Lorena's Heart
April 8, 2008
Dear Family & Friends,
Blessed be God, even the Father of our Lord Jesus Christ, the Father
of mercies, and the God of all comfort. 2 Corinthians 1:3
This is the verse which was given to me recently by two different
friends who wanted to encourage me and I have placed it on our
fridge. God is our comfort in difficult times. We know that the Lord
gave us strength through it all and He continues to do so as we care
for our little girl.
This week things are going better
with Lorena. The Homecare nurse came on Wednesday April 2nd and it
was awesome to see that Lorena had gained 25 grams a day, she
weighed 4240 grams a little over 9 pounds. Still she does not weigh
a lot considering that she is already 3 months old but if we can
keep her growing like this it will be great. The homecare nurse told
us to keep doing what we were doing. We seemed to have found a bit
of a routine now as I nurse her first each time for how ever long
she wants to and she is starting to take a bit longer now at around
10 minutes of nursing. Then we put the pumped fortified milk through
her feeding tube to fill her up. This still is a difficult task as
we continue to guess at how much she may have nursed because if we
give her too much she vomits the whole feed back out. We have
actually been going down in the amount she takes through the NG
feeding tube because she gets so much from nursing some times. After
having given the bottle a rest, as she refused it, I slowly
reintroduced it again for her last feed around midnight. She is so
out of it then and just sleeping that she will not nurse but I am
able to slip that bottle in and she has even drank all 60 ml the
last few times. If she does leave any I use a syringe to put the
last little bit through her feeding tube. So for now we are happy to
have found this routine. Still our goal is to slowly get her off of
the feeding tube once again. I tried to give her a bottle again
during the day after nursing but she refused so we let it rest again
and will try again an other day. For now this mommy is very happy
that Lorena wants to breastfeed.
On Thursday April 3rd we had our appointment with the cardiology
clinic and Lorena got an other echo done so that they can see if
there has been any changes and determine if she can come off of the
oxygen. As it turned out the lady who did the echo now explained
that it is hard to get an exact measurement on the hole in her
heart. About 6 weeks ago she never explained that to us and we were
told the hole was 2.9 mm in size but in this last echo she could
only see that it was somewhere between 3 and 4 mm in size. So bigger
then they initially thought it was.
On Friday April 4th the Canadian baby photographer came in the house
to do a photo session. Lorena was not impressed and she cried up a
storm but the photographer managed to get a few good pictures. It
took a lot of patience and trying to settle her in between
shots. In two weeks the sales person will come with the proofs.
On Monday April 7th we got a very special gift from a friend. Marian
came to our house to babysit Lorena for 3 hours while Lodewyk & I
got to go out together for the 1st time since Lorena was born. This
was a wonderful break for us. We knew she was in save hands as
Marian was a nurse and so she also finished the NG feeding for us.
Marian has been a great support from the beginning as she also
visited several times in the hospital and has given us food during
those first difficult weeks. She also offered to come more often so
we can do some more things together. Thank you Marian for giving us
this time together.
Today Tuesday April 8th has been a very busy day for Lorena. We had
our appointment at the health clinic to get her 1st immunization
shots. Lorena started crying well before she even got the shots.
When we put her on the scale she screamed and cried up a storm and
continued until after the shots. They now get 3 shots, 2 in one leg
and 1 in the other leg. Conversation with the nurse was most
difficult over her crying but eventually she calmed down. We rushed
home to feed her as we were already late for this. When we got done
feeding her and she finally fell asleep the door bell went and the
homecare nurse along with her student nurse and the lady from
respiratory came to wake her up. Lorena had her stats (oxygen
level) checked and was weighed again. The weight was not good at
all. She actually weighed less then last week she last 20 grams over
the last week. We think this is due to too many times that she
vomited the bottle out over this last week as well as so many things
going on each day for her. All these appointments seem to take a lot
out of her as she looses her sleep time then. Today was an other one
of those busy days.
This afternoon (just 30 minutes ago) we received some good news.
They called from the respiratory clinic to let us know that
cardiology has decided to take Lorena off of oxygen for a 3 week
trial period. This will be a huge change for us to finally, after 3
months, have a baby that is no longer plugged in. No more hose
getting stuck and best of all no more irritating prongs into
Lorena's little nose. She has been trying to rub them out so much
lately as I am sure they irritate her.
Still we have found out some more information about Lorena's heart
by reading on the internet. Which has caused us to be less eager to
get rid of the oxygen. This information raises some questions for us
and so we have asked to speak to the respiratory doctor and she has
agreed to call us tomorrow to answer our questions.
When we were in for the echo for
Lorena the lady mentioned about Lorena having Pulmonary
Arterial Hypertension (PAH). We looked
this up and I became discouraged by what I read:
Pulmonary (PULL-mun-ary) arterial hypertension (PAH) is continuous high blood pressure in the pulmonary artery. The average blood pressure in a normal pulmonary artery is about 14 mmHg when the person is resting. In PAH, the average is usually greater than 25 mmHg.
PAH is a serious condition for which there are treatments but no cure. Treatment benefits many patients.
The pulmonary arteries are the blood vessels that carry oxygen-poor blood from the right ventricle (VEN-trih-kul) in the heart to the small arteries in the lungs. In PAH, three types of changes may occur in the pulmonary arteries:
- The muscles within the walls of the arteries may tighten up. This makes the inside of the arteries narrower.
- The walls of the pulmonary arteries may thicken as the amount of muscle increases in some arteries. Scar tissue may form in the walls of arteries. As the walls thicken and scar, the arteries become increasingly narrow.
- Tiny blood clots may form within the smaller arteries, causing blockages.
There is less room for the blood to flow through these narrower arteries. The arteries may also stiffen. Over time, some of the arteries may become completely blocked.
The narrowing of the pulmonary arteries causes the right side of heart to work harder to pump blood through the lungs. Over time, the heart muscle weakens and loses its ability to pump enough blood for the body's needs. This is called right heart failure. Heart failure is the most common cause of death in people with PAH.
The goals of treatment for patients with pulmonary arterial hypertension (PAH) are to:
- Treat the underlying cause. This is the first priority in patients with secondary pulmonary arterial hypertension (SPAH). Sometimes this treatment can correct the PAH.
- Reduce symptoms and improve quality of life.
- Slow the growth of the smooth muscle cells and the development of blood clots.
- Increase the supply of blood and oxygen to the heart, while reducing its workload.
These treatments include:
- Medicines
- Oxygen
- Lung transplantation
Now our question to the doctor is if
Lorena has PAH which can never be cured and gets worse over time or
is it that because of the hole in her heart that she has this for a
time until the hole is gone. And is the oxygen treatment helping to
prevent her from truly getting PAH permanently. So at this time we
do not understand her heart condition completely yet and we are
hoping the doctor can answer our questions for us tomorrow. I will
have a better understanding next week and be able to explain more
about Lorena's heart problems in next weeks update.
Next week will be the very 1st week
since Lorena came home that we have no appointment to go to with
her. What a nice break for all of us. The home care nurse is still
coming as usual. The following week on the 23rd we have an other
appointment again at respiratory so they will be able to check how
well she is doing off of the oxygen. She will also get an other RSV
shot then. Then on the 30th we have an other appointment with
cardiology and get to finally talk to the cardiologist Dr. Patton.
By then her oxygen will have been off for 3 weeks and it will be
good to do more echos to see how well her heart does without the
oxygen. That is when they will review having her off the oxygen and
decide if she can stay off or needs to go back on the oxygen. We
were told to still keep the oxygen tanks. We can't even return them
if we would want to as they only pick them up if the Cardiologist
gives them the go ahead to do so.
We will continue to take it all one
step at a time. Today we are thankful for being able to take
off Lorena's oxygen and for the 1st time be able to walk around with
her without retracing our steps to make sure the hose does not get
wrapped around things. Even if it is only for a 3 week trial period
it will be a wonderful thing to experience. Already we catch our
self grabbing for that hose only to find it is no longer there. It
is a strange feeling and will take some getting used to. It is
wonderful to be able to see one bare cheek now all the time. To bad
she still needs her feeding tube stuck to her little cheek but who
knows she may decide to drink her bottles one of these days again.
Please continue to pray for healing for Lorena's little heart.
Love LRJJL
Marian being a wonderful support when Lorena was in ICU for the 2nd
time.
January 22, 2008
Holding daddy's hand while getting an other echo done.
Thursday April 3, 2008
Just being a little sweetheart for the echo.
All eyes and all cameras focused on Lorena.
Posing for the Canadian Baby Photographer.
Who said I can't stick out my tong?
Now she is happy.....................
................................now she is not!
Putting in a new NG feeding tube.
This is absolutely no fun for any one.
Mom and dad dread having to do this
but it must be done each week.
Securing the NG tube to the duoderm
sticker
on her cheek with the tegaderm sticker.
on her cheek with the tegaderm sticker.
Time to sooth her after all the tears.
We are thankful that Lorena's foot healed really
nice but she will always keep a bit of a scar.
Finally no protection is needed
anymore.
It took almost 3 months to heal.
It took almost 3 months to heal.
Practicing how to blow bubbles.
Having fun in the playpen.
Sweet dreams baby!