Tuesday, September 21, 2010

Surgery was a success!

Yeah! No more tubes ... now we need to heal!

She was a trooper with the IV board on her arm.

Pooped and ready to get back home!

Let's get that tube out!

Hi everyone - we are about to pack up and head back to Medical City Children's to have PK's dialysis catheter removed! The surgery is at 1:30 pm today, so we'd really appreciate your prayers! See James' email update below. Much love, Sarah

----- 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,

6 weeks old!

Here's our long girl (already wearing 3-6 month clothes!) at 6 weeks old. Hopefully that catheter will be outta there soon!

5 week update

Although we're pretty sleep deprived around here, I can't seem to relax. Too much excitement that our family is all under one roof.

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,

Monday, September 6, 2010

5 weeks ago we saw this ...

And now we see this!

"The Lord will sustain [her] on her sickbed and restore [her] from her bed of illness." - Psalm 41:3

Friday, September 3, 2010

Porter's Prayer Chain

Some of you know that we've been walking this road with our dear friends Michael and Amber Volbeda. Their son was born 8 weeks early on the same day we had PK. They have been an immense source of strength and encouragement - sort of a NICU group therapy if you will ;-)

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 ; Sarah 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...


P.S. When do I get to meet Larry the dog?

We're home!

Many of you heard the news earlier this week ... Porter Kate Lary is home in the Lary house with all the Larys even Larry the dog!

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,