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 :)

Decent Tuesday for Aiden

Aiden has been hanging in there the last couple of days.

Last Sunday we were a little stressed since his ventilator 02 was around 70-80%, and he was still struggling. He still has the occasions where is O2 saturation goes up and down at random so the NICU nurses are constantly having to adjust his O2.
One minute Aiden will be at 97% saturation and then the next he will be in the low 80's. It can be very frustrating to watch.
Today his O2 was between 35-50%, so Holly and I are breathing easier(no pun intended).

Getting ready to be moved - his forehead is wrinkled which means he's just not that sure about whats going on!

He is still on the oscillating ventilator so possibly tomorrow (Wednesday) he will be given another steroid called Decadron so give him a boost and hopefully get him off the "os" vent.

Aiden is digesting his milk very well and is currently being fed 6.5ml per hour. Tonight he weighed in at 2lb 9oz, only 4 oz's to go and he'll weigh a full pound more than when he was born!

Aiden will be given his 1st eye exam tomorrow, we were told that this can be stressful for Aiden so not to be surprised if his ventilator settings are higher when we visit tomorrow.

Tonight Heather was working in the NICU, so far she's the only nurse who actually jumps into the picture instead of out of it ;)

We put this picture on here so that Heather's dad can see that she actually works when she is at work...the gloves prove it!

Aiden's breathing tube needed adjustment tonight so we got another chance to actually see him without tape on his face. Just as suspected he is Holly from the nose up and Jeremy from the nose down......definately the "Nicolls" chin !

Doing better...

Aiden is recovering from his infection, so far they have ruled out any major infections like sepsis or menengitis. They think he may have had a little pneumonia, but not that bad since aside from his oxygen saturation he was acting normal - even more active and awake actually. He is still back on the oscillating ventilator which they moved him back to from the conventional ventilator on christmas eve - which is a step back but it is what he needs right now to get better. The only bad part is that when he is on that ventilator we can't hold him...I think he misses being held, too :( We are hoping he recovers quickly and can be weened off the ventilators soon - we really want to know what the lower half of his face looks like without the tape covering it up!

We snapped this picture last night when he was checking everything out...

Last night Heather got to be his nurse, we will make sure to tell Aiden when he is older that she poked him in the foot to do a blood sugar test and got to change his ostomy bag - I'm sure he will love that! She weighed him and he is up to 2 lbs. 7 oz. now and they are increasing the calories in his milk today (they add a fortifier to my milk). So, he is doing good on his feedings - which is a good sign!

- Holly

P.S. I wanted to include this picture of Aiden's first christmas tree - my dad really wanted us to have a tree this year and brought over a little live tree. Although Aiden didn't get to see it this year I put all of his presents under it anyway and we will put it in his room every year!

Aiden's first christmas tree

Christmas and a scare

Merry Christmas!

Aiden gave us yet another scare yesterday. He has developed an infection of some sort, they are still waiting on some test results to see what type of infection he has. The results take 3 days to come back, hopefully it is nothing serious and in the meantime he is on 3 different antibiotics to cover all the bases. He started needing more support to breathe and it tipped the doctors off that something might be up - although I had been thinking that for several days. He has been acting completely normal but it wasn't normal for his oxygen saturation levels to go down as often as they were. When we left the hospital yesterday he was being given 80% oxygen, he hasn't needed that much help since he was first born. They ran some tests on his blood and lung secretions and they both came back positive for infection.

He gave us a good Christmas though, when we saw him today his oxygen saturation level was much higher, his Co2 much lower and they were only giving him 35% oxygen so he seems to be responding well to the antibiotics - we are still holding our breath though! It made me feel better to know that our favorite night nurse (aside from Heather, of course!) was there last night and tonight to care for him. When we got there today we found that she had stuffed his stocking that I made for him with some perfect gifts for a baby in the NICU - a preemie pacifier and some VAP guard (swabs that prevent infections from the ventilator) and candy for mom & dad. It was so sweet since I forgot to stuff his stocking before we left yesterday.

A good yawn after mom & dad said goodnight and read him a story

We brought down Aiden some Christmas gifts today and opened them for him and told him what he got, read him a Christmas book and stayed for a few hours. Right before we left he opened up his eyes for and visited with us for a little while. Before we left we wished him a Merry Christmas and told him what a good, strong little boy he is and to keep up the good work and of course that mommy & daddy love him VERY much :)

Merry Christmas to everyone!

- Holly

Cuddling with Aiden

We have been holding Aiden everyday now for at least an hour. We hold him on our chests against our skin with him in just his diaper, it is called "kangaroo care" and studies have shown that it is very beneficial for preemies and increases their weight gain and overall health (not to mention it is good for us, too!). Aiden loves it, he cuddles right in and usually has some active time with his eyes open responding to our voices and then he falls into a good sleep. One of the best parts about holding him is feeling his little hand curl and uncurl against our skin - so sweet.

Cuddling with daddy - wide awake, but he fell fast asleep a few minutes later...

Either he looks really small in this picture or my head looks really big :)

He has been doing well this week, he does have a new thing going on where his oxygen saturation level dips into the 70's (usually it is around 95%) for a few minutes. The nurses and doctors say it is a normal part of his lung problems at this age and he recovers from it himself without extra oxygen, but it makes mommy and daddy a little nuts. He is quite a little trooper with his feedings, he is up to 5 mls of milk an hour (last week it was 1 ml/hr) and it is now being fortified to give him extra calories and his IV nutrition has been steadily decreasing.

I think we are starting to see some changes in him, signs he is getting stronger and older - little things that aren't even a milestone for full term babies...he is starting to curl his hand around our fingers stronger and more purposely, his ear cartilage is forming, his cheeks and legs are starting to fill in a bit, he slowly finding his fingers and thumb with his little mouth and he has times where he is just happily wide awake looking at us. It is really cool to see him developing!

- Holly

Santa Claus visits the NICU, too!

This morning Santa and Mrs. Claus came to visit all the babies in the NICU. The nurses got the babies all decked out in Christmas hats and blankets and took their pictures with Santa. Santa left all the babies filled stockings and hats also - it was so cute!

Aiden and I with Santa and Mrs. Claus

Consider this one our Christmas card this year!

With Aiden not being home and with all the ups and downs of life in the NICU it's hard to remember that this is his first Christmas. After my visit today I went out and bought him some Christmas presents and we plan on making sure his first Christmas is special for him and us, too!

I just had to buy this preemie shirt for Aiden for Christmas - too cute!

Other than that, Aiden is doing well today. He is being weened off one of his medications and it is affecting his breathing a little, nothing too bad, just something to watch. He weighed in last night at 2 lbs. 3 oz. so all the milk he is getting is starting to do the trick, several of the nurses that were gone for a few days have commented that he looks bigger and different - one said she is starting to see some little chubby cheeks :) Today he was wide awake for about 10 minutes just hanging out and looking around, I had never seen his eyes wide open like that before - another sign that he is getting older and bigger!

-Holly

P.S. Aiden wanted me to make sure and say Happy Birthday to his Aunt Sara :)

Finally...my chance to hold my boy

I got to hold Aiden for the 1st time today.

I was a little nervous about holding him.

I knew he was a little guy but actually holding him really is a different perspective.

He looks so fragile that I'm afraid that I may accidently hurt him.

He settled into my arms OK and would occasionally open his eyes when I would talk.

I held him for about 45 minutes :)

Today was our early day since I have to go to work tomorrow so we weren't there for his daily weigh in. He is on a continuous feed now which is 2ml per hour.

Even though we had to go home at 6pm, Holly still read Aiden his bed time story.

A good Tuesday

We got into the NICU around 4:30 and Nurse Bree ask's if we would like to hold him!

Holly has been bellyaching to hold Aiden again so I gave up my chance so Holly could have some more time with him.

Bree told Holly that we would try for 1/2 hour, it all depends on how Aiden takes it.
Of course Aiden loved being with his mom and his stats never decreased.

The RT was always hovering around just in case there was a problem though. Holly ended up holding Aiden for about an hour.

Aiden continues to thrive on the conventional ventilator, and they are continuing to increase his feedings. Yesterday he weighed in at 2 lbs 0 oz :)

Aiden's Monday Update

Holly and I wanted to have a night at home today so we visited Aiden earlier than normal.

We arrived at the NICU around 2pm. Aiden's stats were good and were told by Aiden's nurse (Dawn) that she didn't have to sedate him all day. He was sleeping peacefully all on his own :)

The plan for the day was to put a bag over his stoma. Since his surgery they had just had a couple gauze pads to cover it. Since Holly and I were there we were allowed to help out by keeping Aiden calm and to keep him still while the nurse fitted him for the bag. This procedure took about a 1/2 hour. Towards the end of the procedure the physical therapist came by to work on Aiden's arms and legs. Aiden was definitely getting alot of attention this afternoon. He was handling it very well though.

This is me and Holly holding Aiden up while nurse Dawn changes Aiden's bed linens.

The picture may look scary with all the wires, but most of them are just sensors. Aiden only has one IV along with the breathing and feeding tubes. You can see the newly "installed" stoma bag sticking out of Aiden's diaper. The bag is about as big as him.

After all the procedures were completed there was one time where Aiden's O2 levels started dropping. Among other things, stress can really play a role. His O2 dropped to 82, which really isn't that bad but it's better to be in the low 90's. He started moving his arms and legs a bit and was obviously becoming stressed. Holly put her hand on his feet and I put my hand on his head. His O2 saturation started to climb almost immediately as he calmed down because of our touch. Seeing his reaction on the monitor really made it clear of the impact we can have on our visits. Most of the time there is a feeling of helplessness. The NICU staff has always told us of the importance of parent visits and how it really is a benefit to the baby. It really made me feel good that our touch was soothing & beneficial to Aiden.

Aiden's 3 weeks old today

...or if you go by his gestational age he is 30 weeks.

Fortunately I don't have much to report.

Aiden has continued to do well on the conventional ventilator.

We get a daily phone call from the NICU doctors to give us Aiden's status. There is one doctor in particular who has NEVER sugar coated anything for us and seemed to always give us a gloomy outlook & worst case scenarios. This morning that doctor surprised us and actually said "Aiden is doing quite well".



Aiden is being fed more milk everyday. The idea is to get him off the IV nutrition(TPN) as quickly as possible. He gets a little more active everyday and is opening his eyes more and more. The nurse's tend to sedate him when he gets too active though since they don't want him "fighting" the machines or exerting too much energy. His swelling has gone down considerably which made him lose a couple ounces of body weight. Tonight he weighed 1 lb 14 oz.

Holly gets a birthday wish

Holly got to hold Aiden for the 1st time today.

Unfortunately I wasn't able to be there however the nurse took a couple of pictures.

The plan was to allow him to be held for 15 minutes, but he tolerated it so well they let Holly hold him for 1/2 hour.

Needless to say, Aiden was having a good day :)

If you look closely at the 2nd picture you can see Aiden has his eyes open. Holly said that everytime Holly started to talk to the nurse he would look up at her.

Today Aiden was switched BACK to the Galileo ventilator that allows him to exercise his lungs.

We assumed he would be on the oscillating ventilator a bit longer since he switched back to it only a couple days ago.

This evening on our visit Aiden's stats looked good. When they turned him to a different position his C02 started to climb. Because of that the RT said it was possible he would put him back on the oscillating ventilator.

Holly read Aiden "Goodnight Moon" again. Tonight Aiden kept opening both his eyes every couple of seconds as Holly read.




He looked pretty cozy and ready to sleep so we told him we loved him and that we would see him tomorrow.