Monday, March 29, 2010

Settling In

Day number 4 at home and so far so good. Nicholas and his mom's are doing very well at home and settling into a bit of a routine. He continues to do well eating and hit 6 lbs today and has grown to 18.5 inches. The more he grows, the more his lungs grow and improve, and the quicker we can get off of this oxygen. Today was his first doctor's appointment and she was very impressed with how well Nicholas is doing, especially considering his rocky start. Our new social outings are doctor's appointments, as we have several lined up for the next two weeks. As long as the reports continue to be good, we are happy.

You will notice in the picture today and green pacifier. This is a very important pacifier, also known as his "binky." It is Nicholas's most prized possession and can never be far from him.

On another topic, warm weather is coming to Madison this week and we are hopeful to get the new stroller out for a walk around the neighborhood. Hope it is "spring" wherever you are too!

Thursday, March 25, 2010

So far so good...

We brought Nicholas home this afternoon and so far, so good. We've attaced some pictures of our journey home. I don't think we've ever driven as slow on the way home as today. We'll post later this week but wanted to at least get some pictures of today posted.

Wednesday, March 24, 2010

Going Home...

Tomorrow is the big day for all of us as Nicholas gets to come home. We've been busy "nesting" and think we are now ready. We took the pictures attached as we were leaving the hospital tonight. This is the last night Nicholas will spend in this corner and in this bassinet. He is eating from the bottle well and in fact, took 60 cc three times today. He is now up to 5lbs 13 ounces. He will be going home on a little oxygen (1/16 of a liter). We will see pulmonary in two weeks and hope to be off the oxygen in a month or two. We'll have many follow-up appointments with general surgery (hernias), opthamology (eyes) and pulmonary (lungs) as well as visits to his pediatrician and home visits from physical and occupational therapy. So, while we're closing one chapter, we're opening a whole new one full of new experiences. We'll get into a new routine at home; our biggest hurdle will be being mobile with the O2, oh and lack of sleep (Melissa and Regan (Nicholas's primary nurses at Rainbow) are more than welcome to fly to Madison and help with those feeds they were never able to do or accomplish well due to a sleepy baby after too much cuddling:)). We'll keep updating the blog so you can continue to monitor Nicholas's growth and milestones . Thanks to everyone for your continues prayers, support and thoughts throughout our 3 month journey (my water broke on December 25th and we're going home on March 25th).

Saturday, March 20, 2010

A Quiet Weekend

Before anyone gets to excited, we are not going home just yet. We did get a car seat "fitting" today and mini test. Nicholas loves his car seat (thanks Aunt Darlene and Aunt Dianna) and did well with his pulse ox while seated. As we get closer to discharge, he will sit in the car seat for an hour and have his heart rate and oxygen levels monitored. For those of you who look extra close at the photo's, you will notice that his ng tube is back in. While Nicholas is doing very well with his oral feedings, he does occasionally get "too tired" to eat and needs his feed to be given via the ng. We continue to "plan and prep" for home. We have many new baby items at our house, now we just need a "baby." Nicholas will also have a visit from the pulmonologist (lung doctor) on Monday and we will begin working with home care to get his heart monitor ordered. As an aside for those of you who are "in to the numbers" - Nicholas is 5 lbs 6 oz, and today, the first day of spring, marks day 76 of life. Happy Spring and have a good weekend!

Thursday, March 18, 2010

Dreaming of going home

Nicholas continues to progress. He is talking almost all of his bottles by mouth instead of his NG tube. In fact, the NG came out today and they are not going to put it back in unless he can't take the 360ml he needs in a day. He is up to 5lbs 6 ounces and has outgrown a couple of his preemie outfits. He lucked out yesterday as he was suppose to get circumcised, however, he has two inguinal hernias that need to be repaired first. They had him in the room to do the procedure and once they saw the hernias, nixed it. No problem, we all had a better St. Patrick's day as a result. We'll fix the hernias once he gets bigger and his lungs are stronger. He is still on oxygen, 50cc via nasal cannula (it's around 1/20 of a liter). His hematocrit is still low (24) but they will continue to monitor that. We have hopes of going home sometime next week. We anticipate going home on oxygen; we'll see what the next week brings. His head ultrasounds and eye exams have all been normal which is a huge blessing! We hope you all had a nice St. Patrick's Day yesterday and we hope to have more news of home in our next blog.

Monday, March 15, 2010

Hurray, they turned my oxygen down

Today our friends at Epic had a baby shower for us. It was great seeing everyone and we got some very nice and thoughtful gifts. Nicholas is one lucky man. Now, we have to start unpacking the suit cases we brought back from Cleveland that are in his room and start getting organized with his stuff.

Nicholas's oxygen was changed from high flow to low flow this morning. Basically, he is no longer getting the pressure to help his lungs inflate, rather just the boost of oxygen. He is currently at 1/16th of a liter of oxygen. This is the amount of oxygen they would let him go home on, so, we're hopeful that home is just around the corner. He continues to take more feedings via bottle and hopefully, tomorrow they will go to a total amount in a day that he must take (on demand feedings) versus feeding him 45 cc every 3 hours. He is currently 17 inches long and 5lbs 2 ounces. Nicholas shares a room with 6 other babies now (we got moved to a medium size room late last week). We found him with his hat over his eyes the other day; we can only imagine what he was thinking. We are going to start our discharge education tomorrow; that way, when we get word that we're ready to go, we've accomplished everything we need to do.

Friday, March 12, 2010

I'm So Big!

Nicholas continues to grow and amaze us! He is teetering on reaching a new milestone weight of 5 lbs today. He is filling out his preemie diapers and preemie clothes well - we might be moving to the "newborn" size. He is also increasing his periods of "wakefulness", which really makes the mom's happy. As you can see in the pictures, he is very expressive and does smile often (now if we could just capture that smile on camera!) He continues to eat every three hours (something he really enjoys) and takes 2-3 feeds by bottle, 1 by breast (though he likes to practice often) and the rest by NG. We are very slowly weaning the oxygen - we can't do to much to fast with this sensitive little guy. Otherwise, we all continue to adjust and are staying status quo. This afternoon we will have bath time and kangaroo.

Tuesday, March 9, 2010

If you won't take it off, I will....

Nicholas remains status quo. He is still on 2 Liters of oxygen at 29% FiO2. He is now getting 38 cc every 3 hours and is taking a bottle 3 times a day. He's starting to root for food now, which is good. He has also discovered is fingers and sucked his thumb yesterday for a decent amount of time. All good developmental milestones. He got his first immunization today and will get two more in the next two days. They space them out versus giving all of them at once like they would have to at the clinic. He was a brave little boy. He cried for just a second and then went back to sucking his pacifier. He is now 4lbs 11 ounces. I talked to the physician about changing his food from 23 cal to breast milk with Neosure fortifier. She wasn't too keen on the idea just yet, as he had only gained 15 grams two days ago and 51 grams yesterday. I asked her what the average was in the last week and she didn't know. Oh well, we'll try again tomorrow. They were going to do this at Rainbow, thus, my reason for asking here.

The pictures I attached today were taken at Rainbow but are representative of what Nicholas thinks of his oxygen here too. He looked around to see who was watching, pulled it off and wasn't too happy when I put it back on. We'll capture some more pictures here in the next few days to share.

We finally ordered a crib last weekend and expect that to be delivered in the next 5 weeks. We went for the place that delivers and sets up the crib for free. Our car seat is on it's way as well as the stroller. So, we are getting ready for Nicholas to come home. We're certainly ready for that day but will wait until Nicholas let's us know he's ready; no need to rush after all this time.

Sunday, March 7, 2010

Still transitioning

Nicholas continues to adapt well to his new surroundings. We got moved from our private closet into a bigger room with a set of twins. Just when we started to get comfortable with our new digs, we're moved. The family seems nice enough but it's hard to share space and we fear Nicholas will pick up the bad habit of crying as the two girls in his room sure are criers. We both think they are slowly transitioning us to the larger open unit. For us, we are making sure everyone knows we are ready to go home when possible. We're perfectly fine to go home on oxygen, ng feeds, you name it, we're all for it to get out of here. Most of the staff has really tried going out of their way to help us adapt to the unit. The neonatologist told us to let them know if there is anything they don't have that we might need. So, they're trying and we are really trying to keep an open mind about things but it's harder today as we just moved into the new room, darn Rainbow for spoiling us early on! So, Ritz, Budget Motel to a youth hostel.

Nicholas continues to gain weight and is now up to 4lbs 9 ounces. He is eating 36cc every three hours and continues to bottle twice and breastfeed at least once. We're trying to read his ques a little better. If he's awake and alert we'll attempt to breast/bottle; if not, we give his feed through his feeding tube. Some of Denise R.'s family was in to visit this weekend and remarked on how small he is. It's weird to hear that as we can't believe how big he's gotten! The picture attached was Nicholas's thoughts when looking at Uncle Chad. He is now on 2 liters of oxygen at 32 percent FiO2. For those of you that are not medical, he's doing ok, his oxygen is less than at Rainbow but they increased the pressure a bit. He's still anemic (Hgt of 25, not sure what his Hgb is, Patty :)) and an ANC of 715, above 1500 is normal. With time, both should resolve. For those of you that are not medical, ignore the last two sentences.

Thursday, March 4, 2010

Back in Madison

Yesterday was moving day for us and we are now back in Madison. Nicholas took his first plane ride in a lear jet, accompanied by his own private medical team. We were picked up by ambulance in the morning and taken to Burke Lakefront Airport in Cleveland. It was with tears and much sadness that we said goodbye to our friends at Rainbow Babies and Children's hospital. We were so lucky to have been in Cleveland when all this happened and we truly feel it made all the difference in Nicholas's outcome. Denise R. rode with Nicholas on the plane. It was a beautiful sunny day for travel and overall a smooth ride. They landed at Wisconsin Aviation and were again met by ambulance and transported to St. Mary's. It has been quite an adjustment for "the Denise's" settling in at St. Mary's; Nicholas though, is doing quite well. We feel as if we have taken a serious step back in time. We have gone from the Ritz Carlton to the "budget motel." Up until yesterday, we are convinced that Nicholas's "private" room was the NICU store room. The only reason we have rated a "private room" is that we came from an outside facility and he is still in isolation. Our room has space for two wooden chairs and his NICU bed from the Smithsonian. If the nurse happens to come to his room, we have a Chinese fire drill to rearrange ourselves. On the positive side, we hopefully will be heading home soon. Nicholas continues to do well with his bottle and breast feedings and is now up to about 4 lbs. 2 oz. He continues to be neutropenic (more prone to infections) and anemic. Hopefully, that will resolve as he gets older and with the increase in iron they are giving him.

We again want to say a BIG THANK YOU to our family, friends and the outstanding Nurses and NP's/Doctors at Rainbow NICU for all the support and care you have provided to all three of us. We feel like we are finally approaching the home stretch (at least in terms of our hospital stay) and we couldn't have done it without all of you.

Monday, March 1, 2010


Nicholas has had a good couple of days. He is able to take two bottles a day now and is taking 32cc every 3 hours. He finished both of his bottles today. We got official word that we are leaving on Wednesday at 0900 from Rainbow. There is a company called Air Ambulance Specialists that specialize in medical transport and will pick us up here and end at St. Mary's hospital NICU. Denise R. will fly with Nicholas and Denise M. will fly commercial and arrive later in the day on Wednesday. Nicholas is now 4 lbs and 16.5 inches long. He is changing every day. All of the Iowa friends will probably recognize the socks on Nicholas's feet. His friends, the Huston's, thought we should set everyone straight as Nicholas heads back to Badger land. We're in Buckeye country, heading to Badger land but Nicholas wants everyone to know he is a Hawkeye fan at heart. We'll try to post tomorrow but if not, we'll post once we are back in Madison. We're grateful for your continued support, prayers and thoughts.