Friday, December 3, 2010
Christmas Time is Here!
We are constantly reminded by this sweet face that we received our own Christmas miracle!
James' last email (yes, one month ago! I am not a good blogger) is below. Merry Christmas!
It has been awhile so this one is long...
Two weeks ago our little girl turned 3 months old and she is doing great. Miraculous. Going back and reading my own updates from August and September, it is hard to believe how far we have come in such a short amount of time. It seemed like each day was an eternity with the proverbial fire hose of medical information showering us as we monitored various levels and our heart raced at each of her movements. The anticipation of reading the daily creatinine level with my heart beating out of my chest. The consistent support we received from each of our friends and family. The fervent and sincere prayers of so many, answered by a merciful God who we give all the glory to. So many times Sarah and I look at each other and just say how blessed we are.
Now, Sarah and I are forever changed parents, living a life of pseudo-normalcy with our healthy 3 month old daughter and our healthy 3 year old son. We refer to PK as our miracle child and often share her story. Everyone we come in contact with in from the medical and developmental fields are shocked at how wonderful she is doing. Sarah went and visited the Presby NICU the other day. They were so happy to see PK. The nurse manager was in tears and told Sarah that they didn't know if PK was going to make it, but because we were so positive, they were positive. Your support kept us positive. I am melodramatic and in the fraud investigations business so I often see things through negative eyes. But throughout all of this, I felt a peace like I had never felt before. I knew God would heal our baby.
Below is the latest, so some of this may be duplicate if you have received a couple of Sarah's updates.
Overall: PK is a super smiley baby who loves her daddy. She also loves to watch whatever Luke is doing whatever it is 3 year old boys do. Sarah loves the fact that when she asks PK, "Do you want to go Neiman Marcus?", she gets a big smile every time and I get heartburn. She is vocal, just like her father, mother, and brother (she never had a chance). She is in the 90th percentile in height and weight, and because of her constant need for milk, she doesn't sleep through the night yet, and I stress "yet".
Kidneys: As of my last update, the dialysis catheter has been removed and PK will forever be reminded of her start in life by the two scars to the right of her belly button. On August 19th, I added the prayer request that her creatinine level would drop to .4. At that time, her level was at 1.6 and had dropped from 5.3 and I even put the comment that a little higher would be fine as I knew it was a long shot. Well, her most recent blood test returned a creatinine level of .36. Yes!!! Within the range of a normal baby. Our nephrologist guesstimated that her kidney function was at around 70% and would continue improve. Score one more miracle for God.
Brain: In my last update the neurologist was pleased with her progress and we were going to stay on the seizure medication and have another EEG in 5-6 weeks. Well, 5-6 weeks past and the EEG came back completely normal with no signs of seizure activity. We are now in the last week of weaning her off the medication as people can experience some withdrawal if you cut off the medication cold turkey. The neurologist was very excited and said that we do not need to see him again. It is not everyday that these guys get to deliver good news like this. Also, a representative from early childhood intervention (ECI) came over and spent some time with Sarah and PK. Due to her traumatic start she had an automatic referral for ECI to track her progress. She told Sarah and we don't even qualify for a full analysis and that PK was hitting some 4 month milestones.
For anyone who ever questioned whether or not prayers get answered, I ask that you go back and read our story (http://porterkate.blogspot.com/). This was not a series of random acts or doctors and nurses doing their job (although they performed admirably). Ask anyone who was in the operating room at delivery or in the NICU those first 72 hours what they thought PK would be like at 3 months and her progress would not be on their radar. GOD DID THIS. Your prayers were answered.
I do apologize for the communication hiatus. I hadn't been this professionally unproductive since the Internet bust of 2001 so I needed to get back to work in October and November.
P.S. Through Sarah's work with Gail Davis (free plug - http://www.gdaspotlight.com/), she has become friends with a great man named Nando Parrado. Nando is most famous for climbing out of the Andes mountains after his rugby team's plane crashed. He wrote a book called "Miracle in the Andes " and in the 90s they made a movie out of his story called "Alive". Sarah saw him at an event a few weeks ago and was reminded that when the plane crashed, Nando had a massive head injury and the other survivors thought he was going to die, so they left him outside of the plane. Three days later, he was beginning to show signs of life and it's since been attributed to his being left outside in the freezing cold. Three days. The same amount of time PK was under induced hypothermia. Gave me chills when Sarah told me that.
Tuesday, September 21, 2010
Surgery was a success!
Let's get that tube out!
----- Forwarded Message ----
From: James Lary
Sent: Thu, September 16, 2010 12:18:39 PM
Subject: [TNS@FBD] Porter Kate Lary - Update 9/15/10
Hello All,
PK continues to grow bigger and stronger with each day. I have attached a picture that Sarah took yesterday. She is so beautiful and we are so blessed with her progress (you can also see how long the catheter is).
Your prayers are needed once again as the surgery to remove the dialysis catheter is scheduled tomorrow, Friday at 1:30PM. Although, this is typically an outpatient surgery, because she is so young and small, she will have to spend the night at the hospital in the ICU once again. We are so happy to get the cetheter out, but it is still scary to have your 6 1/2 week old go under anesthetia for surgery. God's hands have been surrounded her this far and our prayer is that the surgery is a success.
We went to the neurologist this morning and he was pleased with her progress. She will stay on the seizure medication and do another EEG in 5-6 weeks. He wants her to continue to grow and gain weight before taking her off the medication. We are fine with prevention. We go to the nephrologist this afternoon, and anticipate a good report.
The Prayers:
1. Pray for the surgery on Friday. Pray that there are no complications and that her reovery is quick and smooth.
2. Pray for widsom and accuracy for the surgeon operating on such a small body
3. Pray that her kidney function stays the same or even improves
4. Pray that her potassium level stays at normal level.
5. Pray that the seizures continue to stay away and that we can be off the seizure medicine soon.
6. Pray that Porter has the strength and determination only God can give to keep improving.
God Bless,
James
http://porterkate.blogspot.com/
6 weeks old!
5 week update
The little miss has been working her daddy pretty good. He can't seem to put her down and they are having a love-fest. Thankfully, James been on parental leave since we brought her home. The not so good news is that he
goes back to work on Monday. I think the kids and I are going to have some major withdrawal.
I wanted to share a couple of big moments from the last 24 hours:
1. Both kids are sound asleep in their own beds right now ... napping at the same time. We are truly enjoying the little things these days. I want to cuddle up next to both of them. I never thought I'd be so thankful to have kids in both beds. Before all this happened I took for granted that it would just be that way - thank you, Lord, for restoring that to us!
2. The best moment of the last 24 hours ... drum roll ... the nephrologist called and PK's levels have improved so much that we doing a consult with the surgeon on Monday to plan for removing the dialysis catheter! When the surgeon's scheduler called us back yesterday she said the doctor said, "She's already home?" Needless to say, miracles continue to abound.
James' email from earlier this week is below as well as a couple of specific prayer requests. Thank you again for your love and support. We continue to be amazed by the power of prayer and the gift of friendship. She's getting there and we know each of your prayers are a part of her recovery. - Sarah
p.s. I know you all love pictures ... good thing one of her grandmother's is a photographer. I have a feeling she'll be working her, too. ;-) Another one is attached.
From: James Lary
Sent: Mon, September 6, 2010 11:46:47 PM
Subject: [TNS@FBD] Re: Porter Kate Lary - Update Monday
Five weeks!! Five weeks? That is all? Before this, five weeks didn't seem like a long time. Now, five weeks feels like an eternity. It is funny how slowly time goes when you are taking everything one day at a time. Oh, and being home with your baby is a million times better than leaving her at the NICU each night.
Sarah posted a picture of PK on the blog (http://porterkate.blogspot.com) of what she looked like hypothermic and hooked up to the machines. An unbelievable site. We continued to be blessed by her progress. We didn't get a call on her labs last week, which is good, so the hope is that we won't get a call on her labs tomorrow. We see the nephrologist and do another EEG with the neurologist a week from Thursday. We pray that those two appointments go well.
At home we have been working on our schedule of bottle and breast feeds, while taking into account Luke's schedule and our sleep. We have been diligently tracking her input in milliliters via bottle or minutes nursing and tracking her output by continuing to weigh each diaper. Because of the kidney issues, we need to make sure her input is greater than her output. Sarah and her mother were laughing at me because I went to Kinkos and had a spiral bound booklet made of a spreadsheet I created to track all of our info. What can I say, I am a tad ocd.
Also, if you have not already done so, please remember to send a note to porterkatelary@yahoo.com with your location. If you missed this email because you thought it was duplicate, this was set up by friends of ours who thought it would be fun to get the numerous locations of the people who have been praying for Porter. We know that Porter would not be where she is today without the prayers of so many, and this is a fun to way see just how widespread the network of people is, who have been praying for Porter.
The Prayers:
1. Pray that her potassium level stays at normal level.
2. Pray that her kidneys continue to improve dropping the creatinine level
3. Pray that her input continues to be greater than her output, showing
4. Pray that dialysis is not needed and the dialysis catheter can be removed.
5. Pray that the seizures were an isolated incident and do not return.
6. Pray that Porter has the strength and determination only God can give to keep improving.
God Bless,
James
http://porterkate.blogspot.com
Monday, September 6, 2010
5 weeks ago we saw this ...
Friday, September 3, 2010
Porter's Prayer Chain
The Volbedas came up with this great idea to track just how far reaching our prayer warrior list is for Porter. They created the email address (and the hilarious email below) and want people to email their location to the email address.
The final product of what to do with these emails is still being formulated, but it will be some sort of map showing how far and wide people have been praying for Porter. Also, we will happily share your emails with PK at some point in her life so she can know how many people prayed for her at the beginning of her life. What an incredible testimony she will have.
Please forward this email on to anyone you have shared our story with or you know who has prayed for Porter and continues to pray for her.
James and Sarah
----- Forwarded Message ----
From: Porter kate Lary
To: James Lary
Sent: Tue, August 31, 2010 11:23:34 AM
Subject: hi!
Hi Mom and Dad,
Greetings from the NICU. Did you know they have wi-fi in here? I get great reception even from my bed. And this email thing is so cool. It's my first time trying it. I already type like 40 words per minute. The nurses are saying I'm like a child prodigy or something. I don't know what that means because I don't talk yet but after I write this, I'm going to google it and find out.
Can you ask all my friends who are praying for me to send me an email with their location so I can keep track of them all? Yahoo Mail has unlimited storage which is good because I think I'm about to get a TON of messages in my inbox. Thanks for your help!
You are doing such a great job taking care of me. I love you.
See you at my next feeding...
Love,
PK
porterkatelary@yahoo.com
P.S. When do I get to meet Larry the dog?
We're home!
There's only one word to describe how we feel - thankful. Thankful our daughter is alive and getting better each day. Thankful for our family and friends. Thankful for the incredible number of prayers that continue to be lifted up. And most of all, thankful to the Lord for hearing us.
Since coming home, we've seen the pediatrician, who was amazed to see how great she's doing after reading the hospital notes ... miracle baby is now a medically appropriate term ;-), and she's also given blood for more lab work to track her progress. We get more blood work done on Tuesday and start to see the list of doctors (neurologist, nephrologist, developmental ... the list is long) on a regular basis. We are praying that her results continue to come back improved so we get one step closer to getting her dialysis catheter removed. As some very wise moms who've walked this road reminded me, we're taking it one day at a time and that's fine by us!
There have definitely been moments over the last month where I've said why me, but as we discussed with some close friends recently, why not us? We know that God is at work and we're trying to embrace every chance to learn and love along the way. And speaking of loving, special pic attached.
Thanks for walking this road with us and continuing to pray for PK. - Sarah
[James' update below]
Porter Kate is home!! Praise God!! All of our prayers continued to be answered as yesterday morning her potassium level dropped 1.1 to 4.5 without any intervention other than the Divine kind. Additionally, her creatinine level dropped to .7, the lowest we have seen. Honestly, I didn't think we would go home yesterday because I thought they would want to watch her at least one day longer. I was dressed for work. The nephrologist looked at the numbers, looked at me and asked if I was ready to bring her home. Sarah was a few minutes behind me so I let him tell her instead of ruining the surprise. She was elated. All of the nurses asked what the doctors did differently and we told them, the doctors did nothing different but we believed it was our prayers and the prayers of our friends and family.
What a great day but it was a long day. We received word at 8:30AM that we would be going home, but we didn't get home until after 4PM. The nurse had to make sure we knew how to dose the medication, we had to meet with a nutritionist, and the neonatologist put the fear of God in us about her eating enough because of her decreased kidney function. But the day leaving the NICU, not much bothers you. Not even the alarm company calling me to let me know my alarm was going off (false alarm). Luke was so excited to get to help me carry PK out of the hospital. Tears filled my eyes to see my family together as we headed home.
The first night home was not bad. She has the eating thing down, so I guess that is the difference between bringing a four week home versus a four day old. But I am pretty sure the night nurses would party with her because she did not want to go to bed until closer to midnight. We have to give her at least four bottles a day fortifying the milk Sarah produces, which is fine because we also have to give her medicine three different times a day and it is easier to mix it in the bottle. So, we have to work out our schedule, all things parents who bring home a baby have to do. It is nice to once again do things a normal family has to do.
We are out of the NICU, but there is still a good deal of follow up. Over the next two weeks, we have 3 doctors appointments and have to check her blood levels 3 times. PK is also coming home with the dialysis tube coming out of her abdomen, which is not only a possible infection point, but a reminder that she has not healed enough to be sure it can be removed. Upon discharge we asked for a copy of the discharge summary, which basically has notable doctor's notes beginning the day she was born including the Presby neonatologists summary of her delivery. Shocking to see it written down from his point of view. I have said it before, but she is a miracle baby.
I will update you with any information we get regarding blood work, EEGs, and nephrology appointments. We have leaned so heavily on you for your prayers and could not have gotten this far without them.
The Prayers:
1. Pray that her potassium level stays at normal level.
2. Pray that her kidneys continue to improve dropping the creatinine level
3. Pray that dialysis is not needed and the dialysis catheter can be removed.
4. Pray that the seizures were an isolated incident and do not return.
5. Pray that Porter has the strength and determination only God can give to keep improving.
God Bless,
James
Thursday, August 26, 2010
August 26 - Praise for .9!
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.
Monday, August 23, 2010
August 23 - 3 weeks old!
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
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
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
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 weeks old
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
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
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
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
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
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
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
August 8 - Improving
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
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
August 6 - Seizures
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
August 5 - Bringing her out of hypothermia
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
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
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
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.