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.