Friday, February 26, 2010

Just how big am I

We took some pictures of Nicholas with some common things as people are curious about his size. The first picture is of an 8 ounce bottle of water, the second an iPhone and the third a dollar bill (not that you couldn't figure that out :)). He has quite a bit going on around his nose, oxygen, a nasal gastric tube for his feeds and duoderm (like tape) over his oxygen tubing, as he has a tendency to pull it out. The other picture is of him taking a bottle. He has attempted a bottle two times. Really, as you can see in the picture, it's a syringe with a nipple over it. The most he has taken without getting too tired is 4 cc. So, we are working our way up to the 32 cc he is getting now. As of today, we are attempting to breastfeed once a day and bottle feed once a day. We want to make sure he can do both as Denise M. is looking forward to those midnight feedings. While we have enjoyed our time in Cleveland, especially spending unexpected time with family and friends, we are working on plans to get Nicholas transferred back to St. Mary's hospital in Madison. The current plan is for sometime next week, bearing any unforeseen circumstances. He will be transported via a fixed wing (plane). We're excited to get home but will miss many things about being in Cleveland also. We'll keep you updated on our progress.

Wednesday, February 24, 2010

First tub bath

We gave Nicholas his first tub bath today. He was placed in a basin with a heat lamp over him. He loved it and in fact started falling asleep. He's status quo with the oxygen (1 liter at 34-38% for those of you that are medical) and they have cut the calories in his formula to 23 calorie versus 28 as "he is gaining weight too quickly." We love playing "dress up" with Nicholas and the staff look forward to seeing which outfit he has on on a daily basis, a little pressure to look cute every day. We look forward to many more good days with continued improvements.

Tuesday, February 23, 2010

Moving on up

Nicholas has had a good few days since our last post. He is almost 3lbs 11 ounces and is 16 inches long. As you can see, he is now in an open crib. He has been maintaining his own body temperature, thus, doesn't need the isolette. The nice thing for us is we can hold him whenever we want. We have a pact to only get him out when he is awake as he still needs to get good sleep. We both check to see if he is awake frequently. He is still on a nasal cannula with a little oxygen. We tried him without it but he desated to the 60's. At least we finally got rid of the CPAP. Aunt Darlene brings chocolate kisses for the nursing staff and Nicholas wants to say thanks as he knows when his nurse gets chocolate, s/he tends to be in a better mood. OT will come by to see Nicholas today or tomorrow. They will assess Nicholas's suck. Once they are done, we'll attempt to give him a bottle. We'll start with once a day to begin with and we'll gradually increase that as he gets better at remembering to suck, swallow and breath all at once.

Thursday, February 18, 2010

Getting Ready to Fly

Nicholas had a good day today. It really seems like he is turning a corner and headed in the right direction! A couple of his recent accomplishments include getting off of CPAP (he is now on a low flow nasal cannula at 0.015 oxygen), his weight is up to 3 lb 5 oz, thanks to his increased feeds (he now eats about 1 oz every 3 hrs). In the next few days, we will try limited trials of room air and maybe introduce a bottle for one feed a day. He loves his pacifier, so, we are hoping that eating will be second nature. For those of you who are wondering, Nicholas will be breastfed, but we need to accurately know his intake at this point and he needs "fortified" breast milk, so, will end up on a combination of bottle/breast. All in due time. Hope you enjoy today's pictures, we think they are pretty cute.

Tuesday, February 16, 2010

Mardi Gras - Fat Tuesday

Speaking of Fat Tuesday, Nicholas has broken the 3 lb. barrier! He now weighs in at 3 lb., 2 oz. Another milestone that he has reached is having his isolette set to room temperature so that he can work on maintaining his own body temp. Along with this big step, is getting to wear real clothes. We have several premie outfits that looked very small on the hanger, but on him, they are still large. He is looking like quite the big boy in his clothes! Along with the “big boy” motif, you will notice a picture of him in Nike high top basketball shoes, which were a gift from his cousin Andrew. Even the nurses were anxious to see him in these shoes, so this picture taking event was widely attended and anticipated. His mom can’t wait to shoot some “hoops” with him.

We have had a few minor set-backs along with our accomplishments (part of the premie dance of “one step forward, two steps back”.) Nicholas is neutropenic (he has very low white blood cells) which makes him highly susceptible to infection. For this reason he is in contact isolation. He also has low red blood cells (anemia). To help spur his bone marrow to increase RBC production, they have started a new medication (Epogen) that he gets as an injection. He is quite the trooper with his shots, very little crying. They hurt his moms more than they hurt him. Nicholas continues on the CPAP, but we have been able to turn the pressure down from 4 to 3. Hopefully by the end of this week we will start some trials of him being on the nasal cannula for limited windows of time. We both really miss seeing his cute little face.

We also want to send a BIG THANK YOU to all of you for your continued support, prayers, good thoughts, cute clothes and much appreciated "care packages" and home cooked meals.

Sunday, February 14, 2010

Happy Valentine's Day

Yesterday, we put on Nicholas's first outfit for the picture you see here, in honor of Valentine's day. He only had it on for the brief time it took to take these pictures. He tolerated our little "dress up" event very well. He is still on CPAP (you can see how the straps have indented the tops of his cheeks a bit and it tends to make his eyes puffy) and a little bit of oxygen. No new changes to his care this weekend as he is doing well and they want him to rest before his next change of trialing a nasal cannula. Every three weeks the neonatologists change. Tomorrow we get our third one, who also happens to be the mom of a preemie. Everyone has been wonderful and really works as a team in providing care to Nicholas. We can't believe we've been here 6 weeks already and it's crazy to think our due date wasn't for another 8 weeks. Nicholas is pushing 3 pounds, is still 15 inches long and his head continues to grow, all good. We hope you have a wonderful Valentine's Day. Make sure you tell those around you how much they are loved. We are truly thankful for our little Valentine on this day.

Friday, February 12, 2010

My favorite position - on my stomach

Nicholas had physical therapy today. Really, the therapist did some infant massage. Nicholas wasn't sure what it was all about at first and pulled back as most people touch his leg and foot to do a heal stick for blood. The longer she worked with him, the more relaxed he got. She only did one side today and will do the other side next time. They like to start slowly and progress into more of a full body infant massage. Eventually, Nicholas will recognize the smell of the oil and know that he will be receiving positive touch versus someone coming into his isolette for other reasons. I was trying to figure out how I could crawl into the isolette for a little massage myself. He is still on the CPAP, pressure of 4 and FiO2 of 28%. They are going to leave him there for the weekend and look to start some nasal cannula trials next week. We all are looking forward to the nasal cannula trials for us to see more of his face and for him to have a break from the CPAP mask.

Tuesday, February 9, 2010

My first head to toe bath

Today, we gave Nicholas a full head to toe sponge bath in his isolette. He really seemed to enjoy it and we loved seeing and shampooing his full head of hair. The first picture is during his bath, the second when we got him positioned post bath and the last, 5 minutes later. He also had PT (Physical Therapy) today. They came in to evaluate him and work on some developmental positioning. The therapist was very impressed with his "muscle tone." Nicholas continues to tolerate his feeds (16 cc every 2 hours) and continues to grow. Depending on the conversion scale you use, he's approximately 2lbs 12 ounces. If he stays on this trajectory, they will likely put him back on 24 calorie versus 25 calorie breast milk/formula combination, which would be like a "baby diet."

Sunday, February 7, 2010

Super Bowl and Super Boy

Sunday's are measurement days and Nicholas has gone up on his head circumference, length (15 inches) and weight (1255 grams or approx 2lbs 7 ounces). His weight is up because he is doing well with his feeds (now 15.5 cc every 2 hours) and he has a little extra fluid on board. They stopped his diuretic (used to get rid of extra fluid) a few days ago which sometimes causes these little guys to carry some extra fluid until their bodies can figure things out. He got a dose of lasix early this afternoon which should help get rid of some of his puffiness. His face, feet and eye lids were all a little puffy. We thought he got into a fight with his CPAP this morning. Speaking of CPAP, Nicholas lasted approximately 10 hours on the nasal cannula on Thursday and went back on CPAP that night. He's doing fine on the CPAP now and we'll likely try the nasal cannula again in the next week or so. It's fun to see the changes in Nicholas and see him grow. We like hearing the little sounds he makes. He has yet to fully cry, but makes little whimper noises and has the cutest little sneezes. Denise M. even swears he smiles. I have yet to see it but the nurse yesterday saw it. I suggested gas pains :). We'll work on a cute, non-edematous (non-puffy) picture next week. Go Saints!!!

Thursday, February 4, 2010

A little face time

You might notice something different about Nicholas, he has a nasal cannula on (another way to deliver oxygen) and seems to enjoy the freedom from his hat and CPAP mask. Some babies tolerate the nasal cannula better than the CPAP, so, they are trying out the strategy with Nicholas. He may end up having to go back on the CPAP, but for the time being the nasal cannula is working ok. The best part of moving to the nasal cannula is that we get to see his beautiful face and dark hair. We've included a couple of pictures we took during his hands on care. The quality of the pictures is not great. We took them with our iPhone with low light as Nicholas tends to squint with the lights on. Denise M. liked the first one as it shows how his cheeks are getting chubby. He continues to tolerate his feeds and is up to 14 cc every 2 hours. As he gains weight, they increase his caloric intake. He has gained the last 3 days and is just over 1100 grams or almost 2lbs 3 ounces. The more he grows, the better his lungs can develop.

Tuesday, February 2, 2010

Moving at a cheetah's pace

Things have progressed more rapidly for Nicholas in the last couple of days. They have stopped one medication (the diuretic used to make sure he didn't have too much fluid on board with extubation and the other breathing problems he was having), increased the calories of his breast milk to 25 calories, increased the amount he gets to 13 cc's every 2 hours, weaned his CPAP to 3 from 5 (good) and gained 80 grams in one day. That's a lot for a guy who weights in at just over 2.2 pounds. As a result, Nicholas's body is working hard to accommodate all the changes, so, we are not going to hold him today. We look forward to that time with him but want to make sure he's doing ok and is up for it. It's amazing to think of the amount of calories he burns to do the simple things in life. We want to spare him the calories today in exchange for more growth.
There is a Ronald McDonald room here for parents of patients. It's a place to get away for awhile and they provide snacks, phones, computers, dinner on the first Tuesday of the month and other things parents might need. Seeing the hospital from the inside out versus coming in for a day or two for work and leaving has really changed our perspective. Even though we'd like to think we're good at what we do, we think we'll be even better as a result of our experience with Nicholas. We'll try to capture a good picture of our growing guy in the next couple of days to share.