wednesday 7/31/2013

Hardly any changes. Her oxygen needs are the same. She is still on 3 Liters on the high flow nasal cannula with oxygen needs ranging from 21-40%. Her morphine and versed doses are the same. Yesterday they started feeds at 10mL every 3 hours..which is a third of a tablespoon, so hardly anything, but it seems to be moving through. Today they added one mL at each feed, so she was up to 13mL by 5pm, so she should be up to 19mL by the time they round again tomorrow and who knows if it will be increased a tiny bit more. Since food is moving through they also added propranolol orally (NG) to help her blood pressure. Since they sent baby Vanessa packin' hehehe, a spot opened up for Ava on the long term care team (I don't know if that's really true, but she was gone today and we've been buddied with her for a while). The long term care team is a group of about 6 babies who are "in for the long haul"..whatever that may be. It seems that babies qualify after about 3 months of age because a lot of the micropreemies are sent home after roughly 3 months. So our little team seems to have mostly babies with congenital (genetic) disorders that are rather complex. The advantages are that Ava will have one of the same 2 nurse practitioners 6 days a week, which is great for consistency. Also she gets access to some of the more limited therapy toys. Today Karine snatched Ava her own ipad. I was far more excited than Ava was. Shaun is downloading family pictures and family home videos for Ava to watch. I've requested that they remove the disney movies. She also has pandora and other baby aps. She cannot, however, facetime through it because of privacy concerns (HIPPA violations). The disadvantage of the long term care team is mostly psychological for me, in that I have to accept how complex Ava's issues are, and that I cannot even guess when we'll get to go home. I tried to gauge from the nurse what we have ahead, and of course she was very vague. So I told her I was asking because I was wondering if I should bother signing up the boys for pre-kindergarten here, and without a beat she said, "oh yes, sign them up for pre-kindergarten." Sigh The preschool in the PUBLIC school on this road is 225 a month per kid-blah. The YMCA was 400/mo. I've got to scour the city.  William needs some speech therapy, so we'll have to figure out how to weasel that in. I'm exploring swimming lessons, ice skating, and indoor soccer too because the boys just go NUTSO in this tiny apartment. They are literally climbing up the walls (barefoot in the doorways) and bouncing off the walls (William realized that the bedroom door doesn't really latch so he thinks he's really strong when he runs across the living room into the door to make it fly open.) 

Monday 7/29/13

Not much happenin' today, despite it being Monday an' all. Morphine weaned by a tiny tiny bit, probably just enough to keep me at bay. High flow is down to 3 Liters and her oxygen needs range from room air (21%) to about 40%. She may get started on NG feeds tomorrow. I gave her a baby massage and we practiced some head control and I tried to get her to kick her feet but it's pretty hard to balance her in just the right spot on the boppy to have straight legs and her bed is angled backward toward the wall so I can't do much with her in the bed. We had a good time though. I bought her and Ivy a couple Bumbo chairs today through the classifieds. (Turns out it is far more convenient and cheaper (saved 55 dollars) to drive to someones front door and buy things than to haul 3 little kiddos into a store.)

Sunday 7/28/2013

Woohoo. She's down to the high flow nasal cannula now. She's getting 4 liters of flow and is on room air or just above. I was surprised that her versed and morphine doses hadn't been touched (adjusted) in days so I requested a wean on at least one of them, so the NP weaned the morphine frequency. The arterial line in her left wrist was removed, which is good from an infection standpoint, but now she has to get poked for blood instead of being able to draw it from that line. Her residual out of the NG has steadily decreased so she should be able to start feeds as soon as tomorrow possibly. Her little colostomy bag had green bile in it as well as gas so it appears things are moving in there, at least a little. We discovered that she is next in line to join the group of long term babies which means we get a little more consistency with NP's AND first dibs on cool therapy toys like an ipad attached to her bed. Ava has pretty complex medical issues right now, comparatively..and it apparent by the group of babies we are rooming with, that we are the long term folks. We are the last of the mohicans that are still stuck with the VRE transmission precautions. As new babies are admitted they are put in "clean" rooms and they don't have to gown up.  She gave me the CUTEST smile today!! I'm just in awe and in love!!

saturday 7/27/2013

Ava is improving a little bit each day. She is still on the CPAP though the settings are weaned a tiny bit. A new doctor is on shift now. He happens to be the medical director, so I'm excited to work with him for the next couple weeks. Because Ava was too unstable to get a lumbar puncture (spinal tap) when the sepsis was discovered, the doctor decided to keep her on antibiotics for 21 days instead of 10. This will cover any bacterial meningitis IF that occurred with the sepsis. So today was day 9 of 21. She still has the septic illeus (bowels aren't moving anything through)...so still no food for her. Ava is about 9lbs 14 oz now, so she is still gaining weight on the TPN (artificial IV nutrition).

friday 7/26/2013

Not much new on the Ava front today. She is still on the CPAP, and they are slowly weaning the settings. For instance, she is completely off the nitric oxide now. I am hoping that after the chest x-ray in the morning, that they will see improvement and be able to switch her to the high flow nasal cannula again. The CPAP fills her belly with so much air, that they have to suck out every few hours. She just doesn't like it much so she is more agitated and needs more versed and morphine so she can rest. They switched the versed back to "scheduled" because they were having to give too many "as needed" doses anyway. They started feeds a day or so ago and had to stop after one feed of 10mls because her bowels haven't woken up yet. She just seems agitated as the morphine is weaned. She did the same thing with the last big infection. She'll be happier when she can get off of it completely and get some food in her belly. 

wednesday 7/24/2013

Ava is looking good today. She was struggling a bit to breathe this morning so they switched her from the high flow nasal cannula to CPAP which puts pressure into her lungs to help keep them expanded. She doesn't like it much because she gets a lot of air in her belly and a lot of air blows out her mouth. I think she has more secretions with the CPAP too, BUT it's necessary right now. This evening they were working on weaning the nitric oxide that goes in with the oxygen and wean the number of breaths per minute the CPAP was giving. I didn't think she tolerated that weaning well. I'm guessing they had to bump something up after I left. I hate leaving by the way, especially when she is awake looking for someone to "talk" to. She is such an alert little baby, and for that I am super thankful. She is on day 6 of the 10 days of antibiotics since the negative culture. After the antibiotics and after her lungs are doing much better, we will schedule heart surgery-scary! I'm not sure when we'll start feeds again, but they don't seem real eager yet. She still doesn't seem to be moving things through to her colostomy bag yet. At least the bag should have some air in it. Oh I go the cutest pictures today. She doesn't smile often lately so I was pretty proud to capture it. 

TThis darn CPAP constantly blows bubbles out of my mouth. 

tuesday 7/23/2013

Ava has had a nice restful day today. She is completely off the vasopressin. The NICU fellow (a doctor in training after residency is called a "fellow") decided to keep her on the ventilator over night. However, Dr. , the attending, is on again tonight and he discovered that she was still intubated and didn't know why. He told the staff to extubate her. So they did at 11 pm (then called to tell me which made my heart jump since I don't usually get late night NICU calls). The nurse said Ava cried after extubation, which helped break up and clear some of the mucus in her lungs. So now she is on the high flow nasal cannula. We "pushed" to skip the CPAP and go straight to the high flow because she hates the CPAP set up so much. The nurse said she is doing great on the high flow, and now the challenge will be to wean the morphine, of which she has become kind of tolerant. Morphine levels, when intubated, weren't as much of an issue because if she were to stop breathing the machine takes over. She no longer has that safety net, so she can't be as sedated as she was. She might be a bit uncomfortable as the morphine is weaned.   Nurses heard bowel sounds today which means her gut is "waking up" and they may be able to start tiny amounts of breast milk again. Ava still looks "off" - kind of pale and swollen, but she has definitely improved. She is waking up occasionally and looking for stimulation. 

monday 7/22/2013

10 am. Ava is doing better. She is being switched back to the conventional ventilator because she was fighting the oscillator with her own breathing. The only way to keep her on the oscillator would be to sedate her even harder which they didn't want to do. Her oxygen needs are at 50% down from the 70% last night and the vasopressin is weaned from 1.3 down to 0.3 which means her heart isn't needing as much support. The nurse thinks they might need to place another IV line today...which is a near impossible feat. 

12:30am (so technically it's tuesday..but I'm still on Monday time :). Ava is having a great night. She is still heavily sedated, that will likely be the last thing to wean. They've turned down the ventilator settings becuse she is taking so many of her own breaths. Her oxygen settings on the ventilator are at 50%. She was at 60-70% for much of today. She needs to be 30-40% on the ventilator to get to a CPAP or high flow nasal cannula. We also still need to wean the pressure going into the lungs. This will be determined by how the lungs look on chest x-ray. Right now her lungs need help staying open with that pressure, otherwise they collapse, in a sense. I hope her poor little throat isn't too sore after she is extubated. Her blood pressure has been high-but-good as the vasopressin has been weaned to 0.1. Her urine output is good, which is always nice to hear too. She is back to sweating quite a bit again, which we expect with her heart condition. I am thinking..at this point, that she will have a solid 10 days of intense antibiotic treatment, and then she will have heart surgery soon after that. Judging from rumors from rounds this morning, which I barely missed, it doesn't sound like they will wait 4-6 or 6-8 weeks before the full repair, especially with this second tet spell.  I do know now, though, that she will not get her g-tube before heart surgery. THat would be a minimum of 6 weeks after heart surgery. The cardiologist said that is the textbook answer.  Dr. Yost said I could have an honorary medical degree after this hehehe. 

 Isn't this picture amazing. Oh man it made me so happy. I think she is just over 9lbs now. I can't wait to hold her again! I haven't held her since the 15th.

sunday 7/21/2013 tet spell..again..geeez

Today was a replay of events on Tuesday. Ava was struggling to keep her oxygen saturations up even on 100% oxygen with the conventional ventilator. She was switched back to the oscillator which didn't help much. All the events were the same. She had another tet spell, meaning her heart lacked the pressures to get the blood to the lungs to pick up oxygen.  She was given all the same meds as Tuesday, only much faster because the doctor made sure we had them at the bedside as soon as her oxygen started dropping. She had another cardiac echo, which showed no changes. She had an x-ray of the lungs and another of the abdomen because of such abdominal distention. The chest x-ray was very hazy, so we got another of her laying on her side  because the doctor thought it might be fluid around the lungs. After the lateral chest x-ray it was determined that the haziness was either infection or collapsed alveoli (little sacs in the lungs that provide oxygen exchange with the blood). This was the better of the scenarios because she avoided a painful chest tube required to drain fluid from the lungs.  The central  IV line in the leg that was pulled the other day had a positive blood culture for bacteria, and it is thought that Ava may have additional infection that might not be covered by the current antibiotics, so gentamycin was added back in-it was previously removed because it was thought it was not needed. As of 10pm, she was holding her oxygen saturations up well, while given 70% oxygen on the oscillator- which is quite a bit. They were already having to wean the vasopressin again, because her blood pressure was too dang high. A floor nurse (the best IV nurse in the unit) was able to get an arterial line in, which was amazing since we had just pulled the one placed by the anesthesiologist doc. The one thing we don't have is a line big enough to give blood through, if that becomes necessary. Gosh I hope not. She is heavily sedated with morphine and versed otherwise she kind of fights the oscillator. Shaun and I felt helpless..again. The nurse at the bed next to Ava's prayed for us which was awesome, cause we were kind of falling apart. Ava has her own two nurses tonight, hopefully tomorrow too. Shaun has been here for 12 days. We're hoping she is doing well enough for him to go to work on Tuesday. Bob got back from Africa today and was a tired trooper as he watched the 3 kiddos for us. Blah, and another day passes.

saturday 7/20/2013

Sweet Ava is still completely out of it, thankfully. I don't want her to be conscious of any of this. I wish they could knock me out for a week with morphine too, so I could just wake up when she's better.  Today she was switched from the oscillator back to a conventional ventilator which she likes better because she can throw in her own breaths whenever she needs. She is completely off the vasopressin and vecuronium so she is no longer paralyzed. They pulled her cook line which was the IV central line placed by surgery in her right thigh. They also pulled her arterial line placed by a cardiac anesthesiologist in her right armpit. This one bummed me out a little because they could draw blood from this line, and now they will have to start poking her foot again for lab draws. Also this line constantly and accurately monitored her blood pressure, which will now have to be done manually.I haven't seen her open her eyes but she does move her limbs a bit, which is good because it helps the swelling to go down when she can circulate more blood out to her limbs. She's peed like a champ for days, so her kidneys are doing their job..so they also pulled the foley (pee) catheter out today too. The more lines she has in her the higher the risk for infection so they are trying to get rid of things as soon as possible. Her blood pressure has been high, like 120/66, but when she is given her morphine it comes down again. She is still on scheduled morphine and versed to keep her pretty sedated. If her blood pressure is high when the morphine is weaned (later) they may have to consider an IV BP med. They gave her propranolol (for BP) through her NG tube with 10mL of breastmilk, but she didn't absorb any of it so they made her NPO again (nothing by mouth). So, she is still on the artificial IV nutrition (TPN). She either still has a septic illeus or the morphine is preventing her stomach/bowels from moving the food along.  The cardiologist told me they'd do the full heart repair in 4-6 weeks, but another cardiologist told Dr. Yost, the attending, that we'd be looking at 6-8 weeks before doing the repair. I still have no idea about the g-tube surgery. I think cardiology would like us to wait until after hte heart surgery for the g-tube, but I'm just not sure. I hope to be out of Salt Lake City by the end of October...before the snow hits the roads.

thursday 7/18/2013

I don't have a whole lot of energy or will-power for that matter to be real specific in the blog today, so brief update. Ava is stable. She got a PICC Line in the jugular vein in the right side of her neck today. She is getting so many meds, fluids, and blood today that they needed more IV access options. I think she has 8 or 9 IV pumps being used. Around 9pm she dumped a ton of urine and all of a sudden her heart rate dropped to the 60's. Shaun called me frantically and I ran to the hospital. Her heart rate came up a bit and the attending was relatively unconcerned. He said to get her off the vasopressin completely. Her chest x-ray looked unchanged. Meds and antibiotics were adjusted a bit today. The lab cultured Klebsiella  (spell?) bacteria from her endotrachial tube, but she is already on antibiotics to cover that. She had blood transfusions yesterday and today. Cardiology wants to keep her hematocrit above 40. She is still sedated but not as paralyzed. Oscillator setting remain pretty much unchanged. Her oxygen needs range anywhere from 40% to 100% (remember that room air is 21%).

wednesday 7/17/2013

Today Ava is more stable. The goal has been to gently wean her from the vasopressin (which is the med that is keeping her blood pressure up to keep pressure on the heart), and wean vecuronium which is the paralyzing agent. she is still getting morphine and ativan scheduled to keep her pretty sedated. So as of 11pm her vasopressin had been weaned from 1.3 to 0.8. The nurse had been able to drop it by 0.1 about every 30 minutes, so that was good. She was still mostly paralyzed but she was starting to breathe on her own "on top of" the oscillator machine. Yesterday when she tried to breathe over the machine her oxygen saturations dropped, but today she held her oxygen saturation up when she was doing this, so that was good. Her echocardiogram looked "the same" according to the nurse practitioner, which was not the kind of specific information that I sat until 11pm in the NICU to find out. This morning her urine output was zero and Shaun noticed that her belly was really hard. The NP pulled the foley catheter out and OUT came the urine...with LOTS of sediment...often indicative of a urinary tract infection (UTI).  Cultures show that she has gram negative rods (type of bacteria) infecting her lungs, typical of aspiration pneumonia (caused by food going into the lungs) and she has coag negative staph bacteria infecting the blood. This second type is all over the skin of healthy people but is very toxic in the blood system of tiny babies. She is on vancomycin, zosyn, and gentamycin antibiotics.

Last night surgery came up and surgically placed a central line through her right saphenous vein in her thigh. Then surgical anesthesia tried to find an artery for an arterial line, but couldn't so surgery came back and placed one in her right armpit. For both of these procedures they have to actually dissect the skin away to find the veins. If you think you're a tough IV stick-talk to AVA! Surgery was pretty sweet in that they deliberately put the art line in her armpit so she'd have a scar there instead of across her wrist. The arterial line continuously monitors her blood pressure. It makes it possible to more accurately wean the vasopressin and they can draw blood from it so that her poor little heel isn't being poked every hour. Last night she has vital signs done every 10 minutes for the entire shift. I'm not sure how often it was today.  We also started TPN today for artificial nutrition. 

So a likely scenario preceding yesterdays events could be that a UTI (or something else) caused sepsis (blood infection). Sepsis (very bad) caused her to slow the emptying of her GI system (stomach and intestines). The "full" stomach/intestines caused her wretching and eventual vomiting after feeds- which the nurses on her new hospital unit (the infant unit) didn't know wasn't normal for her. The vomiting caused her to get stomach contents into her lungs causing another infection, called aspiration pneumonia. It also took the infant unit at least an hour to get a chest x ray because they had to take her down to radiology whereas in the NICU they do it right at the bedside and can do it fast..so that delayed her at least an hour-not cool with sepsis. The stress and trauma on her body caused the capillaries that carry blood to get "leaky" allowing more fluid to leak into the tissues of her body (making her look swollen) causing her blood pressure to drop. Her poor little heart needs that pressure to push against the abnormally narrow passage that the blood has to get past to get to the lungs to pick up oxygen...which is why her oxygen started to drop yesterday and the solution was to bring her blood pressure up and to breathe for her.

I got the impression today that we'd still be aiming to get a g-tube before heart surgery, but I can't tell exactly what the plan is. 

Sorry about all the parentheses. Its hard to write for everyone who understands the medical terminology as well as all those who don't.

tuesday 7/16/2013 part two "tet spell"

What a rotten, rotten day. After a good cry and some fall to your knees praying, I ran to the neighbors and asked the wife if she could watch my kids. I met Shaun at the hospital where they were putting Ava on an oscillator which delivers multiple breaths per minute. It seemed to do the trick and her oxygen percentages hung out around in the 80's.  (Mini-oxygen lesson here to help understand the rest: You want your oxygen generally between 92 and 99% in the NICU. In the 80's is tolerable for a time to figure out what to do to assist breathing. In the 70's you start gathering some help and working quite a bit faster. Below 60% means that organs are not perfusing..they aren't getting enough oxygen. The body preferentially gives oxygen to the brain first) So Ava was in respiratory failure today. When she was doing ok on the oscillator in the 80's, Shaun and I went to eat. When I came back Ava was working to breath over the oscillator and her oxygen was decreasing into the 70's. The team was assembled. She was given more morphine to depress her own breathing so the machine could do it for her, the morphine wasn't cutting it so they paralyzed her completedly. From one o'clock until three o'clock we watched her plummet. Her oxygen was in the 20's at one point but would hardly go over 60% despite everything being done.The oscilator was adjusted and nitrous oxide was added to the breathing. They tried just bagging her mannually wit 100% oxygen (room air is 21%). The intubatiion tube was moved around (I think she's had about 5 or 6 x-rays today). Finally after the echocardiogram, the cardiology doctor came to see her. He asked a bunch of questions and suggested a few vasopressor drugs to help shunt blood back to the heart and then he squeezed her belly really hard to put lots of pressure in her chest cavity to shunt blood to the heart-that immediately brought her oxygen right up to the high 80's. So then one person had to keep her knees to her chest-hard enough to keep her feet purple to get the oxygen up. Then the vasopressor drugs seemed to kick in. So now, at 6pm, her knees are still to her chest-though not as hard and her oxygen is back in the high 90's. She is still paralyzed and will remain so until she is more stable. She will have her own nurse, possibly 2 tonight. So, this was a "tet" spell, likely precipitated by a terrible lung infection (pneumonia) which is probably due to her spitting up after feeds. Her g-tube surgery is cancelled, and that won't even be a topic for discussion for months. She is going to be transferred to the cardiac unit who is better capable of dealing with these tet spells. (A tet spell refers to the oxygen drop that is due to the condition she has called Tetrology of Fallot.) The heart doctor says that they will avoid the complete open heart surgery if at all possible until 4-6 weeks after the lung infection has healed and she is back on room air. If her heart continues to have problems then cardiology may consider a BT shunt which is just a temporary fix until her lungs are healthy enough for open heart bypass surgery. We do NOT want another spell like today. It was life threatening, and the cardiologist made sure I knew that. 

Tuesday 7/16/2013

Ava is not doing great today. I got a call early this morning telling me that about 0530 that her wretching after her feeds included some emesis (food from her belly). Her oxygen needs have gone way up. They are suspecting an infection. Her abdomen is distended, confirmed by x-ray. Chest X-ray gives suspicion of aspiration pneumonia, but it is hard to differentiate from the chronic lung disease that occurred with the last big infection. She is being put back on the CPAP machine and has been moved back to the NICU. ...crud, just got a call from Shaun, who is at the hospital. They just intubated her (put a tube down her throat to breathe for her). We really wanted to avoid that because of her fragile esophagus. They drew blood and urine cultures to check for sepsis but apparently about 50% of the time the cultures don't grow anything even when there is sepsis. please pray for her. This will be a rough week.  thanks

sunday 7/14/2013

I don't know what I picked up, but I am suspecting the week old tuna casserole I ate Saturday night was the culprit. A 2 hour drive from our family reunion took me over 4 hours. Granted there were some other variables, but the massive exodus of fluids from my body greatly affected the process too.  So My grand plans of taking pictures as Ivy met Ava, and vice versa, for the first time were thwarted. Instead I sat on the back patio in the heat in my pants and sweatshirt trying to calm the chills. Ava was transferred to the infant unit today. From what I understand her siblings can be in the room on this unit. If, if, if..because of her isolation status, they won't let her siblings visit, then I will request that we go back to the NICU. My first experience with the infant unit was 15 minutes ago as I tried to get ahold of the nurse for Ava. After multiple transfers it wasn't going to happen unless someone ran her down, and I didn't  want to request that of a busy nurse for some trivial baby conversation.    Oh gosh, I feel like junk, i am going to leave it at that. sorry. 

wednesday 7/10/2013

The NP told me today that they'd probably schedule g-tube surgery next week. Apparently right after I left though, surgery came by and said they'd wait and see when heart surgery would be scheduled  and THEN they'd schedule theirs. So Ava is on the list for their clinical conference meeting for cardiology, which takes place Wednesdays. I guess I'll have a better idea come Wednesday.   Ava has been feeling a little hungry lately because although she is getting the same number of calories, she is getting a smaller volume than she is used to. She should get used to the adjustment soon. 

Look at all that fuzz!

tuesday 7/9/2013

Ava was sweet today. Again, very diaphoretic. She gets new blankets every 3 hours because they are soaked with sweat. The therapist showed me baby massage and we practiced together. Then, she practiced sucking with the binky-trainer. It's a pacifier with a tube through the end and a syringe of breastmilk on the other end. The therapist let me do it and she said that this was the best Ava had ever done. She took the whole 3 mls, 1/10th of a ml at a time. I tried to go back at her 9pm feeding to do it again but the therapist forgot to write that I could do it in the orders and the nurse didn't feel comfortable with me doing it wihtout it written.  Her tube feeding was changed again so that she gets less fluid but the same number of calories. When babies hearts are struggling (or adults for that matter) they have a fluid restriction. So because Ava shows signs of congestive heart failure she is on a fluid restriction. She has tetrology of  (pronounced "Fa-Low"), a term I never thought I'd see again after nursing school. Cardiology spoke with me yesterday and told me she would have heart surgery before discharge. He said it would be best to have the G-tube surgery first because they don't want her to have surgery soon after heart surgery and we don't want to take her home with an NG tube down her nose. So, In reality we could probably go home faster if I was willing to take her home with the NG tube - but I'm not. It's just too easy to pull out by her..or her 3 siblings, and I think she will swallow better with it out. 

monday 7/8/2013

Well I'm finaly back in my teeny little apartment after spending 10 lovely days in Island park. Which included, 3 colds (3 kids), an asthma attack (Sam), a double ear infection (Sam), and some wierd viral,fever, chills thing for me....but we had fun and played lost of Games, OK-just many games of Settlers. 

I saw Ava today as soon as we got into town. Thankfully my mom came with me. I might as well give an update by systems:

Respiratory:Ava is off oxygen for the most part. She is put back on here and there for short periods of time when she is struggling a bit. Some nurses still suctiion her mouth when she coughs up a lot of mucus, but I think she can handle these secretions on her own, but her non-primary nurses (especially at night) are too scared to watch her try. 

Gastrointestinal: Her first "feeding" did not go well. The therapist does not even feel comfortable giving her a swallow study. She has a weak suck. It takes her many tries to get a swallow down.  The therapist believes that she  may aspirate a bit when eating and she just plain..doesn't want to...according to the therapist-I haven't seen it. This means she developed some oral aversion, which is rotten and will be a LONG road. So now the therapist just works on sucking practice by putting drops of breast milk on the end of a pacifier. For this reason we are looking at having a G-tube surgically placed into the stomach which would replace the function of the NG tube which feeds her through her nose. They already looked at her structures in anticipation of this surgery. She has a small stomach and twisted intestines-neither of which are causing problems apparently. Surgery has just been waiting for me to get back for a consult.  Currently she is getting 2 parts breastmilk to 1 part high calorie formula. She is also supplemented with liquid protein. This is all because she is struggling to gain weight -a common problem in VACTERL kids. 

Genitourinary system: A VCUG was done today to see if urine "refluxes" back up in to the kidneys. I do not know results of this yet. ALSO it appears a fistula may have created itself in the intestines, because stool has been coming out of the common channel/vaginal opening now. She has a mucus plug that is supposed to prevent this to help prevent urinary tract infections..because the urethra is in the same channel. I don't think anything new will be done about this for a long time. She will just be on amoxacillin antibiotics for the next 1-2 years until it is repaired to prevent urinary tract infections. 

Cardiac system: This is the system giving us fits right now. It appears heart surgery has been moved up to 4-6 months of age instead of 9-12 months of age, unless she has a legitimate "tet" spell, then surgery will be scheduled right away. The tet spell is an indicaton of blood shunting the wrong way in a heart and the baby will be fussy, the oxygen will drop, and the heart sounds will change...all within seconds so the nurse has to be fast with the stethoscope to check the heart when the oxygen starts dropping. Ava has been really sweaty which is a cardiac problem. She had another echocardiogram today which was checking the pressures in the heart and apparently they were better than last week. She has had 2 episodes in the last 12 days where her heart rate dropped low and she turned "white as a sheet" the nurses said. But, her oxygen did not drop, so no one labels these as "tet" spells. I've asked every NP this week the outlook in this system, because they keep saying "we're going to keep an eye on it" well duh! sorry-but that is a pathetic political answer. I ask "are we just going to sit here and watch her grow until cardiology decides to do surgery SOMETIME in the next  4 months?" So, no, she can't go home...but they have no idea what the plan is for her while she is there. I will be pressing for information this week. 

She is about 8 pounds 5 ounces last I heard which is keeping her in the 3rd percentile or so.

I know this is about the crummy-est picture yet, but I was in a hurry 'cause the boys were starving. You can see how sweaty she is.  The nurses tape her pacifier to a burp cloth so it stays near her better. She's not allowed to have stuffed animals, but she seems to like this burp cloth. She's looking at the pictures of her family members taped at her bedside in this photo.