friday 5/31/2013

Hooray- Ava's dialation procedure was on time today, so she didn't have to starve allll day-only half the night. She got right into the OR at 7:30 and the doctor called me about 8:45. I was so tired that I couldn't even think of any questions though. He said it went well. Again they were able to extubate her before she was back in the NICU (so she didn't have to come back on the ventilator). She was given one dose of morphine for discomfort and was happy again when her food was resumed. They replaced the 5 french NG tube with an 8 French which was a nice big step. The NG tube is the tube that goes from her nose to her stomach And is what her breastmilk is given through. She still cannot swallow because the NG tube takes up the whole width of the esophagus, so the repoggle tube (sucking out the spit) is still in place so she doesn't suffocate on her own secretions. The doctor said he would do 4 dialations, one each week, and then take a break for a few weeks. I was kind of hoping to be home by the end of July, But I am starting to doubt that lately. This was the second of the 4 dialations. She was a happy,sweet, lethargic baby when I visited. She cries every time I put her down and leave-which just kills me, I hate it!      Note the green NG as opposed to the previous orange one.

thursday 5/30/2013

uneventful. Ava is completely off the Clonadine now. She has the same number of tremors with the same intensity with or without the Clonadine, so it was just better to get rid of the pointless med. Her oxygen has been weaned down to a flow rate of 0.1. She is on room air, which is 21% oxygen-and has been for some time. The nurse practitioner from integrative medicine came and met with Ava and I and she taught me infant massage with the Chinese medicine principals. She also left a bottle of coconut oil just for Ava. They will not let us use any essential oils however, in case anyone was wondering.

monday 5/27/2013

What a lovely day with my sweet Ava. She was awake for about 2 hours chatting with me. i gave her a baby massage with lavender lotion, and then sat her up in different positions to look around. Then she fell asleep spread eagle on my chest and periodically opened her eyes to see if I was still there. I talked to the nurse practitioner about weaning her oxygen because she does just fine even when its not in her nose. She may be rid of it tomorrow, but i wonder if they'll keep the cannula in place so they can give her a burst of oxygen when she desats. The doctor finally got on board with me, and we are going to start weaning clonadine tomorrow. It is a pretty harsh med and i don't think it has helped the tremors at all.

          corney picture i took of myself.

friday 5/24/2013

Nothing new. I held her for about 5 minutes before all her cares were due. Then they called for the ostomy nurse to do some teaching with me which took up the rest of my time. bummer. She cries each time I put her down :(. She is a happy camper otherwise, and hardly ever cries. Ivy, on the other hand, has been keeping me up between 10pm and 2-3am blah.

thursday 5/23/2013

ava was a cute, alert baby again. she was awake so much today. when she did want to nap or close her eyes she loved to bury her face between me and my arm. the nicu at primary childrens is rampant with VRE colonization, and it has been found on surfaces all over the nicu...so now the entire unit is in isolation. the nurses are not thrilled because it means gowning and gloving up between each baby instead of just washing their hands. its really time consuming. apparently this will be the case until it is eradicated which could take months.   Ava's urine output has been low for the last 24 hours. we don't know why, but hopefully it is nothing. she got a fluid bolus while I was there and may get another later. if those don't work she'll get a diuretic to make her pee. Ava is 6 pounds 6 ounces so far. today is the first day I've seen her look in a mirror. she enjoyed it I think. Thank you-Penny, Bridgett, Paige, and Julia Tocheri for driving down for the day to watch the 3 kiddos! Much appreciated!

tuesday 5/21/2013

good day for sweet Ava. Vicky Van Sickle is here until tomorrow watching the other 3 kiddos so i got to hold and talk to Ava for 4-5 hours today total. i was here when the surgeons did their rounds which never happens.  yesterday the surgeons said that before the dilation they were only able to fit a guide wire through her anastomosis (surgical site) in the esophagus. now she has a 5 French feeding tube in which is a step up from the 4 French PiCC line that was being modified to be a feeding tube. the opening is still so tiny that swallowing her own secretions is not possible, so she is stuck with the replogle (sucking tube that gags her) in the back of her throat. i anticipate that she will have another.4 weeks with it before she will be allowed to eat. she will have at least 3-4 dilations on a weekly basis before eating or swallowing spit may be possible. swallowing her own spit is the most important because that is what is blocking off the airway. the genitourinary scope went well also. girls with Cloaca can be born with 2 vaginas and 2 uteruses etc.. but, she is lucky to only have one and most things seem to be connected well as far as cloaca goes. dr. says she has a good prognosis for reconstructive surgery later....after we get past heart surgery. she is such an alert little girl when she is awake I just love it. 

Ava's Esophageal Dilation 5/20/2013

Ava had a few delays in her dilation surgery today and did not get into surgery until close to 430PM. Everything went as well as it could and this is the first of many weekly dilations. The doctors were able to get a larger feeding tube in and hopefully that will keep the esophagus open a little bit until the next procedure. It was a bit stressful on our poor little girl because she was not able to eat for basically the whole day. She is resting now and hopefully getting a full belly. Thank you for the prayers.

Ava Today 5/19/2013 SURGERY Tomorrow

Today Amber and I went to see Ava at Primary Children's and were pleased to see that she had done quite well today. Tomorrow she will be having the first Esophageal  Dilation surgery. This will be one of possibly many because the doctors have to dilate a little at a time. The bad thing about this process is that she will have to be sedated and intubated for the procedure which we don't like very much because of the extra tubes and the full sedation.. its actually pretty horrifying. Please pray that this goes off without a hitch and that she recovers from the anesthesia and procedure quickly.

friday 5/17/2013

another pleasant day for Ava. she looks great. i just dread having to take the next step because i know it will be more precarious. i spoke with the surgeon who will do the dialation, which has been moved again...to Monday. then i spoke with 2 different urologists. they are going to scope the vaginal region on Monday as well, since she will be under general anesthesia already. They just want to get an idea of the orientation of structures in the genital region, though reconstructive surgery won't be for about a year. the nurse last night said she's never taken care of a baby who's had a dialation, apparently its very rare at this age.

 she is about 5lbs 15 ounces.she smiled 3 times today. It's the first time i have seen her smile.

wednesday 5/15/2013

uneventful day. i got hold baby Ava for a whopping 15 minutes. the child life center that watched all 3 kids yesterday wouldn't watch Ivy today, but one of the volunteers happened to be certified to hold babies in the NICU so she said she could watch Ivy in the waiting room while i was in with ava. Anyway, it all left me short on time.  she was so dang cute today. she was wide awake, alert, and sucking on her pacifier. she was intent on staring at the toys hanging above her bed. Occupational therapy is kind of limited since she is still on a warming bed rather than a regular crib. she has a mirror too, but no place to hang it. maybe i can find a small one at walmart. the picture isn't very good because she is in my arms and it was getting dark outside.

tuesday 5/14/2013

got to hold Ava for about 40 minutes. the child life center on the 3rd floor will watch my kids for exactly 45 minutes, so its a tad stressful to get all 3 over to the hospital for a measly 45 minutes..but it is DEFINITELY better than nothing. she just slept like a rock for the whole 40 minutes. the chaplain volunteers stopped by and prayed for her. they rescheduled Ava's esophagus dialation 3 times today...so as of now it is scheduled for may 23rd, but i wouldn't be surprised if it were moved again. she still has the tremors occasioinally. i'm not really sure the clonadine is doing much.

monday 5/13/13

no real new news today. the nurse practitioner is calling her heart condition tetrology of fallot. i did not think she had this, and hadn't heard it before, and i think it got exaggerated when nurses pass on report and that is not really what it is. will clarify it in the morning.  in rounds the doctors talked about dialating the esophagus this week but did not set a day. it is a bit early as this is not usually done until at least after 6 weeks post surgery and we are not quite there yet. yesterday the dr told me that they rarely see babies with an esophagus as narrow as Ava's. it is so small that they couldn't even get the smallest pediatric NG tube down her throat but instead had to use PICC line tubing...which is quite a bit smaller than regular Iv tubing. i got to hold her for about 2 hours today since a nice lady who i met at the ronald mcdonald house 2 weeks ago offered to watch my other kids. that was nerve racking since she really is a total stranger to me. the boys had fun at her house. turns out i went to high school with her husband's youngest twin siblings.    she has a sock on her hand because she's starting to pull at the tubes.   amber

5/12/2013 Mother's Day

Today Amber and I, as well as most of the Birch clan, got to go and visit Ava.. She was doing pretty well today, a lot of thick secretions that kept the nurses working hard to keep her replogle from clogging up. Amber got to hold Ava again and she seemed to be doing better than she had the past week. The doctors are contemplating doing the esophageal dilation sooner than later because they think that her esophagus has narrowed to much and that is why she can't swallow the secretions. We wish she could be better instantly but this process seems like it will take a while. We just have to go one day at a time and pray for speedy recoveries and praise the nurses for being on the ball and always on top of Ava's care. I am so happy that one of us (Amber) can be there in Salt Lake City the whole time. The boys and Ivy are having a good time with their mommy and I miss them so much during the week. Makes the weekends all the more special... I find myself appreciating my family more and more every week we are separated. Keep praying for us, I know God is listening. Happy Mother's Day Amber, I love you.



Amber and Ava 5/12/2013



Amber and Ava 5/11/2013

Amber and Ava 5/11/13

Ava 5/11/2013



Ava 5/12/2013

 

5/11/2013 pretty good day

Just a generally good day. tremors are reduced, presumably due to the clonadine. she has only been bagged with oxygen once in 24 hours, so that's good too. her oral (NG) feeds were increased gradually today to 43 mL which is a full feed for her. hematocrit was overshot and was 50 instead of the 40 they were aiming for but its fine. Ava was a super alert little baby today-it s nice. she was definitely working hard to breathe and i am not sure what else we can do for that. not much happens on the weekends it seems, we just watch and wait until monday.   the boys got to see Ava for the first time today. they did awesome. i video'd each of them. they asked lots of questions about all the tubes and we explained it all in a matter-of-fact way.

    

first blood transfusion 5/10/2013

today cardiology, who round on Ava frequently, decided they want her hematocrit higher. they thought that if Ava had more blood that it would increase her oxygen carrying capacity and that she might come out of her desaturation spells better and faster. i don't know that it helped, but it was a flawless transfusion, thankfully. The clonadine that was started yesterday may be helping. her tremors were significantly reduced today. i held her around 3pm today and went back to the hospital again at about midnight to hold her. she did well. in the afternoon she was very alert and looking around which was nice. we rarely see that because usually she is so exhausted from just breathing.  she only had to be "bagged" (assisted breathing) twice today which is good. last night it happened several times. doctors are discussing doing the dilation procedure on her esophagus soon, but we'll see..usually that doesn't happen until at least 6 weeks after surgery for safety reasons. 

Ava Today 5/9/2013

Today Ava has been doing well, she is on antibiotics and hopefully in a few weeks she will be back to where she was before. We are hoping that when the infection she has is done she will be on a quick road to recovery and with the esophageal dilation (maybe in 2 weeks, depending on her recovery) we hope that she will begin to feed normally without any more spells. Right now she has a feeding tube that will keep her nutrition up and digestive system going as well as the constant suction to make sure her airway is clear. Please pray for a speedy recovery and strength.

From Amber: 

After another neurology consult it was decided that Ava's tremors are not seizures, so she will be weaned from the phenobarbitol medication starting tomorrow and she will get a new drug, clonadine/clonazepam starting tonight. i am not crazy about this new addition, but the Nurse practitioner assured me that NICU babies seem to like the med. For Ava it will be used as a neuromuscular relaxing agent. she was also prescribed Ativan/Lorazepam as needed for tremors...i don't think it did diddly earlier today. she had several desaturating episodes today that were solved with aggressive suctioning and a boost of oxygen. the nurse has to be right there because she goes from 99%oxygen to 40% oxygen in less than 1 minute. cardiology saw Ava tonight and decided she was doing fine from a cardiology standpoint, so they will just continue to monitor. 

after doing some reading i have some suspicions about her spinal cord. I'm not sure if she had a spinal ultrasound done. i would hope so, but it would have been done before i got here. a tethered spinal cord is common with kids with her condition. 

Ava 5/9/2013



 

Ava today...some more not so great news 5/7/2013

Yesterday Ava had another Code Blue, it took them 4 minutes to resuscitate her with compressions and the whole shebang( this was posted on the 5/6/13 post, but here is some more information). They ended up putting a replogle tube back in her throat to get rid of the fluids that are causing her to stop breathing. The doctors had talked and decided that today they would do a esophageal dilation on her at 9am... That didn't happen. She started to go hypothermic early this morning... her body temp crashed three times and they had to get her on a manual heater to keep her body warmed up. They are doing some blood chemistry on her to see what's going on, but they are assuming that she has some kind of infection. They cancelled the dilation procedure and are going to put her on antibiotics for 1-2 weeks. She had a chest X-ray and they were going to start a Picc line on her, but her veins are so shot they are going to have to place the Picc with the aid of an ultrasound tomorrow. The doctors may also put her nasogastric feeding tube back in at the same time. Seems like we are back at the start and a little worse for the wear. The one sliver of good news out of all of this is that even though Ava was down for 4 minutes, her levels of Oxygen in her blood didn't get low enough to cause any brain damage. I am praying that no other Codes occur. Please keep up the prayers, every bit of prayer blesses our family.

Code Blue 5/6/13

This morning I decided that this cold of mine wasn't going to let me go to work. After sleeping in about an hour we got a call from the nurse practitioner at Primary. Ava had another code blue that took them 4 minutes to get her back. Three doctors covering Ava's care are going to talk about solutions for her continuous desat spells and hopefully find a solution quickly. Please God help my daughter get through this.

Ava today. Scary happenings 5/5/2013

Today amber and the boys came home. She has some homework that she needs to get done and a final to do by Tuesday. The boys came home with Grammy and Papa Peck. They will be heading back on Wednesday. As we were getting ready to leave today at about 630 we get a phone call from the nurse practitioner saying Ava is ok but she had a code blue about 10 minutes ago. We asked what happened and they said that she had eaten an hour before and was doing great. None of the trembling spells she was having seemed to have occurred then she had a spell of desat that she didn't come out of. The nurse tried to give her oxygen, which didn't work, then she had to bag her (manual breathing with a bag valve mask) which did not work and then they had to do CPR. Finally she came back. Needless to say it was a really long ride back... Keep up the prayers folks. Amber will be there Wednesday.

Desat and ugh! 5/4/2013

Ava is doing ok today. She has had a rough time with feedings and those feedings interfering with her airway after the fact. She seems to be refluxing after feeds and aspirating it causing episodes of decreased oxygen levels (desat) and irregular heart rhythms. They are very scary and happen very frequently. Hope she gets past this soon. Keep up the prayers.

-Shaun

Ava Today the first of May 2013

To let all know. Ava is doing better today and the doctors have taken her off of the constant suction. She has appointments to try to get her eating on her own and is now in IV feeding for at least a couple of days. She has been doing better and is gaining weight. On other fronts, Amber has been trying to find an apartment down there that is reasonable, which may not be the case. Keep us in your prayers.

 -Shaun