03/27/03
Andrew is about one and a half years old now
and is doing great. He has no medical complications and is a
healthy little boy. It sure has been quite a ride since October
16, 2001. We did it though and are stronger because of it.
If you are going through the scary situation of having a preemie I
hope that our story can help inspire you to hang on day by day until
all of the sudden your little preemie isn't so preemie anymore and is
running all over your house.
01/23/02
Andrew had a follow-up visit with his
doctor. He weighed in at 7 lbs 11 oz.
His heart and lungs sound good and his blood tests came back good as
well! He is going to touch base with the Neonatologist to get an idea
of how long that Andrew will need to remain on his monitors.
01/15/02
I took Andrew into his Doctor for a check-up
because after going several weeks in the hospital without having an
apnea he had one around 8 pm the night that he came home. Everything
checked out okay and he thinks that it was from the stress of
adjusting to a new environment.
01/14/02
Andrew was released from the hospital today
weighing around
7 lbs 8 oz.
He had an MRI done on Thursday and that came back looking great! His
hydrocephalous is gone. :) He just has a few small lesions left over
that should go away with time. He had his hospital photos taken on
Thursday also.
He will be seeing
his Dr in Grand Rapids once a week for a least the next month. He
wants to follow him closely. Andrew is going to see his pediatric
ophthalmologist on this Friday for a follow up. He needs to visit a
feeding clinic and also his neuro surgeon and neurologist in 3 to 4
months.
Andrew is on
Simalac Neosure for his formula and we have to add vitamins to it
twice a day. He is home on Theophylline, Aldactazide, Sodium Chloride
and antibiotic eye ointment. He is on an apnea home monitor all the
time and also an oxygen pulsimeter for his feedings.
He seems to be
adjusting well. On Monday night he had his first apnea and brady in
several weeks. He required stimulation for it... talk about scary!
They think that it was just from the stress of being in a new
environment. Today he was doing MUCH better!
Until the end of
April Andrew can not go out into public :( We have to wait until the
end of RSV season so that the risk of him getting it is very low.
Which means that there's no grocery shopping, church, or the mall.
Kyle has been a great help and got our groceries tonight. :) He is
also not suppose to be around other children until the end of April.
:( A few days before we left the hospital there were three cases of
RSV admitted so we know that it's going around the Grand Rapids area
right now and need to be especially careful.
If Andrew gets RSV
he will most likely end up back in the hospital and develop chronic
lung disease that will stay with him for the rest of his life. In
preemies and small babies it acts a lot like pneumonia. The alveoli at
the bottom of the lungs fill with fluid... once that happens the cells
are damaged and can not heal themselves. Adults can get it too, but
usually it just appears to be a cold... some adults don't even show
symptoms.
Andrew can have
occasional visitors starting next weekend. We just ask that if you
have been feeling under the weather, had a cold, or the flu on or a
few days before you were planning on stopping by that you reschedule.
The hospital also said that if anyone gets over here and starts
sniffling, sneezing or coughing that they need to put on a face mask
just to be safe. And, as with other babies we need to wash our hands
before picking him up.
01/10/02
The preliminary results came back from
Andrew's MRI that he had at 10 am. They show that he has NO PVL.
What a relief & blessing! They said that it is not something that can
pop up later either. The only thing was that he had a few small
lesions left over from his hydrocephalous. There is still a
possibility that he could have a few muscular developmental set-backs,
but judging by his immediate progress if there is any it will be very
slight or non-existent.
01/09/02
Today we found out that if Andrew has a good
rest of the week that he will get to come home on Monday 1/14/02.
This Saturday we are going to room-in at the hospital and get use to
the home apnea monitor and oxygen pulsimeter. Andrew will be coming
home on some medications that we will be giving him here, pediatric
vitamins, and also on Neosure... a high calorie baby formula. This
morning he weighed in at 6lbs 14oz.
01/02/02
Andrew is at high risk for
having Periventricular Leukomalacia (PVL). Children who have PVL are
at high risk for cerebral palsy. Only time will tell how this will
unfold.
12/29/01
Guess who turned
6 lbs today???
12/21/01
Things are still about the same with
Andrew. He is slowly gaining weight, is still having some of his
feedings through a tube and some through a bottle. He is having
occasional alarms throughout the day and has been very tired. We were
told that it is expected that his progress is slow right now because
most of it revolves around breathing and when he was born he had
severe respiratory problems. It will take him awhile to catch up
because of his complications when he was born. He will be fine once
he catches up. :)
12/18/01
After being around Andrew yesterday you
would never have guess that it was the same kid today! He drank 4
full bottle feedings with no problems. He was on oxygen support
through a nasal canula, but that was all. He is now up to 55 cc's
every three hours. I gave him a bath this morning and he really
enjoyed that. He weighs 5 lbs 8 oz
already.
12/17/01
Andrew had a rough day. We were going to
give him a bath but he was having to many alarms and not keeping
himself together. He was not managing his feedings well. :(
12/13/01
At tonight's weigh-in Andrew was
4 lbs 15.9 oz!
Just 0.1 oz away from 5 lbs.
Things are going pretty much the same
for him. He is still having problems with periodic breathing and
swallowing and breathing after he sucks during his feedings.
12/08/01
Yeah! Tonight was the first night that
Andrew had an all around positive experience bottle feeding! ( Right
now he gets 42 cc's every three hours.) We went into the hospital to
be with him for his 9 pm feeding and he was showing signs of rooting
so, the nurse decided that it would be a good time to try his bottle
feeding for the day. He finished it with stopping only twice to burp
and had it down within 15 to 20 minutes. The only thing that he
required was a little oxygen support every once and awhile. All that
the oxygen support entails is... the nurse holds an open ended tube
that blows out 100% oxygen in the direction of his nose.
His weight tonight was 4 lbs 9.5 oz
12/05/01
Andrew was taken off of the nasal canula
today! He has gone two days with no true alarms. The nursing staff
has also decided not to leave Andrew's feeding tube in and reinsert it
for each feeding. He kept pulling it out in-between feedings, even
though it was taped into place.
12/04/01
Andrew weighed in at
4 lbs 5.3 oz and
was taken off of his reflux medications.
11/26/01
Tonight we
were only able too see Andrew for about 5 minutes because there was
another baby on its way to the NICU. We had a surprise when we went
over to Andrew's Isolette and looked in. At first we didn't see him
and thought that one of the nurses had him out... to our surprise no
was holding him. Kyle got a closer look; he had wiggled his way down
to the bottom of the Isolette... and pulled his feeding tube all the
way out and off including the tape!!! The nurses got a laugh out of
it too because during that whole time that he did that he never
alarmed. Believe it or not Andrew is already up to
3 lbs 11 oz!
11/19/01
Andrew is continuing to do well. We have
not gotten the official report back from his head ultrasound on That
was taken yesterday morning. The preliminary report said that it was
improved... to what degree and what improved is what we are waiting to
find out. He is still putting on weight. Currently he is at
3 lbs 3.7 oz Most
of his alarms are around his feeding times. His sphincter muscle is
not toned and developed enough to keep all of his food down in his
stomach. When it comes back up it doesn't come all the way back out
and sits in his throat. The extra stress and activity cause his heart
rate to slow down. They have started him on two acid reflux
prescriptions to try and keep his food from creeping out of his tummy.
11/16/01
Sorry the updates got a little behind. We
had company over the weekend and then I had the flu on Tuesday and
Wednesday. I'm feeling better now and so far Kyle hasn't been feeling
sick. Hopefully, he won't end up getting it!
Andrew is still improving. Andrew's head ultrasound results came back
and it looks like his bleeding has stopped! So, the shunt procedure is
not looking like something that Andrew will need to go through. He
will continue to get a head ultrasound every Monday.
He is off of his IV and they are still increasing his feedings little
by little. As of 2 am his feedings were bumped up to 20 cc's. He is
still getting his feedings through a feeding tube that goes directly
into his stomach. In another week or two maybe he will get a shot at
trying to take from a bottle. One of the many major obstacles with
preemies is that they don't have the desire to eat on their own. He
does have a sucking reflex, and they have been working with him and a
pacifier when he gets the tube feedings to encourage him for when his
bottle day comes.
On Monday, 11/12/01, he hit 3 lbs
and has been staying right around that weight throughout the week.
11/10/01
Andrew is still doing well. His feedings
have been increased to 10 cc's every two hours. He has been having
less alarms during the day and many of them he corrects on his own.
Today his umbilical cord stump fell off and his belly button is
starting to heal. He also got some new preemie caps sent to him from
his great-grandma and aunt. :)
11/08/01
This morning Andrew graduated out of his
warming bassinet into an Isolette. Last night they also decided to
skip the CPAP when he came off of the ventilator and put him right
back up to a nasal canula. On the 6th he was given two transfusions
which quickly helped him come back to good health. His color is
back... he had started to get pretty pale and pasty looking over the
past few days. His feedings are still going well. Slowly he is
starting to put on weight.
Last night we finally got to hold Andrew again! That was only the
second time that we have gotten to hold him since he was born. Right
now we can not hold him for extended periods of time because he can
not maintain his body temperature on his own yet. The closer that he
gets to his estimated due date the more often and longer we will be
able to hold him.
11/07/01
Yesterday Kyle's
contract extension was officially signed and is now until February
28th. This is a very good thing because his company is continuing to
re-evaluate on a monthly basis. It sounded like there is a possibility
that more of their employees could get laid off. They are suppose to
be receiving more funding for the first quarter of next year.
Hopefully, they will have the funding by the time that Kyle's contract
here is up and the layoffs will be over. We'll find out when we get
there I guess.
Andrew gave us a little scare on Monday night. He didn't take to his
feedings and his abdomen started to get really puffy and he was
uncomfortable acting and cranky. They were concerned about his bowels
and warned us once again that he might have to be transferred to the
other hospital out here to have surgery on his intestines. He had
x-rays on Tuesday and had them reviewed by the staff. They could not
find anything wrong and after giving him a short rest on his feedings
they started him back up on them. He has been taking well to them
again.
They also said that they will probably be switching him from the
ventilator to a CPAP today! :)
11/05/01
I just got back from the
hospital and this time I have good news! Andrew's ultrasound reports
came back and he has made significant improvement on his own. They
weren't able to tell me yet what grade bleed that his was being rated,
but they did say that he is doing well enough that he will stay at St.
Mary's hospital and they'll continue on like they have. He will have
an ultrasound every Monday to make sure that he doesn't slip back in
the other direction and they will also keep watch on his behaviors. If
any of his behaviors change and cause for alarm then they will order
an ultrasound immediately and go from there.
They have decreased
the amount of fluids that he is getting through IV after the amount
for his feedings was increased. He is now up to 9 cc's every three
hours. He has been taking very well to his feedings; this has allowed
them to increase the amount rather quickly. He is also off of his
antibiotics as of this morning. :)
Andrew will be
monitored throughout the day and evening and they are going to decide
if he is ready to come off the ventilator yet. He could be off it as
soon as tonight or in the morning. They are not sure if they will take
him straight off of it and leave him with no aid or have him work his
way back to no aid... first by switching to the CPAP and then to the
nasal canula. So far today he has been down to NO alarms unless he is
being suctioned. That is one of the main reasons why they are
considering taking him off of the ventilator again.
His color is
getting better every day and he is starting to get his spunk back too.
You can definitely tell that he is feeling much better.
10/30/01
Kyle and I were called into the hospital
today to see Andrew's doctor. The diagnosis is premature and not
official as of yet, but most likely what we are looking at is Andrew
having Post-Hemorrhagic Hydrocephalous. There are two scenarios that
we are looking at either (please excuse my lack of medical terminology
to describe the following... I'm not familiar enough with all of the
terms yet) the tube that drains the third ventricle into the fourth
ventricle is clogged by a blood clot and not allowing the fluid to
drain or the spongy material that rests above the spinal fluid is
clogged and not allowing the fluid to drain.
Dr. Winslow said
that we are going to wait until Monday and have another ultrasound
taken to see if the problem is self correcting. If it is not and is
getting worse then Andrew will be transferred to Butterworth-Spectrum
Healthcare's Hospital. There he will have a surgery to implant a shunt
under his skin that will run from his brain to his belly to allow the
extra fluid to drain.
This is definitely
not what we were expecting even a few days ago! There are some
positive things in this though... Andrew has never had a grade 4
bleeding of his brain and they will not let it get to that stage. With
a grade 4 bleed there is permanent damage. With the level of bleeding
that Andrew has we were told not to expect any long term damage. :)
So, until Monday we
sit, wait, and play the waiting game again.
10/30/01
Kyle and I had a wonderful weekend and got
to see Miss Saigon in Lincolnshire, IL. It was a wonderful performance
and we enjoyed the show very much. We also got to pick up some clothes
for us and some of Andrew's things from our apartment in Schaumburg.
Last night when we
were at the hospital we got some news that is on the downside.
Andrew's head ultrasound came back and his grade one bleed has been
upgraded to a grade two. Granted it is a low level grade two, but they
think that there also may be some fluid build up in his ventricles.
They are having a neurosurgeon review his ultrasounds to see if he has
Hydrocephalous. If he does have Hydrocephalous then he may have to be
transferred to a children's hospital for surgery. He would then remain
their for the rest of his stay in the NICU.
We don't know
anything for sure yet. We are all waiting to see how Andrew's body is
going to respond and what the findings are from the doctors at St.
Mary's.
For anyone
interested in reading more about Hydrocephalous I scanned the pages
out of a book that we have on preemie's that discuses it. The link is
on the website under alien baby.
Take care. We'll
update you when we have more news.
10/27/01
Yesterday (Friday) Andrew had what in the
NICU they refer to as a "naughty" day. He had to many alarms where he
stopped breathing, so first they tried moving him up from the nasal
canula to the cpap, but he didn't respond much better to that. Then
they decided that he needed to be put back on the ventilator. He was
really tired out and seemed pretty uncomfortable.
They pulled blood
to have some tests done and do some blood cultures to make sure that
he doesn't have a bug or infection. Chest x-rays were also taken to
make sure that he wasn't developing pneumonia.
I called this
morning and he is doing much better. We are going to play it by ear to
see when the ventilator comes out and he works his way back down to
the nasal canula. They are increasing his feedings to 2 cc's every
three hours he had been on 1 cc every 12 hours. This should help him
gain strength quicker. The ventilator will give his lungs a chance to
rebuild strength too. They haven't received any word from the lab
about the cultures and they said that no news from them is good news.
His chest was clear... it seems like he just had a bad day.
If anything
changes we'll let you know.
10/26/01
Andrew is still doing
great. There aren't really any changes other than his Jaundice levels
are going down.
Kyle and I are off
to see Miss Saigon this weekend and should be back around Sunday
sometime. Have a great weekend.
10/20/01
Andrew is still doing really good. They've
moved him off of the cpap and onto a new breathing aid device that is
much less intrusive than the cpap. They are going to be keeping him on
it for a bit to make sure that his little lungs don't get to tired
out.
We've pasted the
critical hours in which most of the problems occur with flying colors!
:)
He does have a
grade one cranial bleed, but that was expected and grade one is the
lowest level bleed. When we start approaching a level 4 is when they
REALLY start to worry and take corrective action. Right now there is
no need to treat it and they usually clear up on their own.
The next big
hurdles for him are switching off the iv's from the artery and two
veins in his umbilical cord to either his head, leg or arm, and in
about a week they are going to start him on feedings. When he starts
in on his feedings there is a chance that he can develop an infection
in his intestinal track.
His swelling and
extra fluid retention is way down and his face, arms, and legs look
much better. He got his first hair washing yesterday and almost liked
it. :)
He has a massage
therapist that is working with him once a day, the nurses are giving
one massage a day, and Kyle and I have been giving him his third
massage of the day. He is REALLY liking these. He is also catching on
really quickly on how if he starts to cry (which sounds cute in itself
because it is a whimper cry right now with his lungs being so small)
that it makes it hard for Kyle and I to leave. Ah, the dilemmas of
parenthood are evident already. LOL
Last night we
purchased a book of Shel Silverstein poems to take to the hospital
with us to read to him while we are there. Within the next week are
two we are hopefully, also going to be getting a digital camera so
that we can put photos up more frequently. I've been taking more but
haven't used the current roll up yet. I'll let you know when we have
those posted.