All fixed up and back at Mercy

The nurses at Mercy made him a welcome back sign

Aiden's hernia surgery on Thursday went well. He was off the ventilator and breathing on his own again right after he was brought out of surgery. He wasn't on huge pain medication afterwards like his last surgery, only tylonel, so after a good sleep from the anesthesia he was acting like himself again that night. Hopefully, that was his last surgery for a long time.

He was transferred back to Mercy on Friday morning. The nurses were so happy to see him. He is back on bottle feeds, getting down 15 mls every 3 hours. He is still on his TPN and lipids through an IV until he is back up to full feedings - before his surgery he was getting 14 mls every hour. He is still learning how to take a bottle and it takes him 25-30 minutes to finish his 15 mls. He falls asleep alot and at the end we kinda have to force feed him - it takes alot out of the little guy :) Our main priority right now is getting him back up on his feedings and teaching how to use the bottle.

Dinner last night...

Aiden licking his lips after tasting the milk :)

We will talk to his doctor when she is back on Wednesday to find out what the plan is for getting him home to us! Hopefully it won't be long now that he is all fixed up! He is ready to be a normal baby. He loves it when we hold him and has started to realize when we are leaving and fusses and cries until we pick him back up - it is so hard to leave him at night, hopefully soon we won't have to. We are all ready for his homecoming!

Some pictures

Aiden started getting milk again today - 10 mls every 3 hours from a bottle, not a tube :) He is up to 5 lbs 6 oz now. His hernia surgery is tomorrow morning and the word from his surgeon is that he will be transfered back to Mercy sometime on Friday. Although he is doing really well at Sutter, we will be happy to get back to Mercy, it feels more like "home". Since the last couple posts have been photo-less, here are a few pictures we took today of Aiden's bottle feeding adventures, etc...

Momma feeding Aiden

After lunch...sleepy baby

Daddy's turn

"What's momma doin' with that camera?"

Aiden's tummy post-surgery - if you look close you can barely see the scar. Babies heal fast!

...and we have poop!

Aiden has done very well the last couple of days.
His "plumbing" seems to be functioning well,I got to change my 1st poopy diaper today. I think I did pretty well for a rookie. He is still on TPN/Lipids however they are beginning to bottle feed him some pedialyte. The nurses seem pleased with his ability to bottle feed. Hopefully his days of "constant feeds" with the feeding tube are over or at least limited. It is possible that on Wednesday he will be fed milk again. We think Aiden prefers the milk over the flavorless pedialyte.

He has been doing well on the nasal cannula on 2 liters @ 22-24% oxygen.
FYI, 21% oxygen is what we all normally breath. The last couple of weeks Aiden seemed to be stuck at 2 liters @ 30-35% oxygen. The fact that he is doing so well after his surgery is very exciting for us.

Also, the incision from the surgery is healing very quickly. In a couple days all of the steri-strips used to close the skin will have fallen off and it will be hard to tell he even had a surgery.

We are so proud of our strong boy

Recovering nicely

Aiden was able to get off of the ventilator on Saturday and is currently back on the high flow nasal cannula. He is on 3 liters of oxygen at 30% which is a little bit higher than he was before the surgery. He will more than likely be re-intubated again for the hernia surgery which has been scheduled for Thursday at 1:30. We've been told that the upcoming surgery is a little easier and the recovery should be quicker. He will just be given children's Tylenol for the pain rather than morphine. Aiden has been more himself the last couple of days which is nice to see.

Aiden is still on TPN and lipids, but we are hoping the feedings will start soon. On the night before the surgery Aiden weighed in at 5lbs. Two nights ago he was at 5lbs 9oz which is alot of weight gain in a short time. He has put on alot of water weight since he wasn't given his daily doses of sodium and diuretic prior to surgery. We should see a slight weight drop and his "double chin" disappear in the next couple days.

Quick surgery update..

Aiden came out of surgery just fine, it took about 3 1/2 hours.

The surgeon chose not to do the hernia repair at the same time which means Aiden will have another surgery probably sometime next week. We've been told the hernia surgery's are fairly simple however he will have to be re-intubated again next week.

He is currently on a ventilator while he is on pain medication, they will try to ween him off slowly but we were told it could take around 24 hrs.

He will more than likely be staying at Sutter for a bit longer than expected, we suspect it will be 7-10 days.

The surgeon does not want to release him back to Mercy until he knows the "plumbing" is working correctly.

Thanks to everyone for their well wishes and & support :)

Frustrated waiting

Yesterday we received a call from Mercy telling us that Aiden would be transferred to Sutter a day earlier than expected. Mercy is going "live" with a new computer system on the day he was supposed to be transferred, they were also nearing NICU capacity while Sutter had space available.
He was to be transferred by ambulance at 4:30pm so we went down around 2:30 to sit with him and hold him. When we arrived he was in a deep sleep, apparently he had a rough night and didn't sleep very much. It has been difficult for him to get comfortable and get some good rest. Aiden is in obvious discomfort from the hernia and stomas.

He has always been a very calm baby who hasn't complained or cried very much. In the last week or so he has been difficult to comfort & has been crying a lot more.

The transfer to Sutter went fine, the nurse said he slept the whole trip over.

We STILL do not have any confirmation whether or not the hernia will be fixed at the same time as the re-connect. I asked the Sutter neonatologist last night if the hernia will be repaired at the same time. We received the same answer that we have always gotten....." that will be up to the surgeon".

BEGIN RANT:

Not wanting to disrespect the medical staff, so in my head I'm thinking ...."OK, SO FREAKIN CALL THE SURGEON AND ASK HIM FOR CRYING OUT LOUD!!!"

I've really gotten the impression that surgeons are looked upon as some magical being that cannot be contacted or communicated with until they choose to make an appearance. Don't get me wrong, I appreciate what they do and acknowledge that we need them. I just don't understand why we are left with unanswered questions until the minute before the surgery.

END RANT

Holly and I were at Aiden's bedside until around 10pm. We had a really hard time leaving when he is crying. Leaving him with a new set of doctors & nurses doesn't make it any easier. We trust their medical expertise however we fear that Aiden will be left to cry while other babies that are worse off are tended too. Another thing that we find strange is that Aiden is not being given any pain medicine for the hernia. It appears that he just has to deal with it which is just heart breaking to Holly and I. Luckily, Aiden's surgery is scheduled for 8:45am on Wednesday morning. We are really looking forward to some poopy diapers!

Oh..and the surgeon had better throw in a free circumcision for making the poor kid wait so long!

Postponed :(

I know...I know, it's been over a week since the last time I posted anything. It's been a busy week. Aiden is doing good, we are patiently waiting for his surgery which has been postponed until Wednesday 3/4. The surgeon that did his original surgery wants to do the reconnection also and he is not available this week. We were upset to have to wait, but at least we know the doctor and are comfortable with him, after all he saved Aiden's life once before. We still don't know if he will do the hernia repair at the same time, we are hoping he will so that Aiden doesn't have to have another surgery and go back on the ventilator a second time - once is plenty!

All cleaned up after his bath on Sunday

"No...you cannot take my binky"

Aiden is still getting 5-10 mls of milk by bottle 4 times a day in addition to his continual feeds of 14 mls an hour. He is getting much better at bottle feeding and is able to pace himself a little more and remember to keep breathing while he is swallowing. He is still having alot of output, but the only fix for that is the surgery and he is still gaining weight good. Last night he was 4 lbs. 13 oz.

This past Saturday was Aiden's baby shower and we have been busy putting all of his goodies away, we officially have everything he needs to come home and boy are we ready! A big thank you to my wonderful sister, sister in law and mother for making his shower so special, and thank you to everyone who came and spoiled little Aiden :) Jeremy spent the last couple days building him a closet organizer so we have plenty of storage and a place for everything, now Aiden really does have a nicer room than we do!

Wednesday's bath night photo

Last night we took an infant CPR class at the hospital and then gave Aiden his Wednesday bath. He still loves bath time and we love that it makes us feel like "real" parents. After his bath I dressed him up all cute in a little outfit and matching hat that Aunt Lisa gave him for Christmas, Jeremy fed him and then we tucked him into bed. He is such a good little boy, he barely cries - just lets out a little complaint now and then. His due date was also on Saturday, so he is officially a term baby! He also turned 3 months old on Monday. He is getting to be such a big boy!

Is that a bottle I see?

On Monday morning Aiden's doctor called to give a routine update and I mentioned to her that I was concerned that he wasn't bottle feeding yet and worried that he was being set back too far in the feeding area by waiting for his surgery. I mentioned to her that I thought he was getting milk during our breastfeeding sessions also. She decided to give Aiden a chance to prove his bottle feeding abilities/tolerance this week. He has been getting 2 bottles a day since Monday - only 5 mls in each bottle, but it gives him good practice. Today she said he was doing so well on the bottle that they are going to give him 4 bottles a day! We fed him his first bottle Monday night and I fed him again today. He is actually pretty good at it, he does have to be reminded to pace himself and I just tilt the bottle down so he stops getting milk and remembers to breathe. He really enjoys it and burps like a big boy afterwards :)

This is Aiden getting his bottle...

This is what happens after Aiden gets his bottle...

And this is what happens when momma stays at the NICU too long late at night :)

He weighs 4 lbs. 7 oz. and has finally been gaining steady weight - about an ounce a night. He saw the surgeon yesterday and we were told his surgery is tentatively scheduled for Tuesday or Wednesday of next week. The sooner the better! He will be transferred back to Sutter the day before his surgery and stay there 5-7 days before being transferred back to Mercy.

He is almost a full term baby and all the nurses and the physical therapist say he is a VERY social baby. They have actually turned him around in his incubator so he is not facing the wall so that he can watch everyone in the room. The nurses also taped some black and white pictures of shapes up in this incubator so that he has something to look at. He loves his awake time, loves it when people talk to him and really loves it when people hold him. We can't wait to bring him home where he will have lots of social time with mom & dad!

Sunday is bath night...

Every Sunday and Wednesday are Aiden's bath nights, today we asked to do it early since we are spending a rainy night at home. He still gets just a sponge bath until his surgery, but boy will he love real baths - he loves the warm water. After his bath was done and his hair was washed daddy brushed his hair...

All cleaned up and ready to get tucked into bed!

Look at his hand - he is trying to help (or trying to get daddy to stop...ha ha)

The little white board on his hand is keeping his IV in place, he is on day 5 of 10 of some powerful antibiotics to get rid of the drug resistant bacteria that they found last week. His blood work all came back fine and the bacteria is just in his urine, so he has a urinary tract infection. Which I guess is better than in the blood! The poor guy HATES having that board on his hand since he loves to put his hands in his mouth. He also has a hard time getting comfy while kangaroo-ing with that thing on. He can't have his surgery until his infection is completely gone, which I understand, but am so tired of hearing the doctors say "hopefully next week". I want our little one to be on the road to recovery, the road home :)

He is 4 lbs. 4 oz. now, he is filling out more everyday. They are still watching his feedings and output very carefully and are adding "microlipids" to his milk to further fatten him up. I am still doing recreational breastfeeding with him and the other day I think he got quite a bit of milk, I was impressed that he was sucking, swallowing and breathing so well. Preemies have a hard time with that. Afterwards he let out a giant burp! Hopefully it is getting him geared up to bottle feed (after his surgery) and he can stop being fed by tube.

It's been a tough week with lots of testing for Aiden because of his infection and the nurses and doctors thought he might have developed a heart issue, but after several tests they determined there was nothing. It gave mom and dad something to worry about for a couple days though! Momma's had her own health scare this week, too - so we are hoping for a quiet week to come!

Not another one!

Well, Little Mr. Nicolls has another infection going on. They repeated his bloodwork from last week and it shows further elevated inflammation/infection levels so they had to start him on antibiotics and do more blood & urine cultures to see what type of infection he has. They test mostly to rule out the bad ones like sepsis and meningitis. It could also be that the bacteria they found last week in his urine has actually infected him. So, the nurse had to start an IV on him and he will be on antibiotics for at least 10 days. The poor kid, he just can't seem to catch a break...he has luck like his momma.

He is still up and down on his weight, he is around 4 lbs. 1 oz. and the doctor is still waiting to hear back from Sutter and the surgeon to set a surgery date, but with the new infection he might have to wait a little bit longer than we were hoping. We are all ready for him to be put back together again!

He also got his eyes examined again this morning and is still showing only very mild stage 1 ROP (retinopathy of prematurity - a disorder where the blood vessels in the eye grow abnormally). There are 5 stages of ROP (5 is the worst) and some cases require laser surgery and in some cases it can cause blindness. Luckily for Aiden, his should not effect him.

Yesterday he gave his momma a heart attack and decided to pull his feeding tube up so that some of his milk got into his lungs. He started choking and his O2 saturation went way down, when the RTs and nurse went to check on him they found his tube up but were able to stabilize his O2 again. They took x-rays to make sure it didn't do any damage to his lungs and it looked OK. I hate that feeding tube. Because he is on continuous feedings if he pulls it it can get into lungs and cause alot of damage - he could even die from milk getting into his lungs. We can't wait until it is out or at least until he is on milk every 3 hours when they can check the tube before feeding him. The funny thing is after that little incident he has been requiring less O2 - today he was at 28% and they moved him from 3 liters to 2 liters per minute...go figure! The tube still freaks me out though!

He loves his binky!

Hangin' out on daddy...

The nurses have been more relaxed about the gown and glove rule, so it hasn't been as bad as it was the first day. I only wear gloves when I change his diaper and we wear cloth gowns which are not as bad as the plastic was. We have even snuck in the camera :)

Are we there yet????

It's been a week since I have posted and we are starting to get phone calls and emails wondering what is wrong :) Everything is fine, Jeremy has been sick with a cold and I have been down at the hospital ALOT this week. Aiden is doing just fine although he does have some new issues that have come up. He does have a hernia on the left side of his abdomen that will most likely get fixed after he comes home.

He had a routine blood and urine test done earlier this week and it showed some elevated levels and a possible infection beginning so they did some further cultures on him. He has been acting fine and has actually been more alert than usual so I was pretty sure nothing was wrong, however one of his test came back showing a bacteria in his urine that is fairly resistant to antibiotics. The doctors are seeing no sign that he is actually "infected" with this bacteria but rather he is carrying it. They are not going to treat him for it but, since it is something that can be passed to other babies poor little Aiden is now on lockdown and we have to wear a plastic gown and gloves and were told we could not touch him. They will keep checking his urine to see if it goes away or becomes an infection, but most likely he will just keep carrying it and we will have to have restrictions for the rest of the time he is in the hospital (5-6 more weeks).

Naturally, the no touching rule is not sitting well with us. The plastic gown is like a heater and Aiden was slipping around while we were trying to hold him. The plastic gloves were the worst part. Normally, we touch Aiden's head to comfort him, but now instead of being comforted, he squirms and cries. When we would touch his hand with our fingers he would wrap his hand around us, now he pulls away. He is obviously feeling the gloves and has associated that with nurses and painful tests and procedures. I talked to the doctor this morning and expressed my concerns and unhappiness with the new rules, I don't want to spread anything, but at the same time WE HAVE TO TOUCH OUR BABY so that we can continue bonding - it is hard enough to bond with him in the hospital without adding this, too. He needs loving touch and not just clinical touch and I don't really understand if it isn't a bad enough bacteria to treat him for it why we can't just wash our hands often and before we leave his area to go home. So, we came to a compromise and we don't have to put on the gloves and gown when we are doing kangaroo care or if I am doing recreational breastfeeding. So we decided we will just do both those things often :)

Sorry about the rant - I think Jeremy and I have both come down with a severe case of hospital-itis or iwanttotakemybabyhomenow-itis. It's been 77 days of being there everyday and It's hard to see other babies that were born after Aiden get to go home. Especially now that all the other parents see Aiden's contamination signs and look at us like he has the ebola virus or something.

Anyway, other than that he is tolerating his feedings good enough and is now at 3 lbs. 15 oz. - almost to 4 lbs! The doctors have called the surgeon to get a date and time for his surgery, probably next week some time. They have also been able to reduce his oxygen flow this week from 4 liters to 3 liters per minute. They will try to reduce it again this week. After his surgery he will just need to work on bottlefeeding and steadily gaining weight so he can come home. Clearly, we can't wait for the day he leaves the hospital to come home with us!

The other thing is that we are not allowed to take our stuff into "the contamination zone" which means no camera, no pictures. I am going to try to sneak it in, but I might not be able to post new pictures on the blog regularly :(

Glow Worms

Remember those toys from the 80's - the glow worm? Last night Aiden was all bundled up in a green blanket and he looked just like a little glow worm...they are even the same size - ha ha!

The 80's version...

Our little glow worm!

Aiden has been pretty stable the last few days, not much new to report. He is still is having trouble gaining weight - he is not losing any, but has only gained an ounce in the last 3 days. The doctors would like to see about an ounce a day. I am so ready for him to get to 4 pounds so he can have his surgery, start bottle feeding and come home soon! The sooner he has the surgery, the sooner he can come home.

The physical therapist made some splints for his little feet this week and he has been wearing them for the past 2 days, 4 hours on and then 4 hours off. These splints help him to keep his feet straighter, but mostly are just getting him used to having something on this feet for when they put him into to hard casts. The therapist says that hard casting usually takes about 2-3 months to be effective, hopefully then his little club feet will be straight. I think his feet are cute the way they are, but they will be even cuter once they are straighten out :)

Jeremy looking kinda mad and Aiden in his new "shoes"

Jeremy held him for over 2 hours last night, I don't think he wanted to put him down. They look so cute when they are all cozied up together...

A little trouble with feedings

Aiden is still doing pretty good. He does have some issues going on with his feedings, he is back up to 11 mls/hour but had to drop down the last couple of days because he was having too much stool, which is another sign of him not tolerating his feedings. He was doing OK with his feedings today and weighed in at 3 lbs. 10 oz. His doctor is a little concerned about his weight gain and would like to see him gaining more at this point. I think it is just hard for the little guy considering his intestine is not working right and I think he will do much better on his feedings after his surgery. The poor guy may also have a hernia going on as well, which they say is pretty common in preemies and not life-threatening. Hopefully, if it is a hernia, they can fix it when he goes in for his intestine surgery in the next few weeks. His oxygen needs haven't changed, he is still on the high flow nasal cannula on about 35-45% oxygen.

I was sick this week and didn't get to go visit him for 3 days - it was torture! I finally got to hold him again yesterday and today. Jeremy was holding him tonight and he was wide awake checking Jeremy out for about 10 minutes. He really gave him the stare down! He loves it when we hold him, which is a good thing because once he is home he is never going to be put down :)

Giving daddy the stare down...

Aiden loves to be held by his daddy!

2 months old, Aiden's story - this is a long post :)

Aiden was 2 months old on Friday. He is getting to be such a big boy, last night he weighed in at 3 lbs. 7 oz. He is still stable on the high flow nasal cannula and needs about 30-35% oxygen. We have been able to hold him alot more and I have started recreational breastfeeding with him, last night he did really good and stuck with it for about 30 minutes...I think he likes it :)

Jeremy and I were reminiscing the other day about all our ups and downs with little Aiden. He has been such a fighter from the very beginning, he is our little miracle baby!

First we were told I wasn't pregnant - my HCG hormone levels were going up, but not enough. We were told they would take one more test and if it wasn't higher I would need to stop taking the progesterone shots and try again. They tested again, and sure enough they were higher.

Then we were told that they still weren't high enough so they thought it was either an ectopic pregnancy or a molar pregnancy - both not viable. So they wanted to do an ultrasound and sure enough, they found a little sac and a little baby with a little heartbeat. The nurse told us that day "it must be a little boy in there" - it turned out she was right!

At 9 weeks I started bleeding, I thought that was it, something was wrong with the baby. We raced to the doctor and had an ultrasound and sure enough, the baby was fine with a loud, strong heartbeat. The doctor said it was a subchrionic hematoma (blood behind the placenta) and it bled every week until 19 weeks, during one of our emergency room visits they did an ultrasound and noticed the amniotic fluid was low and I was referred to a specialist.

At 20 weeks, when everyone else's main concern is whether they are having a boy or girl we were going to a specialist wondering what was wrong with our baby. They did an ultrasound and told us that there was no water left in the gestational sac, but sure enough, the baby was still fine, had a strong heartbeat and no abnormalities. We were told that we could choose to terminate the pregnancy or I would either go into labor within the next week or so, the baby could continue to grow but have many different problems or it could be just fine. If the pregnancy continued they would see me again at 24 weeks when the baby was "viable". We choose to be optimistic, and I went home to start my days of bedrest at home.

I stopped bleeding but started leaking amniotic fluid instead. I drank a gallon of water a day to encourage the baby to make more amniotic fluid and stayed off my feet. At 24 weeks, I went into the hospital to start bedrest there. I read alot of books, took up knitting and stayed in bed all day every day. The night that I turned 27 weeks I started bleeding again, but this time there was much more and it was painful. Aiden's heart rate kept dipping down low showing he was in distress. Both Jeremy and my doctor were called and both rushed to the hospital in the middle of the night.

Aiden was delivered at 5:48am the next morning via emergency c-section and as the doctor suspected, my placenta was tearing away which was causing the bleeding and causing Aiden to not get as much blood and oxygen as he needed. I didn't get to see Aiden until that night (they MADE me go to bed and recover), but Jeremy got to see him when he was first born and visited him in the NICU after they stabilized him.

Later that morning the doctor came to see us and told us that "we have a very sick baby." Aiden had pulmonary hypoplasia, which meant his lungs were too small due to the lack of fluid and had to have 2 chest tubes placed to drain fluid from his lungs. He was on the highest ventilator settings. His doctor wanted to give him nitric oxide to help his lungs and although it is not FDA approved for babies, the doctor knew it would help him and she was right. She was the first doctor to save his life.

When he was 3 days old the doctor brought us into a little room and told us things did not look good, he was on maximum support - they could not do anything more for him. She told us they needed to know how far we wanted them to go to keep him alive. We said we wanted them to do everything. She started crying during that conversation and I will always love her for that, not every doctor can be a great doctor and show such sympathy to us at the same time. We were devastated that day, but sure enough, that night Aiden turned things around, he got better, he wanted to live.

During the next week he got better each day, he was no longer on maximum support. They were lowering his settings everyday. Then he started getting sick. His belly was swollen and purple, his x-rays showed a bubble of air in his intestine and the doctors called in a surgeon who wanted to do immediate surgery. The surgeon told us that he suspected an infection in Aiden's intestine had caused a part of it to die and that there was a hole in it which was allowing waste to get into Aiden's abdomen. He said there was no way to know how big it was until he opened him up. If it was small they would take part of the intestine out, if it was big there would be nothing they could do and they would close him up and keep him as comfortable as they could but he would not live. After a few hours that were a total nightmare for us, the surgeon came out and told us that he removed 2-3 cm of Aiden's intestine and that this was the best possible outcome for the surgery. That was the second doctor to save Aiden's life. We love him, too :)

I think that pretty much catches us up to where we started this blog. Since his surgery he has had a couple minor infections and has had some ups and downs with feedings and oxygen requirements. Getting off the ventilator was a huge step for him, we know he can breathe on his own and as his lungs heal he will eventually no longer need extra oxygen. He really has come far from those first few days. We are so proud of little Aiden and are so glad that he is so fiesty - he has done alot to help himself. And even though it has been a rocky road, it is making Aiden the sweet, strong little boy that he is! He is exactly what we wanted and we love him so much! We are so grateful for everyone who has helped him along the way :)

From 11/23/08 to 1/23/09 - he has come so far since he was born!

Bath Time!

Jeremy got to give Aiden his sponge bath Wednesday night. Aiden loved it, he was happy the whole time and got all nice and clean. After his bath he cuddled with his daddy and then he got tucked into bed and fell fast asleep.

Aiden's new baby condo

Little Aiden is moving up in the NICU world. He has been off the CPAP and on the nasal cannula for 4 days now and is still doing good, he tries all day to pull it off his face and sometimes he is successful which results in a little decrease in his oxygen saturation. He was moved into a "big boy" incubator on Saturday night. His new incubator is smaller and allows more light and noise to come in, so it's not as cushy as his old one, but he is getting to the age where he needs to get more used to the world around him. His nurse on Saturday night gave him a good scrub down, combed his hair and put him in his first clothing, a little blue t-shirt. Jeremy and I both said he now looks like a "real" baby - just a miniature verson. He is so adorable.

Aiden's new condo...

He has really taken a liking to his pacifier!

He is now getting 9.5 mls/hour of milk and the nurses are all saying that trying bottlefeeding is coming up soon - maybe at the end of the week. They also say that "recreational" breastfeeding (just to get him practicing, not really to feed him yet) is probably just around the corner as well. Aiden weighed in last night at 3 lbs. 4 oz. I think at around 4 lbs. he will have his second surgery to put his intestine back together - which we are dreading and looking forward to at the same time.

Being held by daddy - look how blonde he is!

He has taken so many steps forward since he has been off the ventilator - it's like he is a different baby. It's hard to believe Aiden turned 8 weeks old on Sunday and I would have been 35 weeks pregnant. I want to stay in the NICU 24 hours a day because I feel like I am missing cute things he does. I can't wait for him to come home. Yesterday I bought him a crib and dresser/changing table. They look like this...

Aiden's condo when he comes home :)

Hopefully he will be home as soon as possible to use it!

Making good progress

Aiden has continued to surprise his doctors and the respiratory therapists, yesterday he was moved to the CPAP that does not give breaths to him but just keeps a steady low pressure going into his lungs and he continued to do well on that. So, today they began cycling him to the high flow nasal cannula, which is oxygen only so he is doing all the breathing himself. His doctor didn't want to change him over to the cannula completely to make sure his lungs don't collapse. So for now he does 6 hours on the CPAP and 6 hours on the cannula. He went through his first cycle today perfectly. I think the cannula is more comfortable for him and we like it better since you can actually see his whole face, so I am hoping he continues to do well on it and can be moved to it only very soon.

Peeking into Aiden's incubator

He is still doing good with his feeds and is up to 8.5 mls/hr. He has still been hovering around the 3 lb. mark - tonight he was 2 lbs. 15 oz. He has lost a little weight during his transition off the ventilator, he has been much more active and is using more calories moving around and stretching out and his doctor is not worried about it. We are also getting to hold him alot more now and I was told today that we can hold him as long as we want :)

Momma holding Aiden with just the nasal cannula on him

We have been so encouraged by his progress we have finally started getting his room together, we stayed up late the other night and painted. Blue, of course. We are going to put up crown molding next weekend then all we will need to do is find some furniture and I can start decorating...I can't wait for him to come home and use it...oh who am I kidding he will sleep in our bedroom until he is 10 - ha ha!

Jeremy having a good time painting

That's all for now!

~ Holly

Life off the ventilator

Aiden is still on the SiPAP machine and doing well. The doctors, nurses and respiratory therapists were talking about moving him to a different type of CPAP machine that does less work for him because they feel he is doing so good on the current one that he actually needs less breathing intervention. One of the Respiratory therapists wanted to move him to oxygen only on a nasal cannula (no breathing for him just extra oxygen) - which is the last step before he is doing everything himself.

He is still doing good on his feedings, he is back up to the 24 calorie fortified milk at 7 mls/hr. and he was able to come off all IV nutrition, which means they finally took the PICC line (IV) out of his scalp. We are so happy to start seeing him come off things and have less wires and tubes! Unfortunately, the doctor said this morning that he had a fever last night (which may just be too many blankets since he can't control his body temp yet) and his blood test was slightly elevated which may indicate another infection coming on. They will take another blood test tonight to see if it is better or worse and start him on antibiotics if needed, hopefully if it is something they will have caught it soon enough that it won't set him back on his breathing.

Daddy gets to hold Aiden for the first time since before Christmas!

Daddy, Momma and Aiden

Aiden has also been busy developing his personality and discovering what he likes (holding hands with daddy, mommy touching his head, the pacifier and putting his hands on his face to soothe himself) and doesn't like (diaper changes, taking his temperature, his feeding tube, taking his blankets off him for any reason and of course, needles of any kind). Since he has been off the ventilator he is no longer getting pain medication/sedation and has been much more active the last couple of days, yesterday he was fussing around and decided he wanted to move his head from the right side to the left side. He picked his head up and got himself face down but needed help getting all the way to the other side - it looked like he was doing a push-up. As soon as he got his head where he wanted it, he fell asleep. He has also learned to use his voice to tell us when he is not happy. He never cries when he is being held :)

Turn the sound on for this one, we had to videotape his crying, since we didn't hear it for almost 7 weeks...we are probably the only parents who enjoy hearing their baby cry when changing his diaper - ha ha!

- Holly

A big day for Aiden

Aiden's new breathing equipment and stylish new hat

Yesterday Aiden hit another milestone - he got off the ventilator! With the help of the steroids he was able to switch from the oscillating ventilator to a CPAP (continuous positive airway pressure) machine. The machine is strapped on with a little hat and blows oxygen through his nose a set amount of times per minute, he is able to take breaths on his own as well. This is a good step for him and although we know there is a chance he will have to go back on a ventilator, his doctor is very happy with his progress so far. He isn't even on that much oxygen - 25-35% and his saturation levels and Co2 levels are good. If it starts looking like needs to go back to the ventilator they are going to give him another round of steroids to get him over the hump because his lungs will start to heal and do so much better on the CPAP. We are so proud of our little Aiden!

Coming off the ventilator - we finally get to see his little face!

Yesterday after the switch he was having a difficult time getting comfortable and falling asleep, he has so many new feelings now - having no tube down his throat and using his nose for the first time. He is also off all his pain medications and sedation now (so he can breathe on his own) so he tried to cry a little, he had a little grumbly cry after being on the ventilator for 45 days so we haven't quite heard his real voice, but it was great to hear noise coming from our little guy for the first time. He was thrusting his little tongue around like he used to do against the tube so the nurse had me put my finger in his mouth and gave me a little cup of my milk to dip it in, he loved his first taste of milk and immediately started sucking on my finger - I'm no expert, but the boy had quite a strong suck going on! Hopefully that means he will enjoy feeding and not have too many problems in that area!

Sucking milk off mom's finger

Also, I got to hold him last night for the first time in 2 weeks! We missed each other and he settled right in and was happy the whole time he was being held. Overall, I would say it was a pretty good day :)

- Holly

3 pounds and some crib bedding

Even with his recent feeding problems, our little man keeps growing so good - he weighed in at 3 pounds last night! He is starting to fill out a little and he definitely has some little chubby cheeks. He has been pretty stable the last few days, he is getting 4 mls/hr of milk and his ventilator settings have not changed that much - still around 30-40% oxygen. Hopefully that will change soon as he finally started the stronger steroid today, he will be on it for the next 3 days and we are really hoping to see some good improvements and get the little guy off the ventilator. I am still just dying to hold him again, I think he misses it too and once he is off the oscillating ventilator and stable we can hold him again...I can't wait!

Daddy doing some containment touching

I went shopping with mom & Sara yesterday and ended up buying bedding for Aiden's room. I have been waiting to buy things but found a GREAT deal and just couldn't pass it up! I bought a quilt, crib bumper, pillow cover, window valance, 3 sheets and a bedskirt at Pottery Barn Kids. I just loved the pattern! So, thank you to Sara's mother in law, Pearl, whose sweet gift we used to buy the bedding set :)

This is what Aiden's bedding looks like (without the PHB monogram in the corner)

OK, one last thing. Since we are limiting Aiden's visitors until he is eating better and stable off the ventilator here is a video taken the other day of Aiden opening up his eyes - the next best thing to visiting him!

I'm a big boy now!

Well, it's official - our little man has gained 1 lb. since he was born! We've been waiting for him to hit this milestone, and we celebrated it in the NICU with some "woo-hoo's" and told him what a good boy he is and how proud of him we are. The next milestone will be 3 lbs - which isn't that far off :)

From 1 lb. 13 oz. at birth to 2 lbs. 13 oz. tonight

Tonight we got to give him a bath. We got to spend an hour giving him his little sponge bath, washing his hair, changing his diaper and "brushing his teeth". They give him a bath every Sunday and Wednesday, but this is the first one that we have gotten to participate in. It is really good to be able to interact with him, I cleaned him up while Jeremy gave him re-assuring containment touch (putting our hands on his head and feet to make him feel boundries, like he would in the womb). He did such a good job, his oxygen didn't desaturate once and afterwards he fell into a good, deep sleep without any sedation.

He has been feeling better the last couple days and has alot more awake time where he just quietly looks around and at us. Yesterday they put the little rails on his bed down and let me get really close to him. I had my hand on his head while I was talking to him (about how much he is going to love coming home, of course) and when I took my hand off his head he craned his neck toward my voice and tried to lift his head to try to find me.

Saying hello to mom & dad

His tummy seems to be doing better, it isn't swollen or purple anymore and he hasn't had very much residual milk left in his tummy - tonight he had none. He is on 3 mls of milk an hour now, hopefully he will tolerate them increasing everyday so he can be back up to where he was soon. He has been doing much better oxygen-wise also, he is usually on about 30-40% and is not desaturating as much as he had been in the last week. Hopefully, they can start the steroid early this week and get him off the ventilator!

A family portrait

Thats all for now - I can't believe he is 6 weeks old today, it seems like he was just born!

- Holly

Not quite how we wanted to start the new year

Well, our little man has some more tummy problems going on. A couple days ago Jeremy noticed that Aiden's stomach looked big - like he swallowed a softball. The nurse and doctor examined him and decided to order an x-ray, which came back normal. The nurse checked his feeding tube for residual milk and found quite a bit and some air also. They continued his feeds since nothing was showing up abnormally on his x-ray. The night nurse found even more residual milk last night so they decided to run some blood tests and take another x-ray this morning - both came back normal also but, the doctor decided to stop his feeds until his belly was not swollen anymore. So he is back on TPN (the IV nutrition) and can't start the steroids to get him off the ventilator until they figure out if something is going on. Yesterday his belly was still swollen and has a blue/purple tint to it again (the same thing happened before his surgery), he is also had some green residual milk coming up - which is not a good sign and also happened right before his surgery.

Today they repeated his labs and x-rays and both still came back normal, the doctors don't know what, if anything, is going on and started his feedings again at 2.5 mls/hr and kept him on his TPN and they will watch him carefully - at 4pm they checked and he didn't have any residual milk (green or otherwise), his tummy was not as swollen and he was pooping just fine. We are still concerned, especially since he is having the same issues that caused an emergency surgery a month ago - and I hate having to "wait and see". We were also really looking forward to seeing him without an IV, seeing what the steroids would do and possibly see him off the ventilator and now that all has to wait for a little longer.

On the brighter side, he did great through his eye exam the other day and doesn't have any issues at this point, they will keep re-checking him every few weeks as issues can occur at any time until he is around term.

Today I got to do his cares - it is pretty funny when changing a diaper and getting eye goobers out of your kid can actually make your day absolutely wonderful! It's one of the few times I get to touch my baby and pick him up - even if it is just for a minute :)

Taking his temperature

Moving him onto his other side

"Brushing his teeth" (cleaning the inside of his mouth and around the tube with antibacterial gel)

Giving him kisses :)

-Holly

P.S. I usually have Jeremy crop the pictures so you can't see his little ostomy bag, but you know what??? He has a poop bag, and I'm OK with that :)