Daniel is 3 Today!!

We know, it has been way too long since we posted. I took this picture of Daniel today as we we're leaving the house.



He sure has come a long way. That's him on his birthday three years ago.



Daniel is a perfectly healthy little boy, still a little short for his age but that's no "biggie". He was born at 25 weeks and 2 days gestation, was 1 lb. 13 ozs and 12 3/4 inches long. He spent 89 days in the hospital. At the time it seemed like forever, but looking back it all seems like a blur. The care, and caring, Daniel and our family received from the NICU staff at Seton was tremendous. We know that all the prayers of so many people from near and far are responsible for him being such a healthy little boy.

And little boy he is!! He loves to run, JUMP, SCREAM, throws temper tantrums, and has a laugh that warms the heart. He loves The Wiggles, yayups as he first called them, any ball he can get hands on, and "chock" - better known a chocolate, (especially in the form of M&M's). Speaking of which here are pictures of Daniel and his sisters, Catherine and Grace, a couple of days ago after having some chocolate chip desert pizza and Double Dave's.





Happy 3rd birthday Daniel.

Home With Gracie

I had to stay home with Gracie yesterday and take her to the doctor. She had a slight fever and a bad cough. After lunch she was feeling better and did some art work.

They clean up pretty well!

Tonight was the Christmas concert for the school. There was much singing and pageantry. Check out these little Christmas angels!

Halloween Pictures

Starring Catherine as Daphne from Scooby Doo. We don't really watch Scooby, but that's who she wanted to be...



And starring Grace as Ariel, the Little Mermaid. Keeps with her princess theme.



And as Abu, the little monkey from Aladdin, Daniel, in his first Halloween trek. Last year, he was 8 days away from getting out of the hospital. What a difference a year makes!



Unfortunately, as seen in the final photo, Abu was not really up for an evening of trolling for goodies he can't eat anyway. So he stayed home and went to bed while Daphne and Ariel took to their Daddy-powered wagon and scoured the neighborhood for treats of all kinds. Over an hour later, they came parading grandly up the street, laden with many treasures both chocolaty and sticky. Apparently, Reese's Peanut Butter Cups were quite plentiful in our neighborhood (yeah for me!). Reports from the field indicate that Daphne and Ariel were a bit reticent at first, having to be lead to the doors and coached through their lines. However, they soon found their voices and were running up the driveways with all the other little goblins. Not content to rest on their candy pails teeming over with cavity-inducing goodness, upon their return, they joined forces with Mommy, and distributed the last of our giant bag of chocolate to the last of the trick-or-treaters. Afterwards, they downed two sweet treats, brushed their teeth, and were hustled off to bed. I'm not sure if Grace made it through the bedtime story! Hope you had a blast, too.



Happy Halloween!

Coming Home

Hi, everyone!

You may have heard through the grapevine: yes, we are home! The last few days in the hospital flew by, and, of course, since Daniel has been home, we have had to rework our routines again, so we haven't gotten to the computer until now. When last we wrote, we had been given a rough estimate of four weeks before Daniel would be able to come home, and we had secretly hoped that by the second week of November, we would all be home together. Well, the day after election day, we left the hospital

(Daniel on Halloween)

We had jokingly told the doctors and nurses that we would be happy to take Daniel home as soon as possible, but we would hope that it could be the day after Halloween--we had to take the girls trick-or-treating! This was easily accomplished and our ballerina-fairy-princesses had a grand time. When asked how many houses they had visited, Catherine declared they had been to 100 houses, but Grace only counted five. Actually, it was about 15, but they still managed to make quite a haul of the sweet stuff.

(Grace & Catherine on Halloween)

Two days later, back at the hospital, the discussion was about a sooner-than-expected departure. Since he had pulled out his feeding tube, Daniel hadn't missed a meal and was doing great. He kept his temperature steady, and passed his last eye exam. Previously, we had been talking about how well he was doing on everything except the breathing on his own. There was some general discussion of the possibility of taking him home on oxygen. We talked about the kinds of monitors he would need and how it might be only a couple of weeks or maybe a month with oxygen and monitors, and he would be breathing on his own. We weren't thrilled about the prospect of having to haul around a small oxygen tank just to get our baby to his doctors' visits. But on that day (11/02/06), the doctor wrote the orders to try Daniel without oxygen. It was only a trial; he would immediately be put back on it if there was any trouble. At 2:30 pm, as the NICU closed for afternoon shift change, I held my breath and Daniel took his. And he's been breathing on his own ever since!

(Daniel w/o Oxygen)

For the three months he was in the NICU, I would occasionally phone up there to check on him during those times we were away. At first, I called every night. As time went on and as he showed himself to be the most boring baby there, I would call less frequently. The day they took his oxygen off, I think I called every three hours--and that interval was a struggle! It appeared as if he had finally 'clicked'. More talk of going home quickly followed, and now there was the real possibility that we would come away with no monitors or equipment. We were elated!

(Daniel Pondering)

Next, we were asked to consider rooming in with him at the hospital. Down the hall from the NICU, they have a hotel-like hospital room where parents and their babies can spend the night taking care of each other with the comfort of having a bevy of skilled nurses close by. We thought it was a good idea, especially because of the length of time we had spent there. When you go to the hospital, have your baby, and go home with your baby, you have spent the hours and days between delivery and discharge bonding with your baby and discovering your new rhythm together. When you have spent so much time apart, you have a lot of catching up to do, so I jumped at the chance of spending the night with Daniel. The bonus to this overnight event was that his sisters would finally get to see him face-to-face and touch him.

(Catherine & Grace Meet Daniel)

Monday night (11/06/06) was our night, and we packed up for our stay at the hospital and for the girls' stay at Grandma's house. By 7:00 pm Daniel and I were settled in the room, and Larry and his mom brought the girls in. The nurse had brought Daniel from the NICU in his big stainless steel crib, and we placed a step stool next to his bed so the girls could see in. We turned on the video camera and let the fun begin. When they came into the room, they raced to the crib to get a first glimpse. Because we had spent so much time talking about how there would be much hand washing when Daniel came home, Catherine quickly jumped down and raced to the sink, calling for Grace to come, too, and to be sure to wash her hands up to the elbows! After they calmed down a bit, we sat them on the bed and let them hold Daniel in their laps. Grandma was on hand and took many photos that Grandpa printed out for the girls to take to school the next day.

(Grace Holding Daniel)

(Catherine Holding Daniel)

After about an hour of justified fawning over their little brother, Larry and his mom took them home, and I was left alone with my son for the first time in his almost-three-month life. Admittedly, I was a bit stunned and didn't know what to think. I just held him and looked at him. I thanked God for his health and for all the people who have been praying for him since the beginning. And my heart was so full, it bubbled up through my eyes as tears of joy. Thank you all so much. May God always bless you for your generosity and love.

(Daddy and "The Kids")

But wait! There's more!

Our official discharge date was Wednesday (11/08/06). There was still much to be done before he could leave. He had to pass a car seat test. This meant that he had to be placed in his car seat with his monitoring cables attached to make sure he would be able to keep breathing and keep his oxygen levels up. He passed just fine, but his car seat did not--he was too small! This seat had been used by his sisters and was in excellent condition, but the shoulder straps could not be adjusted to fasten him securely in place. After a quick trip to the consignment store, we found a seat that passed.

Wednesday dawned cool and clear as we took the girls to school, and we made our last trip to the hospital to see our baby. We spent a lot of time gathering up his stuff and talking to his (last!) nurse about what to expect at home, when to take him to the emergency room, and how many doctor visits we will have to make in the next few weeks. Finally, the doctor gave Daniel his discharge exam and gave us some final instructions on Daniel's development, his general health, and his nutrition requirements. We had been saying goodbye all morning to the many nurses and doctors we had seen during our stay. They have been such wonderful people. Back in August, when we went to Seton Northwest for our initial diagnosis, the folks up there were insistent that we would be quite well taken care of at the NICU downtown; they were SO right. I don't recommend having a baby in the NICU, but if you find yourself there, rest assured that some of God's very own angels work there, watching over your most precious gift day and night. So, here we were, saying our last goodbyes and walking with our son and his official escort out of the hospital, down that twisting corridor, and out into the sunshine. Free at last, free at last...

When the doctors had mentioned that there was a real possibility of Daniel going home with monitors, we had to alter our plans for where he would sleep in the house. Usually, we kept our new babies in a port-a-crib at the foot of our bed for their first few weeks and then moved them to their own room. If Daniel was going to have monitors and oxygen, we would have to put him in his own room right away in order to have access to enough electrical outlets and to keep little running feet from becoming entangled in the tubes and cords. This meant combining Grace and Catherine's rooms on a much shorter schedule and trying to get everything tidied up in a very short time. We abandoned our efforts to clean and organize our bedroom. But then, Daniel proved to such a good breather that he wouldn't need all the equipment, and so he would be able to sleep in our room--but our room wasn't ready! Truth be told, it hasn't matter where his crib was placed. Daniel has spent more time sleeping in our arms or on our chests than he has spent sleeping in the crib. Perhaps it's making up for all the time we couldn't hold him.

(Catherine & Grace Holding Daniel @ Home In The Big Chair)

So that's what I've been doing these last couple of weeks--which is another reason this email is only just now being written--cleaning house, doing the laundry (all caught up--finally!), and taking care of baby. Okay, I'll admit that the first two or three days, not much got done because I was too busy holding him that I couldn't be bothered with all that cleaning, but since then we have made marked strides. We have patiently waited for IKEA to open, so that we can purchase the girls some new furniture for their new life as roommates; now I suppose we'll have to wait for the crowds to die down, too.

Daniel has made several trips from his cocoon out here on the prairie. He had his first pediatric visit the Friday after his homecoming. When he left the hospital he weighed 7 lbs 6 ozs; two days later, he weighed 7 lbs 8 ozs. We haven't weighed him lately, but let's just say the boy doesn't miss a meal. He had his last visit with the eye doctor and was given a clean bill of health--no retinopathy! The doctor also noted that he sees no signs of vision problems such as near-sightedness or far-sightedness at this time, and has recommended his next appointment be at two years of age. In other firsts, Daniel has had his first trip to our favorite pizza place, his first trip to the book store, and his first trips to Costco and Target. He made his first visit to church over Thanksgiving weekend.

We are excited to share him with all of our friends and family, but during these first few months, we have to take some precautions to ensure Daniel stays healthy. His greatest danger is lung infection brought on by a cold or the flu. The girls have received their flu shots and we will get ours shortly. Daniel will receive a vaccine for the RSV until April or May. In the meantime, everyone he meets must practice good hygiene by thoroughly and frequently washing their hands. (Imagine how this is going over in our house right now!) Also, anyone who is coughing or has a runny nose should observe him from a distance. Unless you have just come from the doctor with a diagnosis of seasonal allergies with no complications, you may unwittingly be coming down with a bug. The doctor said that we needn’t keep him in a bubble, but that we should nonetheless be cautious.

We cannot thank you all enough for your loving prayers and generosity over these past few months. Daniel’s health is a testament to your faith and support. We couldn’t have done it without you and our own faith in a God whose love surpasses all understanding. Thank you all, again, from the bottoms of our hearts.

Now, you may think this is the end of our little story out here on the Internet. Inspired, however, by a friend of mine, we will keep adding to the blog as Daniel (and his sisters!) keeps growing. See you soon!

Love,

Kelley, Larry, Catherine, Grace, and Daniel

P.S. For those of you who can make it, please join us on Sunday, December 3, at the 9:30 am Mass as Daniel is formally presented to the parish at St. Louis!

The Light at the End of the Tunnel

Hi, everyone!

As you might have guessed from the subject line above, we have been given a glimmer of hope that Daniel may be coming home soon. Yea! He continues to do well, and has made some notable achievements since our last update. As a matter of fact, the day after our last update, he was moved to an open bed. At first, they put him in a small, plastic bassinet. I have to laugh every time I look at those little beds. My dad used to work for Luby's, and there they made the fruit salad in a big plastic tub about the size of that bed! Anyway, he was only in that one for a couple of days before he moved in to his new crib--a great big, stainless steel, big-boy bed!

(Daniel's first open air crib)

(His big boy bed)

He had to move into the open because he's such a big boy. Today's (10/23/06) official weight was 5 lbs, 13 ozs. Yes, that's a five! At this rate, we will be taking home a 6-pounder! The last couple of days, his weight has not been increasing as much as it had been due to Daniel having removed his feeding tube. (I think he was trying to show off.) When they first took him out of the isolette, his feeding tube was still in his mouth. Shortly after that, we began to feed him with a bottle, and to make it easier on him, they put a nasal-gastric (NG) tube down his nose. All of this suck-swallow-breathe stuff makes a wee, tiny baby very tired, so with the tube in place, we were able feed him with the bottle for part of the feed and then send the rest down the NG tube. As he has gotten stronger, he has taken more of his feedings from the bottle; last week, every other feeding was from the bottle. Then on Sunday (10/22/06), Daniel decided he was done with the NG tube and took it upon himself to remove it. It is a common occurrence for babies to dislodge their feeding tubes or breathing tubes--they are much stronger than they look--but that's what all those monitors and bells are for. Given Daniel's size and good health, they won't put the NG tube back unless he fails to complete two feedings in a row. Without the tube, he has to do more work on his own, and feeding from the bottle burns more calories than laying there and letting it slide into your tummy, so his weight gains have been a little smaller lately. If, however, he keeps taking all his feedings from the bottle, he will be one more step closer to going home.

Another check on his going-home list is to maintain his body temperature. He seems to be doing very well at that. He has a very nice wardrobe of little preemie clothes, many of which have come from one of our NICU neighbors who has outgrown his clothes and who is getting ready to go home VERY soon. Those folks will be taking home a baby who is just under 7 lbs!

The last thing Daniel has to work on is the unassisted breathing. About three days after our last update, he was on cannula all the time. They have slowly lowered the amount of oxygen flow he receives from 2 liters per minute, down to 1.5 liters, to 1 liter. In order to keep his blood sufficiently oxygenated, Daniel requires a little bit more oxygen than you find in room air. The air we breathe has about 21% oxygen in it; he prefers air with about 23% oxygen. This may be the issue that holds us up in our bid for departure. It is not worrisome, though, and with the doctors' help, he will get off that assisted breathing soon.

We still have one more test with the eye doctor to make sure that the blood vessels along his retinas are growing like they are supposed to. We are optimistic that he will pass that again. Before we leave, we will our second RSV shot (more to come!) and the standard newborn hearing screening. The nurses tell us he can recognize my voice from across the room and turns his head toward the sound. They have also warned us that after having been so long in the NICU with all its beeping monitors and other noises, Daniel may not like too much quiet. That's good, I tell them, because his sisters are only quiet when they sleep!

(Gracie on the 'puter)

Speaking of those girls, they know that he will be home soon, and they can't wait. Grace's teacher tells me that Grace speaks frequently of her brother and says that he will be home soon. Both Catherine and Grace have classmates who have new siblings at home. I think that increases their anticipation of meeting Daniel. In other news, Catherine lost her first tooth! The Tooth Faerie visited us last night and left Catherine a tiny little note and a shiny gold dollar coin. She is quite taken by the glittery fairy dust she found on her pillow this morning!

(Catherine and her tooth!)

So when will he come home? Last week, we got a rough estimate of about four weeks, given the tasks he has to accomplish. They tell us that sometimes the babies suddenly 'click' into being newborns and everything quickly falls into place. We'll see; it's all up to Daniel. We are hopeful that somewhere around the second week of November there will be five of us under this roof.

(Daddy and Daniel)

Thanks, as always, for your prayers and support. We so look forward to the day when we can introduce you to this little gift you have been praying for!

Love,
Kelley, Larry, Catherine, and Grace