Born at 4:39PM on
March 25, 2007 in
My name is
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Sunday, December 20, 2009
25.5 lbs (as of 12-9-09)
Near the end of
summer it was a struggle to get Jordon to eat anything. He was in feeding
therapy twice a week and still would only eat about an ounce of baby food or
casserole puree with a fight. It was very hard for me to accept that he was
just not going to eat, but it was the truth and putting him and me through two
hours of torture each week was nonsense, so I removed him from the program.
About a month later, in August, Jordon was hospitalized for “Failure to Thrive”
and it was discovered that his intestines were herniated into his chest cavity which
explained why Jordon had little to no interest in food. It required him to
undergo major surgery (his sixth) to correct the problem.
After his
surgery I was advised to not push the foods and to let Jordon concentrate on
recovering and gaining the weight that he desperately needed. If he did request
to eat then I could let him play around a bit, but eating never happened and
when I asked if he wanted to eat he was never interested. So I gave up and
stopped being so hard on myself for something that was not in my control.
I really
struggled as a parent with the fact that my child would not eat and did not
have the capability to chew, and still doesn’t. It was hard for me to see other
children (especially those younger than Jordon) sit down and gracefully eat a
hamburger - most of the time I would turn my head to stop the pain. Then there
was playgroup which Jordon and I attended together, and snack time was the
hardest time to get through. I cried when Ben’s nephew, who is a year younger
than Jordon, was eating a ham and cheese sandwich. I had to walk away so no one
would see.
As time marched
on, the facts weren’t so painful and it became easier for me to accept. Today I
still may feel envious, but I know that this is temporary and one sweet day my
son will eat a full piece of pizza with few crumbs left to see!
Slowly things started
improving to where Jordon will take his medication orally for his care provider
at the
Last week Jordon
asked to eat and was very adamant about it too. As I had in the past I ignored
him because the times before I would get him in the chair and he would refuse
to actually eat. But this time he put his bib on all by himself, and when we still
didn’t listen he became upset and more persistent. Ben took the tray off of the
high chair and Jordon then climbed in and dug into some applesauce while I
pureed the German Potato Salad that Ben and I were having for dinner. I was in
disbelief that he would really eat, but he sat there for about 20 minutes
eating and playing with what he was given. I didn’t coach or push or feed him,
I let him do what he wanted until it was obvious that he wanted to get out of
the chair.
Just the night
before he asked to eat I gave him a slice of pizza, his favorite, to explore.
He did not do as well with that, but it was not pureed either. I’m not sure
what sparked his interest in eating but I did alter his feeding rate a bit so
he has an extra two hours during the day to be a kid and not have to run around
with the backpack strapped to his back. He is currently at a rate of 70ml/hour.
This allows him to have a period in the morning, until 10am for a break and
then again from 1pm until 3pm and 5pm until 8pm. At 8pm he is then placed back
on the pump and remains throughout the night until somewhere around 7 to
7:30am. I think not being on the pump all day long allows his body to feel
hunger.
Jordon’s life
changed since the last update. He didn’t start school as planned because we
found a wonderful three bedroom, two bathroom home in our price range and over
the Thanksgiving weekend we moved. Once we were positive that we were going to
purchase, we brought Jordon and Stevie to see the
place. I took Jordon into his room and told him that this was going to be his
room and then pointed to where Stevie would sleep when
she is over. Stevie has her own room for now, but she
is aware that she will share once her little sister arrives in the beginning of
March. Both of our children were delighted with all the space - each child has
a bedroom the size of the family room at our old house.
This home literally
fell into our laps. I browsed around a bit at Ferrand
Estates Mobile Home Community last summer and stopped into the office to see if
there was anything available. Our budget for a new
home was very small, but I took a chance. The saleswoman took my name and
number and told me that occasionally residents would ask for help selling their
homes, and she would call if something came up. About 2 months ago, Ben and I
were out on a “date” and were discussing looking around that community again,
since it is so close to his work and a bus line if we need it. When we arrived
home there was a message on our answering machine that there was a nice double
wide available at the high end of our budget. After seeing the home in person,
which was perfect for our growing family and worth at least twice as much as
the asking price, we quickly decided to purchase.
We have been
here for just short of a month and Jordon has adjusted well. He has asked a
couple of time though if we could go “home” but how do you explain to a 2 ½
year old that this is home? He also was excited when we were in Standale going to the bank, and asked then, too, to go
“home.” Soon he will feel this is home. When it comes down to it I believe he
is happy here. I think he is sleeping better, and has not been so
over-stimulated, most
likely because there is more space and less clutter. I also feel that he is
becoming more independent too. He will now administer his inhalers to himself
(with little help) as well as his medication. He will insert the syringe into
his button, push the meds, remove the syringe, and hand it to me saying, “thank you mom!” No, thank YOU, son!!!
Well, I hope the
Holidays find everyone well and thank you again for following Jordon and his
progress. With the New Year I will
continue to keep everyone updated at least on a monthly basis. For now though, Merry
Christmas to all and Happy New Year!!!
November 21, 2009
25 pounds
It has
been a while and all has been well - I guess that’s why you have not heard
much. A couple of things have changed, though.
Jordon is
now a huge 25 pounds. He has fat on his cheeks, and his arms are not as scrawny
as they were in the spring. I have his medications regulated now and I am very
strict as to when he gets them. He was started on Neurontin
about a month and a half ago - his dose slowly increased until it was just
right. Currently he is at the maximum dose and so far it is working well.
Neurontin
is a medication that is usually used for treatment for seizures, but it also
works well for patients like Jordon who retch often without needing to. The
doctor thought that Jordon’s brain was telling him to retch when his belly gets
so full. Unfortunately, it may not have been accurate. In other words, his brain was telling him to
retch even when he didn’t have discomfort. Since being on this and giving
Jordon his medications the same time everyday, he is doing very well and
retches very little. Coughing from the cold he has had for a couple of weeks
usually causes most of the retching.
Hopefully once the cold has passed he will do even better.
October 13, 2009
22 pounds 6 ounces
Wow – I
just looked at Jordon’s website and realized it has been a month since the last
update! How time flies.
Jordon is doing
well and finally starting to gain weight. It took him about four weeks but he
is finally gaining about a pound a week instead of losing weight. This is a
huge gain and is a great start!
Already
the class at Ken-O-Sha is helping Jordon talk. We go
to a playgroup once a week with other children who are unable to speak well. At
this group the children are encouraged to at least speak the first sound of the
word of what they are requesting. I have taken the same approach at home, but
sometimes it is hard because I understand what he is saying most of the time,
or at least I can figure it out by what he is doing or holding. Since starting
this approach, Jordon has started to attempt to say new words, like “Ba Hmmm” meaning Ben home, Gadaddy
haow (Grandaddy’s house)
and Ahta Haow (Auntie’s
house.) Jordon really blows me away at
times when he approaches me and clearly says things like, “are you done?” “Mom,
I’m taking off,” and “awe, I love you too mom.”
Jordon is
becoming so independent - wanting to dress himself in clothing that HE wants to
wear, pressing the inhaler to release the med into the spacer, as well as
pushing the medicine into his Mic-Key Button after
connecting the syringe into place – all by himself. It
is great to see him excel this way. Most recently he has come to me with an
extension set and syringe to let me know that he needed to be burped.
Jordon
does not understand it yet, and will be a while before he does, but come next
March Jordon will be a big brother!! Right now Ben and I are 20 weeks pregnant, and patiently waiting for a healthy child – boy or
girl does not matter to us. I am being seen every 2 weeks by a high risk
specialist to ensure that I don’t have preterm labor as I did with Jordon.
My
pregnancy with Jordon was not normal. I
experienced things that I knew in my heart were not right, but the doctor told
me that everything was okay and every woman feels this way with their first
pregnancy. I ignored the pains and decided to trust the doctor. Big mistake –
and luckily I still have Jordon. I fired that doctor for not taking me
seriously. My new
Here are a
few photos from the last couple of months
Photos
from recent surgery
Wednesday, August 26,
2009
20 pounds, 6 ounces
Jordon had
his chest tube taken out on Saturday afternoon.
Almost immediately he was happier – well, he had to take a nap to get
that way, but later that night near the end of Granddaddy and Auntie’s visit,
Jordon was crawling around on the bed. I would have felt horrible if he would
have fallen out so I asked the nurse to switch him to a crib.
Jordon was
happy to see Ben and Stevie earlier, and Jordon and Stevie even got to play a
little before Jordon needed his nap. I was expecting him to be a little happier
to see her but he had just gotten the chest tube out and was in a bit of
pain. Still, he enjoyed their company.
Starting
Friday, feeds were increased by a half ounce every 3rd feed and by Sunday
evening he was back up to full feeds and tolerating them well. The surgeon was
happy with Jordon’s progress and sent us home around 3:30 Monday afternoon. I
was told not to expect Jordon to gain good weight until he is completely
healed, and to watch for a jump in average weight gain in about 3-4 weeks (we
will have weekly weight checks at the
Jordon is
still a bit clingy, but I suspect this is because he may still have some
discomfort and pain. I don’t do feeds around the clock every 3 hours like we
did at the hospital, but I do during wake hours and supplement with a night
drip to reach the full 30 ounces he needs in a 24 hour period.
I am happy
to see light in Jordon’s eyes again, light that I
didn’t realize disappeared until after the surgery’s recovery. He is so happy
now and laughs more, has more interest in playing with food, does not take as long
to adjust to new surroundings when we go away and is sleeping through the night
without waking up retching.
Thursday, August 20,
2009
Surgery Report
I have
been able to recuperate from two very sleepless nights, and have found time to
update you on JoJo’s surgery.
Jordon
and I arrived at the hospital Wednesday morning at 6:30 and he was finally
wheeled back to surgery at 8:40. The surgeon briefed Jordon’s dad and me to
explain that this is a big surgery. He said that there may be a great deal of
scar tissue from previous surgeries and said that there was a good chance that
the intestines were connected to the esophagus and that it could create a tear
when he lowers the intestines. He also said that he was going to place a chest
tube near the incision for any drainage. We should expect the surgery to last
up to five hours.
Jordon’s
nurse reported that the surgery start time was 9:56. Prior to starting, a couple of IVs and an
arterial line were placed. She said that Jordon went to sleep happy while playing
with a balloon on the doctor’s lap.
At 12:25
the nurse reported to me that there is less scar tissue than the doctor thought
there would be and Jordon is in stable condition. She could not at that time
give me an estimated time of completion.
Around
1:30, we were told that Jordon was out of surgery and the surgeon would be out
to talk to us shortly. 45 minutes later the surgeon came told us that things
went well and he is optimistic with the outcome. He also said there was a sack
around the intestines that was connected to the lung but it was easily removed
and the intestines went back into place easily. He placed a patch around the
esophagus to keep the hiatal hernia from recurring.
He will order a contrast study the next day to make sure there are not any
injuries from the surgery.
Later we
were told that Jordon had been having a hard time keeping the oxygen in his
blood stable and because of this he would be admitted to PICU for constant
monitoring. An hour passed before Jordon’s dad and I were taken back to see
Jordon. We were not in PICU until
4:45. Once Jordon was settled and Tim
went home, my mother, stepfather and I went down to the cafeteria for a bite to
eat.
Jordon
woke up every couple of hours last night complaining of pain, and eventually
the doctor ordered a Morphine drip. This
provided more comfort and he was able to sleep about three hours without
needing pain meds.
The
contrast study from this afternoon, Thursday August 20, showed that there are not
any injuries from the surgery and Jordon may now be on a clear liquid diet.
Tomorrow we will start feeds but at a slow rate - most likely a continuous
drip. In the meantime Jordon is doing well with pain management and has little
drainage, so we are waiting on a room in the general pediatric unit.
Wednesday, August 12,
2009
Jordon’s
surgery is scheduled for next week Wednesday, August 19. We will have to be
there very early in the morning since the surgery will be around 8:30am as long
as the previous surgeries run on time.
The
surgeon plans on going in through the ribcage where the fat connects the ribs.
Hopefully he can perform the surgery laparoscopicly,
but if not they will have to make a small incision.
While in
the chest cavity, the surgeon will push the colon back where it belongs and
reinsert the patch that was taken out during Jordon’s last surgery. As a
reminder, Jordon had a redo of the Nissen Fundiplacation last October after his stomach had
herniated. The surgeon placed a patch around the sutures to ensure that the
stomach would not herniate again. Since there was
unseen scar tissue connecting the stomach to the esophagus, it ended up
creating a small hole in the esophagus when the stomach was lowered (the
surgeon was unaware of this at the time). To prevent a large infection the
surgeon went back in a couple of days later to repair the hole and remove the
patch. He thinks the colon herniated because the patch was removed. Had the
patch not have been removed, Jordon could have gotten very sick.
Due to
Jordon’s history of injury from surgeries, the surgeon will order a contrast
study (Upper GI) for the day following surgery to make sure that Jordon did not
have complications. Jordon will spend about a week in the hospital under the
surgeon’s care for recovery. There is a chance though that Jordon will be there
longer if the doctor from the Neurodevelopmental
Clinic wants to keep him there to ensure that he gains sufficient weight. There
is also a chance that Jordon will be able to start the Intensive Feeding
Program while there too. If so, he will spend an additional 4-5 weeks inpatient
after the recovery time from surgery for the program.
Monday, August 10,
2009
20 pounds 9 ounces
Jordon was
admitted last week Monday after discovering that he had lost about 14 ounces
within a two week period. A series of
test were completed to find a reason, but no reason could be found.
The
Pulmonologist decided to do a chest x-ray to make sure there was not a problem
in his lungs, which could cause weight loss. The x-ray came back and showed
part of Jordon’s bowel near his mid left lung. The following day an Upper GI
was performed to check the severity and to see if surgery was needed
immediately. The Upper GI showed that Jordon’s large intestines have crept
their way up into the chest cavity. Since his bowels are working fine, the
doctors (including the surgeon, the neuro-developmental
doctor who follows Jordon’s weight and development, a gastroenterologist, and
the pulmonologist) got together to decide if it was more important for Jordon
to gain weight before the surgery or if it needed to be done soon. It is
unclear at this time if this is the reason for the weight loss but it can not
be ruled out, so surgery will be sooner than later, most likely the end of this
week or the beginning of next week.
At this
time I am waiting for the surgeon’s office to get with me on a time when I can
meet with the surgeon for a pre-surgery consultation and to schedule the
surgery. I will do my best to update you on the date, but please know that if I
can’t, I will keep you updated after Jordon is out of recovery.
Wednesday, June 10,
2009
20 pounds, 6 ounces
Jordon
went back to the Neurodevelopmental Clinic Tuesday, May
26, and was found to have lost weight over the holiday weekend. The doctor said
that if Jordon did not gain sufficient weight over the following two weeks that
he would have to be hospitalized until he is at a healthy weight. I took him
back yesterday, and (good news) he has gained an average of 17 grams per day.
That’s about six ounces per day, and five grams more per day than our goal. The
doctor was happy with this and allowed Jordon to stay home. She said that I am
doing great and to keep up the good work.
I was not
so sure if he would gain the sufficient weight that the doctor wanted because
on May 30th I took Jordon to the ER for rectal tears. The ER physician thought
that the formula that Jordon was switched to was too high in acidity and caused
slower gut dysmotility,
in turn causing frequent bowel movements. He contacted the Neurodevelopmental
Clinic Physician and she instructed him to have Jordon switched back to the Boost
1.5 calorie with fiber. Jordon did not tolerate this well (which is the reason
he was switched to another formula) and was unable to be on the drip for the
time period that was specified by the doctor.
Jordon
has been on Nutren Junior with Fiber with two scoops
per day of Duocal for the past week and a half. He is
doing well with this formula, but since it is lower in calories, he had to be
on the drip 24/7. Starting today, Jordon will be on the drip for 23 ½ hours per
day at a rate of 45ml per hour for 12 hours during the night and 40ml per hour
for 11 ½ hours during the day. He will then be able to have 1 ½ hours during
the day where he can go backpack and pump free! If he tolerates this for a few
days, I will increase the day rate 2ml per hour every other day, to allow him
an even longer time to be pump free. Our goal is to get Jordon back on bolus feeds. It will take a while to
get there, but I feel very optimistic about things.
Friday, May 22, 2009
20 pounds
Jordon
had his Intensive Feeding Therapy Evaluation yesterday. Recently he has not had
the interest to eat which started when he was in the hospital in April for
Rotavirus. It has been getting progressively worse. I have a hard time even
getting a spoon into his mouth.
Six
different people were in the room during the evaluation, the developmental
doctor, a Nutritionist, an Occupational Therapist, a Resident Pediatrician, a
Psychologist and a Social Worker. They asked a series of questions on his
social history, and his health and feeding history going back to NICU. The
Occupational Therapist did a few oral exercises with him with and without food.
Once they
were finished with the evaluation they stepped out of the room and had a short
conference to decide what the best treatment for Jordon is. Jordon was once
again diagnosed with Dysphagia, which I already knew,
but they added Gut Dysmotility. They decided that an outpatient Intensive
Feeding Program was best for him.
In this
program I am first watched feeding Jordon and then for whatever time is needed,
the specialists work with Jordon alone teaching him how to eat correctly. Once
he has a good grasp on things, I will then be put back into the situation and
trained myself. This program will take 6 ½ to 8 weeks to complete and we will
be there every day for 4 feedings or about 12-14 hours. The waiting list for
this program is much shorter than the inpatient of only 6-8 months. Everyone
who will be feeding Jordon will have to participate in this program for some
length of time, including Jordon’s Dad, Jordon’s Grandpa Lotterman, and Grandma
VanDyke. I was also told that it would be beneficial
for Benny to participate in a few sessions. If someone is not properly trained
on Jordon’s individual feeding techniques, then they will not be able to take
Jordon if a feeding needs to be given. This will put a lot of pressure on me,
not having the resources for respite that I do today, but I have to keep in
mind the best for Jordon.
In the
meantime, Jordon will be put back into Mary Free Bed’s program twice a week,
one hour sessions. The nutritionist is also going to do everything she can to
get Jordon to gain weight since he will probably lose weight in the program. He
has been switched to Pediatric Compleat, which is
liquefied chicken, vegetables and cranberry juice. It has fewer calories, but
hopefully he will tolerate this better and in time gain weight at a more
consistent pace. Jordon is on a continuous drip for 18 hours a day since the
beginning of last week and will be for another couple of weeks. The doctor
thinks that his gut needs a break from the intolerance of the soy-based Boost
which is high in calories which makes it harder to digest. Once we know that he
is tolerating the new source of nutrition, he will be put back on bolus feeds.
I also
found out that Jordon was approved to start a preschool next
Jordon is
speaking more clearly and his vocabulary increases daily. Although you may not
be able to understand what he is saying, he is able to put short sentences
together such as, “watch Elmo all done Mom…..down,” and “I want water” or “I
drink water.” He is also starting to initiate play and is getting quite
rambunctious – so much fun!
Saturday, April 11,
2009
Shortly
after the last journal entry was posted, the Neurodevelopmental
Clinic doctor returned my call – the clinic follows Jordon’s weight and
development. She is concerned that the amount of fluids that Jordon is losing
is more than his intake. Jordon is already severely underweight, but it is
crucial to stay hydrated, so she instructed me to have Jordon placed on Pedialite for 12 hours on a continuous drip for
“maintenance fluids” and to then resume the half strength formula for 12 hours.
If the symptoms have not improved after 24 hours then he may need to be placed
on an infant’s predigested formula. This formula will not be sufficient to help
him gain weight but it is easier for the intestines to digest and will make the
recovery time shorter. She told me that Jordon can have symptoms for weeks or
months – it has already been over three weeks.
I feel
more optimistic after talking to this doctor. As long as I work with them and
be attentive to Jordon, we can keep him out of the hospital. It will take some extra
work, but it is not anything I can’t handle. I conquered all the mountains that
had to be climbed and this is just a little hill.
I do
however, find it discouraging that every time we get on the right path of
Jordon gaining weight he gets sick and loses. I discussed this with the doctor
and she said children with “Failure to Thrive” have a hard time gaining weight
and lose very quickly. He is currently under the 3rd percentile on
the preemie charts now weighing 18 pounds 9 ounces.
Friday, April 10, 2009
Jordon
came home yesterday from the hospital but I am not sure if he will be home for
long. The instructions given to me by the doctor were to keep Jordon on full
strength drip until today and resume bolus feeds as normal. If he starts to
have too many episodes of diarrhea then I was told to dilute his formal with
half water.
Jordon’s
diarrhea started back up yesterday as soon as we got home. I called his
pediatrician’s office this morning and they told me to keep Jordon on
continuous drip for another 2 days at half strength. If it is this bad tomorrow
he will have to be seen by the ER to make sure he is not too dehydrated – I
hate to be pessimistic, but I have a bad feeling about things right now.
I will be
sure to let everyone know how Jordon is doing in a couple of days. He will be
spending the weekend at his dad’s.
Wednesday April 8,
2009
I took
Jordon to the emergency room Sunday afternoon because he had a distended
abdomen and I was unable to get any air out of his stomach when I “burped” him.
There also was a bulge near his right hip and I was extra concerned because he
had diarrhea for about 2 ½ weeks.
An X-Ray
showed that there was a lot of air in his belly and in his intestines. Lab
tests showed that Jordon was fighting an infection. A surgeon was consulted for
the intestinal block, but by the time he got to the hospital most of the air
that was in Jordon’s intestines worked its way out so the surgeon said that
they didn’t have to do surgery. Jordon was admitted to a general pediatric floor
at about 12:30 am to provide him with hydration and keep an eye one him to make
sure the block does not form again.
Monday,
Jordon was on “gut rest”, and clear liquids and a half formula half water drip
was started for the night to see if he would be able to tolerate it. He also
received half strength boluses twice. Almost immediately he started to get high
fevers and the diarrhea came back, so the drip was stopped and he was back to
clear liquids.
Tuesday,
a stool study showed that Jordon has Rotavirus and not an intestinal parasite
like the doctors first thought. This is something that children are vaccinated
for but since he was on chemo he was not receiving his immunizations. He did
get caught up the week before last, but by then it was too late - he already
had the virus.
Since the
doctors discovered that he did not have an intestinal parasite, feedings were
resumed at dinner time, but his formula was held back for another night. He was
very hungry and begged me almost all day to eat. He tolerated his food well and
had minimal diarrhea.
Today
(Wednesday) he has gone 24 hours without fevers and diarrhea, so a half
strength drip was started at 10 ml per hour. Every two hours the volume will be
increased by 10 ml as long as he does not spike a fever. Once he is to 30 ml
per hour and doing well, he will receive bolus feeds during the day at half
strength and a drip at night for 24 hours. If he does well with that, he will
go to full strength for 24 hours and then hopefully come home as long as he is able
to maintain hydration on his own – labs can indicate that.
I am
anxious to get home, but I also do not want to have to come back, so I am not
pushing Jordon or the doctors to get it done faster. He is able to communicate
better now and is handling the doctors better than his last visit. I do have to
remind him often to please use his words instead of screaming. He can say “owie” now and I am working on getting him to say “I hurt”
and point at where the pain is. Since he can understand me, I reassure him that
the nurses and doctors are not going to hurt him but they are here to make him
feel better. I do have a harder time
keeping him calm when lab comes in.
Wednesday, March 25,
2009 A Day to Celebrate
Can you believe
that Jordon is two already? Not too long ago I thought that we would never get
out of NICU, but we did!!!
So much
has happened since he was born - he has been through a lot. Six surgeries,
countless hospital visits, too many doctor appointments to count and even
feeding therapy. Nonetheless, today Jordon is a happy toddler. He may struggle
with feeding and have a harder time communicating than most toddlers, but he
sure has come a long way!
We had a
small birthday party for him last weekend with just the immediate family. It
was just the right size, not too many people but enough to celebrate with one
person in mind – Jordon! And it sure was a time to celebrate! Here
are some pictures.
Now on the
not-so-fun note: Jordon was seen by the doctors at the Helen Devos Children’s Hospital Neurodevelopmental
Clinic for his two year check up. His measurements were taken and recorded in
his chart. He is severely underweight, weighing just 18 pounds 15 ounces – yes
he did lose some more weight. He is at the weight where the doctors would
recommend a feeding tube to provide extra calories. But Jordon is already being
partially tube fed, so things seem to be more of a concern. They want to see
him every two weeks for weight checks until he is at a healthy weight.
His
regimen changed too; now instead of providing Jordon with the nutrition that he
did not take during the day at night through a drip, the doctors want Jordon
have bolus feeds 4-5 times a day. I have to
put him in his high chair and bolus 4 ounces of his formula and offer 2 ounces
in a sippy-cup. I rigged up a system to do this. I
zip-stripped a broom stick to the high chair and rubber band the syringe to the
pole so I don’t have to hold it. He gets a cheese puff to chew on and has to
take a couple of bits of pureed food so he doesn’t think that he doesn’t have
to work to get full. If he does not take the full 2 ounces in the cup after 20
minutes, I have to give it to him through the bolus. The doctor thinks that if
he has a full belly throughout the day, then his appetite will increase.
Already
he is more willing to eat and has even been sleeping through the night. Since
he is getting bolus feeds at all meals, he does not have to be on the night
drip, therefore I am not up the 2-3 times a night tending to the pump! Not to
mention that he has not needed a bottle to go to sleep in the last 4 nights.
It’s great.
Sunday, March 15,
2009
I was
browsing the internet and found a March for Dimes site that showed that there
is a march taking place in
I set up
a team and set a goal of raising $200.00. It is a small goal, but I am not sure
how many people I can get to participate on such short notice. If you are
interested in learning more about the walk or would like to help me reach this
goal, visit http://www.marchforbabies.org/default.aspx?si=&u= . Click the “Join a Team” button. Jordon’s team name is Jordon
Masters.
Everything
is well on the home front. Jordon is now saying a few more words like diaper
and slipper. He is not eating any better but I was told by his therapist that
progress would be slow. Right now the goal is to get him to drink more formula.
I told the therapist that this was not going to happen since he has little
interest in the formula and he would drink juice or water all day long. She
said to mix the formula with a strong juice at a ratio of 3 oz juice to 1 oz
formula. He likes this and drinks about 16 oz a day. Every week I will decrease
the amount of juice and increase the amount of formula until he is just
drinking straight formula.
Friday, March 06,
2009
20 pounds even
Jordon is
now saying about 20-25 words and identifies around 18-20 objects on flash
cards. He is also learning a new sign every day or so. The next sign I would
like to teach him is “sorry.” So far he can sign words like please, thank you,
more, eat, milk, drink, all done, shoes, help… and he can say most of these
words while he is signing.
Now that
I know he can identify objects on flash cards and say the words somewhat
clearly, it would be interesting to see if he could learn to say names
correctly if I had some flashcards made up with pictures of the people he is
most familiar with. He calls his Grandma VanDyke
“Mamma”, me “Mumm”, and Benny “BehBeh”
– it is so cute. Then whenever the phone rings, he runs to it saying “mamma,”
thinking that Grandma is calling!!!
The
service coordinator from Ken-O-Sha said that Jordon
is not too far behind what most children should be with vocabulary at his age.
It is almost like something clicked and he was suddenly able to say things. For
the most part I have been able to understand his babble and requests by his
pointing, but now he can tell me when he is hungry and when he needs his diaper
changed. That’s a huge improvement!
One more
thing: I have been using the term
“dysphasia” to describe a condition that Jordon has, but he has dysphagia, which is an entirely
different condition. All references to the wrong term have been corrected on
this website.
Friday, February 13,
2009
Jordon’s
service coordinator from Ken-O-Sha made a visit a
couple of weeks ago. She told me that Jordon graduated the Explorers group and
will be moving on to the Sights and Sounds play group. Children in the
Explorers group are encouraged to be more mobile. Children in the Sights and
Sounds group are encouraged to identify objects and name the objects. This
group is geared for the older 2’s, but Jordon needs a head start. We were going
to wait until Jordon was more stable on his feet, because all the children in
this group are bigger than him and we were afraid the he would get pushed
around. But we feel that this is a good move to make. Since eating and talking
go hand in hand, Jordon is not able to say many words, he is up to around 7-8
and signing a few as well. This group will help him to learn in an environment
with his peers and hopefully this will be more encouraging.
Can you
believe it - Jordon will be 2 in March?!! He has come a long way. He started
with a struggle and still struggles with some things, but he is making
improvement by leaps and bounds. I thought for sure by now I would be back to
work. For a while things slowed down, but as soon as I got a resume ready,
Jordon’s schedule went from one thing a week to something every day. I know
that I am right where I need to be – he needs my support more than anything and
I am a great advocate for him. Currently he has feeding therapy twice a week,
which most likely will be for a least a year. He still may need the intensive
program because not only does he need to learn to chew, he also needs to learn
to take in the proper amount of nutrition to keep him healthy without the
assistance of the feeding pump, and after that he will have to take some speech
therapy classes to learn how to talk. Therapy from Ken-O-Sha
and Mary Free Bed combined will be helpful since both programs will help him
learn to talk and still take different approaches.
Next he
has physical therapy twice a week. One day we go to a playgroup, which is good
for Jordon to see other children and learn from them, and one day a service
coordinator comes to our home and works with Jordon one on one.
The
remaining day of the week is left open for me to take Jordon to a drop-in
center. This is a group based program with 6-8 children in a day care setting.
I am able to drop him off at 10 in the morning and pick him up at 2pm. This is
good for Jordon and for me. It gives me an opportunity to take time for myself,
or go to doctor appointments for me, and if I can possibly coordinate it, I
will be able to go to my physical therapy, and not have to worry about finding
a baby sitter. It is also good for Jordon because it gets him away from me and
around children his age, and hopefully will help him to become less dependant
on me and more social.
Thursday,
18
pounds 3 ounces
Jordon recently lost a
pound, dropping him to 17 pounds 12 ounces, most likely because he started
walking. I also was reducing the amount of formula he receives for the amount
of baby food he consumed for that feeding. Since baby food has many less calories
than formula he was not getting enough. At first I was reducing the amount of
formula because his stomach could not tolerate a large volume, but now he is
taking almost his entire bottle and a full jar of baby food and if I give him
the opportunity, he will eat again two hours later.
His nutritionist at the
Jordon is in the second week of
feeding therapy and doing really well. He has a team of two therapists, meeting
with both once a week, and a dietitian, who will be assisting the
Saturday, December 27, 2008
18 pounds 12 ounces
Jordon had the video swallow study
a couple of weeks early. The study showed that Jordon has a weak suck while
using a bottle and he does not chew - he does more of a mashing motion when it
comes to hard dissolvable foods. He will be starting a feeding program twice a
week for twelve weeks, and he is on a waiting list for the intensive outpatient
feeding therapy program. The program runs five days a week, eight hours a day
for six to eight weeks. The hopes are that Jordon will be able to correct his
bad eating habits before the program has an opening, which could take as long
as a year. If Jordon does not improve after the twelve weeks then he will have
to be pre-approved through Medicaid for an additional twelve weeks until there
is an opening for the program or his habits improve.
Jordon tolerated his feeds for a
short period of time, but unfortunately, that is not the case anymore. It is to
the point where he is unable to tolerate the night drip. I talked to the
doctors at the neurodevelopmental clinic and an Upper
GI and a Gastric Empty test was completed to see if there were any problems
with the last Nissan that was performed. The studies showed that the Nissan is
intact and the stomach empties at a normal rate. I then asked what could be
causing the retching and the nurse said that this could be more of a habit for
Jordon, rather than a reaction to a problem. I will accept that for now, but if
it gets worse, I will seek a second opinion; excessive retching can lead to a
slip of the Nissan, and I want to prevent another surgery as much as I can.
Jordon spent a couple of days with
his dad for the holidays, when he returned it seemed that his appetite improved
dramatically. He went from eating just a few bites of baby food to eating a
whole jar and some times more. That is almost three times as much as before!!!
Jordon not only improved with
intake of both his bottle and baby food, but he also started walking. His main
mobility is now walking; I think he figured that it is faster to walk than it
is to crawl. It surprises me at times to see something move across the room and
when I look it is Jordon walking to get a toy or his sippy-cup.
He is into everything now, and I have to keep a close eye on him. He is also
increasing his vocabulary. He says words like hat, kitty, get it, that, and
best of all, he now calls me mom instead of dada.
Saturday, November 22, 2008 19
pounds
So, it’s been a while since I have posted an entry
to this website and you may be wondering how Jordon is doing….
Jordon is now tolerating food to the stomach both
orally and by the tube feedings. Even though Jordon is not too interested in
consuming anything orally, he is up to full feed at 105 ml between both hard
dissolvable and formula/fruit juice. I talked to his doctor about his lack of
oral interest and she recommended having a video swallow study with a thorough
oral motor exam. This study is scheduled for the week of Christmas and will
take a whopping 2 ½ hours (he is on a waiting list to get in sooner). There is
a huge chance that Jordon will have to undergo an intense therapy program at
Mary Free Bed, where he will be inpatient for at least two weeks for the
monitoring of Jordon’s habits and to provide treatment to allow him to consume
food correctly. At this time Jordon chews little and does not rotate his tongue
to move the food from side to side. As a result the food is pushed to the front
of his mouth and eventually falls out before he can swallow.
Jordon was recently seen by a neurologist and the neurologist
thinks that this could be a neurological issue. He is concerned that Jordon
favors the left hand while eating and playing and prefers the right leg while
in motion. He can’t diagnose Jordon at this time with a confirmed diagnosis,
but he thinks that Jordon may have a mild case of Cerebral Palsy, which also
could explain the eating challenges. After Jordon has completed therapy for his
feeding issues, he would like to see him again to do further studies, most
likely in a year or so.
Seeing the neurologist also makes it possible for
Jordon to be treated through Ken-O-Sha for another
year. If he passed the exam, then Jordon would be transferred to his home
school district (Kenowa Hills), but both Jordon’s
service coordinator and the neurologist are concerned that the right treatment
may not be available there. So for the next year, Jordon will be seen by Ken-O-Sha and participate in the weekly playgroups which are in
the Grand Rapids School district.
Before Jordon got so sick from the esophageal tear,
he was just starting to walk. Since he was bedridden for almost 10 days, he
lost a lot of the muscle mass he had and took a large step back. At this time,
Jordon is still not walking, but he is taking a few steps together. I have high
hopes (not expectations) for Jordon and am almost positive that once he figures
it out, I will be chasing him around everywhere.
I am anxious to learn the outcome from the video
swallow study and will be counting down the days. As soon as we get an answer,
I will be sure to let everyone know.
Thanks again and Happy Holidays.
Wednesday,
November 05, 2008
Since
I have started feeding Jordon orally, he has been continuously retching. I
called the on-call surgeon Tuesday night and he said to give Jordon a break and
if he stops retching to hook him up to the drip feed that he gets in the night.
He also told me to decrease the amount of food that he intakes because he has
not used his stomach in over a month and it needs to have time to stretch to
allow it to get back to normal.
This morning at about 5, Jordon woke up hungry
so I gave him a bottle. This bottle was smaller but Jordon was still unable to
tolerate the feeding. He retched for 45minutes until I called the on-call
surgeon. The surgeon told me to open the extension and let the stomach drain by
gravity, and he would get back to me later in the morning once he speaks to
Jordon’s surgeon to figure out what to do. Opening the port seemed to relieve
some discomfort for Jordon and he was back to sleep with in 30 minutes.
Jordon’s
surgeon called this morning and said to put Jordon on a drip to his stomach
using the feeding pump at a rate of 25 ml per hour. If Jordon tolerates this,
increase the volume 2ml a day until he reaches the full feeding, which is 35ml
per hour. If Jordon does not tolerate the drip feed, then he will have to have
a GJ again and be fed to the intestines until his stomach is ready for food.
I
put Jordon on a drip feed as the surgeon suggested and he still was retching.
After about a half hour of that I took him back off and left his extension open
to empty his stomach by gravity. I called the surgeon and notified him of what
I did. An hour later the nurse called
back and said that Jordon had an appointment this afternoon to have the GJ
reinserted. Now Jordon will be back on the pump 24/7 and be fed to the
intestines.
I'm
not sure how long he will be on the pump this way, and I am really not sure if
this is a great solution. Hopefully the surgeon knows what he is doing, but I
am still thinking about getting a second opinion.
It is a disappointment that Jordon has taken a step
back, but I was aware from the beginning that this would be a slow recovery.
Tuesday, November 04, 2008 18
Pounds even
Last weekend Jordon’s feeding pump continuously beeped
with the error “Flow Error – clog in line below pump.” It started Friday night
when Benny and I were out with the kids trick-or-treating. Every 5 to 10
minutes the pump would display the error, but there was not a fold in the line.
So I tried to flush the extension with water, but it was clogged. I changed the
extension and we went on our way but the error continued to chime, and each
time I would check for a folded line and set the pump to run again. Once we
were home I changed the bag and that seemed to do the trick.
Since my mother was in town and I needed a sitter,
Jordon went to her house for the weekend so I could go to my dad’s 50th
(whoah!!!) birthday party. On Sunday morning she
called to let me know that the same thing was happening to her. I called the
surgeon and he said to flush the line with Coca Cola, let it sit for 30 minutes
and run the pump again. It worked until Monday morning when the error appeared
numerous times once more. As I was flushing the line the surgeon’s nurse called
to see if the problem was fixed, or if she needed to order another GJ
button. (whoah!!!)
Originally, Jordon was going to be fed to the
intestines until he was off the Cipro. Since that
could have been as soon as Wednesday, I called the clinic and bumped the
appointment up to see if we could avoid a new button. As I was getting to the
hospital for the X-Ray and labs which needed to be done before the visit, the
surgeon’s nurse called and said that the surgeon decided that it was OK to
replace the GJ with the GT and resume Jordon on oral feedings!!!!!
The day was busy, but the outcome was great! Jordon’s labs and X rays looked good, and
Jordon’s last dose of Cipro was given this morning.
He is not tolerating the feedings well, but I don’t
think he is feeling good - he has been gaggy and has
had a lot of diarrhea. Since he can’t vomit, each time he has a gag fit, I
manually burp him using his button - which provides comfort. He rested most of
the day and played little. Hopefully he will feel better tomorrow.
Wednesday, October
22, 2008
Jordon
has been home a week now and is very clingy. For the first few days, I had a
hard time even leaving the room. He even got upset when I would get up out of
my chair to go and get something. Things are better now, so I am able to write
an entry and let you all know what has been going on the last couple of weeks.
The fluid
from the chest area that was suctioned out started growing some nasty “bugs”. This
is because there are bacteria in your mouth, and due to the tear in Jordon’s
esophagus, that bacteria escaped into his body and started growing. For his
stay, he was put on vigorous antibiotics that had to be given intravenously,
and Infectious Disease was consulted.
Jordon
had an Upper GI last Monday morning which showed that there are no longer any
tears in the esophagus. While in radiology, a GJ was placed. The surgeon still
would like some more time for the stomach and the esophagus to heal, so Jordon
will continue to be fed to the intestines for another 4-6 weeks.
The
feedings are going well - he is no longer gagging or retching, which is a huge
improvement even from the first few days after his last surgery. We go to see
the surgeon on Friday to find out if Jordon will continue with the drip to the
intestines all day, or if we are going to increase the rate for a few hours,
then take him off for a couple of hours. We also have a follow up visit with
Infectious Disease on Friday. The doctor wants to see him a week earlier than
planned because she changed his antibiotic to Cipro
from Augmentin. Once she changed that, I really
started to feel like a nurse with a degree! I have always felt like “mommy
nurse,” but with Cipro he can’t have steroids (his
inhalers) or anti-acids (his Previcid) for six hours
before and two hours after he receives the Cipro. He
gets all of his medications twice a day, so that leaves two, eight hour windows
where he can’t have his inhalers or his anti-acid. It’s tough to manage, but
with the help of my mother, we created a chart that I can record when Jordon
gets what, and then plan ahead for what time he needs his next medication.
Well,
hopefully we are at the end of Jordon’s troubles. I spoke to the surgeon and we
are only anticipating two more surgeries. One to remove the button, which will
be done once Jordon can feed himself a full meal with out the assistance of the
button for six full months, and the second surgery, will be to remove the hemangioma and repair the damage to his lip, which will
most likely be done in a few years. I want to hold off on that until he is in
school - he had been through enough so far – this can wait.
There is
a one in ten chance that Jordon will need to have a Nissan repair again. The
chances are the same no matter how many repairs are made, but each time Jordon
had the Nissan repaired it was for different reasons. He initially had the
Nissan Fundiplication in June of 2007. In August 2007 he had a repair surgery due to
one of his organs pushing in on the stomach. The wrap was a little loose and
tightened, but the main reason for the surgery was to relieve the stomach from
the pressure. The third Nissan was just recently performed because the stomach
was herniated and needed to be lowered.
I can
already see a difference in Jordon. He still may not be feeling 100% himself,
but his eyes are brighter and I believe that he is feeling much better than
before the operation. All I have to do now is shoot a smile at him and I get
one from him right back. I really had to work to get a smile before. He is also
starting to be more excited when people come to visit, and greets them with a
welcoming hello!
It had
been tough going through all this with Jordon, but I would not change a thing.
He is truly a blessing and warms my heart every day. I am also a stronger
person because of it. It is amazing how well I dealt with the 14 day stay at
the hospital and the two surgeries, but then again, I guess I have had a lot of
practice. I still am very grateful for all of the support I have received from
everyone; I can not thank you enough. Thank You!!!
Tuesday, October 07,
2008
Yesterday
(Monday), Jordon had an ultrasound to see how much fluid there was in his
chest. Later he had a chest tube in long
enough for the doctor to drain the fluid. Usually, if a chest tube is placed,
it is kept in place for a few days to allow drainage, but the fluid was thick
enough that is was easily removed with suction. Almost immediately Jordon’s
condition changed. The high fevers went away, he no longer requires oxygen, and
he is even starting to vocalize rather than just whine.
Today
Jordon had a GJ placed and he will start to be fed to the intestines this
evening at 10ml per hour. He was moved out of intensive care into a general
pediatric unit. The room is smaller, but at least we have a room to our selves
– when Jordon wants to sleep he won’t be interrupted by a roommate or the
roommate’s guests.
The
surgeon talked to me today and let me know that since Jordon had a (mild) fever
last night and since there such a small amount of fluid removed from the chest,
Jordon will have an Upper GI study. The surgeon wants to look to see if the
esophagus is draining and if so, where it is draining to. He thinks that it may
be draining into the chest rather than into the tube he placed on Friday. If he
is right, he may need to sedate Jordon long enough to place a trap to drain the
chest.
Sunday, October 05,
2008
Jordon did
not do so well today - he has been in a lot of pain. He still continues to need
one liter of oxygen through the nasal cannula,
however he can go a couple of hours without it as long as he doesn’t need too
much Morphine.
Since he
has had little to no drainage from his esophagus, Jordon will have an Upper GI
tomorrow (Monday) morning if the surgeon approves. During this time, the
radiologist will replace the mic-key button with a GJ button. The new button will have a
port that allows nutrition to be administered to the stomach as well as a port
to administer nutrition directly to the intestines. Still, Jordon will not
receive any nutrition orally or to the stomach because at this time the surgeon
would like the stomach and the esophagus to have a break to insure proper
healing.
Once a GJ
is in place, Jordon will be able to receive more than just Morphine for the
pain. Morphine is administered through IV, but there is not another drug that
he can have that way other than Toradol. He was on Toradol, but you are only allowed to be on this particular
drug for no more than 48 hours.
Saturday, October
04, 2008
Jordon
went into the hospital on Wednesday, October 1, 2008 to have surgery to repair
a herniated Nissan. The surgeon said the surgery went well and he
expected Jordon to make a quick recovery. A patch had been placed around the
wrap to insure that the wrap will hold and to prevent the stomach from becoming
herniated again, and there is an extremely high risk of whatever leaks from the
esophagus soaking the patch and causing infection. Almost immediately Jordon
came down with a high fever and had difficulty breathing. Jordon was watched
closely by his nurses and given Tylenol to reduce his fever, but it just would
not go away. Jordon’s surgeon ordered an
Upper GI to check for holes in Jordon’s
stomach. The study showed that there was a small hole in Jordon’s esophagus.
Usually this is treated with a round of antibiotics and watched closely for
about a week, but because of the patch and the risk of infection, his surgeon
decided on another surgery.
So for
the second time in a week, Jordon was taken to surgery on Friday, October 4. In
surgery, the patch was removed and the hole was sewn. Since the hole was not
straight in / straight out, there was a small tube paced next to the esophagus
to collect any drainage there may be. The tube then leads out of the chest area
to a small collection bag on the outside of Jordon’s body. This tube may need
to be in place for as long as two to three weeks.
In the
meantime, Jordon will not receive any food for a least a week, to insure that
the esophagus is completely healed. Next
week Friday, Jordon will have another Upper GI to see if the hole was healed;
if it is, Jordon can have a drip feed to his intestines. If not, he will
continue to be on TPN to provide nourishment, and will
have another Upper GI the following week. Once the esophagus is completely
healed, the tube will be removed, but Jordon will continue to be fed to the
intestines for about four more weeks.
Jordon is
in the Pediatric Intensive Care Unit at Butterworth Hospital. He will remain
there until the surgeon is comfortable moving him to a regular pediatric floor.
He is kept comfortable with Morphine and Tylenol. He is also on one liter of
oxygen administered through a Nasal
Cannula, which will be weaned as
tolerated by Jordon.
Thursday, May 8, 2008 16 pounds + 11 ounces
I am
delighted to tell the world that my little fighter boy is now 13 months old!!
During the last couple of months I have found myself pondering on the journey
Jordon has taken. He started out as a 2 pound 4 ounce baby fighting for life,
with various wires attached to his little body running to monitors and
machines. I remember how frightening it was to see him for the first time
before the transport team whisked him away, his body no bigger than my hand.
Then I had to wait three days to see him again while I recovered in a hospital
50 miles away. I also think about the first time I got to hold Jordon,
something like 11 days after he was born and how nervous and happy I was at the
same time. Then there was the stress of being so far away from my family and
friends during the toughest time of my life, and the relief that came with
Jordon’s transfer from Bronson Hospital in Kalamazoo to Spectrum Butterworth in
Grand Rapids which was just 10 minutes away from my house.
I could
go on and on about the struggles that Jordon went through. All the
uncertainties, trial and error treatments, and even 3 surgeries. With the help
of family and friends and the prayers and support we received we made it
through everything. Thank you, from the bottom of my heart.
Despite
the numerous doctor appointments we have to go to, Jordon is a happy,
delightful baby. He is very outgoing and loves to be around other people. I
took him to get his first haircut last Friday and all he did was flirt with the
ladies. He does the same thing in the grocery store when the ladies stop to
check him out – it is so cute.
Today
Jordon had an appointment at the Neurodevelopment Clinic; I was pleased to
learn that for the first time Jordon’s weight, height and head circumference
made it on the growth charts. A Growth
Chart is a tool that health professionals use to see if the growth of a child is
adequate. At the last neurodevelopment appointment, Jordon’s doctor put him on
a drip feed throughout the night to help him gain weight faster. Today she told
me that if Jordon continues to gain weight at the rate he has been that we will
be able to take him off the pump at night.
Jordon
still continues to receive chemotherapy for the hemangioma
behind his right eye and on his lip. A MRI in November showed that they were
stable so the hematologist decided to alter his treatment. Currently Jordon is receiving
Vincristine and a steroid called Prednisolone.
He will get one more Vincristine treatment, and then
he will just be on the Prednisolone. Hopefully that
means the broviac can come out soon.
On the
last note, I find myself looking at Jordon and laughing inside at the progress
he has made. He is not walking yet but he is starting to pull himself up at the
furniture and taking a couple of steps while he holds on. To get around he
crawls very fast and even follows me around the house as I pick up and make
dinner and stuff like that. Everything he does warms my heart, especially when
he says “mama.” I love being his mama!!!
First,
Next, a
team of Occupational and Physical Therapists made a visit. They played with
Following
the OT and PT was a social worker, she made sure that
November 9, 2007 –
11 Pounds
I’m sorry
that it has been so long since the last journal entry –
All
around,
Grandpa Lotterman tried to pick
the cutest photos, but they were ALL cute, so they’re all here!
I took
As you
check the website, don’t be discouraged to see no news, be encouraged as in
this case, no news is good news!
Thursday, September
6, 2007 – 8 pounds + 8 ounces
There is
not much to report this evening other than the fact that
It was a
big day for
Sunday, September 2,
2007 – 9 pounds + 5 ounces
I took
Today
I would
like to try to stay here in my apartment rather than going to my mother and
step dad’s house. All I have to do is come up with the rent for the last couple
of months. The church is going to have a benefit or something to help raise the
money to keep me in this apartment. I called the social security administration
and let them know that Tim left a month ago and is no longer in the home to
support me and
I miss
Tim and find myself looking in his carport and all I see is an empty spot.
Sometimes I even find myself looking at the clock to see how much more time I
have until he will be home from work and often times listen for his car to pull
into his spot and wait for his key to unlock the door. But every time I have to
remind myself that he is not coming back. Think about how painful it is to know
that the love of your life walked out and has absolutely no explanation for it
all. I still have no closure and often
wonder what I did wrong to make him up and leave. Do I want him to come back?
Well of course I do – but the main question I find me asking myself is can I
trust him? Do I want a divorce? Well no I don’t, but if he is not going to come
back then what am I waiting for? I need to move on with my life and now is not
the time to feel sorry – I have a kid to take care of – all by myself.
Please
keep the guestbook entries coming – I really appreciate reading the positive
messages and it makes my day to know that you are thinking of us. Thank you again
for all of your support throughout this ordeal.
Friday, August 31,
2007
Things
are going a bit better today for
Saturday, August 25,
2007 - 9 pounds - Five Months old
He’s now
taking 10ml of formula thickened with cereal from a bottle every three hours
followed by 80ml into his feeding tube.
He’s getting the 80ml in just 5 minutes. That’s a total of three ounces
every three hours. After his five
o’clock feeding last night, he calmly fell asleep on the floor never looking
more comfortable. Our goal now is to get
him to take more from the bottle.
We
decided to re-start the chemotherapy on Friday the 31st.
I talked
to my mother this morning. We’re planning on fixing up the basement as an
“in-law apartment.” There is already one finished bedroom, but we want to close
off one end of the basement. We could
use some help with building and materials. We need to rough it in and hang and
finish the drywall and doors. We would
also like to install a vanity and stand-up type shower - there’s plumbing in
place for it already. If you would like
to volunteer help out, please send me an email.
Thank you
again to all of you! You have been so
supportive throughout this whole experience. Thank you is really all I can say
- words can’t explain how grateful I am.
Monday, August 20,
2007
It has
been a while since I have been able to be real personal in my entries. Today I
am going to tell you what has been happening over the last month.
Tim and I
have not been the same since JoJo came so early. It really got the best of us. As a result,
Tim left me about a month ago on a trial separation. He has since decided that
he does not want to be with me anymore and plans on filing for divorce.
I plan on
moving to my mother and step dad’s house and going to school so I can support
August 14, 2007 - 9
pounds + 8 ounces
The
doctor appointments yesterday went well. We started with a “Well Child” where
The last
appointment for the day was with
The
surgeon also said we will wait at least 3 weeks after the surgery to start the
chemo-therapy up again for the hemangioma. The good news is that because
The
surgery is still scheduled for the 20th of this month; please keep
August 12, 2007 – 9
lb 5 oz
I took
In ER they
gave him Tylenol and his temp went down almost immediately. They also gave him an IV of fluids because he
was showing signs of dehydration. They
took some blood and urine to check for infection.
While we
waited two hours for the test results,
After
another hour of waiting for the ER doctors to contact the primary pediatrician,
the ER doctor came in and said they finally contacted her and they were going
to give
August 9, 2007
We had a
consultation with the surgeon and the GI doctor on Friday to discuss where to
go from here. The surgeon said on Friday that he wants to wait until
Yes,
another day in the emergency room. This
time it was not for a life threatening condition but for a leakage in
Since the
button is intact,
Friday July 27, 2007
I was able to bring
Thursday, July 26,
2007
Today is
my sister, Angela’s 25th Birthday – we met for ice cream at the Mc
Donald’s near the hospital, but I was so exhausted that I went home for a nice
two hour nap.
Today was
a busy day, I met with a series of doctors with title that I could not remember
to tell – I should have taken better notes! The upper GI study showed that
there may be a slight tightening near the bottom of the stomach and the Nissen may have loosened enough to cause the reflux that
To help
get
My mom
stayed with me this week – I don’t know what I would have done without her.
Since Timmy was at work providing for his family, mom was there at the
emergency room taking turns with me watching the baby so we could take breaks
for sleep or what ever else we needed.
She also did all of our laundry and cleaned our apartment very nicely –
Tim got home from work and didn’t know what to do!!
Wednesday, July 25,
2007
FOUR MONTHS OLD
8 pounds + 4 ounces
This may
be a little hard for me to write tonight. Unfortunately,
It all
started Monday night/Tuesday morning at 3 am, when
After the
episode,
I was
going to stay at the hospital and take care of the baby but my Dad and
Wednesday, July 25,
2007
(Entry by
Ken Lotterman) As more details become
available, I will pass them along to you.
I spoke with Kendra at about 9:30 AM and she reported that
Kendra
was on her way home to get some much needed sleep and I did not press her for
details because she was extremely tired and emotional.
Keep an
eye on this web page for details or subscribe to updates by sending an email to
ken@jordonmasters.com
with the subject “
Sunday July 22,
2007. JORDON’S HOME!!!
We
brought
Friday
night’s sleepover went real well, except we accidentally set the pump to give
him too much formula. I woke up and
figured it out and informed the nurse.
It was OK, though – the doctor just said to give him less at the next
feeding. For his next feeding, the
tubing had come loose and the formula went into the bed instead, so I guess we
really did give him less! I slept like
an angel, but Tim didn’t sleep very well at all.
16 weeks + 4 days
He had a
hard time getting anything out of the new nipple that I tried yesterday. The Occupational Therapist and the nurses and
I put our heads together and decided the nipples were too small for
I ended
up having the root canal this morning on my left front tooth. The worst of the pain was from the insertion
of the needle in the gums. (A numbing agent was added first) I went through the entire day without a problem
other than swelling. When I had lunch
with Linda I had to eat with the right side of my mouth.
My dad
came to visit tonight and then
Wednesday, July 18, 2007
I went to the dentist this morning and found out I may
have to have a root canal on my left front tooth. I have to return to the dentist on Thursday
for more "tests" to see if it is necessary. I went to the hospital at 9:30 on the way
home but
I went to Vasaio Life Spa
and saw Christina for a massage, compliments of Tim's brother
Doug (happy birthday to me). She did a great job - if you ever need a massage,
I recommend very highly that you go see Christina. She has a background in nursing and sports
medicine and she knows the human body very well. It's amazing how my body responded to her technique! Then I saw TJ (compliments of
I got to the hospital around 7:15 this evening.
Monday July 17, 2007
7 pounds + 12 ounces
We just
found out today that we will be bringing
Tim and I
will be doing a rooming-in on Friday night.
We “check in” around 8 pm – we’ll get up with JoJo
every three hours to feed him and do his care – we won’t have to take his temp
every three hours because we won’t be doing that at home. We’ll have to bring an alarm clock and some
food and a cooler for beverages so we can function as if we are home. We have to bring in our breakfast and
everything – this will be like a dress rehearsal. I’m sure it will be a rough night, but we’ll
figure it all out and it will be good practice for us so we won’t get hit with
a big reality check.
Saturday
we’ll take the night off and get some good sleep.
We’re
*very* excited to be bringing
Saturday, July 14,
2007 - 15 weeks + 6 days
This has
been an extraordinary day for
I talked
to the hematologist today and she informed me that
My dad
had Timmy and me and Josh and Chrystal and Angela over for my birthday. He served us a brisket that he had in his smoker
for nine hours and it was phenomenal. He
also grilled sweet corn and made guacamole.
Tyler and Gary were both there too – Tyler is walking now and his
grandpa was very proud.
After
dinner, Angela and Chrystal came up to the hospital to see JoJo.
I had a
very good day.
Thursday July 12,
2007
15 weeks + 4 days, 7
pounds + 10 ounces
Thursday
8:15 AM –
An
Occupational Therapist had to give him the first bottle to make sure everything
went well. At first I was a little
disappointed that I couldn’t give him his first mouth feeding, but then I
realized I would be too nervous anyhow.
I’ll get to feed him at about 11AM.
He’s “ordered” to have 5 ml two or three times a day fed to him by his mom
or dad.
Grandpa
Lotterman video recorded it. The video
is posted here! It’s about seven minutes long and works best
if Windows Media Player is configured to play wmv
files. If not, you may have to
right-click the link and choose “Save Target As...” and save it to your
desktop, then minimize Internet Explorer and play the file from your
desktop. If all else fails, let me know
and I’ll have my dad post it a different way.
Last
night he weighed seven pounds and ten ounces – fat boy!
The last
few nights I have slept really well – I feel energized and am definitely
starting to feel like myself again.
Even though my appetite is back to normal, I’m starting to lose weight
(which is a plus) and when
I’ll be a
little behind yet on thank-you cards for the gifts from my baby shower. I’ll do the best I can, but in case I can’t
get to it, Tim and
July 11, 2007 (Entry
by Ken Lotterman)
Tomorrow
(Thursday) is Kendra’s birthday. One
unexpected gift is that she gets to try giving
July 10, 2007
I came
home today after spending almost five days at Pine Rest getting help recovering
from post-partum depression. I learned a
lot from the program and will continue to do some research on how to take care
of a family while suffering from Bipolar Disorder. Thank you for being patient with me while I
was out on my retreat (or as I would like to say my “vacation”) from reality as
I worked on my mental stability. I am
now more able to be mentally and physically available to my husband and my
infant son.
Speaking
of my infant son –
Thanks
again for being so supportive – I could not do it without you!!!
July 6, 2007 (Entry by Ken Lotterman)
Kendra has been having trouble dealing with the enormous
amount of stress she has been put through over the last three months. She is currently on a retreat learning to
deal with that stress and getting help with recovering both emotionally and
physically.
I spoke with her this evening and she is very
comfortable. She’s also convinced that
her decision to take the next three or four days off is the right one. In fact, she feels like she has made a lot of
progress already - just in one day.
July 4, 2007 - PHOTOS
14 weeks + 2 days =
3 months + 9 days
Life seems
to have been a living hell the last couple of weeks and am I quite on
edge. I’m sorry that I have not been
taking the time to update this journal. By the time I get home from the
hospital, the only thing I want to do is escape from reality and take some time
for me. I have a doctor’s appointment
this afternoon, so I am staying home in my pajamas, lying on the couch until I
absolutely have to get up and get ready.
Please forgive me for not keeping in touch with you, but it is very
difficult at this point. Hopefully
things will get real better real soon.
I will
return to the hospital after my doctor’s appointment and spend the remainder of
the evening there with Chrystal. I will
do my best to update everyone on a more regular basis. Thank you for your understanding and support.
(Ken Lotterman writes) Monday, July 2, 2007
Saturday
Kendra is making plans for
Kendra and Tim were excited to be able to spend some time
with Gary this weekend – they met Josh and Tyler at Playworld.
I asked Kendra for some details about the surgery and
here’s what I came away with: The “Nissen” wraps part of the stomach around the esophagus to
constrict the opening, allowing food and drink to pass into the stomach, but
stops stomach acid (and vomit) from escaping the stomach through the
esophagus. This is to reduce or
eliminate the damaging and painful reflux.
The doctor originally didn’t want to do the surgery until it was
necessary. A team of 12 doctors
including the surgeon decided that it was best for him and to do it asap to relieve the reflux.
He’s not spitting up anymore and Kendra can tell he’s more
comfortable.
In addition, because
The hole in the stomach was a complication – there’s
always a risk when they do this kind of surgery, but the problem is so rare
they didn’t even warn Kendra and Tim about it.
Tim and Kendra have been attending Wyoming Park United
Methodist Church for some time now and that church has stepped right up in this
time of need. Pastor
(Ken Lotterman
writes) Thursday morning, June 28, 2007
Tuesday, June 26,
2007 – Three calendar months plus one day
After the
surgery
Last
night
***Here
are a few PHOTOS taken
after the FIRST surgery***
Tuesday, June 26,
2007
Update from Ken
Lotterman
Kendra
has been doing a very good job of keeping herself together considering what she
has been going through, but lately the stress of it all has taken it’s
toll. I couldn’t expect her to be able
to make journal entries every day, at least for a while.
Although
it’s difficult to know exactly what is going on with
Thursday, June 21,
2007 – 12 weeks + 4 days – 6 pounds +7 ounces
Since
today is my due date, I had an emotional day.
I’m finding it hard not to cry.
It was especially tough when I was asked to leave the room so the GI
doctor could do a scope study.
Angela
and Rhett came to see
Tuesday, June 19,
2007 - 12 weeks + 2 days, 6 pounds + 5 ounces
I got to
give
Pastor
Saturday, June 16,
2007 – 12 weeks - 6 pounds + 8 ounces
OK – so
it’s been a while since I wrote an update.
I’ll try to keep on top of the updates but I might have to start doing
them every other day instead of every day.
Usually by the time I get home from the hospital I’m feeling pretty
emotionally and physically exhausted.
However, I am extremely grateful for the prayers and support we have and
continue to receive.
Wednesday, June 13,
2007 Eleven weeks + four days, 6 pounds
+ 6 ½ ounces
We had a
conference with
Sunday, June 10 and
Eleven weeks and two
days
6 pounds + 2 ounces
I am
emotionally drained and simply did not have the strength to report
We meet
with the doctor on Wednesday to discuss the care plan for the next month –
hopefully he can estimate how much longer
Saturday, June 9,
2007 – Eleven weeks, 6 pounds + 1.4 ounces
I stopped
at the hospital this morning before Tim and I went to a couple of graduation
open houses and
Friday, June 8, 2007
– Ten weeks + 6 days, 6 pounds + 2 ounces
The
doctor decided that it was time to get
Thursday, June 7,
2007 – Ten weeks + 5 days, 6 pounds
Now that
He is
feeling well today. He still has some
spit-ups but he is able to handle that.
He was spoiled with the presence of both his father and me tonight.
Usually Tim is at the hospital two or three times a week. He has a phobia of hospitals making it hard
for him to be there too long.
Wednesday, June 6,
2007 – Ten week + 4 days, 6 pounds
Tuesday, June 5,
2007 – Ten weeks + 3 days, 6 pounds
even!!
He really
enjoyed the snuggle session we had after I gave him a sponge bath – he gets cold
really fast when he’s wet.
Monday, June 4, 2007
– Ten weeks + 2 days, 5 pounds + 13.6 ounces
After
Sunday, June 3, 2007
– Ten weeks + 1 day, 5 pounds + 14.6
ounces
I had a
splitting headache after church so I relaxed and took a nap. Since I took such
a long nap, I did not get to the hospital until 6 PM again today.
Saturday, June 2,
2007 - Ten weeks, 5 pounds + 13 ounces
I had
some much needed pampering today at Vasaio Life
Spa. I am still a little tense but not
nearly as tense as I was before the massage.
I would like to go back in a couple of weeks for more relief – but I’m
not sure if we can afford it.
My Mom
and Ray came to see
Friday, June 1,
2007 - 9 weeks + 6 days, 5 pounds + 13
ounces
Angela
got to hold
Thursday, May 31,
2007 – 9 weeks + 5 days, 5 pounds + 11 ounces
I took
the day off to do “power pumping”, so I did not see
I spent
the day at my dad’s where it is nice and cool because of the air
conditioning. Later Josh and Chrystal
came over as well as Kim, Chrystal’s mom, along with Tyler. Tim showed up a few minutes behind as well as
Linda – but I’m not sure if it was in that order or not!! We all got together to have dinner and do a
little swimming. The night was perfect
for it. It never rained and the
temperature was just right for swimming.
It is 11
PM and I’m really wishing I was at
Sometimes
I struggle with not being with
Wednesday, May 30,
2007 – 9 weeks + 4 days, 5 pounds + 9.8
ounces
Today’s
X-ray showed that the air around
I’m
starting to learn
Today was
a great day. It was awesome to see him
so happy and calm!!!
Correction
to the May 28 entry:
Tuesday, May 29,
2007 – 9 weeks + 3 days, 5 pounds + 7 ½ ounces
I had to
keep myself from crying all day. It is
getting really hard to deal with this and all I want to do is bring my baby
home and be a family. Finally, when I
got home I let it all out and cried until it was time for me to go to
sleep. Ginger having her baby early
really made me face reality. Please
don’t think I’m saying it’s her fault – it was just the icing on the cake.
Monday, May 28, 2007
– 9 weeks + 2 days
I could
feel a difference when I returned to
Saturday, May 26,
2007 - 9 weeks, 5 pounds + 8.5 ounces
I had to
get away for a while so Tim and I packed our bags and headed up north to his
cousin’s house in Kalkaska. The
day-to-day every day at the hospital finally got to me. We may stay for just one night but we have
extra clothes in case we want to stay an additional night. Since it’s a long weekend it won’t make a
difference either way.
He got to
snuggle with his daddy for a while before we took off for the weekend. It is an unexplainable feeling to see the
two most important boys in my life in one chair.
My friend
Ginger had her baby today - what a great day for me to decide to up and leave
town! Dawson, Ginger’s son, was born
seven weeks early but seems to be doing well.
He is breathing on his own already.
I wish I could be there for Ginger today but I had to get away. I did give her a call to let her know that I
understand and am willing to lend an ear anytime.
I found
out a little later that Tiffany had her baby today, too! I don’t know Tiffany that well – we’ve been
to parties together at dad’s house, but she’s a friend of
There
might not be a journal entry tomorrow depending on if I stay “checked
out”. We’ll see.
Friday, May 25,
2007 -
8 weeks + 6 days (2 calendar months), 5 pounds + 5 ounces
I walked
into the nursery today and could not find my baby. The nurses kept pointing to him but I was so
shocked that he was not where I left him, that I could not see him – not to
mention there was an isolette blocking his
bassinette. He was moved to make room
for a new baby who needs more room than
Sarah from
Parent to Parent Partnership came to visit on just the perfect day. I am having a hard time this week, especially
today.
Thursday, May 24,
2007 – 8 weeks + 5 days, 5 pounds + 4.6 ounces
I wasn’t
going to see
Wednesday, May 23,
2007 - 8 weeks + 4 days, 5 pounds + 4.6 ounces
I had an
optical appointment this morning which messed up the whole day. I had to get out of bed before I had enough
sleep so I was very tired when I went to see
My
Grandma and Grandpa Lotterman made a surprise visit. They were waiting in the waiting room when I
went to get some hot water to make a cup of tea. They always seem to come at the right
time. Tonight they were there for
Tuesday, May 22, 2007
– 8 weeks + 3 days, 5 pounds + 6 ounces
I brought
my sister-in-law to the hospital ER today because she had some sharp pains in
her side. Everything is OK – she was
sent home with some pain pills. My
mother-in-law and father-in-law were also there to keep her company. After she was released they all headed
upstairs to see
Tim and
Monday, May 21, 2007
– 8 weeks + 2 days, 5 pounds + 4 ounces
Not a lot
happened today again.
I spent
almost the entire day at the hospital because I start to miss him when I’m not
there. I’m getting impatient of being at
the hospital – I want to bring him home now.
I want to take care of him myself – me and my husband, without all the
nurses.
When I
did get away, I went to see my nephew Tyler.
I used to see him about every other day, but now that
Sunday, May 20, 2007
– 8 weeks + 1 day, 5 pounds + 3.4 ounces
*** PHOTOS - Click HERE ***
Gary
spent the night last night and I woke up as he was coming out of the
bathroom. He was not feeling well. After Tim and I brought Gary home, Tim
started to get sick. So I packed my
overnight bag and left for the day and will spend the night at my dad's. I want to spend all my time with
I met my
Mom and Ray at the hospital. They were
there to see
Not a
whole lot changed with
Saturday, May 19,
2007 - 8 weeks, 5 pounds + 1.4 ounces
Not much
happened today. I went to the hospital
and held
Friday, May 18, 2007
- 7 weeks + 6 days, 5 pounds +1 ounce
Tim and
Chrystal showed up as I was getting ready to leave for the day. Chrystal was happy to be able to hold
I had a
good time tonight at the party that replaced the benefit. I talked to Dave and Diane for quite a while
– they are a really neat couple.
We were
still able to raise some money through a raffle. A side-by-side massage including pickup and
drop-off in a 1956 Bentley was donated by Vasaio Life
Spa. The winners were Joe and Aja – my dad’s next-door neighbors! We also gave away an assortment of 12
“tasty” beers – Colleen from Lawson won that.
Sue, my
“mentor,” had taken up a collection at her work and many of my dad’s clients
donated as well. Thank you so much for
all the donations and moral support we have received throughout
Thursday, May 17,
2007 - 7 weeks + 5 days, 5 pounds + 1 ounce
The
doctors are also thinking about doing another study on the intestines. This time the barium would be given to
My
Grandma Kramer and my Mother came to see
Wednesday, May 16,
2007 – 7 weeks + 4 days, 5 pounds + 3 ounces
I spoke
to the doctor and received a GREAT report.
I had an
especially hard time leaving after my nightly visit.
Tuesday, May 15,
2007 – 7 weeks + 3 days, 5 pounds + 1.6 ounces
Today was
a great day. I got to the hospital
around noon and
He is
still receiving the erythromycin for his bowels but has not had a stool in
three days. The doctor will not keep
Monday, May 14, 2007
– 7 weeks + 2 days, 4 pounds + 12.5 ounces
Not a lot
happened today. A plastic surgeon looked
at
Sunday, May 13, 2007 My First Mother’s Day!! – 7 weeks + 1 day, 4 pounds + 10 ounces
Tim and I
went to my mom’s for dinner and later visited Tim’s mom. I was only at the hospital for about an hour
today.
My Mother
had not been to the hospital yet this week because she was worried that she was
getting a cold – it turned out to be just allergies. She was anxious and couldn’t wait until next
weekend so she and Ray came to see
The
doctors are not too worried about the hemangioma on
WEEK 7
Saturday,
May 12, 2007 (seven weeks old today)
The doctor
ordered to wean
Uncle
Ron, Aunt Lori and cousin Melanie came to meet
I got a
call from my friend
The concert
was standing room only and it was very crowded.
I was having fun but I was beginning to feel a little pain from the
C-Section and needed to get off my feet, so I left during the intermission of
the Mega 80’s performance. I know I did
not last the whole night but I sure had fun and no regrets of going out.
Friday,
May 11, 2007
I got to
hold
I took a
little break from reality tonight and went to a Ladies Night with my mom. The hostess made some really good chicken and
awesome salad that had almonds and raisins. I never cared for raisins, but the
salad was great. I actually put the
chicken in the salad - yum! I didn’t go
back to the hospital because it was already a little before 9 and I was getting
tired.
I was in
Gary’s neighborhood on my way home, so I called Grandpa to see if I could take
Gary overnight. Gary is my Step-dad’s 6 year old nephew and lives with his
grandpa VanDyke (I call Grandpa VanDyke
my grandpa, too). I have known
and have cared for Gary almost his entire life and I’ll tell ya - he loves his Kendra!
Poor boy – he doesn’t understand why I don’t spend as much time with him
since
Not a lot
going on today.
I was
really exhausted more than usual today, so I went home to take a 3 HOUR
nap. I must have needed it! I don’t know what made me so tired so
fast. Pastor
Wednesday,
May 9, 2007
When I
returned from my doctor’s appointment I went to a parents meeting. I was the only parent who showed up, so David
(the Parent to Parent volunteer) and I talked for about an hour. I was able to get some things out that I may
not have if there were a group of people there with us. It felt great to vent and let all my feelings
out. Since I knew Tim would be with
I started
telling people that they can call me to come up and see
Tuesday,
May 8, 2007 PHOTOS!!!
Parent to
Parent Partnership is a program in which parents who previously had a child in NICU
mentor a mother who currently has a child in NICU. I met Sarah today – we think
we may have met before but can’t figure out where. I enjoyed getting to know her and can see a
significant relationship building soon. She knows what I am going through and
can mentor me and even be there as someone to talk to when I need it. Sarah had
a preemie baby 7 years ago and now her daughter is a normal, beautiful child.
He made
me really work today about an hour before his afternoon care time. I was
holding him and he started to fuss so I decided to put him back and change his
diaper. As I was changing him he threw
up some old blood, so I changed his outfit and we snuggled some more. A few
minutes after we sat down he had a soiled diaper… so once again I got up to
change him and once again he threw up.
But this time I was able to save the outfit – or so I thought. As I was finishing cleaning up the spit-up,
Monday,
May 7, 2007
Tim and I
had a conference today with
Chrystal was a little bummed that she was not with
Josh when he came to visit so after dinner she came with me for my evening
visit. As soon as we arrived we started
Sunday,
May 6, 2007
Tim and I
went to church this morning and sat next to Sue. Sue is one of my biggest inspirations. She had a preemie and has been sending me inspirational
emails from the beginning. After church
we went to Grandma and Grandpa Lotterman’s for dinner
- Grandma makes some mean ribs…yum!
WEEK 6
Saturday,
May 5, 2007
Tim and I
got up this morning to go to the Eastgate sale. My
mom met up with us and later Mom and I went to my cousins Krista’s bridal
shower. It was nice to socialize - lately I have felt so out of the loop with
everything. I called to check on
Mom and I
went to see
Friday,
May 4, 2007
Today was
just as normal as most. I got up, got ready and went to the hospital to be with
JoJo. He has been
having a hard time with breathing because of the tube that was running to his
intestine. When it refluxed, it caused
I came
home for dinner and went shopping with
As I read
the guestbook entries I realize how much support we have all over the country.
I want to thank everyone for being there for our family in such a great time of
need. I also love your emails and guestbook entries - I get most of my
motivation from all of your words of wisdom and concern. THANK YOU SO MUCH!!!!
I walked
up to the back side of
The
reason
Because
I was
able to hold
Wednesday,
May 2, 2007
Today was
really uneventful so I don’t have much to write.
I held
I gave
Tuesday,
May 1, 2007
I went to
my first support group at the hospital today. I met a few sets of parents and
can see some friendships growing in the next couple of meetings. We sat around
a large conference table over a light dinner and talked about whatever came up.
It is amazing how I can relate to the mothers and fathers in this group. It is
also great that I know there is someone there to talk to who understands what I
am going through and really cares enough to listen without being scared or
needing comfort from me. When you talk to another NICU parent they know that grieving is
something that comes and goes. You may be fine with things one day and be an
emotional wreck the next day. We know that our days will be based on how our
children are doing - if he is having a bad day so am I and if he is having a
great day, my spirits could never be higher.
I thought
I should clarify something: When I state the amount of milk
Monday,
April 30, 2007
Tim had
the day off from work so we took advantage of it and moved all the stuff out of
my studio apartment in Kalamazoo - and I’m not looking back!!!!! Surprisingly,
we fit everything into a small pick-up truck and my car. It took a while and we
did not get back to Grandville until around 4pm. Then Tim and I brought all the
furniture that my dad let us borrow back to his house and since we had a
pickup, we took some things out to my Mom’s in Belding. We have so much stuff
in the Grandville apartment that we have to clear out to make room for the baby
- and man, am I in a nesting phase! I want to go through things and get rid of
the things we don’t use. I want to put together the crib and set up the nursery
so it’s ready for
I did not
make it up to the hospital to see
Sunday,
April 29, 2007
My mom
and Tim and I went to Wyoming Park United Methodist Church this morning. The
service was quite different - we worshiped in the basement over breakfast. It
was a celebration for our church. Tim and I received a prayer shawl as well.
The shawls are made by members of the church and blessed by the congregation.
The shawls are to keep people warm and to provide comfort during their time of
need.
I held
WEEK
5 Photos
Saturday,
April 28, 2007
The care
here is great - THE DOCTOR called me this morning to let me know
Mom and I
did a little shopping - it was nice to know that I was home and
One of
the nurses (there are many different types of nurses) told me to Kangaroo Care
daily to help “let down” the milk supply. This means I get to hold
Friday,
April 27, 2007
Photos of Jordon’s first night
at Butterworth
I got a
call from the case manager at Bronson around noon to inform us that the
insurance company would not cover a transfer to Grand Rapids but she would
check with Medicaid. At 12:30 she called to let me know that Medicaid would
cover the transfer. At 1:00 PM Tim called and let me know that
The trip
was a breeze for
Friday, April 27, 2007
The following entry was NOT written by Kendra, but by her dad:
After a long day of waiting and indecision and uncertainty,
He is doing very well after the move and the doctor is already
quite optimistic. Kendra is elated to be
“home” in Grand Rapids. The room that
It was decided that it would be best to limit visitors for the
next few days while
Kendra should return to writing tomorrow.
-Ken
Thursday,
April 26, 2007
I woke up
this morning at 8AM and couldn’t get back to sleep, so I got out of bed and
headed to the hospital. This is the earliest I have been here - usually I am
here late the night before and don’t get to bed until around 2AM.
My Dad
came down this morning. I was Kangaroo
Caring for
We
started the process of the transfer to Grand Rapids. The insurance company
“needs more information” to determine if they will cover the expense. If they don’t, Medicaid will pick it up. We did find out that there is room for him at
Butterworth and they are expecting us. It does not look like we will be in
Grand Rapids by Saturday, but hopefully we will before the end of next week.
The social worker told me it could take 2 hours, two days, or maybe even
longer.
I got to
relax a little - Bronson let me use the birthing tub to soak. They call it hydro-therapy. It was so relaxing that I could feel the
tension leave my body. They filled the room with aromatherapy, had a battery
powered candle and even a relaxing CD for me. I guess I was the first one to
use the tub, but I don’t know. This tub was huge! It is big enough for two
people and maybe even a small child.
Wednesday,
April 25, 2007
Since
Tuesday,
April 25, 2007
Milestone:
I was
able to hold
Just as I
was getting ready to leave the hospital for Grand Rapids I had a surprise visit
from
I am at
home for the night and missing
Monday,
April 23, 2007
Ashli
from across the hall went home today. I
knew I would take it hard and as soon as she left I broke down. It’s not her
fault that I felt this way; I guess it’s
just that I may be a little envious and at the same time disappointed that
she’s not here anymore. It’s hard to see the babies all ready to go home -
there were two today. All the nurses go and see them in their car seats all
snuggled up. If I want to see my baby I
have to look through a plastic cage - how nice! I look at him as though I am a
child in a pet store waiting for the puppy to be big enough to take home. Sometimes
I even feel like the children in the “Cat in the Hat” book where they’re
looking out the window waiting for the rain to stop to go out and play. It
hurts when he is so sick that he can’t even be taken out to be held. I long to
hold him in my arms and to nurse him rather than a machine doing the job for
me. I hate that he can’t breathe on his
own and he needs to be resuscitated. I don’t like to see him unhappy when the
nurses are messing with him and to top things off, the only way I can comfort him
is to place my hands on his itty-bitty body and talk to him with a gentle
voice. I also feel a little torn - I hate to be away from my husband and I
can’t be that far away from my baby but then again, BABY IS TRUMP.
He was a
bad boy this morning when I got here; he would not bring his heart rate up so
the nurses used the neopuff. I had a hard time
emotionally seeing this so I decided to go out into the lobby and have a coffee
with a little hot chocolate added to make a mocha. I sat down next to a couple named Carrie and
(I can’t remember his name). They had a
4 pound 5 ounce baby, Chloe. She was on
an apnea monitor and dressed in a cute pink outfit. I sat and talked to them
for a while about their experiences in the NICU. It was reassuring to see a
baby out in the real world even if she still had cords. We exchanged email
addresses and I hope to keep in touch.
My Aunt
Deb, Uncle Ted and cousin Lindy came to visit tonight. It was a short but
wonderful visit. Lindy’s baby was early,
too - I think 6 weeks. We compared our experiences and talked about the future.
It’s great to be friends with Lindy this way. We were so close as children and
the older we got the less we talked - enough of that, right Lindy?!!
The room
across the hall (Ashli’s old room) has already been
taken. As I look across the hall to the prepped room I stand emotionless
thinking of the horror someone is going through right now. I don’t wish this
pain upon anyone, not even my worst enemy. Someone is in premature labor and
their emotional rollercoaster has just begun. I hope I can be a friend and
understanding person to the couple who will soon fill this room. It is hard to
go through this alone and not have any NICU friends - I hope I can be that to
this baby’s mother.
Sunday,
April 22, 2007 – 4 weeks old today!
Today was
a lot easier to handle than yesterday.
Well, I
said goodbye to my husband and I am doing well so far - Tuesday is just around
the corner and I can stay the night at home-home. Maybe I got a handle on the
routine and Sundays will be easier from now on. I beat myself up when everyone
leaves at the end of the weekend, I hate to have to be alone and I seem to set
myself up for misery.
WEEK
4 Click
here for week 3 and 4 photos
Saturday,
April 21, 2007
I never
stopped to remind myself that things aren’t that easy and that
Tim and I
just stood there watching the respiratory specialists work on our baby.
I also
became aware tonight of
At this
point we are not sure what has caused all the spells. He had blood work done to
check for infection and a chest and abdomen X-ray taken - both came back
negative.
Friday,
April 20, 2007
I just
spoke to
Timmy is
FINALLY here for the weekend - I’m so happy. It is a lot less quiet around home
with him too. I usually don’t have the TV on but the first thing he does when
he walks in the door is turn on the TV! I also have to share my space with him
and when I’ve been alone all week that can be frustrating. Despite all this, I am delighted to have my
best friend here for the weekend, even if I have to share my bathroom!!!!
And
thanks for signing my guestbook – it means a lot to me. You can even sign it more than once if you
want to.
Thursday,
April 19, 2007
Timmy
woke me up when he called to tell me he would be at the hospital around
11am. I have not seen him in so long
that I couldn’t get back to sleep and I had to get up there. As I walked into
As soon
as Timmy arrived we went to get dinner at Applebee’s. We all ordered the same thing- how often does
that happen? I loved to spend some time with Grandma and Grandpa Murray, and
see my husband for more than 5 minutes. I sure do miss him when he’s not here.
I can’t believe
I slept until noon and I have a lot to get done before I can make it back to
A few
minutes after they left, my dad picked me up to go to the best Gyro restaurant
in K-Zoo, Stacie and Theo’s. If you ever
get a chance and happen to be in K-Zoo you have to try this restaurant - it is
the best. I was able to do “Kangaroo Care”
when we got back to the hospital. Kangaroo Care is where the baby is placed on
my bare chest and we both are covered with a blanket. This is really good for the baby (and I don’t
mind it either.) He was out for about an
hour. Just before the time my dad was
planning to leave, the nurse said she was going to take all of
I had to
pamper myself a little bit, so I got in touch with my friend Jodi and she
colored and highlighted my hair. She did
an awesome job! Tim’s dad came over for dinner and we sat and talked for a
while. Once he left it was time for bed.
I like
the feel of the new room - it feels like home.
It is nice to be able to sit in his room, read a book, or even take a
nap with privacy. The nurse got
Sunday, April
15, 2007
Today was
the big move to Bronson’s new facility so Timmy and I got up really early to
make the walk with him.
WEEK 3
Saturday,
April 14, 2007 – End of week 3!!!!!!
Timmy and
I went to dinner with Jim and Ellen, they are a great couple and very very good to us and we really appreciate everything they do
for us. Ellen calls me every other day
or so to see how things are going, and I was able to tell her tonight that I am
grateful for that as well. They brought
a couple of blankets from the church for us.
I got to
hold
Finally,
Timmy is here, it has been a long week without him here. He brought a
tag-a-long with him, Chrystal. Chrystal
is Tyler’s mom and my brother’s fiancé.
As soon as they got here we had dinner and went to the hospital to see
It has
been a long time coming but Timmy finally got to hold
Thursday,
April 12, 2007
Later in
the evening, the nurse checked blood gases and blood pressure and
I forgot
to mention to
My
Grandma and Grandpa Murray came to visit as well as Pastor
I got
locked out of the apartment. I thought
the key was not working because it turned but did not unlock the door. I called
the landlord and he had a hard time as well, only it was difficult for him to
lock the door. He figured that the
screws holding the deadbolt onto the door were tightened too much and he also
sprayed a little bit of WD-40 to make it easier to turn. I felt a little stupid, but it was obvious
that there was a problem - really I put as much pressure into unlocking the
door as I thought I could with out breaking the key but it just would not
unlock. The landlord told me that it was
not my fault and not to worry about calling him out to fix it. Oh well.
His
feedings were increased again today. Now
The
weather outside is nasty; I had to brush at least 6 inches of snow off my car
this morning. My dad’s girlfriend, Linda
came to see me, but didn’t realize the roads were so bad and made the trip down
here to see us anyhow. I really enjoyed
her company; it gets a little lonely sometimes.
We had lunch together (on dad’s credit card), she visited with
Linda
dropped me off at the hospital and headed back home. I think it was easier for her to get home
than it was for her to get here.
Kalamazoo is confusing with all the one way streets - anyone could get
lost.
I came
back to my studio to get some dinner during shift change and made myself the
best dinner since I have been here - thanks Dad! I had to eat alone but that didn’t matter,
the food was so tasty. After dinner I
took a shower and got ready for bed. I
need to start taking care of myself so I am staying home and hitting the sack
early. I did call
I went to
go see Dr. Lown today in Grand Rapids - he was the
on-call doctor who delivered
The
little break from reality really helped me - I will make sure that I get home
at least one night a week for now on. I was undecided if I wanted to stay
another night, but as soon as I started worrying about
As soon
as I got into the nursery,
I lost it
today; all I could do was cry. I want to
be able to hold things together but it is just so hard considering my best
friend (Timmy) lives in a different city. Because I was so not-together, I
decided that I would leave for Grand Rapids tonight rather than tomorrow
afternoon. I miss my husband and I really
needed to get away.
I went to
see my nephew, Tyler. He missed me so
much. It was really healing to hold him,
even though he held me. He was so
cuddly, and I loved it. I didn’t realize
how much I missed him until today, I normally would see him at least 3 times a
week, and it has been a while since I had had my “Tyler fix.” It was also good to be home. I slept next to my husband and we cuddled
almost all night. It was good to be together again.
WEEK
2 Photos
Easter
Sunday, April 8, 2007
IT’S NOT
FAIR
Ok, so
today I’m going to pout. It is not fair
- most babies can breathe and eat and keep their heart rate consistent on their
own. It’s not fair - most babies get to
learn their mother and father’s personalities, and how to play them. It’s not fair, most mommies get to hold and
bond with their babies at birth. And
most parents get to take their babies home with them and everywhere they go
just to show off the newest addition to their family. It’s not fair that I have to look through
plastic to see my baby, and if I want to hold my baby all I can do is put my
hand through a little hole, place one on his head and one on his belly. If I want to comfort my baby all I can do is
secure his little arms and talk to him gently.
I can’t pick him up and rock him back and forth and tell him everything
will be OK. I want to know my baby’s
personality and deal with his orneriness when he needs to be fed. I want to change his poopy
diaper and smell it until his dad takes out the trash. I want to do the things most moms do when
their baby is at home with them.
I want to
live with my husband, not in two separate cities. I want to feel his skin every night and maybe
cuddle now and then. I want my baby next
to me in a cute bassinet. I want to get
up in the middle of the night to feed him and gently tuck him back into bed.
I know
all this will happen to us one day when
All that
aside,
All
together, today was a nice, but cold, Easter day.
Daddy and
I did not spend a whole lot of time with
Congratulations
to
I am
becoming quite comfortable with
I cleaned
the studio today and got a lot of stuff situated, but I don’t think I’m quite
happy with where I put things. As time permits I will play around and become
accustomed to where something should be.
I’m not sure if one waste basket will be suitable, so when I’m in Grand
Rapids Tuesday (to see the doctor) I will have to grab a small one out of the
bedroom. Soon this will be the place I call home.
I paid
the Landlord and got the keys to my new studio apartment today; I can start moving
in tomorrow night. It is just a cute
little place - the bedroom is just big enough for a queen size bed, the
bathroom is itty bitty with a tiny stand-up shower, and the kitchen/dining room
is big enough for a kitchen table and maybe a chair or two. Even though it is
small, it is still cozy; I can’t wait to get settled.
We
appreciate everyone’s support, and understand that everyone wants to see
Tim had a
delivery in Kalamazoo so he made a special trip to see
Micro
Preemies are babies born less than 26 weeks gestational age, weighing about 1
pound 1 ½ ounces. Very- Very Premature
babies are born from 26-29 weeks gestational age, weighing 1 pound 8 ounces to
3 pounds 8 ounces. Very Premature babies
are born 30-35 weeks gestational age, weighing 2 pounds 3 ounces to 5 pounds 8
ounces. And Moderately Premature babies
are born 35-37 weeks gestational age, weighing 3 pounds 12 ounces to 7 pounds 8
ounces.
We looked at the studio apartment late tonight and
decided it was something I would be comfortable living in. The neighbourhood seems really quiet and
safe. I will be renting one of the only
units with a private entrance. The bedroom is separate from the kitchen and
dinning room, and is just big enough for a queen size bed. I can start to move in Saturday.
Once again I would like to thank everyone for the
prayers and overwhelming support. This
process is made easier with people who care, like you!
Wednesday,
April 4, 2007
I FINALLY GOT TO HOLD MY BABY!!!!!!
I was
exceptionally tired today. I thought I got enough sleep, but I guess I was
wrong. This made me overreact when a family member called the staff phone in
the nursery to see how
I just
happened to sit in the right place at the right time. There were a couple of women sitting across
from me, not eavesdropping, but they couldn’t help overhear the conversation I
had just taken part in. One of the
women, Jamie, told me she knew what I was going through for she had been
through it herself with her twins about 21 months (I think she said) ago. She was very reassuring and kind to me, she
shared her stories and experiences, and we even discussed the way some of the
nurses handled the babies. God put us both in that waiting room at the same
time for a purpose.
During
our chat, I mentioned to Jamie that I was from Grand Rapids and looking for a
room to rent for the time remaining before I can take
I decided
to go home earlier this evening than normal, so I could get a bite to eat and
take a nap before the shift change is over.
I wasn’t sure if I was going back to the hospital because I was so
tired. But the loneliness got the best
of me and before I knew it I was standing at the sink scrubbing next to Pastor
Vernon, from Kalamazoo United Methodist Church (UMC). Pastor Vernon came to see
how the baby was doing and as usual the same set of questions were asked… but
this time I felt a warm presence with his concern. I think
As Pastor
Vernon was leaving, he told me that the prayer group remembered our family, and
each of the members in this circle will remember us each time they pray. It is amazing the amount of prayers we are
receiving, we are overwhelmed with support. There is also another couple from
the church, Jim and Ellen, who is thinking of us. Ellen calls me every couple of days to see
how things are going, and to make sure we have everything we need. She has also been working on finding a place
for us to stay, and opened her home if we can’t find somewhere close to the
hospital. She is also a blessing and we
are very appreciative for her support.
We’re even getting prayers from the congregation at Gun Lake Community
Church – those are people we don’t even know!
My dad is their computer consultant and he mentioned our situation to
someone in the office there and they put us in their bulletin!
Now the
good part…
What a
wonderful feeling! Immediately,
All I
could do is stare and thank God for this miracle in my arms. If only I could take a picture of what I
could see, I would show it to the world… Look at my Miracle Baby!!!!
I slept
really well all the way until 11am - I needed that. I decided that I will leave the hospital
around 10pm from now on to insure that I am well rested for the next day. I
can’t let myself get so tired, it makes it hard to function leaving me
extremely emotional. After all,
I talked
to Dr. Purdy today; he informed me that the blood culture was not exceptional
so he placed
Daddy got
sent home from work early because he was having a hard time functioning. It was his first day back on the job since
I got to
hold
Today was
a busy day for Daddy and me; we did not get a good chance to spend quality time
with
I still
had a hard time tonight, mostly because I am tired and alone.
I called
The
stress caught up with us today after Grandma and Grandpa VanDyke
(My mom and step-dad) came to visit. It
sure did get the best of us; we had our first “fight” since before
The nurse
put
WEEK 1
Photos HERE
Pastor
Before
Pastor
Good
news,
All and
all, today was eventful for
Friday, March
30, 2007
We called the
hospital a couple of hours after we left to check on
I love his
little hands and feet, the way he turns my way when I speak to him, the way he
looks like his daddy (only
I was happy
to finally see my baby after an awful 3 days apart. Today I was able to
take his temperature and change his diaper. He recognizes my voice and
even opens his eyes when he hears me.
Doctors are
very optimistic about
My husband
Timmy is a saint. He is holding together
wonderfully.
Tuesday,
March 27, 2007 – My first journal entry
I was feeling some cramps Sunday Morning when I got out of bed, which did
not feel unusual, since the baby moved around a lot. I hopped into the
shower to see if that would ease the pain, but it only got worse. After
breakfast my back started to hurt and it was hard to sit up straight or to even
stand. After speaking to the on-call doctor, Tim and I went to the ER to
make sure everything was alright.
When we got there the nurses ran tests to make sure I did not have kidney
stones....nope that was not the problem. Later when the hospital OB
arrived and performed an ultrasound, she discovered that I was dilated to
6cm...WOW. After a vaginal exam, the doctor decided that I needed to be
transferred to Spectrum, where the NICU can take care of the baby. However
they ran out of time and needed to perform an emergency C-Section at Metro
Health because the baby was breach and on his way out.
He already knows his father's voice and turns towards it when he hears
it. I can't wait to see his little hands and feet, and let him know how
much I love him.
I will do my best to keep this journal
up to date. Please continue to pray for us, and thank you for your
support.