We were reminded today just what a miracle Porter is as Sarah ran into one of our favorite nurses in the NICU. Today, she is taking care of a baby on a cooling blanket and told Sarah that it doesn't look good, but that it was not ask bad as PK. She went on to tell Sarah that PK was a miracle because of prayer. Obviously, I felt the need to share that with you because, you all had a hand in her progress to date and her future progress and we can only praise God for the work he has done over the past 3 1/2 weeks. Many praises in this email, too.
PK has done very well off of the dialysis. We are now into our fourth day without it and her creatinine level was a 1.0 Monday through Wednesday, and this morning it actually dropped to .9. The nephrologist was pleased with daily labs. Her Potassium level is a little high, so he will closely monitor that. Also, her blood pressure has gone up a bit so they put her on a very tiny dose of blood pressure medicine to help. But if all goes well, we may get to bring her home early next week or even this weekend. She will have to go home with the dialysis tube (catheter) in her abdomen just to be sure, but they will monitor her levels over the next 2-4 weeks and then the hope is that she has surgery to remove the catheter.
The neurologist wants to keep her on her seizure medicine after we go home, and schedule another EEG for a week after our discharge date. Still no seizure activity and she has really been very active, but a source of stress nonetheless. Also, the developmental doctor came in this morning and is happy with where she is at and how well Porter eats. She said that she is cautiously optimistic, but that after the start Porter had, we are in the high risk category of many developmental issues. Nothing we didn't already know, just another reminder that once we leave the NICU, we will not be done.
So, we are in the process of forming "Team PK". As a first draft, Sarah and I are the owners/general managers/coaches, the pediatrician, nephrologist, neurologist, and occupational therapist make up our team, Luke is the waterboy, our family are the cheerleaders, and you all are the rabid fans. GO TEAM PK!!
James
The Prayers:
1. Pray that creatinine level continues to drop even without the assistance of dialysis and that dialysis does not return.
2. Pray that the seizures were an isolated incident and do not return.
3. Pray that her blood pressure is stabilized by the medicine.
4. Pray that her potassium level moves back to a more normal level.
5. Pray for strength for Sarah. We are in our fourth week of going to the NICU every day and, Sarah has been spending a lot of time up there. It is getting very difficult to leave each night.
6. Pray that Porter has the strength and determination only God can give to keep fighting.
Thursday, August 26, 2010
Monday, August 23, 2010
August 23 - 3 weeks old!
Porter is three weeks old today. Praise God!
Over the weekend Porter's creatinine level continued to drop (1.2 on Saturday, 1.0 on Sunday, and 1.0 this morning) to the delight of the nephrologist. He decided that he would suspend dialysis activities for at least 24 hours to see what happens. This is huge because she no longer needs to be plugged into the peritoneal dialysis tubes, so we can walk with her a bit further and pass her back and forth more easily. Of course it is still too early to tell what this means as far as a timeline, but this is a step forward. I will keep you all updated with her progress later in the week.
We did have a small scare on Saturday morning, in that we thought she had an infection from the dialysis. For those of you who have not googled "peritoneal dialysis", dialysis fluid is inserted into the peritineum (bag that holds your intestines) and sits there for almost an hour and is then drained. It should be clear and look like normal human waste. If it is cloudy, then that usually means infection, which is a common concern. Her first two drains of Saturday were cloudy. Thankfully, her blood tests and the lack of tenderness in the belly led the doctor to believe she had developed an allergy to the plastic tube in her belly. He said "she maybe young, but her body knows that it should not have plastic in it". They still gave her some antibiotics for the day, but everything cleared up, she was fine the rest of the weekend, and is no longer on the antibiotics.
A lot of people ask about Luke as well. I couldn't be more proud, as a father, of the way he has reacted to this situation we thrust him in. Of course, he is spoiled rotten by our loving mothers, but it is clear he senses what is going on and thankfully does not act in a way that makes us feel guilty about not spending as much time with him as we would like. As melodramatic as Sarah and I are, it is nice to have a child who is, for now, easy going. Sarah and I are blessed to have him as a son. Knowing that he soaks up every comment we say on the phone or at dinner, I want to ask him soon what he knows about PK and why she is in the hospital just to see.
Yesterday was promotion Sunday, so I took Luke to his new Sunday school class and attended Sunday school myself for the first time in a month, as I can now tell our story without busting into tears. (Sarah joined me for the service to hear Dr. Gary Chapman preach on attributes of a "functional" family.) This week's Sunday school lesson was on Psalm 40 (Note: modified by U2 in their song "40"). It would be hard for me to find my own words that better describe the events of the past three weeks, so I will end this update with the first three versus of the pslam.
"1 I waited patiently for the LORD; he turned to me and heard my cry. 2 He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. 3 He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the LORD."
The Prayers:
1. Pray that creatinine level continues to drop even without the assistance of dialysis and that dialysis does not return.
2. Pray that the seizures were an isolated incident and do not return.
3. Pray for strength for Sarah. We are in our fourth week of going to the NICU every day and, Sarah has been spending a lot of time up there. It is getting very difficult to leave each night.
4. Pray that Porter has the strength and determination only God can give to keep fighting.
Over the weekend Porter's creatinine level continued to drop (1.2 on Saturday, 1.0 on Sunday, and 1.0 this morning) to the delight of the nephrologist. He decided that he would suspend dialysis activities for at least 24 hours to see what happens. This is huge because she no longer needs to be plugged into the peritoneal dialysis tubes, so we can walk with her a bit further and pass her back and forth more easily. Of course it is still too early to tell what this means as far as a timeline, but this is a step forward. I will keep you all updated with her progress later in the week.
We did have a small scare on Saturday morning, in that we thought she had an infection from the dialysis. For those of you who have not googled "peritoneal dialysis", dialysis fluid is inserted into the peritineum (bag that holds your intestines) and sits there for almost an hour and is then drained. It should be clear and look like normal human waste. If it is cloudy, then that usually means infection, which is a common concern. Her first two drains of Saturday were cloudy. Thankfully, her blood tests and the lack of tenderness in the belly led the doctor to believe she had developed an allergy to the plastic tube in her belly. He said "she maybe young, but her body knows that it should not have plastic in it". They still gave her some antibiotics for the day, but everything cleared up, she was fine the rest of the weekend, and is no longer on the antibiotics.
A lot of people ask about Luke as well. I couldn't be more proud, as a father, of the way he has reacted to this situation we thrust him in. Of course, he is spoiled rotten by our loving mothers, but it is clear he senses what is going on and thankfully does not act in a way that makes us feel guilty about not spending as much time with him as we would like. As melodramatic as Sarah and I are, it is nice to have a child who is, for now, easy going. Sarah and I are blessed to have him as a son. Knowing that he soaks up every comment we say on the phone or at dinner, I want to ask him soon what he knows about PK and why she is in the hospital just to see.
Yesterday was promotion Sunday, so I took Luke to his new Sunday school class and attended Sunday school myself for the first time in a month, as I can now tell our story without busting into tears. (Sarah joined me for the service to hear Dr. Gary Chapman preach on attributes of a "functional" family.) This week's Sunday school lesson was on Psalm 40 (Note: modified by U2 in their song "40"). It would be hard for me to find my own words that better describe the events of the past three weeks, so I will end this update with the first three versus of the pslam.
"1 I waited patiently for the LORD; he turned to me and heard my cry. 2 He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. 3 He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the LORD."
The Prayers:
1. Pray that creatinine level continues to drop even without the assistance of dialysis and that dialysis does not return.
2. Pray that the seizures were an isolated incident and do not return.
3. Pray for strength for Sarah. We are in our fourth week of going to the NICU every day and, Sarah has been spending a lot of time up there. It is getting very difficult to leave each night.
4. Pray that Porter has the strength and determination only God can give to keep fighting.
August 20 - Tenth of a point
Just as an FYI, since we are only are watching one number at this point (albeit
a very important number), I have decided that I will dial back the frequency by
which I am sending updates. If something unexpected happens requiring prayerful
intervention, then you will surely be notified, but I will let everyone know how
the weekend went on Monday.
Praise God, the creatinine dropped .2 to 1.4 today. I guess she decided that
she needed to get this back on track and jump two tenths after the stall earlier
in the week. In speaking with the nephrologist this morning, he said that at
1.0 they will probabaly further dial back the dialysis and see what happens. We
are hopeful that we will reach this milestone early next week.
It is funny to think how much impact .1 has on our day, but if you or your
children have ever been critically ill and get test results daily, then you know
what I mean. I need to not get so wrapped up on a tenth of a point and enjoy
each moment I have with Porter because although she is still very sick, she is a
completely different baby then where she was two and a half weeks ago. I hope
everyone has a blessed weekend.
The Prayers:
1. Pray that creatinine level drops to the normal level of .4.
2. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
3. Pray that the seizures were an isolated incident and do not return.
4. Pray for strength for Sarah. We are in our third week of going to the NICU
every day and, now that she is nursing, Sarah has been spending a lot of time up
there. It is beginning to be a grind and we still have weeks to go.
5. Pray that Porter has the strength and determination only God can give to keep
fighting.
James
a very important number), I have decided that I will dial back the frequency by
which I am sending updates. If something unexpected happens requiring prayerful
intervention, then you will surely be notified, but I will let everyone know how
the weekend went on Monday.
Praise God, the creatinine dropped .2 to 1.4 today. I guess she decided that
she needed to get this back on track and jump two tenths after the stall earlier
in the week. In speaking with the nephrologist this morning, he said that at
1.0 they will probabaly further dial back the dialysis and see what happens. We
are hopeful that we will reach this milestone early next week.
It is funny to think how much impact .1 has on our day, but if you or your
children have ever been critically ill and get test results daily, then you know
what I mean. I need to not get so wrapped up on a tenth of a point and enjoy
each moment I have with Porter because although she is still very sick, she is a
completely different baby then where she was two and a half weeks ago. I hope
everyone has a blessed weekend.
The Prayers:
1. Pray that creatinine level drops to the normal level of .4.
2. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
3. Pray that the seizures were an isolated incident and do not return.
4. Pray for strength for Sarah. We are in our third week of going to the NICU
every day and, now that she is nursing, Sarah has been spending a lot of time up
there. It is beginning to be a grind and we still have weeks to go.
5. Pray that Porter has the strength and determination only God can give to keep
fighting.
James
August 18 - God's timing
Sarah and I were reminded today that Porter is going to go home on God's timing
and not ours. As her creatinine level kept dropping, we knew we were getting
closer to bringing her home. Unfortunately, her creatinine level did not drop
today. It did not go up, which is good, and at this time, it is still too early
to tell what impact this has on her kidney recovery. We have come so far and
one day at the same level is no reason to be discouraged. This does, however,
bring us back to the reality that we can only keep praying for her kidney
recovery and continue to bond with her the hours we are at the hospital.
The levels of the past three days have been more of what the nephrologist had
expected with tiny .1 drops with a stall mixed in. Right now her level is at
1.7. The "normal" level for a newborn is 0.4, and we need it to drop below 1.0
and stay there for multiple days before we start discussing options beyond
dialysis.
Other than the kidneys, she is doing great. She is eating a ton, and beginning
to gain weight after loosing all of that fluid weight due to her kidneys not
working. At the 9PM feedings Sarah and I have been playing PK music through the
magic of the iPod. No surprise PK loves James Taylor but is unexpectedly a huge
Lionel Ritchie fan. The other night, our nurse grabbed some of her colleagues
and gathered outside of our door to find out which songs the DJ was spinning.
Note: Sarah has nixed all gangsta rap.
The Prayers:
1. Pray that creatinine level drops to the normal level of .4.
2. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
3. Pray that the seizures were an isolated incident and do not return.
4. Pray for strength for Sarah. We are in our third week of going to the NICU
every day and, now that she is nursing, Sarah has been spending a lot of time up
there. It is beginning to be a grind and we still have weeks to go.
5. Pray that Porter has the strength and determination only God can give to keep
fighting.
Thank you all for your continued support,
James
and not ours. As her creatinine level kept dropping, we knew we were getting
closer to bringing her home. Unfortunately, her creatinine level did not drop
today. It did not go up, which is good, and at this time, it is still too early
to tell what impact this has on her kidney recovery. We have come so far and
one day at the same level is no reason to be discouraged. This does, however,
bring us back to the reality that we can only keep praying for her kidney
recovery and continue to bond with her the hours we are at the hospital.
The levels of the past three days have been more of what the nephrologist had
expected with tiny .1 drops with a stall mixed in. Right now her level is at
1.7. The "normal" level for a newborn is 0.4, and we need it to drop below 1.0
and stay there for multiple days before we start discussing options beyond
dialysis.
Other than the kidneys, she is doing great. She is eating a ton, and beginning
to gain weight after loosing all of that fluid weight due to her kidneys not
working. At the 9PM feedings Sarah and I have been playing PK music through the
magic of the iPod. No surprise PK loves James Taylor but is unexpectedly a huge
Lionel Ritchie fan. The other night, our nurse grabbed some of her colleagues
and gathered outside of our door to find out which songs the DJ was spinning.
Note: Sarah has nixed all gangsta rap.
The Prayers:
1. Pray that creatinine level drops to the normal level of .4.
2. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
3. Pray that the seizures were an isolated incident and do not return.
4. Pray for strength for Sarah. We are in our third week of going to the NICU
every day and, now that she is nursing, Sarah has been spending a lot of time up
there. It is beginning to be a grind and we still have weeks to go.
5. Pray that Porter has the strength and determination only God can give to keep
fighting.
Thank you all for your continued support,
James
August 17 - Update from Sarah ... and one from James
What a difference a week makes.
It's still strange that my life has been turned upside down. I definitely have moments during the day where I think, "This must be someone else's life." But with as many tears as we've cried over the last 2 weeks, right now, I'm just humbled and thankful for each day and the amazing number of prayers that have been answered. I cannot thank each of you enough.
James' latest email is below. As you'll read, we've come a long way in the last few days. She just looks and acts like a regular baby ... well, a baby with a dialysis tube sticking out of her side. James also attached a picture from yesterday. All the fluid that built up in her system while her kidneys were failing has finally drained out and she actually looks skinny to me!
Someone asked me earlier today what the timeline looks like - something I personally try not to ask the doctors, but of course, I do anyways.
It's anyones guess, but the nurses are guessing we have 2-3 more weeks in the hospital ahead of us. (I've learned that NICU doctors never make predictions no matter how hard you press them, so I'll take the nurses' predictions for now.)
Before we even get to the discussion of going home - or even better, going home without being on dialysis - her levels need to drop even more and hold steady in the safe range for 5-7 days in a row to prove that her kidney function has returned and is strong enough to do the work on its own.
Our prayer requests remain the same - that the seizures don't return, that her kidney function returns and that she has the strength to fight her way back 100% and get home soon!
Read below and take a look. Much love, Sarah
----- Forwarded Message ----
From: James Lary
Quick medical update:
- Creatinine saw another small drop overnight, so we are still at dialysis for
12 hours instead of 24.
- Sarah can now nurse whenever she wants to, which makes Porter very happy...and
more room in my freezer.
- She passed her hearing test with flying colors, at the lowest setting. I had
no doubt that she would because she is turning into a daddy's girl and knows the
sound of my voice.
Now that she is starting to act more like a baby, I thought I would share some
tidbits about PK that we have observed over the past few days. I am sure Sarah
will inform me of a few that I missed, but these are off the top of my head.
1. She has dimples. Not sure where they came from on the family tree, but they
are there.
2. She makes serious faces like her brother did. Luke is a very smiley boy, but
as a baby he was a very serious little man. Sometimes I think I am looking at
Luke.
3. She loves the pacifier. She has actually figured out how to hold it in her
mouth with her right hand.
4. She loves "baby massage". When she was retaining fluids and was puffy, the
occupational therapist taught us some massage techniques to keep her joints from
getting stiff. We still do it to keep her range of motion since we can't move
her very much due to the dialysis, and she is like butter once we start and it
is a fun way to play.
5. She has my feet. Long and skinny, skinny ankles, and she can spread her toes
really far. Those of you who have seen me pick up large objects with my feet
know what I am talking about.
Also, I have been asked to send out a more recent picture, so there is a new one
attached. She got a bath the night before this was taken and the nurse fluffed
her hair, so it is a bit crazy. I don't think that dark hair is going anywhere.
Have a blessed day,
JL
It's still strange that my life has been turned upside down. I definitely have moments during the day where I think, "This must be someone else's life." But with as many tears as we've cried over the last 2 weeks, right now, I'm just humbled and thankful for each day and the amazing number of prayers that have been answered. I cannot thank each of you enough.
James' latest email is below. As you'll read, we've come a long way in the last few days. She just looks and acts like a regular baby ... well, a baby with a dialysis tube sticking out of her side. James also attached a picture from yesterday. All the fluid that built up in her system while her kidneys were failing has finally drained out and she actually looks skinny to me!
Someone asked me earlier today what the timeline looks like - something I personally try not to ask the doctors, but of course, I do anyways.
It's anyones guess, but the nurses are guessing we have 2-3 more weeks in the hospital ahead of us. (I've learned that NICU doctors never make predictions no matter how hard you press them, so I'll take the nurses' predictions for now.)
Before we even get to the discussion of going home - or even better, going home without being on dialysis - her levels need to drop even more and hold steady in the safe range for 5-7 days in a row to prove that her kidney function has returned and is strong enough to do the work on its own.
Our prayer requests remain the same - that the seizures don't return, that her kidney function returns and that she has the strength to fight her way back 100% and get home soon!
Read below and take a look. Much love, Sarah
----- Forwarded Message ----
From: James Lary
Quick medical update:
- Creatinine saw another small drop overnight, so we are still at dialysis for
12 hours instead of 24.
- Sarah can now nurse whenever she wants to, which makes Porter very happy...and
more room in my freezer.
- She passed her hearing test with flying colors, at the lowest setting. I had
no doubt that she would because she is turning into a daddy's girl and knows the
sound of my voice.
Now that she is starting to act more like a baby, I thought I would share some
tidbits about PK that we have observed over the past few days. I am sure Sarah
will inform me of a few that I missed, but these are off the top of my head.
1. She has dimples. Not sure where they came from on the family tree, but they
are there.
2. She makes serious faces like her brother did. Luke is a very smiley boy, but
as a baby he was a very serious little man. Sometimes I think I am looking at
Luke.
3. She loves the pacifier. She has actually figured out how to hold it in her
mouth with her right hand.
4. She loves "baby massage". When she was retaining fluids and was puffy, the
occupational therapist taught us some massage techniques to keep her joints from
getting stiff. We still do it to keep her range of motion since we can't move
her very much due to the dialysis, and she is like butter once we start and it
is a fun way to play.
5. She has my feet. Long and skinny, skinny ankles, and she can spread her toes
really far. Those of you who have seen me pick up large objects with my feet
know what I am talking about.
Also, I have been asked to send out a more recent picture, so there is a new one
attached. She got a bath the night before this was taken and the nurse fluffed
her hair, so it is a bit crazy. I don't think that dark hair is going anywhere.
Have a blessed day,
JL
August 16 - 2 week picture
She looks like a different baby! All that fluid drained away and there she was!
August 16 - 2 weeks old
Two weeks ago, our lives were changed forever. Your prayers and support have
kept Sarah and I going through this difficult time. Today, I get to
share progress over the weekend, which is such a blessing. We know you are
happy for us for the progress, but we also hope that you also feel peace in
seeing God at work by answering the prayers of so many.
Sunday morning her creatinine level dropped 24% from Saturday's level. The
nephrologist was again surprised and pleased and cut her dialysis in half from
every hour for 24 hours to every hour from 6AM to 6PM. So great to get give my
baby girl a bottle last night with no tubes or hoses attached to her. This
morning, after no dialysis overnight, her creatinine dropped a tiny bit, but any
drop is good so they are going to keep her on 12 hours for now. It is still too
early to tell if her kidneys or the dialysis is doing the work, but pleased with
the progress nonetheless. Total drop in creatinine in four days: 66%.
After a full day of huge bottles at each feeding Saturday, Sarah was able to
nurse PK twice yesterday. To everyone's pleasure, PK was a champ enjoying
getting her food straight from the tap. The number of times Sarah can nurse
will increase based on the assessment by the occupational therapist. Overall
very promising.
Right now, it is really up to the kidneys on when we can come home. We are
still looking at a couple of weeks until there is enough data to determine the
plan for discharge, so I am once again back at work and we are trying to get
into a groove on schedules up at the hospital and at home with Luke. Parents
are very involved at the NICU. We are not only are we feeding her, but we
change her diapers, take her temperature at each feeding, and help the nurses
with anything they need so we can get prepared for bringing her home. Being
with her is important for us.
I was reminded by a friend, that I need to add a prayer request that the areas
where the catheder goes into her abdomen stay free of infection. This is a risk
with this type of dialysis so you will see that added.
The Prayers:
1. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
2. Pray that creatinine level continues to drop so we can get to a normal level.
3. Pray that the seizures were an isolated incident and do not return.
4. Pray that areas where the dialysis catheder enter her abdomen stay free of
infection.
5. Pray that Porter has the strength and determination only God can give to keep
fighting.
kept Sarah and I going through this difficult time. Today, I get to
share progress over the weekend, which is such a blessing. We know you are
happy for us for the progress, but we also hope that you also feel peace in
seeing God at work by answering the prayers of so many.
Sunday morning her creatinine level dropped 24% from Saturday's level. The
nephrologist was again surprised and pleased and cut her dialysis in half from
every hour for 24 hours to every hour from 6AM to 6PM. So great to get give my
baby girl a bottle last night with no tubes or hoses attached to her. This
morning, after no dialysis overnight, her creatinine dropped a tiny bit, but any
drop is good so they are going to keep her on 12 hours for now. It is still too
early to tell if her kidneys or the dialysis is doing the work, but pleased with
the progress nonetheless. Total drop in creatinine in four days: 66%.
After a full day of huge bottles at each feeding Saturday, Sarah was able to
nurse PK twice yesterday. To everyone's pleasure, PK was a champ enjoying
getting her food straight from the tap. The number of times Sarah can nurse
will increase based on the assessment by the occupational therapist. Overall
very promising.
Right now, it is really up to the kidneys on when we can come home. We are
still looking at a couple of weeks until there is enough data to determine the
plan for discharge, so I am once again back at work and we are trying to get
into a groove on schedules up at the hospital and at home with Luke. Parents
are very involved at the NICU. We are not only are we feeding her, but we
change her diapers, take her temperature at each feeding, and help the nurses
with anything they need so we can get prepared for bringing her home. Being
with her is important for us.
I was reminded by a friend, that I need to add a prayer request that the areas
where the catheder goes into her abdomen stay free of infection. This is a risk
with this type of dialysis so you will see that added.
The Prayers:
1. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
2. Pray that creatinine level continues to drop so we can get to a normal level.
3. Pray that the seizures were an isolated incident and do not return.
4. Pray that areas where the dialysis catheder enter her abdomen stay free of
infection.
5. Pray that Porter has the strength and determination only God can give to keep
fighting.
August 14 - Another good day
Thank you everyone for your prayers. These emails have been making their way to
so many people and the response has been so unbelievable and overwhelming. Even
more amazing is that we have seen God at work with answered prayers. She is our
miracle baby. We have come so far from my witnessing the operating room chaos
of 8 doctors and nurses bring life back to PK 13 days ago. Sarah and I gain so
much encouragement knowing you are praying and from the emails, texts, and
calls. We will never be able to repay each of you, but we do thank you.
God is Good. Another very positive day. The creatinine level dropped 33% from
yesterday's level. So in 48 hours her creatinine level has dropped 53%. So
blessed by this news. Still a ways from normal, but encouraging we haven't seen
a slow down. The nephrologist was very pleased to see this and remained very
confident that her kidneys will still pick up. There is no timing for this, but
we know they will be collecting information over the next days and weeks. Funny
how two weeks ago, I had never heard of creatinine, and now that is all I think
about.
Her EEG came back with improvements, but there were still some small indications
that there may be a possibility for seizures, so for now, she is staying on the
medication. It has been 8 days since the seizure activity so either the
medicine is working or it was an isolated incident. The neurologist visited
today while she was screaming because she was hungry. He was pleased with that
reaction. I have learned that Drs are always happy to hear a baby in the NICU
crying, parents and nurses not so much.
She has been taking a good sized bottle at each feeding, so no more feeding
tube. We can finally start making a dent in Sarah's milk supply, but Sarah has
been producing so much that I am in the market for a small deep freeze. Sarah
is a competitive person, and when the doctors said the best thing she could do
was pump for Porter, she took that as a challenge. Sarah is now feeding 1/2
of the Medical City NICU.
The Prayers:
1. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
2. Pray that creatinine level continues to drop so we can get to a normal level.
3. Pray that the seizures were an isolated incident and do not return.
4. Pray that Porter has the strength and determination only God can give to keep
fighting.
so many people and the response has been so unbelievable and overwhelming. Even
more amazing is that we have seen God at work with answered prayers. She is our
miracle baby. We have come so far from my witnessing the operating room chaos
of 8 doctors and nurses bring life back to PK 13 days ago. Sarah and I gain so
much encouragement knowing you are praying and from the emails, texts, and
calls. We will never be able to repay each of you, but we do thank you.
God is Good. Another very positive day. The creatinine level dropped 33% from
yesterday's level. So in 48 hours her creatinine level has dropped 53%. So
blessed by this news. Still a ways from normal, but encouraging we haven't seen
a slow down. The nephrologist was very pleased to see this and remained very
confident that her kidneys will still pick up. There is no timing for this, but
we know they will be collecting information over the next days and weeks. Funny
how two weeks ago, I had never heard of creatinine, and now that is all I think
about.
Her EEG came back with improvements, but there were still some small indications
that there may be a possibility for seizures, so for now, she is staying on the
medication. It has been 8 days since the seizure activity so either the
medicine is working or it was an isolated incident. The neurologist visited
today while she was screaming because she was hungry. He was pleased with that
reaction. I have learned that Drs are always happy to hear a baby in the NICU
crying, parents and nurses not so much.
She has been taking a good sized bottle at each feeding, so no more feeding
tube. We can finally start making a dent in Sarah's milk supply, but Sarah has
been producing so much that I am in the market for a small deep freeze. Sarah
is a competitive person, and when the doctors said the best thing she could do
was pump for Porter, she took that as a challenge. Sarah is now feeding 1/2
of the Medical City NICU.
The Prayers:
1. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
2. Pray that creatinine level continues to drop so we can get to a normal level.
3. Pray that the seizures were an isolated incident and do not return.
4. Pray that Porter has the strength and determination only God can give to keep
fighting.
August 13 - Ask and you shall receive
Ask and you shall receive. God worked another miracle in our lives yesterday.
The dialysis is working so well, that PK's creatinine level dropped by 33%.
Praise God. The phrenologist had set our expectations for a very small drop
(1%) and his nurse was excited to hear the number this morning. We are not
doing back flips as we must maintain cautious optimism, but we did cry tears of
joy.
So, what does this mean? Only God knows. This does not confirm anything about
her kidneys as it has only been 24 hours. I compare this to the "Biggest
Loser", when after week one they all lose a ton of weight. Some keep losing the
next week, some don't lose any. As the nurse said, we only have one data point
which doesn't tell us anything. We do know that God can drop the level how he
sees fit. We do know that God can start those kidneys whenever he wants to.
Sarah and I are continuing to be patient and prayerful.
The verse I keep on my heart is: "Do not be anxious about anything but in
everything, by prayer and petition, with thanksgiving, present your requests to
God." Philippians 4:6
Many of you have asked about her brain activity. We have been so focused on her
kidneys, that I have not mentioned it in a few days. We are now one week from
her seizure activity. She has been receiving a small amount of medication for
it, and thankfully no seizure activity has come back. She will be having
another EEG today to look at her brain activity. Thankfully, the same doctor
who read her previous two EEGs will be reading this one as well even though we
changed hospitals.
Praise: She took a bottle for the first time yesterday, which is a huge step,
because it shows she can breathe while eating and not choke. Sarah got to give
the first bottle and I got to give the second. Note: She burps like a 16 year
old boy.
The Prayers:
1. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
2. Pray that creatinine level continues to drop so we can get to a normal level.
3. Pray that the EEG results are positive, showing no seizures and normal brain
activity levels.
4. Pray that the seizures we saw last Friday were an isolated incident and do
not return.
5. Pray that Porter has the strength and determination only God can give to keep
fighting.
The dialysis is working so well, that PK's creatinine level dropped by 33%.
Praise God. The phrenologist had set our expectations for a very small drop
(1%) and his nurse was excited to hear the number this morning. We are not
doing back flips as we must maintain cautious optimism, but we did cry tears of
joy.
So, what does this mean? Only God knows. This does not confirm anything about
her kidneys as it has only been 24 hours. I compare this to the "Biggest
Loser", when after week one they all lose a ton of weight. Some keep losing the
next week, some don't lose any. As the nurse said, we only have one data point
which doesn't tell us anything. We do know that God can drop the level how he
sees fit. We do know that God can start those kidneys whenever he wants to.
Sarah and I are continuing to be patient and prayerful.
The verse I keep on my heart is: "Do not be anxious about anything but in
everything, by prayer and petition, with thanksgiving, present your requests to
God." Philippians 4:6
Many of you have asked about her brain activity. We have been so focused on her
kidneys, that I have not mentioned it in a few days. We are now one week from
her seizure activity. She has been receiving a small amount of medication for
it, and thankfully no seizure activity has come back. She will be having
another EEG today to look at her brain activity. Thankfully, the same doctor
who read her previous two EEGs will be reading this one as well even though we
changed hospitals.
Praise: She took a bottle for the first time yesterday, which is a huge step,
because it shows she can breathe while eating and not choke. Sarah got to give
the first bottle and I got to give the second. Note: She burps like a 16 year
old boy.
The Prayers:
1. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
2. Pray that creatinine level continues to drop so we can get to a normal level.
3. Pray that the EEG results are positive, showing no seizures and normal brain
activity levels.
4. Pray that the seizures we saw last Friday were an isolated incident and do
not return.
5. Pray that Porter has the strength and determination only God can give to keep
fighting.
August 12 - Dialysis
Hi everyone - I can't believe it's been 10 days since Porter's arrival. It feels like 10 years.
James wrote an update to send out to our church group earlier today updating everyone on Porter's surgery last night. It was a late night as the pediatric surgeon was called away for an emergency surgery at another hospital, but since we were not an emergency case, we were happy to get bumped so he could help another more critical child. We all finally turned in around 2 am and she was resting peacefully under the watchful eye of her daddy and nurses.
As she came out of sedation this morning we started the dialysis. As James writes below, this is not a permanent situation. Our biggest prayer is that the dialysis gives her kidneys an opportunity to rest and heal - and that it's in the Lord's hands whether or not we leave the hospital with the catheter still in place and learn how to do the dialysis at home ourselves. But that's weeks away and I can't get myself too excited about any possibilities. The roller coaster of having a critically ill child makes you try not to wish for things that are too far down the road that may or may not occur, but we are faithfully praying for the desire of our hearts and that's the best we can do.
I got to feed her a bottle today - it was actually a big surprise. She was doing so well this afternoon that the neonatologist said we could give it a try with me feeding her while she laid in bed so the catheter was not moved while the incision is still healing. It was amazing. You take all these little things for granted in a healthy child. I am so thankful for the little things today.
The team has been great, and although we hated to leave Presby and their team, today has confirmed it was the right decision. She is improving little by little.
She still needs your prayers. The risk of infection or leaking with a catheter in an infant is very high. She is having another EEG tomorrow to measure brain activity and will hopefully show more signs of improvement.
Our faith, family and friends continue to sustain us. And we will never know how to thank everyone.
Much love, Sarah
(JAMES' UPDATE BELOW)
From: James Lary <james_lary@yahoo.com>
Sent: Thu, August 12, 2010 9:14:24 AM
Subject: [TNS@FBD] Porter Kate Lary - Update Thursday AM
All,
Sorry to have fallen off the face of the earth the past couple of days.
Unfortunately, life with a 9 day old in the NICU is not uneventful. This will
be a long one.
As Sarah reported in her email last night, we were transferred to Medical City
Children's Hospital for evaluation for dialysis. Presby does not have a
peditric nephrologist (kidney doctor) on staff. This option was presented to us
about noon on Tuesday. We decided that if the creatinine level did not have a
pretty dramatic decrease overnight then we would move on Wednesday. In addition
to not wanting to move Porter, our experience at the Presby NICU was so
unbelieveable and we felt so loved, we did not want to leave and start all over
with new protocols, doctors and nurses. The creatinine level actually went up,
so our decision to transfer was easy.
Before we left yesterday, Luke did get to meet Porter for the first time. He
was very into her early on and then became more interested with the light dimmer
in the room that he could reach. He sang "Twinkle Twinkle" to her.
Thankfully, we were not yet in an emergency situation so Porter's move, albeit
stressful, was uneventful and without people running and sirens. Sarah and I
had a bumpy start once we got here, as my father tells me can be common with
transfers, but Porter's care never declined and the staff here immediately
solved the problem.
So, once we met with the nephrologist, we decided that the dialysis was the best
option. For your googlers out there, we are doing "peritoneal dialysis". But be
careful what you read on the internet because every kid and case is different
and some of it can depress you.
You probably have the same questions we did so, first, just because we are
starting dialysis doesn't mean that her kidneys will not eventually catch up,
and if that happens we can stop and have the catheter removed. This is our number
Sent: Thu, August 12, 2010 9:14:24 AM
Subject: [TNS@FBD] Porter Kate Lary - Update Thursday AM
All,
Sorry to have fallen off the face of the earth the past couple of days.
Unfortunately, life with a 9 day old in the NICU is not uneventful. This will
be a long one.
As Sarah reported in her email last night, we were transferred to Medical City
Children's Hospital for evaluation for dialysis. Presby does not have a
peditric nephrologist (kidney doctor) on staff. This option was presented to us
about noon on Tuesday. We decided that if the creatinine level did not have a
pretty dramatic decrease overnight then we would move on Wednesday. In addition
to not wanting to move Porter, our experience at the Presby NICU was so
unbelieveable and we felt so loved, we did not want to leave and start all over
with new protocols, doctors and nurses. The creatinine level actually went up,
so our decision to transfer was easy.
Before we left yesterday, Luke did get to meet Porter for the first time. He
was very into her early on and then became more interested with the light dimmer
in the room that he could reach. He sang "Twinkle Twinkle" to her.
Thankfully, we were not yet in an emergency situation so Porter's move, albeit
stressful, was uneventful and without people running and sirens. Sarah and I
had a bumpy start once we got here, as my father tells me can be common with
transfers, but Porter's care never declined and the staff here immediately
solved the problem.
So, once we met with the nephrologist, we decided that the dialysis was the best
option. For your googlers out there, we are doing "peritoneal dialysis". But be
careful what you read on the internet because every kid and case is different
and some of it can depress you.
You probably have the same questions we did so, first, just because we are
starting dialysis doesn't mean that her kidneys will not eventually catch up,
and if that happens we can stop and have the catheter removed. This is our number
one prayer.
This is not going to help or impeede her kidney's recovery. This is not a kickstart to the
kidneys, dialysis is doing the work of the kidneys and cleans out the bad stuff
in your body. Also, we can go home on dialysis and Sarah and I can be trained
to do this at home.
The surgery was a success. She was out of her room for less than one hour. I
am so grateful that her improvements have made her stable and easily moved. It
is a blessing to be in a facility where in the same day speak with a
neonatologist, pediatric nephrologist, pediatric surgen, and a pediatric
anestheiologist, in addition to a whole host of qualified nurses. Also, the
nurses converted a room with a couch into a bed so that I could spend the night
at the hospital.
Other than that, she is eating like crazy, has all good signs otherwise. We saw
a pediatric neurologist again and he as optimistic with her progress. They were
even going to try bottle feeding if we didn't move yesterday, so that will be
pushed back. Now that I know where a computer is in this hospital I will be
better about sending updates. It is therapudic for me so, thank you for reading
my ramblings.
The Prayers:
1. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
2. Pray that the dialysis does its job and flushes out all the bad stuff in
Porter's body.
kidneys, dialysis is doing the work of the kidneys and cleans out the bad stuff
in your body. Also, we can go home on dialysis and Sarah and I can be trained
to do this at home.
The surgery was a success. She was out of her room for less than one hour. I
am so grateful that her improvements have made her stable and easily moved. It
is a blessing to be in a facility where in the same day speak with a
neonatologist, pediatric nephrologist, pediatric surgen, and a pediatric
anestheiologist, in addition to a whole host of qualified nurses. Also, the
nurses converted a room with a couch into a bed so that I could spend the night
at the hospital.
Other than that, she is eating like crazy, has all good signs otherwise. We saw
a pediatric neurologist again and he as optimistic with her progress. They were
even going to try bottle feeding if we didn't move yesterday, so that will be
pushed back. Now that I know where a computer is in this hospital I will be
better about sending updates. It is therapudic for me so, thank you for reading
my ramblings.
The Prayers:
1. Pray that Porter's kidneys kick into full gear so that the dialysis is
temporary.
2. Pray that the dialysis does its job and flushes out all the bad stuff in
Porter's body.
3. Pray that the seizures we saw last Friday were an isolated incident and do
not return.
4. Pray that Porter has the strength and determination only God can give to keep
fighting.
James
August 11 - Surgery
We transferred to Medical City today to be evaluated by a pediatric kidney specialist and made the decision to move ahead with dialysis. It's been a hard day as we considered the right course to continue to fight this battle.
She will go into surgery in about an hour to have a catheter/filter inserted in her tummy and they will be able to begin dialysis tonight.
Please pray tonight for success in the surgery, that it goes smoothly, she comes off the anesthesia healthy,and that the dialysis is the jolt her kidneys need to correct the levels in her body.
Our hearts are tired and heavy, but we are continuing to lean on the Lord, our family and friends. Thanks for loving us.
Sarah and James
She will go into surgery in about an hour to have a catheter/filter inserted in her tummy and they will be able to begin dialysis tonight.
Please pray tonight for success in the surgery, that it goes smoothly, she comes off the anesthesia healthy,and that the dialysis is the jolt her kidneys need to correct the levels in her body.
Our hearts are tired and heavy, but we are continuing to lean on the Lord, our family and friends. Thanks for loving us.
Sarah and James
August 9 - One week = one decade
It is shocking to think that it has been a week already. I am sure that my
heart has aged a decade. It is such a blur and I am beginning to fuse details
from the different days together. I guess it is good that I have these emails
as a journal of activity. I returned to work today, just to test the waters and
to just be distracted for a little bit, but I cannot help myself from reading
message boards and blogs of NICU babies and I am reminded just how dire the
situation still is.
If you were ever on the fence about the power of prayer, I ask you to go back
and look at the progress made over the past week. Your prayers and our prayers
are why we are in the postion we are in today. I beg you to not let up on the
prayers as God is hearing them and he is at work.
The Good:
- She is digesting mom's milk very well and they have upped her dose to 20ml
every four hours. This is still a small amount for such a big baby, but it is 4
times larger than when we started 48 hours ago.
- Sarah got to hold her for the first time yesterday. It was clear that she
enjoyed it and we plan on going back for more holding this evening.
- The ocupational therepist came by this morning and showed Sarah some message
techniques, which Sarah reported that Porter just loved. And there are no joint
issues which can be common in babies who don't get moved very much.
- Her breathing issue which creeped up yesterday has been resolved, but
unfortunately not because of her kidney function.
The Bad:
- This is where we are going to be more specific on the prayers for her
kidneys. There is a number from her various tests that we keep watching called
"Creatinine" which is one of the measurements for how well the
kidneys are functioning. This number has been steadily rising over the past
week and we need that number to plateau then fall to a normal level. We thought
it had plateaued yesterday, but the level had risen again this morning.
The Prayers:
1. Pray that the Creatinine level plateaus and begins to lower ASAP.
2. Pray that the seizures we saw on Friday were an isolated incident and do not
return.
3. Pray that her blood levels - and all levels - improve and return to normal.
4. Pray that Porter has the strength and determination only God can give to keep
fighting.
James
heart has aged a decade. It is such a blur and I am beginning to fuse details
from the different days together. I guess it is good that I have these emails
as a journal of activity. I returned to work today, just to test the waters and
to just be distracted for a little bit, but I cannot help myself from reading
message boards and blogs of NICU babies and I am reminded just how dire the
situation still is.
If you were ever on the fence about the power of prayer, I ask you to go back
and look at the progress made over the past week. Your prayers and our prayers
are why we are in the postion we are in today. I beg you to not let up on the
prayers as God is hearing them and he is at work.
The Good:
- She is digesting mom's milk very well and they have upped her dose to 20ml
every four hours. This is still a small amount for such a big baby, but it is 4
times larger than when we started 48 hours ago.
- Sarah got to hold her for the first time yesterday. It was clear that she
enjoyed it and we plan on going back for more holding this evening.
- The ocupational therepist came by this morning and showed Sarah some message
techniques, which Sarah reported that Porter just loved. And there are no joint
issues which can be common in babies who don't get moved very much.
- Her breathing issue which creeped up yesterday has been resolved, but
unfortunately not because of her kidney function.
The Bad:
- This is where we are going to be more specific on the prayers for her
kidneys. There is a number from her various tests that we keep watching called
"Creatinine"
kidneys are functioning. This number has been steadily rising over the past
week and we need that number to plateau then fall to a normal level. We thought
it had plateaued yesterday, but the level had risen again this morning.
The Prayers:
1. Pray that the Creatinine level plateaus and begins to lower ASAP.
2. Pray that the seizures we saw on Friday were an isolated incident and do not
return.
3. Pray that her blood levels - and all levels - improve and return to normal.
4. Pray that Porter has the strength and determination only God can give to keep
fighting.
James
August 8 - Held her for the first time
I was trying not to cry and not to look fat at the same time ;-) Cannot express how amazing it is to hold your baby after just staring at her for 6 days. I needed this.
August 8 - Improving
Thankfully, I have little to report, so this will be a short one.
Porter's kidneys are still improving and she is now down to only one medication
for her kidneys. It is amazing to witness God at work hour by hour. She took
so well to the 5ml of mother's milk over the past 24 hours that they have
increased her dose to 10ml. Sarah got to change her diaper and take her
temperature for the first time last night. Still no seizure activity. Big Big
Praises!!! The doctors have not given us any timelines so we are planning for a
stay in the "weeks".
One new development, due to her kidneys not working right over the past week,
she has retained a whole bunch of fluid. Because of this, she has developed
slight breathing difficulty on her left side so they have her laying on her
right side to try and take some of the water weight off of her chest. We are
praying that as her kidneys keep flushing out the fluids this will fix itself.
The big news is that we are planning on getting to hold Porter for the first
time today. Porter has tubes going in and out of her umbilical cord to put
medicine and IVs in and extract blood out. They are going to take one of the
lines out and we will be able to hold her.
Specific prayers:
1. Pray that her kidneys continue to improve and her urine output continues to
rise.
2. Pray that the seizures we saw on Friday were an isolated incident and do not
return.
3. Pray that as her kidneys flush the built up fluid, this breathing issue
disappears.
4. Pray that her blood levels - and all levels - improve and return to normal.
5. Pray that Porter has the strength and determination only God can give to
keep
fighting.
Thank you all for your continued prayers,
James
Porter's kidneys are still improving and she is now down to only one medication
for her kidneys. It is amazing to witness God at work hour by hour. She took
so well to the 5ml of mother's milk over the past 24 hours that they have
increased her dose to 10ml. Sarah got to change her diaper and take her
temperature for the first time last night. Still no seizure activity. Big Big
Praises!!! The doctors have not given us any timelines so we are planning for a
stay in the "weeks".
One new development, due to her kidneys not working right over the past week,
she has retained a whole bunch of fluid. Because of this, she has developed
slight breathing difficulty on her left side so they have her laying on her
right side to try and take some of the water weight off of her chest. We are
praying that as her kidneys keep flushing out the fluids this will fix itself.
The big news is that we are planning on getting to hold Porter for the first
time today. Porter has tubes going in and out of her umbilical cord to put
medicine and IVs in and extract blood out. They are going to take one of the
lines out and we will be able to hold her.
Specific prayers:
1. Pray that her kidneys continue to improve and her urine output continues to
rise.
2. Pray that the seizures we saw on Friday were an isolated incident and do not
return.
3. Pray that as her kidneys flush the built up fluid, this breathing issue
disappears.
4. Pray that her blood levels - and all levels - improve and return to normal.
5. Pray that Porter has the strength and determination only God can give to
keep
fighting.
Thank you all for your continued prayers,
James
August 7 - Update
Everyone,
Sorry for the late update, we came home last night and we are still trying to
get adjusted to being parents of a three year old and a baby in the NICU. We
are deeply grateful for our parents, as they have been an unbelievable help with
Luke during this transition. We did get a good night sleep and our doctor even
commented that we looked better today.
I am pleased to say that the MRI came back completely normal and the EEG results
were the same as the first. There are always caveats with the cooling and with
various medicines on the EEG results but no seizure activity is good and we will
take it. We are now over 24 hours and there have been no more seizures. We are
praying that this was an isolated incident. Before and since the seizure
activity, we received so much positive news and I think this brought us back to
understand that 1) she is still really sick and has a long way to go and 2) God
is very much in control of this situation.
Your prayers for her kidneys are working, so keep them going. Her urine
production is way up, pretty much 4 times larger than 48 hours ago, so they have
taken her off of one medicine for her kidneys and lowered the dose on the other
two.
Some exciting news is that she got about 5ml of breast milk for the first time
at noon today. (She is still getting her nutrients from an IV in her umbilical
cord). In a few minutes they will check to see if she was able to digest it.
When I got to the hospital this morning she had been sucking on a pacifier for
about an hour so I know she is ready to eat. And the doctor told us that if she
keeps up her progress we may get to hold her in a couple of days.
I have included a picture of her with her monkey lovey, which is already always
close to her. This way you can see who your are praying for and how beautiful
she is.
Below are the specific prayer requests. This is email has a lot of positive
information and she looks very healthy, but she is still very very sick and your
prayers are still very much in need. Sarah and I have looked at each other with
tears in our eyes so many times asking "how are we going to thank all of these
people?", and I am not sure of the answer. For now, know that each of you are
special to us and we thank you so very much for the prayers and support.
1. Pray that the seizures we saw on Friday were an isolated incident and do not
return.
2. Pray that her kidneys continue to improve and her urine output continues to
rise.
3. Pray that her blood levels - and all levels - improve and return to normal.
4. Pray that Porter has the strength and determination only God can give to keep
fighting.
James
Sorry for the late update, we came home last night and we are still trying to
get adjusted to being parents of a three year old and a baby in the NICU. We
are deeply grateful for our parents, as they have been an unbelievable help with
Luke during this transition. We did get a good night sleep and our doctor even
commented that we looked better today.
I am pleased to say that the MRI came back completely normal and the EEG results
were the same as the first. There are always caveats with the cooling and with
various medicines on the EEG results but no seizure activity is good and we will
take it. We are now over 24 hours and there have been no more seizures. We are
praying that this was an isolated incident. Before and since the seizure
activity, we received so much positive news and I think this brought us back to
understand that 1) she is still really sick and has a long way to go and 2) God
is very much in control of this situation.
Your prayers for her kidneys are working, so keep them going. Her urine
production is way up, pretty much 4 times larger than 48 hours ago, so they have
taken her off of one medicine for her kidneys and lowered the dose on the other
two.
Some exciting news is that she got about 5ml of breast milk for the first time
at noon today. (She is still getting her nutrients from an IV in her umbilical
cord). In a few minutes they will check to see if she was able to digest it.
When I got to the hospital this morning she had been sucking on a pacifier for
about an hour so I know she is ready to eat. And the doctor told us that if she
keeps up her progress we may get to hold her in a couple of days.
I have included a picture of her with her monkey lovey, which is already always
close to her. This way you can see who your are praying for and how beautiful
she is.
Below are the specific prayer requests. This is email has a lot of positive
information and she looks very healthy, but she is still very very sick and your
prayers are still very much in need. Sarah and I have looked at each other with
tears in our eyes so many times asking "how are we going to thank all of these
people?", and I am not sure of the answer. For now, know that each of you are
special to us and we thank you so very much for the prayers and support.
1. Pray that the seizures we saw on Friday were an isolated incident and do not
return.
2. Pray that her kidneys continue to improve and her urine output continues to
rise.
3. Pray that her blood levels - and all levels - improve and return to normal.
4. Pray that Porter has the strength and determination only God can give to keep
fighting.
James
August 7 - So what happened ...
Sweet friends - many of you know the incredible roller coaster of Porter Kate's arrival on Monday at 8:35 pm. If not, I am not quite ready to relive the details of the last five days, but quickly ...
What happened?
The OBs are still waiting for test results, but either the placenta detached from the uterus during labor or I experienced a very rare disorder called vesa previa. Porter arrived via emergency c-section, lifeless and having lost more than 1/3 of her blood volume. It took nearly 15 minutes to revive her. The damage to her little body's lack of oxygen for an unknown amount of time was serious.
What is going on now?
She has been in the NICU since those 15 minutes. It's been a bumpy week. Praise to God that she was off the ventilator within a day. An enormous praise. There are so many little details of her medical condition, but to make it short and give you an understanding, one of the nurses told James that she is the sickest baby in the NICU. She's also the largest (8 lbs 5 oz and 21 1/4 inches) ... I knew she was going to be big! We had a scare yesterday. She had not shown an signs of seizures - which was amazing and the best sign - and then she started seizing when we were visiting her yesterday morning. Praise God that the MRI and EEG of her brain have come back. The MRI showed no signs of damage. The EEG returned the same as the one they did on Tuesday.
What is the road ahead?
It's going to be long. We do know that. How long? That's up to the Lord and Porter. Her recovery will be slow as they do not want to stress any systems until one is fully recovered. I ache to hold her and am hoping that will be in the next 2 weeks. I am pumping and storing milk for her at the hospital. Another praise is that my milk came in two days ago and I stored so much at the hospital already that they told me just keep it at home now that we're at home.
How is Luke?
He is amazing. Last night after he went to bed, we went back to see Porter. Earlier in the night Luke observed that daddy and mommy have wrist bands with her name on them. The nurse gave me a wrist band for Luke and he is proudly wearing it this morning. He was most impressed with the fact that he doesn't have to take it off for bath time. He knows that his sister came out of mommy's tummy and didn't feel good so she is staying with the doctors until she feels better. We are not taking him up to see her - partly hospital policy and partly because we don't want him to see her with tubes and machines. It's hard enough to see it as an adult.
How can you pray?
1. Pray that the seizures we saw on Friday were an isolated incident and do not return.
2. Pray that her kidneys continue to improve and her urine output continues to rise.
3. Pray that her blood levels - and all levels - improve and return to normal.
4. Pray that Porter has the strength and determination only God can give to keep fighting.
James and I were laying in bed the other night and decided that the story of our daughter makes it easier for us to believe the stories we read Luke from his children's Bible. Yes, David could slay Goliath. Yes, Jonah could be in the belly of a whale. Yes, God can bring out daughter back from death and slowly restore life and perfection to her sweet body.
We've both been "Christians" for many years, but I think that there are times in life when God reveals himself in a mighty way and changes your heart forever ... so that there's no way you can deny the reality of God himself, his son and the work of his spirit. It's undeniable that God intervened to save our daughter on Monday night and continues to do so. We aren't looking back ... Only forward to the day that we bring her home and tell her the miraculous story of her life.
Thank you for loving us and praying for our daughter. We are humbled and thankful for the love and support more than you know. Your emails and text have been our greatest source of encouragement to keep going ... keep believing ... keep strong in the fact that we are not carrying this burden alone.
Sarah
August 6 - Snuggled
Porter looked so cute today snuggled with her lovey (artfully arranged by the NICU nurses ;-)) that we had to snap some pictures and wanted to share those with you.
Please keep your prayers and those of your prayer chains going - She needs those today just as much as the first day.
August 6 - Seizures
This morning we witnessed a troubling setback. Porter had some seizure activity
as Sarah and I were visiting her. Not 10 minutes before that, the doctor was
pleased with her progress from the warming up process and the fear that Sarah
and I had spent days creating was beginning to melt away. Her urine output had
significantly increased, although not where they want it, but improving and her
movements were consistent with a baby on the mend.
This is a rather large setback. They are about to do an MRI on her brain
(12:45ish) and will do another EEG (brain activity) after that (1:30ish). We
will then talk to the pediatric neurologist this evening or tomorrow about the
results.
1. Please pray that the MRI and EEG all come back clear
2. Please pray for no more seizure activity
3. Please continue to pray for Porter's kidneys as they still have a long way to
go
Love you all,
James
as Sarah and I were visiting her. Not 10 minutes before that, the doctor was
pleased with her progress from the warming up process and the fear that Sarah
and I had spent days creating was beginning to melt away. Her urine output had
significantly increased, although not where they want it, but improving and her
movements were consistent with a baby on the mend.
This is a rather large setback. They are about to do an MRI on her brain
(12:45ish) and will do another EEG (brain activity) after that (1:30ish). We
will then talk to the pediatric neurologist this evening or tomorrow about the
results.
1. Please pray that the MRI and EEG all come back clear
2. Please pray for no more seizure activity
3. Please continue to pray for Porter's kidneys as they still have a long way to
go
Love you all,
James
August 5 - Power of prayer
So thankful for our Sunday school class. They are meeting tonight to pray for Porter as she begins the rewarming process. We feel so loved and supported. Cannot imagine walking this road without our faith, family and friends.
August 5 - Bringing her out of hypothermia
Hello all,
Porter had a good night with little activity, which is good. A praise is that
her urine output has increase so everyone is pleased with that. It is so
evident that the Lord is answering our prayers from yesterday in this latest
development. We are still waiting for certain kidney levels to plateau, so our
biggest prayer right now is that her kidney function will continue to improve
and return to normal very soon.
Tonight around 9:30PM they will begin bringing her out of the induced
hypothermia. This will take all night as they raise her temperature around .5
degrees celsius per hour. Then there is more waiting. Please pray that this
process goes smoothly and that her other functions which have been brought back
to or are moving toward normal, stay that way. We will be praying for this at
9:30 tonight and would love for you to pray at that time as well.
I really cannot express what your support means to us. Sarah and I look at each
other and just talk about how blessed we are to have so many people praying for
us. Short updates are positive so I will get back to taking care of my girls.
James
Porter had a good night with little activity, which is good. A praise is that
her urine output has increase so everyone is pleased with that. It is so
evident that the Lord is answering our prayers from yesterday in this latest
development. We are still waiting for certain kidney levels to plateau, so our
biggest prayer right now is that her kidney function will continue to improve
and return to normal very soon.
Tonight around 9:30PM they will begin bringing her out of the induced
hypothermia. This will take all night as they raise her temperature around .5
degrees celsius per hour. Then there is more waiting. Please pray that this
process goes smoothly and that her other functions which have been brought back
to or are moving toward normal, stay that way. We will be praying for this at
9:30 tonight and would love for you to pray at that time as well.
I really cannot express what your support means to us. Sarah and I look at each
other and just talk about how blessed we are to have so many people praying for
us. Short updates are positive so I will get back to taking care of my girls.
James
August 4- 36 hours later
Morning Everyone,
The EEG (brain activity) results came back with negative signs for seizures
which is a blessing. Her baseline brain activity was lower than normal, but
that can be common with babies in her cooled state, so not bad news, not good
news, but hopeful news. Please continue to pray that her brain heals completely.
Her kidneys are not processing the fluid as the doctors and nurses would like,
so they are giving her medicine to help her with that. Please pray that her
kidney function improves.
We have to keep reminding ourselves that although it feels like an eternity, it
has only been 36 hours. Although we have seen dramatic improvements there is
still a long road ahead and the improvements are likely to take longer to
occur.
I don't think we are ready for visitors as we are still in shock of the
situation, but please keep the emails and texts coming, we get encouragement
from each of them, even if we don't respond. Thank you all for your continued
prayers. I know the reason why the doctors and nurses continue to remain
cautiously optimistic is due to your's and our answered prayers.
The Larys
The EEG (brain activity) results came back with negative signs for seizures
which is a blessing. Her baseline brain activity was lower than normal, but
that can be common with babies in her cooled state, so not bad news, not good
news, but hopeful news. Please continue to pray that her brain heals completely.
Her kidneys are not processing the fluid as the doctors and nurses would like,
so they are giving her medicine to help her with that. Please pray that her
kidney function improves.
We have to keep reminding ourselves that although it feels like an eternity, it
has only been 36 hours. Although we have seen dramatic improvements there is
still a long road ahead and the improvements are likely to take longer to
occur.
I don't think we are ready for visitors as we are still in shock of the
situation, but please keep the emails and texts coming, we get encouragement
from each of them, even if we don't respond. Thank you all for your continued
prayers. I know the reason why the doctors and nurses continue to remain
cautiously optimistic is due to your's and our answered prayers.
The Larys
August 3 - Off the ventilator
First, thank you for your continued prayers. It is such a blessing to have
support like this. I am a complete basket case, and know that with each email
or text my eyes fill with tears of joy and I am calmed with peace.
Biggest praises: As of this afternoon she is now off the ventilator and I was
able to hear her cry for the first time and give her a pacifier. I had never
wanted to hear a baby cry so much in my entire life. She continues to be a
feisty girl, just like her momma, which pleases the doctors and nurses on her
progress. Your prayers at work!!!
Biggest prayers: Please pray that she remains off of the ventilator. She also
had an EEG today which measures brain activity, please pray for the positive
results of that test. Also, pray for continued progress as the doctors and
nurses attempt to level out each of her "levels" (i.e. blood, glucose, etc...).
Info on the treatment:
She lost a lot of blood so they are continuing giving her platelets and plasma
as needed. They have also cooled her body temperature to 33.5 degrees Celsius
(down 3 degrees Celsius from normal), This is a fairly new treatment (within the
last few years) which is basically treatment through induced hypothermia which
attempts to reduce death or disability in babies which have the same experience
as Porter.
Your prayers are working,
James
support like this. I am a complete basket case, and know that with each email
or text my eyes fill with tears of joy and I am calmed with peace.
Biggest praises: As of this afternoon she is now off the ventilator and I was
able to hear her cry for the first time and give her a pacifier. I had never
wanted to hear a baby cry so much in my entire life. She continues to be a
feisty girl, just like her momma, which pleases the doctors and nurses on her
progress. Your prayers at work!!!
Biggest prayers: Please pray that she remains off of the ventilator. She also
had an EEG today which measures brain activity, please pray for the positive
results of that test. Also, pray for continued progress as the doctors and
nurses attempt to level out each of her "levels" (i.e. blood, glucose, etc...).
Info on the treatment:
She lost a lot of blood so they are continuing giving her platelets and plasma
as needed. They have also cooled her body temperature to 33.5 degrees Celsius
(down 3 degrees Celsius from normal), This is a fairly new treatment (within the
last few years) which is basically treatment through induced hypothermia which
attempts to reduce death or disability in babies which have the same experience
as Porter.
Your prayers are working,
James
August 2 - She's here
Our beautiful daughter, Porter Kate Lary, has arrived!
August 2nd at 8:45 pm, 8 lbs 5 oz, 21 1/4 inches.
She desperately needs prayer - please join us in seeking the Lord's healing and protection.
Porter arrived via an emergency C-section after her heart rate dropped in half suddenly. She was not breathing and needed CPR, a breathing tube and many blood transfusions. We almost lost her and are so incredibly thankful to God that she is alive.
However, she is still very much in the woods. She was rushed to the NICU and has been there since the delivery. We have been told there is a long road ahead and have no guarantees - it's hour by hour.
The NICU docs have been running many, many tests and she is set to have scans of her brain and vtial organs today to see any damage from the lack of blood she experienced before delivery.
I feel like we are living in a weird, heartbreaking dream. I keep thanking the Lord that she is alive, but please join with us to pray that her brain and organs are perfect. We believe God has already performed amazing things and know he will hear us and save our precious daughter.
August 2nd at 8:45 pm, 8 lbs 5 oz, 21 1/4 inches.
She desperately needs prayer - please join us in seeking the Lord's healing and protection.
Porter arrived via an emergency C-section after her heart rate dropped in half suddenly. She was not breathing and needed CPR, a breathing tube and many blood transfusions. We almost lost her and are so incredibly thankful to God that she is alive.
However, she is still very much in the woods. She was rushed to the NICU and has been there since the delivery. We have been told there is a long road ahead and have no guarantees - it's hour by hour.
The NICU docs have been running many, many tests and she is set to have scans of her brain and vtial organs today to see any damage from the lack of blood she experienced before delivery.
I feel like we are living in a weird, heartbreaking dream. I keep thanking the Lord that she is alive, but please join with us to pray that her brain and organs are perfect. We believe God has already performed amazing things and know he will hear us and save our precious daughter.
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