May 9th, AM: Another small setback Wed night. Apparently cardiac babies are typically
'wet' patients. This means they have a tendency to retain fluid in places they shouldn't.
Tyler's lungs are a little 'wet' (no evidence of pneumonia or infection exists), so
they are adjusting his medications to compensate. This is not a major problem, but it will
push back his homecoming. We did have a nice time with him Thurs night. He was rather alert,
and very interested in staring at Donna. Whenever she would move, he would crane his neck
to watch her. Smart kid ;-)
May 10 AM: Friday was MUCH better. Grandma and Grandpa Clopine came down and Tyler responded
appropriately! The medications they gave him really helped. He was very alert and
wanted to visit with us. They say with his 'wet' lungs, it was like he had a cold.
He was just too tired. Once they were able to 'dry' out his lungs with a diuretic,
he felt much better. He was hungry, and seemed to smile a lot (probably not on purpose,
but it made us feel good to see ;-). They are now talking about a Mother's Day
homecoming again. We'll have to see how he is today!
May 11 AM: Friday night turned out to not be quite so good. He had little problem
keeping his dinner down. Since the last weighing, he lost about 3 more ounces (6 in the
last few days) so the Mothers Day homecoming is off. During the day, with the
care of Beth ;-) he managed to finish, and keep down, more than his share of mom's milk.
Perhaps this is a better sign of things to come. The put him on a 'feed on demand' schedule.
Now, as soon as he shows signs of waking, he gets a bottle. That will probably spoil him! (but
we don't care) I can hardly wait until he asks for his first Ferrari, perhaps
he will let his father borrow it ;-)
May 12 AM: We had a great Mother's Day with Tyler! We spent most of the afternoon
feeding and holding him. He is getting quite an appetite. Since his last
weighing, he gained 135 g (4+ ounces). It looks like the new feeding routine is helping
as well as a new medication list and schedule.
He really seems to like to visit when we are there. He tries to keep his eyes open
as long as he possibly can before going back to sleep. We were able to dress him
up in a Mother's Day outfit for some great pictures with Mom. A special day...
May 13 PM: Well, it looks like the weight gain from Sunday was not exactly all true. He
must have had a wet diaper or something. He has gained weight from Saturday, just not
that much. His 'wet' lungs seem to be drying still, but the area around his heart
is still a bit inflamed. Once that goes away, he should be in great shape. We were asked
to spend more time with him now, they are hoping to have fewer different faces feeding
him. That might help him eat better!!
May 14 AM: He lost a bit more weight, but we have figured it all out! Last night, Tyler
told me why he does not want to leave the NICU. He has a big crush on one of the
nursing staff! He flirts with her as much as he can... He figures if he doesn't
gain any weight, he can stay longer. His lungs continue to look better, and his heart
inflammation is going to be examined again today. They think it will probably look better
as well. All he needs to do now is eat. I wish I had that problem ;-)
May 15 AM: A little better on the weight last night! He's up 80 g (almost 3 oz!). That's
great news. They are fortifying his breast milk with a high-powered food additive with a
ton of good calories. I think the quarters I taped to his rear after yesterday's
diaper change added a little to help his weight ;-). His heart inflammation (pericardial effusion)
is 90% resolved, and his lungs continue to 'dry'. We were able to give him a bath
yesterday (plenty of embarrassing pictures to follow) and the last of his umbilical cord
came out! He loved the heat lamp, we'll probably have to buy one of those now...
At this point, the dressing, all sutures, and all IV's are out. His only 'food' is mom's
milk.
It was a great afternoon with the little guy!
May 16 AM: Another nice day with him yesterday. He is really showing his personality more
and more. He seems to smile at us, at least we are going to believe he is ;-). He is spending
more time awake and alert. He gained another 30 g last night. His eating and weight seems to be
about the last problem we need to face right now. They are talking about a Monday or
Tuesday homecoming now! We just got a call from Tyler's ex-neighbor in NICU. He went home
a few days ago. He had the same operation as Tyler, and is doing very well now.
May 17 AM: We did not get to spend as much time with him yesterday. We were getting
ready for the baby shower for Tyler's girlfriend. Her name is Megan, and she lives across
the street at Scott and Julie's house. A tall and thin, good looking girl (5 lbs 12 oz, 19.25 in).
Tyler is still eating well, but I think the nurses are reading this page! They must have found the
quarters I taped to him, he lost 40 g last night... Since he is eating well, it's not a
big problem. We're now looking at a Tuesday or Wednesday homecoming.
May 18 AM: Wow, do we make cute babies (spoken like a true parent ;-). He melted
our hearts again yesterday with his happy attitude. It was very hard to go home
last night. He just seems to be in a better and better mood each day. It's nice
for us to see. Not as many milestones to report, it's just a waiting game
now. He stayed the same weight last night, but continues to eat well. He is off
one more medication today! It's the med that he hates the most too! Perhaps that
will help trigger a better appetite.
May 19 AM: True to form, Tyler managed to throw another curve ball at us. He is now
slightly anemic. They will probably try to treat that this morning. There will be
another echo-cardiogram to check on his pericardial effusion this morning as well.
He did manage to gain 70 g last night, and is showing more and more attitude ;-).
He was even a bit of a pill yesterday afternoon! He seemed rather calm with us last night
though, perhaps just to send us home on a good note...
May 20 11:00 AM: Apparently, the anemia was not that big of a problem. The echo-cardiogram
showed no pericardial effusion, and his lungs looked great. This only means one thing...
We just got the call, he is scheduled to come home tomorrow
May 21 2:44 PM:
He's Home!!!!!
May 22 PM: Sorry I've been so wordy during the last two days ;-). My mind has been
on other things!
There's a door we've been walking through several times each day for
the past five weeks into the NICU at Children's Hospital. We finally carried
our son through this door. He had no tubes, wires, nor monitors. The only thing he needed
was his mother and father to carry him. For the first time in his life, he saw the light
of day, smelled fresh air, and felt the warmth of the sun. I wish that everyone could once
feel this type of joy. Our son was finally with us.
Tyler has been a pleasure to be with for the past two days. Everything he can see, smell,
and hear is a new experience. We are certainly getting used to his presence. We've already
had such a wonderful time getting to know him at the hospital,
now we are able to do it at home.
He loves to be held, but is a very content and happy baby sitting in his various chairs and swings.
We've been on two walks with the
neighborhood 'stroller gang' already. His eyes are wide open the entire way. His appetite
has been great, and he didn't wake us up last night (we had to wake him for his feeding). We're
even getting used to administering his various medications.
Again, we cannot express enough our thanks to the people at Children's Hospital, and the
staff at the NICU. Their expertise and patience with both Tyler and ourselves was incredible.
We look forward to bringing him back to visit as much as we can. We want him to know these
people.
May 24 AM: Tyler had his first Cardiologist appointment yesterday (at least first outside
of the NICU). He passed with flying colors! He then finally got to go back to visit his
friends in the NICU. He was very happy to see them (they were happy to see him too). He
still manages to throw us different things though. Yesterday, he decided to sleep and fuss most of
the time, and take a snack once in a while. This morning, and last night, he is a power
eater. With a fully belly, his naptime is much deeper and more useful. He is very alert and happy
while awake. He smiled at his dad this morning, and melted pappa's heart even further. Grandma
and Grandpa are coming over this afternoon, so were getting all cleaned up. We are attempting
his first bath at home in a few minutes.
Should be fun...
May 26 PM: With all the activity in this house, I could not keep up this page. Fun activity though!!
The bath was a major success, until we had to remove him from the water. That didn't cut it for him.
Dr. Dudell and the nurses at NICU would be proud of him, he is averaging 450 cc of mom's milk
per day. He is usually most hungry at the 3:30 AM feeding (the one assigned to dad ;-). At least
he does go back to sleep right away (usually). Administering meds is becoming more of a routine
now, for all of us. A couple of things I have noticed as a new dad:
- Never remove a pacifier from the mouth of a content kid unless you have something to
replace it with.
- The pacifier is most appropriately named tool EVER.
- Never enter a room without a pacifier carrying a kid, sleeping or awake OR make
sure to stock each room of your house...
- Baby poop does not conform to normal laws of gravity and momentum.
- Babies are not shy.
- The human body can survive on two 2.5 hour segments of sleep for only a little while.
- It's amazing what you need to do for an eight pound boy.
- It's amazing what you want to do for an eight pound boy.
- Grandparents are great things.
- Mothers will do anything at any time for their kid.
- Yours is the cutest baby you have ever seen in your life.
- The smile of your baby is the strongest force you have ever seen.
May 29 AM: Time sure flies when you are enjoying things (and in a fog due to lack of sleep).
I cannot believe it's been 3 days since I wrote here! I seems like yesterday. Let's see, he
went to his second pediatrician appointment on Tuesday. He gained 3 more ounces over the weekend.
I think our feeding schedule is working (at least for him ;-). His blood count was up to
normal levels, so it looks like no anemia. All is well... It's nice for us to see him acting
just like any regular baby. He cries a little, smiles a lot, dirties his diapers, loves
to be strolled around the neighborhood, eats like a pig, and loves to be in the action. He
cries more when he hears sounds in another room that he cannot see. If we are having dinner,
he wants to be in the room so he can watch. Then he's happy. His expressions are great too,
sometimes I would swear his is about to start talking to us. There's a lot behind those eyes.
I should be developing another roll today, sorry I've been so late getting more pictures out!
May 30 PM: Another pediatrician appointment this morning with Dr. Battey. She is REALLY nice.
Tyler gained another 3 oz!!! This is a good sign. I'm not sure what the deal is with him and Dr Battey is though,
every time she walks into the room, he has a tantrum. I keep telling him that we are
not going to leave him here, it's not the hospital, but he doesn't listen. I'm afraid
she is going to get a complex... I'm sure she's seen it before.
We got a little bold yesterday, we took him to the Price Club for a quick run. He
seemed to like it, but I think the heat finally got to him. He lost it while we
were trying to eat lunch. It didn't last too long, but it was our first public
event! He still sleeps at least three hours at a stretch at night, but his best
time is first thing in the morning. He smiles with his entire body when you come
up to him then. What a cool kid.
Continue to June Page
He then began to get into his life. Looking around the room, checking
his environment, and wanting food. At 5:30 am on Wednesday, Marilyn
(the wonderful night nurse at the time) noticed his color was not as
good as she would want. He was 36 hours old. She wheeled him down
to the NICU (Neonatal Intensive Care Unit) and
our problems began. At first they thought it might be an infection that
was an issue, but could be treated with antibiotics. After an hour or so,
that seemed to not be the case. The second thought was a blocked artery that
could be repaired with a relatively straightforward surgery. They stabilized him, then
transported him to Children's Hospital in San Diego. They were then able
to run an echo-cardiogram on him to get a clear picture of his heart. Unfortunately, this
showed that the artery was not blocked, he actually had no left ventricle (called
a hypoplastic left heart). Our options
at that time were:
