Thursday 8/29/2013

Fir some reason it's been one of those days that I can only live 15 minutes at a time. Baby was up a little more than usual last night. Boys were up by 7:50...wayy to early for me. We got to the preschool practice day on time HORAY-that's kind of a big deal for me. I tried to leave 30 minutes early for a school that is 3 miles away and we made it just in time. It was a fun orientation to pre-kindergarten. During recess the NP called me and told me that Ava was having a rough day. She was breathing pretty hard and her PICC Line had come out. Unfortunately these are things that seem to happen when her primary nurses aren't there. The NP called to get permission for another PICC IV. Then cardiology decided to see how she does without the milrinone- so they decided they could get away without the PICC and just put in a peripheral IV...Which took 4 tries to get, it's in her foot. They had to bump up the high flow to 4L but they reduced the oxygen to 60 % to help protect her lungs. They added the nitric oxygen, which sort of replaces the effectiveness of the milrinone.   

After preschool orientation we went back home to pack for camping. Then I took my mom to the shuttle back to idaho falls. I ran back home and grabbed my breastmilk, fed Ivy again and headed to a Jiffy lube....which took 2 hours to get to my car, but it needed to be done before the camping trip. I deviated from the GPS advice on the way up to the hospital and drove straight through the University campus. Baaaad idea on game days. I've never seen so many red shirts. It took about 30 minutes to go a few miles. I planned to just cram an hour in with Ava even if it meant leaving even later for camping. Ava was crying when I got there. Apparently she has been fussy all day. I asked the nurse a bunch of questions as usual, and got some very vague answers one of which was followed by ..."do you know if they plan on doing a heart surgery soon?" SERIOUSLY! Did you REALLY just ask me that question!?!? You have been taking care of my baby for 12 hours today and somehow managed to miss the giant incision down her chest!  That pretty much has set me off. I feel like Ava has been neglected today...especially since she lost her PICC line. The baby she is paired with gets oral feeds every 3 hours..which means he is scheduled to be held at least every 3 hours. Ava does not have that luxury. Now at nearly 8pm I am ranting in the Ronald McDonald room feeling guilty that my family hasn't eaten dinner and Ivy is probably starving by now. I still need to grab a few things at the grocery store, get gas, then drive the 2-3 hours to find the camping spot I've never driven to...without cell service. Like I said...I can only survive today if I think about what I have to do in the next 15 minutes.    END NASTY POST. See ya saturday..perhaps my mood will have improved. 

Wednesday 8/28/2013

Ava is having a very good day. I'm going to list a bunch of medical jargon for my own benefit. Her milrinone has been weaned in half and should come off tomorrow. If she doesn't tolerate that wean well, then she will start nitric oxide inhaled through her nasal cannula at 2L. If she doesn't need the nitric then she can downgrade to a regular nasal cannula at 1L, as long as it stays on 100% oxygen. If she has to have nitric- she would be eventually weaned to another med, because patients can't go home on nitric. Ava will probably have 100% oxygen delivered for several months until pulmonary hypertension is resolved. The milrinone is the last med going through her neo-PICC IV line in her neck, so once that is successfully weaned she may be able to have that line pulled. It is just one more thing that could get infected, so it will be nice when it's gone. It is nice to have too....but it's been in for a month. It seems we need to pull it while we are still "ahead.". Ava's BNP today was 260, down from 600-something, so that's good. She will get another BNP lab draw tomorrow to see if the milrinone wean affected it at all. We are currently weaning the clonadine..which was the step-down drug from the presidex that is used in the cardiac ICU. After the clonadine, we will wean the morphine and lastly, the ativan. The NP said that opioids are easier to wean than benzodiazapines which is why ativan will be last. She cited all the women in the 70's and 80's who were addicted to valium. The feeds are still continuous but the NP said she'd start condensing them after the milrinone is weaned. Ava is still really sweaty, and cardiology is wondering if that is just her baseline. She has been sweating just about any tape/dressing off her face and neck.

Ava is having a grand time sucking on her fingers. She crams as many as she can in her mouth at once. The child life specialist brought her little socks that she had sewn/glued little rattles on. She just fell asleep for the first time today while Great-Grandma Van Sickle from Texas is holding her. 

I almost forgot! Ava giggled today! a soft little laugh, over and over. I've never heard her do that. I was giving her a massage on her legs and when I put pressure on part of her thigh she laughed. She didn't look at me though. I enjoyed it, but abandoned it pretty quickly since the therapist told me a long time ago that therapeutic massage should not tickle. I wish she would smile at me. I feel like she is really behind with social cues and I hope she can catch up fast because it will help us bond. 

other fronts:

Shaun is working on ripping out the carpet on our main floor. Respiratory therapy said that is one of the best things we can do for Ava wi her chronic lung disease. We will look at putting down some hardwood since it should match what is already in the bedrooms. 

I went to pre-kindergarten parent orientation today. Their sweet bilingual teacher is 6months pregnant with twins. She plans on returning to work after 6 weeks of leave...She will be soooo tired! I'm excited about their class. There is a lot of diversity in their class, which will be good for the boys. 

Finding joy in the simple things: I'm so happy to have found honey apple baby lotion for Ava. I was really getting sick of the lavender. I probably won't ever be able to use it again because it will just remind me of the NICU. Ava will probably have an aversion to it as well......which means I am probably shooting myself in the foot by using a new lotion I really like. 

monday 8/26/2013

Ava smiled for me today! Yay! She hasn't done that since before she got sick in early July. It just made my day. Ava was just sweating buckets last night, so much so that pretty much everything that was taped down, came up. So this morning Ava had to go back to radiology to have another NG tube placed in her nose since the other one slipped right out. Her picc line was also retaped for the 100th time, but this time it was taped halfway up her head in her hair. She is still on 3 or 4 liters of high flow, i forget which. They decided not to wean it today because they were weaning the milrinone, which is the heart med and they need to be able to see if there will be any side affects from that weaning. So far it's been good. Ava is still considered to have congestive heart failure because the heart is working harder to pump appropriately. It will continue to do so until the right ventricle remodels and gets smaller. It grew abnormally large when it had to pump harder with the hole in the heart and the smaller than normal outflow tract. Her BNP lab value today was over 600. The high-normal is 100. This lab value measures stress on the heart. Cardiology said that they do expect it to be elevated after heart surgery and we'll just keep watching to make sure it trends downward. Ava seems to be more comfortable lately with the pain med regimen. The occupational therapist stopped by again today and said we'd start feeding therapy again when she is weaned to at least 2 liters.  Little Julio came by for a visit to the NICU today. I thought "you know you've been here for a LONG time when babies that Ava was paired with, who were discharged, are coming BACK to visit their nurses." oh brother. He was such a big boy too. Has that much time REALLY passed!? In other news, the baby in the bed next to Ava also has VACTERL, but not nearly as severe because he doesn't have the esophagus problems. 

saturday 8/24/2013

Ava was uncomfortable this afternoon and until 11pm when I left. She slept maybe 20 minutes all afternoon. The nurse gave her extra morphine doses which didn't seem to help. She had three labs drawn (which, incidentally, required 3 heel sticks by the new guy grrr). All her labs were normal. They were wondering if she might be getting an ear infection. I kind of doubt that but they'll check her ears again tomorrow. She has been weaned to 4Liters on the nasal cannula and is still on the 30% oxygen. The added oxygen will be used indefinitely until the pulmonary hypertension no longer a concern. It is being used more a a "drug" rather than something to keep her oxygen levels up-which she is capable of doing on her own. As a drug it is a pulmonary vasodialtor- it helps the vessels in the lungs expand so the blood can easily pick up oxygen. 

friday 8/23/2013

Ava is extubated- YAY! They took her off the ventilator at 4pm this afternoon. She really did well. Her lungs have a lot of mucus that she is going to need to clear by coughing. She transitioned to the high flow nasal cannula well. Her pain is under control, it seems, and so she is getting better rest and not sweating as much. After she was extubated she was crying this soft little hoarse cry. Her little throat must be soo sore, poor thing.   Shaun was with her all morning, and she had a rough morning. She threw up 3 times!  They were thinking that the breathing tube was gagging her.  I have requested that we switch her feeds from continuous back to intervals/bolus feeds so that her NG tube can be open to air between feeds. At least with the CPAP she seemed to get a lot of air in her belly making her uncomfortable, it's not as bad with the high flow. She is on 5L of flow and about 30% of oxygen. The goal is to get her back to room air. She needs lots of healing and recovery so that she can be as optimal as possible going into this next surgery (g-tube placement). 

thursday 8/22/2013

Today was fairly stable for Ava. Her work of breathing increased in a sense.  Her heart rate is high and her respiratory rate was really high. The ventilator is set at 12 breaths per minute, but she is breathing between 60 and 80 breaths per minute. A big problem with this, aside from the energy it takes, is that her breaths are very shallow. She could not be extubated because, at these rates, she wouldn't be able to inflate that damaged lung. She needs to take slow deep breaths. They were thinking that she may have been in pain so they adjusted the morphine and made it more frequent. I think they are tackling the withdrawals better because she is no longer sweating profusely or having periods of crying. The night nurse tonight says that she looks a lot more comfortable. There is a possibility of extubation tomorrow, but I am not counting on it. They increased her feeds again and she is still on continuous feeds so she never feels hunger- which is probably a blessing for now. The room was obnoxious again with 6 babies, 6 nurses, surgical teams and lots of family members. In that tiny little room I overheard the entire conversation about the baby next to us. (So much for HIPPA when you're 2 feet from someone else's doctor). That baby has a couple vacterl issues too, not nearly as severe as Ava though. The mom was having a hard time yesterday. We're kind of in the "newbie" room with new moms and new babies. Our primary nurse assured me that we'd be moved because, like I said yesterday, they wouldn't be able to have her huge crib in the middle of the room...and she shouldn't have to put up with such chaos while we are just sitting here waiting for the next surgery. 

wednesday 8/21/2013

Ava is still intubated with the ventilator. She hates it. She was transferred back the the NICU today, thank goodness. Her orders were tuned upside-down again to the NICU's liking- and mine too for that matter. She saturates very well on just room air, but I guess on her latest echocardiogram, there was evidence of pulmonary hypertension so now cardiology ordered that she be on 30% oxygen even though her saturations are 100% (which is usually an unacceptable number for babies getting oxygen because it can damage the eyes). Ava had a bit of a hard time with the move today. I think there was a lag in medications, because she was extremely sweaty and cried a lot when she got to the NICU. The sweating is probably from withdrawals. The NP said that she may need to be weaned from medications with methadone when we get to the weaning point. After her pain and withdrawals are under control, they will think about extubation. She really is doing well considering what she's been through.  We were put in the most awful spot in the NICU..in a really busy room, in the middle of 2 babies..there are 6 babies in the room. It is just chaos most of the time. I'm hoping we'll be able to move once she can upgrade to her big girl crib. I'm hoping that a big girl crib will be too impractical for the middle of such a busy room and I REALLY want a window spot- if we are going to have to be sitting on our behinds staring at a wall for the next 8 weeks, I'd rather watch the construction across the street. 

Monday 8/19/2013

Ava has two main challenges today. One is that her chest x-ray looks worse than yesterday and she has a ton of mucus in her lungs. The other is that she is having to put up with symptoms of withdrawal. She had a spontaneous trial on the ventilator, which is  where they turn off the rate to make sure that she will breathe on her own. She will breathe on her own just fine, but she will not take deep enough breaths to keep her right lung inflated. She'll have another spontaneous breathing trial sometime tonight. Even if she's not ready to be extubated, the trials are good for her to use her own breathing muscles and remember how to breathe. Ava was on a steady dose of ativan and morphine in the NICU  and she was stopped pretty much cold turkey down here. she has "as needed" doses available now but she doesn't really get them until she has the signs of withdrawal. This has been a source of contention between me and staff. We hope she'll be extubated tomorrow, but I wouldn't be surprised if she isn't.     Her heart echo looked good today. She has a small leak across the patch and still has some blood flow through the smaller hole in her heart that they couldn't find when they were doing surgery. These leaks aren't causing problems.   Her white blood cell count is up, but her temperature is just fine. She may have a little cold virus. If she spikes a temperature, then they'll suspect other bacterial infection. I'm not going to update every tiny little medical thing now because I don't want to explain all the medical jargon. So, this is all the big stuff.

I finally registered the boys for preschool. I'm extremely irritated that I have to pay so much more than other people for public preschool just because I live in non-title one boundary lines. But the elementary school on this street doesn't even offer pre-kindergarten any more because everyone up here sends their kids to private preschools or ones with extended daycare. So, I have to pay so much to go to a rich-kid preschool that doesn't exist. If I lived pretty much anywhere else in the city, we'd probably pay about 50 bucks a month, but now I'm stuck with 200 a month to go to the exact same low income school. They gave me a discount too, it should have been 450 a month. The boys are desperate to interact with some other kids though, and they need some stability and predictability, so I think it will be worth it. 

sunday 8/18/2013

9:00am Ava had a good night. Her chest x-ray this morning looked good. The ventilator is effectively inflating the right lung. They think they will try to extubate tomorrow. They will probably pull the pacer wires, IV that is in the chest, and the 2 chest tubes today. Her surgery antibiotic is finished and she has been restarted on amoxacillin which is preventative for urinary tract infections. Her feeds are increased again. She is up to 9mls per hour or so and will increase every 4 hours by a tiny amount today. 

(If you haven't noticed, I update each days post throughout the day, rather than adding a bunch of little individual posts about events occuring in the same day. So if you check our blog frequently during the day refer to the same days' post. If you like, you could even check the previous days' because I often post things late at night)

saturday 8/17/2013

8:00am Dr called this morning. They had to re-intubate Ava, which is kind of a disappointment. She wasn't breathing well enough on the CPAP. Her right lung is collapsed and the Dr. said that she probably is just weak from surgery and from being a NICU baby and isn't able to inflate that lobe on her own. He hopes that she will just be intubated for another day. 

  He also mentioned that she has rib anomalies and vertebral anomalies which I am a little frustrated that no one has mentioned to me until now. He said he'll show us on the x-ray. These anomalies are common in VACTERL babies and I don't know the implications of them yet.

3:00 pm: spoke with Dr. Buonaito (pronounced Bon-a-Uto, phonetically written here for my own benefit). Ava has been given some mucomist through the breathing tube to try and help break up some of the mucus in her lungs. She'll get another chest x-ray in the morning to see if the rigt lung looks better. Her feeds have been started. Breastmilk is given continuously through her NG tube, starting at 5mls an hour and going up by 2mls every 4 hours to a maximum of 19mls per hour. That will probably help her feel better. It looks like they want to keep the lines and drains in today because of her limitted IV access, in case she needs blood or something. I learned that the drains (chest tubes) are pulled after the pacer wires and atrial IV line because sometimes those can bleed a little, and the chest tube drains away that blood. He showed me the xrays of her ribs and spine. It looks like her ribs on the right are just a little close together, but not problematic. Her vertebre look like they developed fine but the spine as a whole is a little curved, so she potentially has a mild scoliosis. We'll go to specialists for this down the road, after we are done with all the life threatening issues. 

8:00pm: nurse "slammed" some meds down her NG (this is my take on it), including oral potassium. She almost immediately puked it up. I've been pretty angry since then. Why the HECK would you order oral meds all at once for a pt who essentially has an empty stomach, who has a history of puking up her multivitamins, who only has an NG NOT an NJ, and who has a strong history of aspirating. Even moreso, why the HECK would you give the meds so dang fast. IF we've determined that her little belly can only handle a fraction of a feed why do they think it can handle all that extra volume at once (anatomically- she also has a small stomach) It should have been diluted and given over a long length of time in the first place, ESPECIALLY for the first administratn. If this gives her aspiration pneumonia, I will be so angry. The doctor didn't cancel the oral med, but instead cut back on her breastmilk to 3cc per hour. After she puked, the nurse gave her a sponge bath and changed out her linens. It was obviously very painful for Ava. The look on her face was heartbreaking, as was the silent intubated cry. I don't know about you, but I pre-medicate ADULTS before rolling them around for a bed bath after surgery. I would expect the same for my baby with big fat chest tubes! I'm not a happy camper tonight, and can't wait to get back to the NICU where routines were predictable, breastmilk is preserved, and where the nurses are more invested in my baby. 

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.