From Simon Levi

In an effort to get caught up, without driving outselves crazy, we'll list the milestones that Simon has passed in the month since he has come home. Sorry for not writing as frequently, we have been tired. Zzzzzzzzzzzzz.

-He has grown out of his preemie clothes and now wears newborn outfits.
-He is off oxygen during the day, but still wears his cannula at night.
-Batted at Maggie, leaving her rather insulted.
-Received 6 immunizations and was only a bit cranky during the rest of that day.
-He is solely nursing except for the occaisonal bottle by Dad.
-On Friday 2/2 he got his 2nd RSV shot to prevent colds and screamed a bit but took it like a champ.
-His due date is Wed. of this week! 2/7
-Today he weighs 8 lbs. and is 21 inches long. What a whopper!

Thank you all for checking up. We will try to keep a weekly update until Simon can maintain his own webpage. Hah Hah.

From Simon Levi

Simon did this cute little praying pose yesterday while his G-ma Miriam was holding him. What a cutie! Yesterday after church, there was a potluck to welcome Simon home. Even though he stayed at home with Miriam, we had a good time. The doctor told us to keep him away from large crowds during RSV season which will continue until mid-April sometime. Anita made him a really tasty cake with a gumball machine decoration and we had taco salad. Afterward, we opened gifts for Simon and then went home and took a nap.
Last night was a rough one. Simon kept making these grunting noises ALL night and didn't allow Mom and Dad to get much rest.

From Simon Levi

The days have gone by rather quickly since bringing Simon home. He feeds about every 3-4 hours, so we are on that schedule as well. Becca and I take turns with the nightly feeding so that we can each have a block of about 5 hours of sleep. Simon is still on oxygen, however it is turned down to the lowest possible setting of 1/32 of a liter per hour. Although it is just a trace amount, it's a comfort knowing that there is a bit of a safety net in case he would need it. To this point we are mostly bottle feeding since we are adding a few tsp. of Neosure to beef up the calories. The doctor thinks he'll be on that for only a few more weeks. Hopefully at that point he can be primarily breastfed.

From Simon Levi

What a whirlwind of waking, sleeping, changing dirty diapers, cleaning bottles, and Simon's favorite, BATHS!! We arrived home one day later than we expected. Simon was feeling a little under the weather after having a cranial scan, dilated eyes, retinal scan, and a circumcision. Instead of gaining the normal 35-50 grams that he is used to, he actually lost weight. The prospect of what the doctors call "faliure to thrive" was great enough that they wanted to keep him to make sure he could gain weight again the next day.
Having this extra day allowed Becca and I to get some decent sleep after cleaning frenzy and sleepless night spent iin the hospital. We were very proud parents walking out of the hospital with our now BIG guy. He weighed in at 5 lbs. 14.5 oz.

Becca and I are in complete shock! Simon is coming home tomorrow! Things have happened so fast in just a few days. After Simon had his gavauge tube removed, he started feeding from the bottle for every feeding. The plan was to put the tube back in when he was tired from bottling, but he never got tired. One thing led to another and soon he was lined up to do his exit cranial and eye scan, and circumscision. Becca and I spent all of last night readying the house. We were up far too early in the morning continuing out cleaning frenzy. Tonight, we will room in at the hospital. Having Simon under our care without monitors will make it much easier to do the same at home. We have so many questions and doubts, but are definently ready for this step.

From Simon Levi

What a big boy! When we visited the hospital yesterday, Simon suprised us by having his gavauge tube out of his nose. This is the tube that, up to this point, delivers food directly into his stomach. It has been a very important part of his weight gain and a big help because he doesn't get enough food before he tires out from breastfeeding. Yesterday, Simon started taking the bottle every couple of feedings which is great becasue that means we're one more step closer to leaving. With the gavauge tube out, both Becca and I feel that he sounds less snotty. His nurse said that she was going to try bottle feeding him every three hours until he tired out and needed the tube put back in. Apparently, Simon was tired of not being able to breath and pulled out the entire tube last night.

From SimonLevi

Finally we were able to brave the roads and come in to visit Simon. The snow started on Thursday afternoon and continued all through Friday with only brief moments of pause. Although this storm wassn't as bad as the last one, we still had well over a foot close to the foothills. Unfortunantly, we were not able to come into the hospital to visit yesterday.
Becca had a doctors visit on Thursday afternoon. Thankfully, the tests showed that she only had a low grade infection that caused premature labor. If the infection had been worse, Simon may have contracted it through the bloodstream and would start off his life being very sick instead of just very small. The doctor was confident that we wouldn't have much of an increased risk for future pregnancies which really set us at ease.
When we went back to the hospital this evening, Simon had been moved again. We were hoping that we would be able to stay in our cozy little spot by the window, but since there was more room there, a baby who was in a crib moved there. Our new spot is ok. We aren't surrounded by a lot of other babies, parents and busy nurses, but but it is on the corner, which makes privacy a little harder to obtain.
We are hopeful that Simon is on his way home soon. We still have to finish the nursery and do a few things around the house, but we ARE ready for him emotionally.

From SimonLevi

A lot has happened in the last few days. Simon has done so well with weight gain that he looks more and more like a full term baby everyday. Becca and I have still been getting in to see him for several hours 2 times a day even with the past snowstorm and Christmas. The news reports show there might be a nother big snowstorm blowing in at the end of this week. Hopefully we'll be able to dig out and see him this weekend, especially since he has started showing interest in breastfeeding.

From Simon Levi

Yesterday, we finally shoveled our way out of our driveway and made our way to the NICU. We were so excited to be with our little guy that we stayed for 9 hours straight! When we first arrived at the hospital we found out that Simon had been moved yet again. This time, Becca and I were happy with the change. Now Simon is in a private corner near a window and we have plenty of room to stretch out when we visit.
Simon's feedings have gone up to 42 ml every three hours which translates into approx. 3 tablespoons! Because of his age and weight gain, Simon has not been having Bradys or Apneas. He is also down to 25 cc oxygen which puts him just above normal room air. The nurses are very pleased that he is "boring" and lays in his crib all day just gaining weight eating and pooping. He also is very vigorous with his pacifier and is doing well with his "Basics of Breastfeeding 101" class.
Today, we had lunch at the house of someone from church. It was nice to get together with friends even though Becca and I frequently found our minds wandering back to Simon.

From Life in Colorado

The Blizzard of 2006! We didn't know until late Tuesday night that a storm was approaching the Denver area. Wednesday morning when Perry woke up at 5 am for school, there was only a dusting of snow and yet school was already cancelled. Before the storm got too serious, we headed into the NICU and were able to see Simon until about 5 pm. At that point, we realized we'd better get home or we were going to be sleeping there. The nurses were prepared to pull a 36 hour shift, taking turns getting 6 hours of sleep in between their marathon shift. We knew Simon was in good hands because he had one of his primary nurses, Janice. The drive home was slippery with 14 inches of snow and white out conditions as we traversed onward. We knew we wouldn't be able to make it to the NICU Thursday as 30+ inches of snow was forecasted. The 27" of snow was beautiful Thursday morning, but we guessed correctly- a trip to the NICU wasn't safe. When we called Janice, she reported that Simon was doing great, weighing in at 4 lbs, 12 oz. AND he hadn't had any bradys or sleep apnea during the night. We were thrilled with the news- that puts him 2 lbs. over his birthweight!

From Simon Levi

Today was dress-up day for Simon. Becca has been threatening for the past couple of days to get some Christmas clothes and take some pictures for thank you notes. We are going to have to make a million copies to get close to thanking everyone who has helped us during this time. Anyways, here is our fuzzy wuzzy Christmas guy all dressed up but nowhere to go! I think this is a great shirt that will double well for a Nautical themed day. Simon is a few grams shy of 4 1/2 lbs. Way to go skipper!

We needed this picture taken for our church directory. The hospital setting wasn't quite the background we wanted. So, Becca put some of her photoshop skills to work and combined a picture of her and Simon in the hospital with a picture taken of me at our home. A great family shot! Soon this will become a reality and Simon WILL be home. We are anxious for the next month or so to pass so we can all be together.

From Simon Levi

Simon is growing right before our eyes! Today marks one month since he came into the world as a scrawny little guy. Now he is over 4 lbs and is working on being a little chubby boy. Every day when we go in to see him it amazes me that he is able to continually put on the kind of weight he does. One day this week he put on 90 mg! Usually it is much less ranging from 20 - 50. Becca asked the nurse if it was healthy for him to gain so much weight in so little time. She said that the weight he is putting on is mostly from proteins instead of lipids, except for the lipids in Mom's milk, and that it's perfectly safe for him. She also said that sometimes there will be a plateau after significant weight gain.
We are just so happy that we are able to hold him, communicate with him and love him. He gets cuter each day!

From Simon Levi

From Simon Levi

This was a really busy weekend for both Simon and his parents. While Perry was working hard with his school groups to ready them for the Saturday Parade of Lights, I spent a much needed morning with girlfreinds in Colorado Springs. Meanwhile, Simon gained more weight, putting him a pound over his birthweight at 3 lbs 11 oz!
Sunday brought more excitement as our primary nurse informed us that his isolette was at the lowest heat setting, signifying that Simon was soon ready for an open air crib. While we were there with Simon, Dr. Olthoff approved the nurses decision and Simon made the move. It's so much easier to see his darling face, change his diapers, and do other baby maintenance. It's also thrilling to know that this is one more step closer to coming home, as he needs to be able to maintain normal body temperature on his own.
Simon also had his feeding increased to 34 ml and has the addition of Bena-protein to create a fortified milkshake. After a blood test Monday morning, we discovered he has slight anemia, which is a natual result of gaining so much body weight. Although his body is trying to correct this imbalance, it was decided to give him a little help by adding an iron suppliment to his milk as well. We thank God daily for Simon's continued progress and thank everyone for their prayers and support. He is an amazing and beautiful boy.

From Simon Levi

Simon is 23 days old today! My, how time goes quickly, and yet I'm still in a fog. Simon was very dear today during the 8'oclock kangarooing. He was working very hard at sucking on his little green pacifier off and on for about 5 minutes. This is a great time for him to practice sucking and I'm told that it takes a lot of coordination for preemies to suckle, breathe and swallow. For now we'll just practice!
We both had a hard time leaving the NICU today. It's always difficult when we have to leave him with a nurse we don't know very well. How is he cared for? Who is his advocate when we're not there? I cried all the way from the elevator to the car because I worry for my sweet son. It's not right for our family to be split up like this. We should all be in one place, at home.

From Simon Levi

Both Perry and I were able to go to the NICU this morning which was a good change for my normal routine. After washing our hands we looked at his chart and read that he gained over an ounce yesterday. Our big little guy now weighs in at 3 lbs. 8 oz! The footed sleeper that Kathy dressed him in this morning is a perfect fit except for the toe area which seemed a little crowded. His feedings are up to 32 ml every 3 hours and a dose of caffine (not starbucks) every 12 hours.
I overheard a Doctor talking to a group of students about Simon. He said, "Pretty much all there is to say is that Simon's gaining weight steadily and has only a few Bradys and Apneas which we are confident he will outgrow." Great news! Not bad at all for a 31 week (gestational age) baby boy.

We walked into the NICU this aftenoon and were shocked to see that the isolation room Simon was in was completely empty. There was no isolette with a blanket covering it, no charts or IV stands, not even the picture one of the nurses drew of Tigger from Winnie the Pooh pouncing on the name 'Simon'. Even though we knew this day was coming, we still had a fleeting moment of anxiety before one of our nurses, Erin, rushed over to let us know Simon was moved into the common area.
He looked so crowded with his isolette jammed against a wall and his chest of drawers wheeled in right beside him. Although we know this is a step up for him, the luxury of privacy is gone. Now we have to Kangaroo and cuddle with Simon in the public area. It'll be a little different for us to have him out where people can peer into his little home as they walk by, or pass judgement while comparing their child's monitor readings with Simon's. I know we'll get used to it, but it just seems very abrupt.
Both Becca and I were able to hold Simon while sitting in a rocking chair today. Normally when we hold him, he is face down on our chests and we can't see his face very well. Holding him in this different position allows us to be face to face. There was a moment while I was holding him where our eyes locked and there was communication. I'm not exactly sure I had ever spoken such a pure language and there was but one word. Love.

From Simon Levi

I was officially inducted into motherhood this morning when Simon peed on me during kangaroo time. All the sudden I felt something warm and wet on my stomach and pulled away the warming blankets only to discover a very wet diaper! We're so glad that his mechanics work. Also- he is steadily gaining weight- as of today he weighs 3 lbs, and ALMOST 3 oz or 1420 grams. His sole nutrition now is my milk and he's tolerating 27 ml (2 Tbs.) every three hours. The milk is supplemented with Human Milk Fortifier for additional calories. He's still receiving the milk through a tube that runs through his nostril into his stomach and this will be the method for another 4 weeks, or until his gestational age is 34 weeks old. He's my superstar and I'm very proud of our dear boy! .

He's two weeks old!! I can't believe 19 days ago we came into the hospital for some mild abdominal pains and left being parents. What a whirlwind and a scary time, yet our son has continued to show us how he is strong and determined. Today he came off of his Picc line which is an IV tube that runs from the inside of his elbow, up an artery and near his heart to supply his blood with a balance of nutrients. Now that he is ingesting more natural nutrients from Mom's milk, he doesn't need the extra help.
He is also on a cannula which brings him a steady stream of oxygen into his nostrils without being bulky. You can barely see it in the pictures. He's getting anywhere from a 20 cc - 50 cc blend to help him absorb the oxygen without overworking his still slightly underdeveloped lungs. He's also starting to be more alert when it's time to change his diaper and feed. It might be the caffine shot they give him around noon. I don't think it's Starbucks, but it works pretty well.