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.

Happy Birthday to Holly...and a good day for Aiden

Holly turned 31 today. We recieved a good report from the doctor this morning so it started her day off right.

The doctor said she was pleased that Aiden stayed on the ventilator(the one he was taken off of yesterday) for so long. Because he had stayed on that ventilator for several days, she was optimistic with Aiden's future developement.

I went back to work today.... didn't want to but didn't have much choice. I want to save my vacation time and "baby bonding time" for when Aiden comes home.

I came home from work today and Robyn, John & Grandma Marlys were already there with dinner cooking and a birthday cake for Holly. They knew we were sick of restaraunt food and were in a hurry to the hospital so they made chicken & noodles for Holly's b-day.

John took care of my "chores" and as soon as we were done with dinner Holly and I drove down to Mercy SJ.

He was still doing fine.

We got there right in time for Aiden's "care" time. I got some more diaper training :P

He seems to be getting better at being handled a bit more. At first he would make faces when he was bothered. He squirmed a bit as I changed his diaper but that is probably my fault since it get's cold "down there" and I'm not too incredibly fast at changing diapers yet.

We could only stay for a little over an hour since I have to get up early, but at least I got to hold his hand for a while and Holly read him a bedtime story.

Tuesday strikes again.......

Holly has noticed that we usually have bad days on Tuesdays.

Holly and I went to sit with Aiden early today since she had a followup doctors appointment at 11am. BTW, Holly can drive her car again...good thing since I was planning on going back to work tomorrow.
We arrived at Mercy SJ around 12:30pm and noticed right away that Aiden's Co2 was higher than it should be. The RT's like to see the reading around 50-60, when we arrived it was about 86 and it continued to climb. His O2 saturation was fine, in the mid 90's. When the Co2 read's high they usually re-calibrate the monitor, adjust his O2 intake, and/or move the sensor to a different location. If after all adjustments the reading is still high they will check his "blood gas", which involves drawing some blood and the RT test's it manually. I've watched them draw blood from Aiden before so I sat and watched todays attempt. Veins on little babies aren't as visible as they are on adults so basically the NICU staff have to "feel around" for a vein. I won't go into detail but it took about a 1/2 hour to get some blood from Aiden, in the meantime his C02 kept rising. After they were able to draw some blood they also decided they were going to give Aiden some milk. Aiden's nurse (Dawn), told us that now would be a good time to take a little break since she was going to have to replace Aiden's feeding tube. I guess she thought we looked worried enough already to have to sit through that procedure.

We came back around 20 minutes later. The new feeding tube had been inserted and at that time Dawn told us that they had decided to switch back to the oscillating ventilator that Aiden was initially using when he was born.
Apparently Aiden's C02 levels were a little lower than the sensor was picking up but it was still high enough that they were concerned.

While the "new" ventilator was being set up Holly fed Aiden via the feeding tube. We'll see how his little belly handled that when Holly makes her nightly NICU phone call.

Aiden's Co2 levels started to drop almost immediately when they switched ventilators.

When we left the NICU, his C02 was in the low 70's. We were told that the sensor does usually read about "15" high, so really his C02 was in the 50's.

So it was a tense day in the NICU, but definately better than the previous Tuesdays.

Sorry, no pic today.

Holly tried to get a picture of Aiden trying to suck on his pinky but it was a bit dim in the NICU so nothing was coming out OK

Aiden's Sunday Update

Aiden has had a good couple of days where he could recuperate.

He hasn't had any new issues arise, and he is recovering well from his surgery.

The nurses and RT's continue to include Holly and myself in the little tasks such as changing his little diaper, cleaning him a bit and swabbing his mouth with a gel that will prevent infections.

He was weighed tonight.... 2 lbs 1 oz.

He hasn't been given any milk since his surgery, but they do give him an intravenous TPN (Total Parenteral Nutrition) and lipids.

He may be fed some milk in the next couple of days to see how his little belly takes it.

12/06/08 Update: Aiden Nicolls

After Aiden's surgery he continued to make good progress.

Good enough progress that the doctors felt he was stable enough to move him back to Mercy San Juan.

We received the phone call on Thursday (12/5) around 8:30am that they planned to have the Mercy transport team pick him up around noon that day. We would receive another call as the plans were confirmed by both hospitals. Around 10:30 Aiden's nurse called and told us the plans were moving forward.
Holly and I wanted to be down at Sutter Memorial before he was moved so we got ready and drove down. As we were pulling into the parking lot I saw one of the respiratory therapist from Mercy jumping out of an ambulance. We were glad we were compelled to get down to Sutter quickly. We thought we were supposed to get a phone call from Mercy to authorize Aiden's transfer/care back to them BEFORE they picked him up.

Holly and I scrubbed up and went in to see Aiden. About 20 minutes later the NICU transport team finally showed up. We later found out they spent about 1/2 hour riding the elevators, they said they forgot which floor the NICU was on. We had a good laugh with them on that one.

The nurses talked about what medications and support Aiden was currently on, matched the settings on the Isolette gurney, made sure he was stable on their equipment and about 20 minutes later Aiden was on his way back to Mercy.

Aiden's ambulance ride went as planned, though the respiratory therapist said she had to increase his oxygen a bit...no big deal.

Holly and I watched as they got Aiden settled back in. Hopefully he won't have to take anymore trips soon. Holly tends to make "middle of the night" phone calls to check on him. Our favorite night nurse Sheila was taking care of him, so I'm sure Holly slept better after that.

This morning one of the doctors called and told us that she was pleased with Aiden's progress and that today he will get a fairly easy day. Aiden has graduated to a new ventilator that in a sense "trains" him to breathe on his own.
He may get another head ultrasound, that is pretty non-invasive. Only a little goop on his head :)

Changing my 1st diaper....this one's for you Sara.

12/03/08 Update: Aiden Nicolls

We had a little scare on Tuesday.
Basically, the doctors at Mercy were concerned about the lack of poop that Aiden was....pooping.
They also saw what they described as an "air bubble" in his intestines.
They performed a procedure where they put some dye(barium) and then take several x-rays over several hours so they can track the dye moving through his system.
Later that day, one of the doctors told us that the dye had moved through the area in question, however they were going to get a second opinion of a surgeon.
On Tuesday the surgeon called us and informed us that he had taken a look at the x-rays and felt Aiden was in need of immediate surgery.
The surgery could not be performed at Mercy since they did not have a pediatric anesthesiaologist on staff.
The surgery would have to be performed at Sutter Memorial off of 53rd street.

So we rushed down to Mercy, told Aiden how much we loved him and to continue to be the strong little fighter that he is.
We noticed right away at how blue Aiden's little belly was. We aren't 100% sure if it's from an infection or from the dye.
The Sutter NICU transport team showed up around 5pm.
They matched all of the various settings on all the machines to the transport equipment, made sure he was stable and Aiden took an ambulance ride to Sutter memorial.
Around 9pm they took Aiden in to the operating room.
We were told that the longer the operation took the better it would be.
If there was enough "good" intestine it would take the surgeon longer to get him sorted out.

Around 11pm one of the nurses poked her head in the waiting room and said the surgeon would be in in a few minutes, then gave us a quick little smile.

The surgeon came in and told us that everything went well and that he only had to remove a small section of intestine.
What happened was a bit of meconium had perforated his intestine and had caused an infection.
They are leaving and open end of his intestine out of his little body for 6-8 weeks until everything clears up and then he will require another surgery at that time to re-connect his bowels.
The surgeon told us this surgery is pretty routine and he doesn't forsee any problems.
Apparently this is a fairly common problem with preemies.

Around midnight Holly and I went to Aiden's bed to check on him and to say goodnight.
He didn't move at all. Normally when we touch his hand he would hold onto our finger a little.
He was OK, just the effects from the anesthesia.

He has backtracked a little in his developements from last week.

He is hanging in there though.