friday 8/16/2013

12:00pm: Ava is having a good day. She spiked a temp of 102 due to the inflammatory response from surgery. It's coming down just fine with tylenol. She will get tylenol for 48 hours after surgery which is standard protocol. kinda funny side story here....Yesterday the admitting nurse was kind of running around with his head cut off trying to get everything done before the next shift got there. He was joking about having to give the "life saving tylenol" right then. He had what looked like a pill and some gel in a napkin. I finally figured out what he was doing when he opened up her diaper and started looking around. I said "uhhhhh, is that a suppository? She doesn't have an anus." And we all had a good laugh after that. The nurse was pretty embarrassed. So they decided to hold the tylenol rather than give it through the NG tube, where she could throw it up after anesthesia. So, that's probably why she spiked the temp. 

She will have one of her IVs taken out today, though we're having a little debate about which one. I think they should take out the old one, the one that is too small to give blood through, but the Dr.s ordered that the new/big one on the other side of the neck be taken out. I asked the nurse to talk to the NP about it again. We'll see. 

The fentanyl (narcotic) is stopped and she is just getting morphine and ativan now. She is breathing over the ventillator really well so they will probably extubate her this afternoon. 

We haven't seen any heart arrythmias either-yay. The heart likes it's new found freedom and pressures. 

8pm Ava is extubated. She can have her pacifier back but is too out-of-it to care. She is breathing on her own, though she is breathing pretty fast. She is on a high flow nasal cannula at 15 liters with just a little bit of oxygen. If she keeps working this hard to breathe they'll probably switch her to the CPAP tonight. They said that the right side of the lungs is having a harder time expanding-probably because of her previous sicknesses and chronic lung disease. She is getting ativan and morphine for pain now, as well as the tylenol to keep the temperature down. Her blood pressure is on the high side but they are thinking the morphine may help that. we'll see. If not they'll bump up one of the heart meds. One of the neck IVs has been removed as well as the arterial line that went bad. Her drainage output from the chest tubes is low so those will probably get pulled out tomorrow. Thank goodness because one of the drains is the size of a slurpee straw! and they say the drains are probably more painful than the chest incision. We'll probably see several lines get pulled tomorrow. 

thursday 8/15/2013 heart surgery day

Today Ava has the complete repair of her tetrology of fallot. We spent the morning singing Christmas songs and trying to forget about hunger. Ava is a slightly more challenging case because she is on the small side, has a colostomy (infection risk), has recently been sick, is weaker from being in the NICU her whole life, and is a near impossible IV stick. On the upside I understand that the incisions of babies with less fat, like Ava, heel better/faster and another "plus" is at she is on room air AND is bigger compared to some who have to have surgery.  Dr. Phillip Burch is the surgeon today and Dr. Evans is the anesthesiologist. The first thing they will do is sedate her and give her some fluid so the anesthesiologist can try to find placement points for her arterial line and a good central line for getting blood and fluid boluses. She will probably get blood either during or after surgery and the IV has to be bigger than the one she currently has. He may have to do a "cut down" to place new lines. They just called and told me they didn't have to do a cut down to get any lines in-yay. 

Dr. Burch started about 12:10. She will be on bypass within the next 2 hours. This is where the aorta is clamped so the heart is stopped. The blood is cooled and sent to a machine which oxygenates the blood and then sends it to back to the body, "bypassing" the lungs. She will probably be on bypass for 70-90 minutes total. 

Pray for:

steady hands and appropriate judgement calls by physicians and staff

short bypass period so as to affect the lungs the least

that the tricuspid valve will not have to be touched

that the pulmonary valve will not have to be cut

that the heart easily restarts after bypass

ability to go to recovery with a closed chest rather than an open one

no bleeding or swelling

free from infection post surgery

sinus rhythm beating after surgery and into recovery

that Ava will be easily extubated and require little oxygen supplementation

that Ava will be comfortable with little to no pain

peace and, ultimately, God's will

1:50pm Ava is on complete bypass now, and they are beginning to repair the heart.

4:00pm Ava is off bypass now. They said they should be done in about 2 hours.

5:45pm Just spoke with Dr. Burch. Ava is headed out. He had to dissect quite a lot of extra muscle from around the pulmonary artery that was making it so tight/closed off. Her large vsd hole was repaired with a dacron patch. There is a small leak accross the repair, but should seal off as scar tissue forms around the patch. He couldn't access the hole from the right atrium well so he had to go right through the right ventricle- he repaired that incision with a little bit of the pericardium. The pericardium is the sac that surrounds the heart. He also closed up the hole that was in the right atrium. He could not see the small vsd below the large one in the ventricle, though, so that one we'll expect to close up as she grows. Her pressures accross the pulmonary artery were about 14-15. Normal is 6-10. His goal was less than 30. HOORAY! -They didn't have to transect the pulmonary valve-so that is intact. He also said the tricuspid valve is fine too. They were able to restart the heart just fine and thus far the rhythms are fine. They were able to close the chest, so she didn't have to go to the floor with an open wound.                     One thing we didn't know about is that one of her pulmonary veins is in the wrong spot. Normally you have two pulmonary veins from each lobe of the lung returning oxygenated blood to the left side of the heart which then sends it to the rest of the body. But in Ava's case, one of her veins coming off the right lobe is connected to the right side of the heart..so it kind of gets double oxygenated. It will only be an issue if it negatively affects the pressures in the right side of the heart by sending too much blood in there along with blood coming from the rest of the body and causes the right side to get thicker. If this happens she could have another surgery around age 4-5.

All the updates today will be on this same posting. So keep rechecking this same post if you like. 

monday 8/11/2013

Surgery date is this Thursday at 1pm. She will have a complete repair for the tetrology of fallot (again, pronounced "fa-LOW"). She is now up to full feeds at 73mL every 3 hours and it is fortified a little more today to make it a few calories more. That is the only change for today. She had music therapy again this morning, where they held her, sang to her and play the guitar, which I think is just so cool.

saturday 8/10/2013

Ava has even more toys in her crib today. Music therapy came and sang to her for 30 minutes yesterday and child life came and played with her the day before that.  Last night and today the nurses have put her back on a little bit of flow, but just room air, from the nasal cannula. She was just working a little harder to keep her oxygen saturations in the high 80's/low 90's. A bunch of labs were drawn and cardiology was consulted. Cardiology said that they wanted her acceptable oxygen range to be 87% to 95% and they did not want a nasal cannula on her so there wasn't a risk of "flooding the lungs" which I don't totally understand. It sounded like they would try to do surgery later this week but it is hard to set anything in stone until the workweek starts monday. She had a desaturation into the low 70's tonight while I was holding her and I talked to the NP on shift about making sure that phenylephrine was available at the bedside so that a nurse could give it fast if need be. This was something Dr. Yost had made sure was available while he was on shift a few weeks ago, but it has since not been a concern. The NP said they'd discuss it in rounds tomorrow. Ava also threw up her vitamins today. We don't know why. She has been on them for 4 days. If she throws up again, I am going to play the mommy card, if I have to, and refuse vitamins..even a divided dose, because I don't want anything to stand in the way of her surgery coming up. All she needs is another pneumonia to put surgery off for another month. 

wednesday 8/7/2013

Still no word on a scheduled heart surgery. All I was told is that they decided to schedule her and that she was ready for surgery. I was told that it would likely be scheduled sometime in the next 2 weeks. I should know by the end of the week (key word "should" but I've learned that nothing goes as it "should" in the NICU.)  I learned that her feed increases were halted because she was putting out too much stool, and they were thinking that was a symptom of withdrawal from the pain meds. Her stool output was better today so they may increase feeds tomorrow. They told me that they weren't too eager to wean the morphine and ativan if she were headed right back to surgery. So, who knows what will happen with that. Both of our primary day nurses are back from vacation this week, so that's a relief.

tuesday 8/6/2013

Uneventful. No changes for Ava. They didn't even increase feeds which annoyed me a little. They said that she was doing so well they didn't want to disturb anything...but by golly, she's still hungry! And she's still not gaining weight..and they already took away the TPN (IV nutrition) yesterday. grrrr. I played with her for a couple hours and then snuggled her to sleep. She woke up when I put her down and cried and cried. I discovered her ipad is on a different network so she can actually watch streaming video on hers. She mostly sucked on her hand and fingers while I was there. I think it is such a relief for her when I show up and remove the little socks from her hands. She has to stay socked up so she doesn't pull her NG tube out of her nose. I just watch her though. Her head control is really improving. Her physical development and control is still much like a newborn though. I read her the clifford books I brought. She smiled at a blue bird in one book but not at me. I also brought in her bumbo chair and a stack of blankets with different textures. Her giant crib has so much storage space under it that I am getting a little carried away. I also requested that she get a mobile on her crib. She has a referral in for music therapy and child life therapy. These are two different teams of people that do different things with kids or babies. Tomorrow we should get an idea about heart surgery scheduling. It's exciting and make-me-puke scary at the same time.

sunday 8/4/13

Gosh - I typed a nice long post yesterday..then left my ipad at the hospital before I had posted it. When I got the ipad back today the draft was deleted. How discouraging. 

Ava is rockin' it in the NICU world. She is a little baby doll. She is on room air. Her feeds are up to 53 mLs of breastmilk every 3 hours as of tonight. Something like 73 mLs will be considered a full feed. Until then she is supplemented with artificial nutrition through the veins. I imagine sometime early this week they will start supplementing the feeds again with high calorie formula because she really isn't gaining weight. Her little heart is just working so hard that she uses up all her calories. Today she got moved to a big girl crib...and I mean "big!" It's a crib you'd see on the other units with one and two year olds. Though it takes up a ton of space in her new corner (she was moved again-a sixth time) it provides much more space for therapy in the bed. The boppy pillow fits for tummy time. The bumbo will fit and other fun ideas. She is still on antibiotics. The 8th will be day 21. She still is being weaned from ativan and morphine. She will be discussed in clinical conference for the cardiology group on Wednesday. Maybe they will schedule surgery that day, who knows. I met her second main nurse practitioner today. Both of them seem very experienced. 

On other fronts, we moved to the apartment upstairs. It is 3-4 times the size of the basement for 10 dollars more per day. They say money can't buy happiness but I can honestly say that we are much happier with more space (especially the boys). I had gone on another search for something cheaper but could not find something that didn't require a year lease, deposit and the works, or that was anywhere near the hospital.  It is KEY that we stay close to the hospital, though this is the most expensive part of town, because we are constantly shuffling people between the apartment and the hospital AND Ivy still won't take a bottle so I frequently have to run home to nurse her. Also sometimes I only have an hour or so with Ava and I don't want to waste my hour in the car. In the basement apartment (475 sq ft) I slept in the living room, and any more than two people eating, we had to eat out on the patio. So it is absolutely refreshing to sleep (not to mention pump breastmilk) in my own room and to be able to feed our whole family and grandparents within steps of the dishwasher-woohoo yes a dishwasher..and garbage disposal! There is also a spiral staircase in the bedroom that goes up to a rooftop terrace that overlooks the city. It's pretty amazing. 

I've found a preschool for the boys. The next closest public school provides preschool. The only thing that makes me nervous is that it is the school that buses a lot of inner city kids to it. According to my neighbor its in a "pretty rough neighborhood." So, I am going to ask if there's another school option, but if not, we'll give it a go. The school building looks brand new. The playground is pretty pathetic, but as long as there are other kids to play with, it shouldn't be a big deal for Sam and William.