Virus defeated

So my computer virus issue is finally resolved, so i can add updates again. Allison is working on getting on a better schedule. Its been HARD, as she was going to bed at like 5am.
I have been cleaning the house getting ready to move at the beginning of the year. Shampooing the carpets and scrubbing the walls were some of the tedious and time consuming tasks i took on this week. Of course allison "helped".
Xander has been doing ok. At his post op appointment, we discovered he was developing granulos tissue around his gtube, so we have to burn it off with these cool little swabs that look like matchsticks. The dr put in a new tube, which was definitely an experience. It has caused less irritation, and is more comfortable for him. When we first arrived, his fever was at 105.8 and everyone was shocked.
At the cardio appointment the dr did an EKG and a few other tests. The ultrasound showed he had alot more fluid around his heart and proceeded to order an xray. When his assistant asked if it was the pre op xray and he said yes, i was floored. He told me he would be getting the surgery in december. Apparently he is putting on ok weight, but with his crazy fevers and rapid breathing tell us he is ready to get it fixed as he just doesnt have the strength anymore. The appointment has been made for dec 30th, and we have to be at the hospital on the 29th for an NPO order. We will yet again be staying at the ronald mcdonald house. The surgery is at rady childrens hospital in san diego and they expect him being in the hospital about 10 days, and his chest will not be fully healed until a few months post op. I look forward to seeing the difference in my little guy.
Andrew is on leave that he got for reupping. He got 21days of leave that end on the 24th. After that he is on holiday leave, and that directly leads into xanders hospital time. So he will have 39 days of consecutive leave and then we will be out of here pretty soon after that. We all look forward to miramar. Closer to family and the hospital, and better weather.

6 hours of driving to go to a dr?

X was at 9 lbs 2 oz after drinking a bottle, so the kid is still not putting on weight. I have an appointment at 8 30am in san diego, so i am about to head out to drive x and i out there, it is 4 30am now. I dont see how there is no one here that can save me from having to drive 3 hours one way for a hearing test and an ENT appointment. X ran another 102 fever today, and instead of calling the dr, i just gave him some tylenol and waited to see if it would come back, and it never did.

Sickies

X apparently lost weight between his nicu stay and the first peds appointment. He is now back to 9 lbs which is good. He had his peds appt last week, and got 3 shots and the rotavirus drops. He took them well, but puked up the drops. Yesterday x ran a fever of 102.2, and was irritable, but is doing just fine now. A has a cold, as do i , we had a humidifier party all day today. Allison is such a riot, constantly keeping me on my toes.

Meet the Dr.

Met X's pediatrician. I like him for peds but i think i am going to find another dr for cardiology since he wants to leave it all up to balboa instead of adjusting his meds. Hit a tree on the way to the appt, ill never live this one down. X was choking on his own vomit, and instead of hitting the breaks, i turned around to see if he was ok. Oah and i neglected to wake andrew up for work this morning. I am so tired all the time, its just taking a bit more time to get all these wake ups down. I wake up every three hours for 45 mins to an hour, so i only get 2 hour blocks of sleep starting at around 3 am.

Make it stop!!!!!!!

The insanity that is :)
Went to a WIC appointment from hell with an overtired toddler and a colicy (sp?) infant. Two hours after my appointment time, i was freed from that torture chamber.
Xander weighs 8lbs 14oz, holy moses, the milk shakes must be working. Allison weighs 28 lbs, poor thing is a beanpole.
Went to walmart with my dearest miranda, and she darn near did the whole wic thing for me. Checkout must have taken a good 30 mins. After all this, i ask myself, "self, is this really worth it?" Answer is still unknown.
not sleeping like i should, hell, im running on empty 24/7. Which just might be why you might sense a touch of insanity in my "tone", hee hee.
I want a "nap nanny" so bad. Saw it online, i have a feeling i will be saving pennies next paycheck. It looks awesome to use for g-tube feeding.

X hit 8lbs yesterday.They removed the last of the stitches since they were causing more irritation than them helping. They are putting a 2x2 gauze in between his skin and the button, since they are now thinking all the swelling and irritation are actually caused by the button itself since the cultures they took are not growing anything. What the surgeon assumed was that since he is putting on more fat is that there is no room between the button and his skin, and it is kind of pressing into his skin. He said at the check up, he will put in a larger size button, but cant do it yet, because if it comes out before scar tissue has formed, he will have to do the whole procedure all over again. At least we have no infection, as of yet.

Infection

So X ran a low grade fever last night. They immediately did blood tests and put him on antibiotics. No L.P. this time. The surgeon came in to remove the extra stitches around the button. The dr said he was glad antibiotics were started as he thinks it is infected. It is oozy and swollen around the incision site. The only stitches remaining are one on each side to keep the button from moving around too much. X still has a tiny incision under the belly button where they put in the camera, and that looks really good. This puts us back about a week probably, but what is another week?

Light at the end of our tunnel

We got a phone call this morning that we needed to hurry up and get X into DEERS and put him on our insurance if we wanted to take him home on wednesday. We were both in shock. He took to his feeds well and is back up to his full 60ml, some by mouth, some by tube. I am in love with his Mic-Key button (feeding tube), i just clip in the tube and insert his feed, then after it is all in, i just un-clip the tube and we are all done!!!! The surgeon, apparently, did not do some fundo thing where it makes it so they cannot spit up/ throw up. THis would have been nice so that we could do contiouous feedings at night. Oah well, looks like i have to wake up every three hours still :) Our social worker is setting up delivery of all the medical supplies so that they show up on a schedule to our door. We are still working on getting the breast milk fortifying formula, as it is expensive.

A just loves playing at the childcare normally, and asks to play with her "frens". Today she threw a HUGE fit today and took quite a bit of distraction to settle down.

Had a wonderful time at the zoo with my mom and dave at the zoo. Allison had alot of fun. We then went to Joes crab shack for food, andrew had a few drinks. I went to the NICU to learn how to use the gtube and got back at 9:30. Andrew had passed out drunk and allison was screaming in the dark. This appears to be a really shitty night.

Yesterdays surgery went great. He was in a good bit of pain post op, and was given fentanyl. He was quite comfortable after that. He was able to get a button, luckily. Today he is being given just tylenol, and is doing well. He is already getting pedialyte. THey should start him on breastmilk later this evening. THey hope to slowly up his feeds and expect him to be on 50ml by tomorrow pm. After that we learn how to use the gtube, and get his meds adjusted well. They estimate him being home NEXT WEEK.

Surgery #1

Xander goes in for his g tube surgery this afternoon. He had bloodwork and an iv put in at 11 pm last night and poor guy took like an hour no lie. We found out about the surgery yesterday afternoon.

Lemon Drop

So i went out with my dear friend for a do over of our last visit. Went for snacks and drinks at a lovely pub in downtown. I am amazed at how energized i feel now after having some good quality me time. No new updates today on x from me. Andrew is still at the nicu for a feeding. Allison is doing ok, still horrible with the Terrible Twos. No punishment you can throw at her will even phase her. I am so ready for her to move on from this.

Ronald McDonald house

We moved into the new rmh yesterday. It is nice, like a hotel. Three cooked meals a day most days. We are much further from the hospital than before, which is the pits, cant go to many feedings, but it will be monday when X gets his upper gi to make sure he is ok to get the gtube surgery later this week. He is still on antibiotics but no positive cultures have come back. When the drs stopped pushing him to take all his feeds, he gained weight instead of loosing. This is a surefire sign that his heart is working too hard and he needs the gtube.

Spinal Tap, part 2

So X had his second spinal tap, he was running a fever of 102.1 and lethargic. He continued the fever all day, and had to get his second spinal tap, this time they also swabbed him for swine flu, as ther has been some cases here at the hospital. They did not do his upper GI because he was so unwell. He took a few feeds,but was mostly tubefed so he could het some rest. PT/OT consult is hopefully tomorrow.

Mental Health Day

Andrew, A, and I went to Mission beach and relaxed most of the day. I had fun in the freezing water, snuggled allison, made a "toddler sandcastle" (big piles of sand), and found a huge hole a clam was making. Andrew and Nate dug up the clam for 45 minuites, it was VERY stuck in the sand and HUGE. Nate, and his wife and son came to the beach with us. Nate has Lymphoma and is staying at the fisher house as well. When i saw x today, i found out the nurse had not specified at ALL weather or not x finished his bottle or not all night. I am still fuming, as that is important for us and the Dr.s to know. Long day, but we also bought x bouncy seat.

Weight

Forgot to add that x is now over 7lbs now!!! This is a huge step in the right direction for him. Since he is improving he has a bit more time before we put in a g tube.
We are going to be homeless on friday if the ronald mcdonald house is full. Scary thought for us.

So, X took a few whole bottles today, we are so very proud of him!!!!!! His feeding tube was almost out, and some nurse just taped it on, halfway out, without even checking it. This sounds unimportant, but this is EXTREMELY serious, expecially with his already fluid filled lungs, as he can drown on his own feed. I was the one who noticed. The nurses gave me the hope that he could go on a walk around the nicu, and possibly even outside, only to tell me that they are afraid to take him off the monitors because of his Heart failure. He has not had a desat in weeks.

Reglan

The Reglan is making me really loopy. X woke early and had already finished 39 of his 50 ml when I got there at 11pm, and he was tired out. Andrew had been gone all day in Yuma so i was looking forward to feeding him. I ended up staying up until the 2 am feeding so we could have some time together. He refused to nurse completely, but took 30 ml of his bottle. Apparently, they are doing construction next door to his room, so he was awake for quite a bit. His blood pressure is a little low, which is a common side effect of the Captopril that they started yesterday. He has until Monday still,before they tell the surgeon to book the g-tube surgery for Thursday. In a way, i look forward to it either way, i just want my baby to come home.

So the dr put X on captopril. It is to treat his heart failure in another way.He has until Monday to improve his feeds, all the way up to 40 ml. If he doesn't, they are talking about putting in the g-tube. I am on a new medication for breastmilk production, and it is working wel.

Address

We have be asked multiple times for our address, so i figured i would post it here
The Zachary and Elizabeth Fisher house
Naval Medical Center, Building 46
34800 Bob Wilson Drive
San Diego, CA 92134-5000
Andrew Bailey, Room 4

X is doing well, he is now up to 6lbs 11oz. He nursed for a good 8 minutes today, which made my day today.Allison is having a tough day today, she has screamed alot, for no apparent reason. Xander slept through his 11pm feeding, so she just put it in the tube. I am having some serious supply issues with pumping, and its really hard on me :(

Flu :X

So i had the flu on the 22nd, so i had to stay away from X for ANOTHER 24 hours. When i got back, the nurse informed me that X took a full 50 ml bottle for her. This is the first time he has ever done this. He later took 40 ml. These are great steps for him, and shows he is getting stronger. I nursed him for a good 2-3 mins, then he drank 20ml of his bottle after that. He gained a tiny bit of weight, last night. Nothing else has changed, which at this point is a good thing.

10 days?

Wow, where do i start? As all of my lovely followers know, X has been diagnosed with Unrestricted ASD, which means he has a hole in his atrial septum. The unrestricted part is where it gets scary, the hole itself is so large there really is no actual wall between his left and right atrium. This is causing the fluid that should be pumping from the left side of his heart and down through his body to bypass the body and go straight to his lungs. Sooooo, he still has quite a large amount of fluid in his lungs. As a matter of fact, it is getting worse, not better, like they would expect it to with him on the Lasix (a water pill). The lasix is used to prevent fluid retention in people in heart failure, which X officially has.
X also has VSD, pretty minor, not a HUGE deal, but it is also not improving at all, and is VERY unlikely to repair itself anyways. This is where heart surgery comes in. They want to wait to around 3+ months to repair his heart to get him bigger, seeing as his heart is around the size of a kumquat. The bigger his heart is, the easier for the surgeon to repair his heart.
X also has a 3rd, very minor heart defect, a PDA, which, according to EKGs is repairing itself on its own. It is so common they actually neglected to even tell me (grrrr). I just finished googling it, and this link explained this really well. http://www.healthsystem.virginia.edu/uvahealth/peds_hrnewborn/pda.cfm
On his due date (Aug 20), X was having what the nurses call "picket fence breathing". This is basically rhythmic apnea, breathing for a few breaths then stopping for a few seconds, then he would do it again. He was really destating from that, and the nurse put him back on a cannula of room air at just 2 litres. This helped long enough for them to administer a loading dose of caffeine. The caffeine is rarely used on a full term baby, let alone a 3 week old full term baby.Thankfully, it actually worked, and they were able to wean him off the cannula 5 hours later. They are hoping he behaves as he was also rather tachypneic (rapid breathing) yesterday and today.
X was very irritable at his 11pm feeding and at his 2pm feeding, the nurse discovered he was running a fever, and the called me to ask for authorization to do a spinal tap and a full blood culture on him. He is doing better today, but they have him on three different antibiotics.They are precautionary as getting an infection in his state could be devastating.
The cardiologist said she is concerned with the fact that he has not gained ANY weight since birth, especially since he is getting tube fed exclusively every other feed, and for over half of the other feeds. He is on 24 calories every feed, which would be the equivalent of eating fast food for an adult. This is a big sign that his heart is working extra hard to work. At this point he has until the blood cultures come back (3 days) before they put him on another heart medication. After that he has 7 days to make improvements on his lungs/ heart before they talk surgery. So he basically has 10 days.

My Dear friend and neighbor back in Yuma, Miranda, came and saw us. She was on vacation in Poway. We received 2 free passes to the San Diego zoo from a Nixon relative of mine that lives here in balboa. Since Andrew and Nathan (Miranda's husband) got in free, we all got in for absolutely nothing. It was a wonderful time and was good therapy to see her.
Miranda checked my mail for me and discovered my NCG friends sent me an amazingly generous gift to help us out. Words cannot express how much it means to me to have that support in this stressful time.

Flu

So i went to the NICU yesterday for x's 2pm feeding, he was a lazy nurser, but he took 40ml of milk via bottle. When i get back Auntie Katelyn is hanging out with A and andrew. We all decide to go to horton plaza for a late lunch. On the way there, allison throws up all over herself. We were lost and had to ask for directions. Finally we get there and run into macy's and get her a cute jumpsuit. Auntie k helped me get allison changed, and we head to panda express for lunch. While waiting to order our food, allison pukes again. I catch it in my hands, all but a few drops. So we finally get our food to go. I also got cinnabon for dessert, hey, it was a rough afternoon :P Get back to the Fisher house and eat. Allison is acting normal again, and i was thinking it was just the fact that allison had been chugging "bunny" (chocolate) milk all day instead of eating.
I took Auntie k to see x again and finished up the 8pm feeding. When we get out, i get a call from andrew that allison puked again in the playroom at the fisher house. Auntie K had to go, so we walked her to her car, and go to our room where allison slothed around the room for a bit and fell asleep. I was relaxing and watching t.v. and had nodded off. I woke up abruptly just barely in time to catch another round of vomit. Poor thing was MISERABLE.
All day today we avoided seeing x, to prevent him getting sick. Saw him for his 11pm feeding. The corpsman had given him a mohawk, and let me tell you, this may become his permanant hairstyle, it is to DIE for :)

Bath time

X got a bath today. First one in over a week. He did reallly well, and did not cry at all. I found out that the dr will perform the circumcision the day before d/c, so that is one less thing to worry about. x was allowed to nurse again for his 8pm feed. He did ok, he at least tried a bit more this go around. After he tried to nurse, i fed him a bottle and he ate ove 20 for me today!!!!! I am so proud of his progress, and the only reason he did not eat more was because he hit the 30 minute mark, so they had to put the rest in his feeding tube. He got a tiny "blanket" from project linus, and it is to DIE for :)
A played at the park with daddy while i was feeding X. We tried to go out to eat in the gaslamp for an early dinner and allison threw her worst temper tantrum to date. Needless to say, we spent $10 to park just so we could get back in the car after walking a few blocks. Her molar is all the way through the gums, but there is a bit of gums over part of her tooth still, making a blister type thing.
The social worker informed us that if we get another complaint, we will be kicked out of the fisher house, apparently two people complained already. Allison woke up at 2 am crying in pain from her tooth. this is exciting, expecially since andrew did not get funded orders, so we are paying for everything out of pocket :(

nursing :)

X was able to try to nurse today, he did ok, but i was just amazed that he actually latched on at all. He only took 10ml for one nurse and 20ml another time for me. We are making some progress with eating, which is really what is keeping us here.

Balboa

So, the EKG showed a substantial amt of fluid around his heart, and that his ASD was what they considered large, so they flew him out here to Balboa so he could be seen by a specialist. We run around like chickens with our heads cut off trying to get my breast pump and paper work sorted out before we go. Andrew was told he would be flying with X, so i drop A off at Miranda's house so we can go to the hospital together. When we get there, the childrens hospital nurses say that he cannot come with them. We send him off, and follow the ambulance all the way to the airport. Then we packed in a hurry to get everything done. When we arrive. X was doing wonderfully. They did another EKG this a.m. and said the fluid has gone down and it is no longer an emergency, so as long as no complications arise, X will probably have the surgery to repair it in a few months. They took him off the canula last night, and he is doing very well. He is still struggling at times to breathe, but the canula was just a crutch and not needed anymore. He has an iv port again, but just for his Lasix, as it works better in an iv than orally. He is opening his eyes a bit more. They upped his feeds back to 50, and are supplimenting in more calories. The cardiologist informed me that because of his heart, we will more than likely have to suppliment in extra calories until his surgery. The fisher house here is really nice. But i REALLLLY cannot wait to get home.

Small Steps

I am used to walking into the NICU and seeing that something has changed at this point, but i DEFINITELY did not expect to see X in a bassinet from the isolette this evening!!!! He is doing great at keeping his temp now. He also took a whole bottle this evening. The nurse said it took alot of coaxing, but he did it!!! Oah today is a good day.

*Fingers crossed*

X is off the lights again, his levels are at 9, lets hope it stays thet way!!!!! my dad and step mom came for a visit and got to meet X. Apparently X took half of a 1.5 oz bottle this morning before he pooped out, but at least it is a step in the right direction :D

Fever?

Went in tonight and the nurse was taking X's bp, and she said the isolette was too warm, so x was running a temp of 102.4 she turned it down, but did not want to make it lower because it was beeping. So he was still at 102. He was covered in sweat.
He really is more active lately. Alice came and saw X for the first time, i was so happy to have family come see him. X lost a bit more weight yesterday. His diaper was poopy, so i changed it, hard to do in an isolette, i found out.

Isolette

X is not regulating his body temp properly, so he is now in an isolette. His jaundice is back at 16, so he is on triple lights again.

Yesterday

Yesterday was long, and i am still tired from it :)
Trip one X was off all lights, and i got to actually look at his pretty face. When it came time to feed him, i actually got to hold him for the entire feed, which was 30 mins, plus a little extra after that. He is so tiny!!!! He was dropped down to a 3 from a 4 on the canula, but they were talking about upping it again, after 2 hours of not breathing well on 3.

Trip two, X was sleeping so peacefully i did not want to even tough him :) I gave him lots of kisses though. He was doing about the same, except that they did have to up the airflow again.

Feedings woes

Apparently X cannot take nursing or bottles at this point. He was taking a bottle for the specialist and his heartrate dropped, and stopped breathing. So he is on one nipple feed a day, and it has to be water. Getting the results of the downs test was a relief, i knew he was anyways, but good to know. His iv was taken out, because he is feeding enough.

Downs results

We went and saw X this morning. He is off the bili blanket again. He is taking feeds VERY well and is up to an oz of breastmilk, eight times a day. IV is out of his head as he was moving too much and pulling on it (ouch), so it went back to his arm. They are hoping he will be off the iv today or tomorrow, as he is feeding well now. I got to change a poopy diaper, that was fun :) While i was taking my turn in the lobby with A, andrew was informed by the dr that X does, in fact have downs. We are not surprised in the least, just glad to have the results.

EKG came back

Trip one to nicu, Katelyn watched Allison so me and andrew could visit Xander. As soon as i see him, i notice he is back under the bili blanket. After adjusting his "goggles" i notice he has an IV in his head. Poor guy has it all taped in his hair. Nurse greets us bedside, and informs us his hand iv was making his hand swell so they put one in his head. It looks just awful, by the way. That his jaundice was in fact up again, so they have him under triple lights and will be for a few days and they will recheck after a day or two. She said she was just about to put in the feed tube, and said we might want to leave as it can be a bit upsetting to see. So andrew went to go play with allie, and i went to pump. HORRIBLE idea, as the room is connected to the NICU and i heard his wailing and choking from the pumping chair. Came back and apparently they could not get it in his nose, so they put it in his mouth. His nose was all bloody from their attempt. They gave him 1/2 oz of breastmilk and we left.

Trip two. Allison passed out in the car and i went in first, while Andrew stayed in the car with A. Show up and no one even glances at me, so i went to pump. Came back and stand there on pins and needles waiting for someone to come... nothing. Talk to X a bit , and his alarm starts going off, the warmer was on full heat and said his body temp was dropping. Alarms blaring, red lights flashing... nobody comes. I notice the sensor is, in fact not attached. So i tell a nurse, and she has me attach it. So then, he is SCREAMING and immediately the alarm goes off again because now that the sensor is working it is reading that it was baking him from it thinking he was too cold. No one comes, until a nurse comes and just turns off the alarm. Eventually the neonatologist comes over and tells me X has ASD and VSD. The following link explains both rather well. https://www.clevelandclinic.org/heartcenter/pub/guide/disease/congenital/septal.htm
She says she wants to do a repeat EKG on the 11th. I ask if it will be monitored from home if he improves his feeds by then. She beat around the bush, but basically said it would be a miracle that he would be out by then. Super. I left, and Andrew went and saw X for a bit while i stayed with A in the car.

Long day, pumping like crazy to get enough for all of X's feeds.

My trip to the NICU

Arrived at the NICU and checked up on baby X. He was just sleeping all cuddled in the bassinet, and I gave him a few kisses then went off to go pump. After I pumped one breast, I went to go try to nurse him. We got him all situated and he tried to latch. I had a letdown, but he was dry, so it means he got some, I was soooo excited!!!!! During the nursing session, I overheard it was his nurses birthday. So when I gave him back I wished her a happy birthday. Well X was wet, but I am still afraid to change his diaper so the nurse was changing him and he had pooped. Well the nurse was wiping him up, and he started peeing, and got her in the face. I told her it was his present for her, and she thought it was hilarious. I finished putting the diaper on him, while she cleaned up. Then she had to change all his sheets, so she asked if I would hold him, I of course said "yes". As I am holding him, he opened his eyes and just looked at me. What a special moment for me, as he has yet to really open his eyes. I just feel so energized after such a good visit.