out her NG tube right when I showed up today. The nurse put it back down which made Ava gag and cry. Ava is back on oxygen to give her some support while she's getting through the cold. I think about half the NICU unit is in isolation for the cold/rhinovirus. As a result the unit imposed respiratory precautions early this year and children under the age of 14 are not allowed to visit until sometime next spring....so Sam and Will cannot see Ava until discharge. Droplet isolation is the worst because Ava does not get human touch because everyone has to wear gloves AND she does not get to see faces because everyone has to wear a mask. The room will be on isolation as long as ANY of the babies have the virus or symptoms of it. So I am pretty sure Ava will be on isolation for the rest of her time in the NICU. We need to get her feeds into her stomach from the NJ tube but no doctor wants to make changes while she has a cold. They are extremely cautious with Ava, maybe too much so. There's a new doctor on tomorrow so I'm hoping we can start making some movement soon. Ava is off the morphine. The clonidine is still being weaned. We are having to go super slow with it because her blood pressure shoots up if it's weaned too fast. We don't even have a g-tube surgery date or even ballpark so really, we cannot even see the light at the end of the tunnel yet. I'm really tired of Primary children's raising my baby. I feel like her discharge will feel like an adoption from an orphanage. 

On other fronts: Our whole family is showing signs of PTSD associated with the adjustments. We are barely holding it together. Even Sam was crying for baby Ava and had a very emotional day at pre-kindgergarten on Monday. They are showing a lot of signs of stress in their behavior. The boys are regularly waking up in the middle of the night and Shaun and I just can't sleep. Shaun is at risk for being furlowed since he works for the government. Pray THAT doesn't happen. THe support group I go to on Tuesdays is just plain depressing. Parents are talking about which organs might be useful for donation when their child passes, another is waiting hopeful for a heart transplant. We all laughed at the discomfort of others when they complain about something "trivial" in our presense. One girl said she gave her friends the liberty of saying "Thank goodness we're not the Johnsons." It's all relative.
Encouragement sounds like a broken record or at the very least a meaningless cliche. 

HOWEVER! I was encouraged today be the kindness of a stranger. Sweet lady in Oklahoma sent Ava a magnificent handmade quilt and card. LOVE IT! Pictured here. 

  at preschool.
Sam has been dying to do his hair "spikey" for as long as I can remember. He finally did it all by himself and even hairsprayed it up. I think he did a good job. No one helped him. He was so excited to show his friends at school. He kept feeling the top to make sure it was still "spikey" hehehe.  So his hair has pretty much been a disaster since this day because he wants to do it himself. 




Wednesday, October 2, 2013

wednesday 10/2/2013

Ava has Rhinovirus. Fancy-Shmancy word for a cold..but because it is in the NICU we have an isolation crackdown. So her little 4 baby bed space is on droplet isolation...gowns, gloves, AND masks. For reference the VRE precautions were contact precautions..this is worse. I feel bad for the other families in our section because it was our fault. The boys had a cold a week ago or so and I probably somehow brought it to her. She has been coughing...and puking when she coughs. When I came in this afternoon from a NICU lunch meeting Ava's nurse was at lunch and Ava was lying in her own puke, kinda sad, though understandable. The covering nurse hadn't noticed because the other babies were all beeping and dinging. I threw out her bedding and gave her a bath. Not the quality time I wanted with her, but was glad to be able to do it.   I asked the nurse how they know to test Ava again  to be able to get off precautions..and she said she didn't know because she had never had a baby with rhinovirus before. Apparently Ava is the only baby who's ever had siblings with a cold before-note sarcasm. I didn't bring them in with a cold either. Though I am sad for the other babies who are at risk, I am glad that Ava got a cold while still in the hospital so we can see how she deals with it. That way our first experience wouldn't be a shocker at home. At least it's not RSV. Beware folks-the hospital/nurses are saying that RSV is hitting early this year. Keep your 0-2 year olds safe. 

Ava pulled out her NJ tube 2 or 3 more times. Now her hands are gloved up again. This makes me very sad because she spends most of her day twisting her hands around each other and chewing on her fists. It is also not good for the development of her hands. 

In the meeting I met another mom and dad who's VACTERL baby has been here about 2 weeks AND a mom of another baby and this mom actually had VACTERL. The baby had something completely unrelated. That was a nice lunch.

I didn't take one of Ava today..so here's one of Ivy, little Maestro. She loved this little piano.


tuesday 10/01/2013

I got to the hospital during rounds which is always nice, because I have all the experts in one spot to ask questions of. The theme for today was to sloooow everything down. Basically stop trying so hard to get out of the hospital and to put that out of my mind. I was understanding-but annoyed.    I refused consent for the g-tube surgery and dialatiion monday, to which I received "knuckles" from the attending. Since I told them the night before that I had no intention of signing consent, they didn't make her NPO and didn't have to start an IV, so I saved Ava a little agony.  The doctor did mention today that she would eventually need a g-tube, when we got her feeds sorted out The heart surgery and meds afterward REALLY goofed up her whole feeding regimine. The occupational therapist also thinks it will take Ava a really long time to learn to eat. She may not ever take a bottle and may go straight to solid foods and sippy cups. I spoke with another mother in my rainbow kids meeting today and she took her daughter home with an NG for 9 months until she learned to eat and avoided the g-tube surgery all together. I am kind of leaning this way. (Rainbow kids is a special "club" that is by invitation only for parents of kids with complex disorders. I feel a lot more normal in these meetings than in other NICU ones where we've been here longer than anyone else in the room by many months.) 

Ava's heart rythm indicates a right bundle branch block, sometimes abbreviated RBBB. This shows up as a wide QRS complex on the EKG. I read about it in research papers until about 4am last night. It is common in 60-100% of tetrology of Fallot cases, ESPECIALLY in those where the doctor had to repair the VSD (hole) by cutting into the right ventricle as opposed to getting to it from the right atrium..away from the heart conduction system. The remodeling of the heart or formation of scar tissue after surgery may have triggered it. It may or may not go away. It's just something we'll have to watch and will probably assure that we'll get some monitoring equipment when we go home.

Tuesday, October 1, 2013

monday 9/30/2013

I got a call from NICU saying that Ava had a heart arrhythmia. I went to the hospital and got there at the same time as the cardiologist. They were doing a 12 lead EKG and drew some blood and started an IV in her head. Ava was a happy camper despite being poked at. She was happy to have so many people to look at. All of her labs were beautiful. Doctor decided the rhythm was nothing to worry about and is something she can and will live with.

I don't think I ever explained the two tubes in the nose. One is the NJ where most of her food is going into the small intestine. The other is the NG Which is getting a 1ml increase in food every 12 hours to help expand the stomach back to where it was before heart surgery. This increaase is taking forever! She is on continuous feeds. After all the food is switched over to th NG, the NJ will be removed and we will then attempt to condense feeds so they are not around the clock.   She pulled out both of these tubes the night of these pictures and had to have the NJ placed in radiology with contrast dye.