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Diary
Entry: |
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1 |
Marilyn
Nicole was born on 11/12/96 at 6:06 am EST at Eastside Medical Center, in Snellville, GA.
She was a little on the premature side (26 weeks gestation), but she is doing great. She
weighed in at 2lbs. 3ozs., and was 14" long. Immediately after birth she was given surfactant which is a substance that
helps maintain the expansion of the lungs to assure the transfer of oxygen through out the
body. Full term babies and adults produce surfactant, but premature babies lack this
substance. She started off the day by being placed on a respirator, but by the end of the day she was breathing with the
help of a CPAP. (pronounced "C"-pap)
CPAP stands for continuous positive airway pressure. The CPAP "helps" her breath
by adding a little extra oxygen to what she breathes in. Marilyn's "mommy" is
doing great, and hopefully will return home on 11/15/96. Unfortunately, little Marilyn
won't be coming home to her new family until about February. God has really looked over
her, and she is making great progress. |
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2 |
Nothing much happened
today. She continues to breath with the help of the CPAP. Her skin color is a little on
the red side, and that is why she looks "sun burned" in the photo. She is
undergoing phototherapy to
control jaundice, and gets to wear cool
little sunglasses while the light is on. |
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3 |
Marilyn is moving right
along in her little life. Today she got to come out of her incubator, and we got to hold
her for a few minutes. I heard her cry for the first time, and it was simply music to my
ears. She has lost a little weight, but according to the doctor, that is to be expected. |
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4 |
Stephanie was released
from the hospital today, and Marilyn lost a little more weight. (1 lb. 14.5 oz) Marilyn
was removed from the CPAP, and placed on a nasal canula. This just provides her with a little more oxygen
than what she is getting from room air.
It isn't easy for us to come home and leave her there, but we are looking forward to the
day that she can come home. She had an ultrasound done on her head today to insure that
there was no intracranial
hemorrhaging. We are waiting to hear the news on that. |
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5 |
Today she was taken off
of the nasal canula, and is breathing on her own. Right now we are experiencing a little
bit of apnea, but the doctor doesn't seemed
very worried about it. The area of her brain that controls breathing is underdeveloped (as
with all premature babies), and she forgets to breath from time to time. A little
stimulation will remind her to take a breath. She has lost a little more weight, and now
weighs in at 1 lb. 13 oz. Her mommy got to hold her today while she slept. She was also
taken off of antibiotics, and her "mothers milk" was increased by .5cc. We got
the results from the ultrasound, and everything looks great. The doctors and ourselves are
really impressed by the amount of progress that she is making. |
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6 |
Marilyn is still
experiencing bouts of apnea, and she is receiving medication to help control it. Due to
all the blood that has been taken from her to check for infections and to measure the
oxygenation levels in her blood, she was given blood to replace what was taken. Please
keep in mind, that if you are able to give blood, please do so. Her weight has come back
up to 1 lb. 14 oz. |
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7 |
Today she had a rather
sever bout of apnea while we were visiting, and the nurse had to rub her back to
"remind" her to breathe. She was placed back on the nasal canula supplying her
with room air. This will provide a constant supply of air that will help remind her to
breathe. No change in weight. |
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8 |
Marilyn was placed on the
CPAP today to help control the apnea and bradycardia that accompanies it. She has gained a little more
weight, and now weighs 1 lb. 14.5 oz. She was a little jaundice today, so the phototherapy
was started again. |
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10 |
Marilyn is still
breathing with the help of the CPAP. Her doses of aminophylline has been increased to help control the apnea and
bradycardia. She gained 10 grams overnight, and the phototherapy was stopped. She received
another blood transfusion to help replace the blood that was taken for various tests. She
has been on and off of oxygen for the last two days. Oxygen percentage has been around
22-23%. We got a chance to see the doctors discharge plans, and he anticipates that she
will be able to come home at 36 weeks gestational age. (About 1 month prior to her due
date of February 16) |
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14 |
Not much has happened
these last few days. The doctor decided to attempt to remove Marilyn from the CPAP and
place her on the nasal canula, but that only lasted for about 3 hours. Her apnea started
up again, and they placed her back on the CPAP. She finally made it back to 2 lbs. today,
and mom and dad are so proud of her. She received another blood transfusion today. I would
like to extend a very grateful thanks to our family, friends, and the students and staff
of Dacula High School. Without their help, these last two weeks would have been much
worse. Thanks again. |
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15 |
The nurses are starting
to give the neonatologist a hard time about Marilyn being on the CPAP. Her little nose is
getting sore from being on the CPAP, and the nurses want to give her a break from it.
Marilyn's daddy went and gave blood today, so that she would have some for the next
transfusion. She gained an amazing 100 grams, and is now at 1007 grams. The nurses
couldn't believe the weight gain, so they had to weigh her 3 times to be sure. She was
placed on a "bumper" bed today to help "remind" her to breathe. About
every 10 seconds Marilyn will raise up a little, and then sink back down. It is
interesting to watch her going up and down in her incubator. |
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20 |
Things are progressing
right along. Marilyn is still battling apnea and bradycardia, but they are now happening
with less frequency. She got to come off of her CPAP for about an hour today, and did real
well with it. On 11/29/96 the NICU staff discovered that two of the baby had contracted
the RSV virus. They were isolated from the rest of the other babies, but now we have to
wear disposable gowns, gloves, and masks. I don't have much information on that particular
virus, and I hope to find some soon. Her weight has been fluctuating a little, but right
now she is holding at 1045 grams. (Please see the conversion
chart.) Thanks to everyone that has included Marilyn in their prayers. |
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21 |
She was diagnosed with BPD today, and she might also
have NEC. The BPD, according
to her doctor, seems to be mild. He intends to place her on steroids to help control the
BPD. This will also help to end her apnea and bradycardia. Her doctor isn't sure about the
NEC, but he feels that it will be best to treat her for it with antibiotics just in case.
It is fortunate that if she does have NEC, that it was found at an early stage. She now
weighs 1000 grams, and is 15 1/2" long. |
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22 |
She was taken off the
CPAP today and placed on the nasal canula to give her nose a little rest. She seems to be
doing well on the nasal canula, and they might attempt to remove her from it if she does
well during the night. Her intake of breast milk has been stopped so that the doctor can
deal with the NEC. She is only receiving IV fluids now, and might be placed back on breast
milk in 7 days. She gained a little weight in the last 24 hours, and now weighs 1035
grams. |
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23 |
Well, she was placed back
on the CPAP today. We got to see her little face for at least one visit. Treatment of the
BPD will start once the treatment for the NEC has stopped. Welcome aboard the NICU
emotional roller coaster. |
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25 |
She was taken off her CPAP again
today. (Seems as though I have written that before) The NEC appears to be clearing up, and
as a welcome side effect, so has the apnea and bradycardia. She continues to gain weight,
and now weighs 1049 grams. |
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28 |
Baby M has had a great couple of days.
She has managed to stay off of her CPAP, and on a nasal canula. Weight has increased
everyday, and she now weighs 1134 grams. She was given an extra dose of aminophylline to
help control the apnea and bradycardia. Her feedings of breast milk was started again
today, and she is receiving 1cc/hour. Her length was measured last night, and she is now
15 3/4" long. Her antibiotic treatments for the NEC will stop tomorrow. She is
receiving 26% oxygen through her nasal canula. |
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30 |
She was placed back on
the CPAP on 12/09/96, because her apnea and bradycardia was happening more frequently. She
continues to gain weight, and now weighs 2 lbs. 10.2ozs. The NEC seems to be well under
control. Nothing much else has happened the last few days. |
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31 |
HAPPY BIRTHDAY |
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32 |
Breast milk intake
increased to 2cc/hr. She is still on her CPAP, but she is able to take a break from it
when we come to visit. She is breathing room air, but occasionally she is given additional
oxygen. Stephanie got to hold her for over 2 hours skin to skin, but she became a little
tired and began to have spells of apnea and bradycardia. I think I need to mention that
she receives her milk by gavage
feeding. The doctor is waiting to increase her breast milk until she stools again. |
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33 |
I got to hold her for a
little while today. She wasn't wearing her CPAP, so we got to give her her aerosol treatment. She
seems to enjoy the aerosol treatments, because she seems to smile a little while getting
it. We were able to stay while the nurses weighted her. She becomes real active during
weighing, kicking and swinging her little arms. She now weighs 1265 grams. |
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34 |
Today was a big day for
all three of us. She was taken off of the CPAP, and placed on the nasal canula. (We think
this is because she likes her weekend nurse.) This may not last long, but we will have to
wait and see. We arrived in the NICU just in time to take part in giving her a bath, and
help in weighing her. Stephanie bathed her, while I video taped it all. We haven't
realized how dependent we have become on her various monitors until tonight. While Marilyn
got a bath and was weighed, her monitors were disconnected. She did fine while off of the
monitors, but we felt as if a big weight was lifted off of us when she was reconnected.
Marilyn's grandmother and great-grandmother came to see her, and grandmother got to hold
her for a little while. She is still receiving 2cc/hr of breast milk, 6cc/hr of IV fluids,
and .5cc/hr of intralipids See, I
told you it was a big day :^) |
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36 |
Wow. Another surprise.
She was taken off of her nasal canula this morning, and has gone all day with no episodes
of apnea or bradycardia. We decided to visit her later at night so that we could
participate in bathing and weighing her. Being able to participate in her
"activities" makes us feel a little more like parents. She had her eye
appointment today, and I am happy to report that everything looks normal. There are so
many things to be afraid of, and thankfully, we can at least put ROP at the bottom of that list.
Her breast milk was increased to 2.5cc/hr at full strength. (It was at a 50/50 solution of
water and breast milk) Oh yeah, she topped 3 lbs. today. She weighed in at 1396 grams. I
wonder what tomorrow will bring...... |
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37 |
Still going strong
without the nasal canula or CPAP. She has had only one spell of apnea and bradycardia
today, and that is down from the usual 5 per day she was having last week. She continues
to gain weight, and now weighs 1431 grams. Her breast milk was increased to 3cc/hr, IV was
dropped to 5cc/hr, and intralipids are at .7cc/hr. I finally felt comfortable enough to
give her a kiss tonight, and a big smile came across her face. It probably was only a
random facial express, but it still made me feel good. |
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39 |
Pretty much remaining the
same. Weight is now 1492 grams, breast milk at 3.5cc/hr, intralipids at .7cc/hr, and IV
fluids at 5cc/hr. |
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42 |
Marilyn had a great
weekend. Her grandmother and great-grandmother came to see her again, and both were able
to hold her. She is doing very well on her feedings and has been changed from a continuous
feeding to a scheduled feeding. She receives 12cc every three hours. She isn't big enough
to try to bottle feed, because she doesn't have the suck-swallow-breathe reflex perfected
yet. She has been graduated to a larger size pacifier, and she gets to suck on the
pacifier while she is receiving her feeding. This is to help her to associate nursing with
a full tummy. The NICU staff will attempt to get her to bottle feed in about 3 days, and
if that goes well they anticipate being able to remove her IVs. She has really grown a lot
over this past week. She is now 16¼" long and weighs 1616 grams. The apnea and
bradycardia has almost completely stopped. She only has a spell once in about 24 hours.
Her doctor told us that eventually one day she would just stop. All her little NICU
friends are going home, and what started out to be a full NICU will be down to 2 babies by
tomorrow. That will make Marilyn the "Senior" NICU baby. |
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43 |
We got a great surprise
today when we went to visit her. We found out that one of the nurses decided that since
she was awake and alert that she would try to bottle feed her, and she did great with it.
We went back for her next feeding and she did it again. Needless to say we were completely
surprised, since the NICU staff thought that it would be another week or so before she
would be able to bottle feed. We couldn't have asked for a nicer Christmas present from
her. We were still at the hospital until Santa arrived at 2 am on the 25th. Marilyn wasn't
too interested in seeing Santa, so Santa filled her stockings with toys and cards from
family. |
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44 |
She is still doing great
with the bottle and her doctor wants us to bottle feed her once a day. The other feedings
will continue to be through the gavage tube. They will increase her intake of breast milk
by 1 cc every 12 hours (Currently she is getting 15cc/feeding.) She isn't doing to well
with her IV's. Because she keeps pulling them out, so NICU staff hopes to wean her from
them in about 3 to 4 days. When we arrived at the NICU for her 7pm feeding, we found a
Christmas card from her waiting for us. I wondered what she did with all her spare time,
and now I know. :^) Her weight is now at 1673 grams. |
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45 |
The other baby that was
in the NICU with Marilyn died today. He was a 25wk preemie, and had a sever case of BPD.
It forced Stephanie and myself to reflect on the past 6 weeks, and realize just how
fortunate we really are. Marilyn had a few problems, but nothing like her NICU friend. My
thoughts and prayers will continue to go out to his family. |
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47 |
Marilyn is doing well with her bottle,
and the nurses are trying to feed her from the bottle every three hours. Right now she can
only bottle feed 3 times a day well, while the rest of the time she is gavage feed.
Marilyn is running out of IV spots, so the doctor told the nurses that once this IV went
bad not to reinsert another. Well, it went bad again tonight, and she is now off the IV,
and is receiving all of her nourishment from bottle feeding. They are also turning down
the temperature in her incubator in an attempt to move her into a bassinet. This means
that she will probably not gain weight as fast as she has, because she will be expending
additional calories keeping warm. Looks like we are getting close to her coming home. |
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49 |
I got a chance to speak
with her doctor today, and he anticipates her coming home in about 7 to 10 days. It is so
hard to believe that she might be home that soon, but before she will come home she must
be able to maintain her body temperature while sleeping in a bassinet, and also be able to
take all her feedings from the bottle. Right now she is stilling sleeping in an incubator,
but the temperature continues to drop a little each day. She weighed in last night at 4
lbs. 1 oz, and we are so proud of her. |
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59 |
The day has finally arrived, and
little Marilyn is heading home. We never would have thought that after spending 59 days in
the NICU, that Marilyn would be coming home almost 6 weeks before her due date. She came
home on an apnea monitor, and is taking medication to help prevent any apnea. She now
weighs 4lbs 10oz and is 16 3/4" long. What a change from the 2lb 3oz little girl that
I first met on Nov. 12. I guess this closes the NICU chapter of her life, while opening an
entire book of experiences to come. Thanks to all that have given their support and
prayers, and a special thanks to all that have come to visit Marilyn's Diary. |
