Sunday, January 31, 2010

1 Month and 1 Kg!

Today Nicholoas is 30 days old, 1 kg (2.2 lbs) and 14.5 inches long, which means he is getting to be quite a big boy. Today with his afternoon "cares," which are the highlight of our day (afternoon cares involve changing his diaper, taking his temperature and blood pressure, washing his face, and measuring his belly) he was very awake and alert. Seeing his eyes and having him "notice" us makes us both very happy. During his cares today, the nurse made us little footprints (hence the picture.) For a point of reference, the footprints are on an index card. The nurses and doctors have all been great, and really make every effort to have us involved in his care. Being able to just be in his room all day (in a private room) is one of the best features in the design of this NICU. It is hard enough to have a child in the NICU and not be able to "bond" normally, but if we also had to be in a traditional NICU with 6 - 10 other babies in one room, that would make an already tough situation really tough. Speaking of bonding, since Nicholas is doing so well with Kangaroo-ing, we are going to be able to hold him every day vs. every thrid day. I see a "new highlight" of the day coming.

Friday, January 29, 2010

A little awake time

Nicholas has done well over the last couple of days. His PICC (type of IV) clotted yesterday, so, they pulled it. The worst part for Nicholas was having the tape removed; he was not happy. I did get to hold him for awhile in the afternoon which was nice for both of us. Denise M is looking forward to Sunday, which is her day to hold Nicholas. Today, they changed him to CPAP only. The Biphasic CPAP basically gave him a certain number of breaths, the CPAP reminds him to breath rather than giving breaths; a step in the right direction. His oxygen requirement continues to decrease, (he is in the mid-20's, which is getting closer to the 21% room air target) also a good sign. He is up to 12 cc of fortified breast milk every 2 hours. They fortify it to give him more calories, which helps him grow. He has lost more weight than he has gained over the last three days, not uncommon when coming off the vent. They say he burns a lot of calories breathing on his own. If we could lose that amount of calories by breathing we wouldn't be looking for somewhere to workout. We took the picture attached during his hands on care. He was very alert and enjoyed the brief respite from his CPAP hat.

Wednesday, January 27, 2010

A Low Key Day.....

Day 1 off the ventilator has gone well. They have been able to turn his oxygen down (he's at 26 - 30% - room air is 21%) as well as his CPAP settings. He is maintaining his oxygen levels well and not dropping his heart rate (always a good thing). Nicholas is even starting to get "chubby chipmunk cheeks," which are very cute. Today, Denise and I were invited to a Family Advisory Council lunch here at Rainbow. The Family Advisory Council looks for ways to improve the "family experience" at Rainbow. We showed up with a typed list of ideas for improvement, as well as things that are really great. The other families looked at us like crazy "over-achievers." The host said they are always looking for people with good typing skills to join the group. We're not looking to get involved in any other long term commitments at Rainbow but would like to think we'd be a good asset to the group :).

Tuesday, January 26, 2010

Then and now: A step in the right direction

They extubated Nicholas this morning and he is doing well on Biphasic CPAP. He seems to enjoy the freedom he has with his head and even though he has constant air going through his nose, we're sure he likes that better than the tube down his throat. We put in the picture of him intubated because he was very alert and you can see him with both eyes open. Today, he's all snuggled in enjoying some peace and quiet after the busy morning. We know we'll be here for at least a couple more months but seeing the slow progressions helps us realize we're all getting closer to going home.

You might notice in the second picture, a large blue stuffed hand (it's essentially a bean bag in the shape of a hand). It is called a "Zaky" and was a gift from friends to Nicholas. He really enjoys it and in fact, one of the nurse commented that the NICU is looking to purchase them (he is really on the cutting edge!)

Monday, January 25, 2010

Can I pull it out now?

Nicholas is having a good day. His chest x-ray looked better today, and, they have decided to extubate him tomorrow morning. They are going to do it first thing to really watch him closely throughout the day to make sure he tolerates it. He will be going on Biphasic CPAP which is a step between the ventilator and CPAP. We hope and pray that he will do ok with it and be done with the ventilator in this lifetime. Denise got to hold him today. Her true day is tomorrow but with all they will be doing, they decided to let her hold him a day early. She was thrilled for the opportunity. He continues to tolerate his 10 cc, 24 calorie breast milk, which is great. We'll keep you posted on the outcome of tomorrow morning. Thanks for your continued thoughts, prayers and words of inspiration.

Sunday, January 24, 2010

A Gamble and a Prayer.....

First, sorry for not making a post last evening. The day got away from us and before we knew it, it was time to head home and we had not signed into the blog. Overall, Nicholas continues to be stable and has even shown modest improvement in his lung status since we started the steroids. They continue to wean his settings and we are making progress towards getting him off of the ventilator. We both knew that starting the steroids was a bit of a gamble, but unfortunately it was our best hope of improving his lungs. We appreciate everyones prayers and good thoughts. Yesterday was a good day for Denise R (and Nicholas) as Denise was able to hold him for over 3 hrs! They both loved it. Nicholas was very relaxed and happy. I'm looking forward to Tuesday, which is my day to hold him :). Nicholas has been pretty fiesty and active (which is great) and even lifted his head and moved it to the complete other side. All good things, but wish he would wait until he was extubated to try these new tricks. He is off of the IV feedings and getting all his nutrition from breastmilk. He really cries (though he doesn't make a sound due to the ET tube) when he is hungry! His feeds are up to 4 ounces a day (he gets about 2 teaspoons every 2 hours) and his weight is now up to 2 lbs. 1 ounce. I won't mention what our weights are up to, but we also eat about every 2 hours! As for the picture in today's post, this is Nicholas's typical one-eyed check as he is Mr. Curious.

Friday, January 22, 2010

A bend in the road

We have finally started to turn a corner, or at least reach a positive bend in the road. The steroids are kicking in and the nurses were able to start weaning him from the vent. They thought they may be able to extubate him tonight but it will likely be tomorrow or Sunday if he continues to do as well as he's done. They are giving him another blood transfusion tonight as his hematocrit was down and having more red blood cells (they carry oxygen) will help with extubation. Luckily, he will get blood from the same donor as his previous transfusion. Thanks to all of you who donate blood, we appreciate it! We hope tomorrow will be even better. A lot of you like the pictures. I promise we'll post one tomorrow.

Thursday, January 21, 2010

Can I please participate in your research study?

Things are going fine today. We're hoping the steroids Nicholas was started on last night will kick in within the next 24-48 hours and we'll be able to start weaning him from the vent. They'll stop them after 3 days if we haven't seen any improvement. His weight is up today, he's 2lbs 1 ounce. He even looks a little bigger. He is up to 8.5 cc of breast milk every 2 hours and goes up to 9 cc's at 9 tonight. The nutrients he gets from the breast milk is so much better than the TPN he gets through his IV, so, we are thankful he continues to tolerate his feedings. Nicholas has already been a part of two research studies, one on low blood pressure within the first 24 hours of life (luckily he didn't fit the criteria) and the other, a study on brittle bones. If possible, Nicholas tries to participate in the research knowing what they learn will help other preemies in the future. We'll try to capture a good picture of Nicholas for the post tomorrow.

Wednesday, January 20, 2010

A day of mixed emotions

We certainly have rode the NICU roller coaster today. This morning, Nicholas had a less than optimal blood gas result, so, they had to increase the rate on his vent. His oxygen saturation was all over the board again today, but, he tended to go lower and take longer to come back up. The neonatologists have been talking to us about starting Nicholas on steroids as his chest x-rays continue to show inflammation. With the fluctuation's today, we agreed to start them. The head of the department, who also has run many of the steroid studies they have done at Rainbow, came in to talk to us and was helpful in answering questions we had. She said they literally only give Dexamethasone to 2% of the babes and that Nicholas is a great candidate as someone who would benefit from this medication. The good news for this afternoon was that Nicholas's blood gases were better and Denise was able to Kangaroo with him tonight. That made both mom and baby happy. Nicholas tolerated it well and they were able to kangaroo for about 1.5 hours. It was an "amazing feeling" for Denise to finally hold Nicholas.

Tuesday, January 19, 2010

Make the Beeping Stop.....

Nicholas continues to be status quo, which is good news, but we would prefer that he instead aim for some improvement - he is becoming a "NICU Slacker." The title of today's blog refers to the constant beeping of his pulse ox monitor which monitors his oxygen saturation. It beeps if he goes too high or too low - we are addicted to watching the monitor. We see "patterns" in the constant cycles of the pulse ox and even try to share our observations with the respiratory therapist to no avail. The mommies are planning to leave early tonight and get some dinner (and a martini for the non-breast feeding mom :) in hopes of making the beeping disappear.) I think the staff is more excited than us that we are taking a little break.

Monday, January 18, 2010

A Quiet Day.....

Today is day 15 in the NICU and Nicholas is having a quiet day, which makes his mom’s very happy. He continues on the ventilator. They are trying to wean his settings to hopefully, get him off the vent and moved back to CPAP (the face mask that smashes his little nose and makes it hard to see his cute face). Nicholas continues to baffle the doctors here as to why he was on CPAP and room air for 9 days and then needed the ventilator and oxygen. While they are checking into every possibility, the leading contender is just “premie lungs of a whimpy white boy”. The course will continue with daily chest x-rays and blood gases (he may glow in the dark by the time we get discharged). He had his second heart echo this morning and all looked good, which means our theory of a PDA causing the oxygen fluctuations did not pan out – but that’s alright, we like any bit of good news. His feeds of breast milk continue to increase (he is now taking at a little more than a teaspoon (6cc's) every 2 hrs), which means we can now turn down his intravenous feeds. As an aside, last evening Nicholas had a good “bowel clean out” – hard to believe so much could come out of such a little guy. Even with this little blow out, his weight went up to just shy of 2 lbs. Nicholas continues to display his fiesty personality and even seems to have a bent toward "drama" (refer to todays picture). When he has had enough of us "bothering him", he puts his hand over his face! As for all the "stuff" you see around him, premies like to feel "cocooned" and secure. His favorite position is on his belly with his feet tucked up tight under him. Until tomorrow......

Sunday, January 17, 2010

An hour respite from my isolette

Nicholas is having a good day today. The highlight for us was that I got to kangaroo with him (see link for more details on Kangaroo Care: The gist is that I got to hold him for about an hour and a half, skin on skin. It was amazing to finally get to hold our little guy. He looks small but feels so much smaller. Denise will get to do it in 3 days (we can do it every three days until he is bigger) as having us both hold him in one day will be too much for Nicholas. She can't wait. He tolerated the kangarooing well and we got some good pictures. He is up to 5cc of my breast milk every 2 hours and continues to tolerate the feeds well. He has another chest x-ray in the morning to make sure things look better and another echo cardiogram in the afternoon to make sure everything continues to look good (no PDA:
He has grown a bit over the last week (he is now 14 inches!) and we look forward to his continued growth in the coming weeks. Happy 2 week birthday, Nicholas! ....and the Vikings won today!

Saturday, January 16, 2010

"Wimpy White Male"

Nicholas is doing ok today. Dr. Baily said he's acting like a "wimpy white male." Really, Nicholas is feistier than most but that is the term they give to preterm white males. As far as statistics go, white males do the worse, black females, the best. He hasn't had any bradycardia's (drop in heart rate) today but continues to fluctuate in his oxygen saturations (which means his monitors constantly beep). He comes back up on his own for the most part, which is good. He tends to drop his sats most when being suctioned (who wouldn't) or doing diaper changes (which for some reason takes a really long time on such a tiny person). I attached a picture of his diaper next to a newborn diaper. His diapers, well everything including a little pacifier, are so tiny. As a side note, since we have had many inquires, the blog is drafted daily by Denise R. and then proofed by Denise M. On the weight front, Nicholas gained 70 grams over the last couple of days and is now 1lb 15 ounces. We're excited for him to hit the 2 lb mark. He is getting 4cc of breast milk every 2 hours via a tube that goes from his mouth to his stomach (he doesn't have the suck and swallow thing down yet) and tolerating that well. They are increasing the feeds 1/2 cc every 12 hours. Gradual increases until we reach 9 cc's which meet his nutrition intake requirements. We will continue to hope for a quiet Saturday afternoon and look forward to tomorrow, as we may be able to "kangaroo" with him tomorrow (hold him! finally :). Have a good weekend and go Vikings!

Friday, January 15, 2010

Little Guy

The pictures we have posted of Nicholas don't represent his size very well. Therefore, you can see we took a picture of Nicholas's hand in Denise's. Really, his whole body would fit in her palm. We tried to capture his foot in her hand but he was less cooperative with that. He is doing better on the vent today. His chest x-ray this afternoon looks better than yesterday, which we are thankful for. We had a pulmonology consult today. Overall, they think the set back is related to his prematurity but they want to rule out other things that might be the cause (infection and surfactant deficiency are two). We downloaded some lullabies today and put our iPod in the isolette for a half hour in the am and pm. Nicholas seems to enjoy the music. We hope to have an uneventful weekend and hope you all enjoy your weekend as well.

Thursday, January 14, 2010

Another rough day

Nicholas was working extra hard to breathe today, his sats were all over the board from 75 (bad) to 96 (good). He couldn't keep them consistent, therefore, to give him a bit of a break, they decided to reintubate him. They also drew a blood culture and other labs to ensure he doesn't have an infection. He wasn't on oxygen and his chest x-rays looked good until day 9 of life, hence, looking for other sources of his oxygen levels fluctuating. Days like this make us both feel like we have run a marathon. We're emotionally exhausted. No wonder why we crash at the end of the day. Nicholas fought the intubation tube and even had a strong cry which are all good signs that he doesn't have an infection. At best, he'll be intubated for 24-48 hours just to give him a break and allow him to focus on growing. The picture was taken right after they were finished. Without the CPAP cap, you can appreciate all his black hair. He also has a peripheral iv in his left hand, hence, the big white boards to protect it. Our little guy is a fighter and even though we knew this could happen, it's never easy when it does. It seems like we take one step forward and four steps back. We thank God for our little guy and for the strength we have in each other.

Wednesday, January 13, 2010

Too much for one day

Nicholas had quite the day. It started out with a lab draw that showed his hematocrit was down to 26. Therefore, they decided to transfuse him with PRBC's. Prior to the transfusion, he had to have an IV inserted; one attempt this time, which Nicholas and his moms greatly appreciated! The blood is transfused now. Hopefully, that will help increase his RBC's and therefore his oxygen sats (sorry for those not clinical, I try to explain some things and figure you can google the terms you are not familiar with). Over the last couple of days, Nicholas has dropped his oxygen sats and had more bradycardia (low heart rate) episodes. He had a chest x ray this morning to check his lungs. This afternoon, Dr. Bailey (neonatologist) came in to speak to us about the results - you can imagine our anxiety, especially when she made sure we all had chairs. Turns out the chest x-ray from this morning was vastly different from previous ones. Much to the docs surprise, they didn't expect to see such a difference given how well he has done to date. She anticipated seeing some atelectasis (collapse of part or all of the lung), but instead his lungs showed early signs of inflammation that could be driving the need for more supplemental oxygen and the pressure on his CPAP to increase. The proven treatment to help with this condition to prevent long term damage is INO or inhaled nitric oxide. They put that right into the oxygen he is already getting through his CPAP. He will be on it for 21 days. More information about the treatment can be found here: They increased his feeds today by 1/2 cc every 12 hours. They also did a head ultrasound that was normal (very good news). Everything else in the chest x-ray was normal as well - some good news in our day. We ask that you keep us in your prayers and thoughts and send Nicholas good energy to continue to grow and for his lungs to improve with each coming day.

Tuesday, January 12, 2010

Status quo

Things are going well today for Nicholas. I almost didn't post an update because there isn't much to share. He's required a bit more oxygen today but still doing well overall. Tomorrow is a big day as he has labs in the am, a follow-up head ultrasound (first one was normal), they plan to increase his feeds and it's his last day of antibiotics. Our highlight of the day is 3pm when we get to do his daily cares (temp, diaper change, mouth care and repositioning). We switch off each day. Denise did a fabulous job today, even though she complains that I act as the lead supervisor :). It's amazing how long it can take to change a diaper on someone of Nicholas's size. We'll keep you posted on the results of tomorrow and try to get another picture to share.

Monday, January 11, 2010

Honeymoon is over

Nicholas is still doing well but forgets to take deep breaths regularly. Therefore, his sats have dropped a handful of times today. He's also had some drops in heart rate. Both come back up within a reasonable time frame, but we'd prefer not to hear the monitor beep. They say after birth, there is a time period in which everything is going well, called the honeymoon period. Then, things may back track a little. His labs have looked good the last couple of days, so, no blood transfusion and they are going to draw his labs every other day versus every day. They draw his blood via a heel stick; every other day is much appreciated in that regard. We left for about an hour yesterday afternoon and bought the little guy a couple of outfits. We figured he could use some motivation to grow, with two moms, he's sure to be stylish. We take one day at a time and are grateful for each day our little guy does well.

Sunday, January 10, 2010

One week old today

Nicholas is having a good weekend. He didn't require blood yesterday and his hematocrit levels are slowly climbing. They may still need to transfuse him but are holding off for now. His peripheral iv didn't flush last night, so, had to be pulled. He still has the PICC but they don't transfuse through that; therefore, they would need to start another peripheral line if he does require blood. We're keeping our fingers crossed that he won't. He has occasional A's and B's (apnea and bradycardia) which usually come right back up without stimulation; normal for his size. His weight is still below his birth weight but we're hoping with the small feedings (which will be continued for 5 days and then increased) he'll start to put on a few grams. He's tolerating the feedings well. As you can see, he is on his stomach today. He loves his stomach and now that his umbilical catheters are out, he can spend more time in that position. We're thankful for a quiet weekend and appreciate your continued thoughts and prayers.

Saturday, January 9, 2010

Nicholas's NICU Room

Things are going well today. Nicholas required a bit more oxygen over night but is being weaned from it today. He tends to stretch and knock his CPAP mask off his nose. We think that could have been part of the cause of his sats dropping in the night. His hematocrit was down a bit today, so, they drew a CBC now to check the level again to see if he needs a blood transfusion, common for neonates as they can't reproduce their RBC's efficiently. They were successful in getting his PICC line in yesterday afternoon; a big relief for us. I doubt he'll ever be a blood donor after all the sticks he has gotten during his short duration of life. I have included some pictures of his room. Rainbow Children's is ranked 2nd for NICU care and have a renovated NICU. Each patient has their own room with a fold out couch, rocking chair and many other amenities that lend themselves to focus on family centered care. We're thankful the set up is not a pod like environment as it would be harder to be here as much as we are. You may have noticed the big bear on Nicholas's isolette. We call him Mr. Bear and put him there to watch over the little guy for a brief time this morning. It's amazing how the little things can amuse us these days.

Friday, January 8, 2010

Hanging out on the beach

Nicholas is under the bili lights as his bilirubin was a little elevated last night.The levels are better now, but they like to keep him on them for 24 hours, so, they'll take him off around 0400 Saturday morning. He looked very relaxed this morning and with the lights on and eye shield, looked like he was just soaking up some rays. If he only knew we were planning a beach vacation next week, he could have soaked them up in a different sort of way. We are already planning a vacation for next January, we all deserve it! They attempted his PICC again this morning without success. Instead, they put in a peripheral iv for now. He had a mesenteric study done this morning and will start small feedings of breastmilk tonight (2cc every 4 hours).

Thursday, January 7, 2010

The story starts.....

While visiting Denise's family in Cleveland for the holidays, we received our own "holiday surprise". I woke up around 2:30 am on Christmas morning to find my bag of waters had broke. Denise woke up and we called our OB back in Madison who told us to get to a hospital. Luckily, Denise knew the best place to go, so, we drove down town to University Hospitals. I was admitted on Christmas and was placed on bed rest (we were hoping to stay on bedrest until Nicholas was 34 weeks.) Well, our little man had other plans. I started bleeding on Saturday night and it continued into Sunday. On Sunday night, our high risk OB decided to send us to the L&D floor to be monitored more closely. Well, a good thing he sent us down there. We were down there about an hour and I clearly had an abruption. So, they prepped the OR and in we went. Nicholas Gene Mancuso was born at 9:49 pm on Sunday, January 3rd, 2010. He weighed 1lb 13 ounces and was 13 inches long; his apgars were 3, 8 and 8; not too bad for a 25.6 weeker. Denise saw him come out butt first (quite the sight) and got to see him in the treatment room. I briefly saw him as they wheeled him past us on the way to the NICU. My parents and grandma had come in for the weekend and luckily stayed and were there for the delivery as well as Denise's parents, two sisters, brother in law and nephew. I'm sure they all saw me in a different light as they wheeled me back into my room from the OR. Quite a posse we had going. We were thankful they were all there to celebrate Nicholas's birthday. Everyone got to see him in the NICU that night.

Nicholas was intubated the first night and extubated the following morning. He was put on CPAP. So far, he is maintaining his own oxygen levels well on minimal CPAP support and room air. Overall, he is doing better than expected. We're bracing ourselves for the bad days but hoping only for the good. Today (1/7) they attempted to put in a PICC without success. He has two umbilical catheters that need to come out in the next day due to risk of infection. They will attempt the PICC again tomorrow and we're hoping for success!

I was discharged yesterday, so, we camp out in Nicholas's room all day and go back to Denise's parents to sleep at night. The staff told us we wouldn't get much sleep if we stayed here, so, we retreat to Denise's parents in the evening.

We'll try to keep up with the pictures and updates as often as possbile. Thanks to everyone for the calls, thoughts and prayers. We appreciate them all.

Denise and Denise