Our baby is 6 weeks 5 days old, 6 lbs 20 1/4" long

Gracie seems to be feeling much better today. Praise the Lord. She has great color and is acting like herself;aware, alert,happy, and hungry. We discovered a new bottle/nipple that seems to be working really well so far. She aced her last three feeds, so we have our fingers crossed.Her white blood cell count is finally going down, which means that her body has successfully fought off, whatever it was fighting, most likely a virus. They stopped the anti-biotics (which were precautionary in case of infection).
May 3, 2009
4 days later...Gracie isn't gaining enough weight. So the Dr.'s increased her volume. She is consuming her full volume a couple of times a day but still needs her tube to finish most feedings. Honestly, its frustrating, a week ago she was doing so well and we were days from going home. We have been working on feeds for a month now, so we are forced to consider her options at this point.
The consensus is that babies thrive at home. So, if our goal is to get her home than we have to consider a way to feed her when she gets too tired to eat. We are praying about and considering the GI tube that I mentioned in an earlier post. The reality of a surgery, although small, is a little bit hard to handle, but the benefits seem to far out weigh the risks. The first, being that there has been so much pressure and so much riding on every feed and this would allow her to eat what she can by bottle and tube feed the rest. Secondly, we saw what happened when she got sick and let's face it, we have a 3 year old at home. If she gets sick again, we would be right back in the hospital. So, we will talk to the Dr.'s tomorrow morning and decide with their guidance, what to do. And hopefully come up with a discharge plan.
Please pray that God will give us His peace and that Gracie will gain weight so that we can get her home, where she can thrive.
We are so blessed to have the best friends and family ever! Thank you, Thank you. Just knowing that you are praying is the best gift you can give us.

Sigh.

You know, while living our life this past month has been hard, I can honestly say that I really trust God completely. I trust that He has a purpose and a plan(Jeremiah 29:11) for Josh and I and our kids and I praise Him for it, all of it, even the stuff I don't see yet, especially the stuff I don't see yet.
But trusting doesn't mean I don't still feel it. Because I'm feeling it today. Today was hard and sad, but at the same time I am so grateful that we are here and going through this in an environment where Gracie is safe.
I'm reminded of Joseph in the Old Testament when his brothers threw him in a pit and traded him into slavery. Joseph couldn't see the big picture, but God did. And because of that pit he was able to serve the Lord in an even greater capacity and God used him to eventually save the very brothers that threw him into the pit in the first place.
Joseph's God is my God. He is the same yesterday today and forever(Hebrews 13:8) and I am so grateful for that. And grateful that I can trust Him, whether or not I'm in the pit or out. Regardless of my circumstances He is still God. His gifts and mercies are so far beyond what I can imagine and when I focus on that I find joy. He is the constant, not me, not my circumstances.
Thanks for bearing with me as I blurt out what I've been processing and feeling today. I'm so glad that God shows He cares when it hurts and when its hard. I felt God's arms around me tonight when our friend Julie came to the door with 3 full meals for us this week. Amazing. To be able to sit down with my guys and have a home cooked meal, during my 1 1/2 hour break is wonderful. I also saw God's hand on Gracie today when he gave us the PERFECT nurse, Susan. She was such a wonderful advocate for us and fought for little Grace when she wasn't doing so well. And sure enough her hard work paid off.
After many tests it looks like Grace has an infection. So, she is back on her feeding tube and she has an IV on her head. She was such a trooper through all of her tests. She even looked happy when I was holding her tonight. She is amazing, never seeming to complain even though she has ridiculous hardware attached to her entire body.
Again, there are a million and one things I'm thankful for including the fact that she came down with this infection/virus here and not at home. But that will have to be tomorrow's blog. :)Praise the Lord that we made it through today and I have a beautiful pillow waiting for me. :)

•Jesus loves me•

Jesus loves me
This I know
For the Bible tells me so
Little ones to Him belong
They are weak
But He is strong
Yes Jesus loves me
Yes Jesus loves me
Yes Jesus loves me
The Bible tells me so

April 25, 2009

Psalm 118:24
This is the day the LORD has made;
let us rejoice and be glad in it.

Gracie...oh little Gracie turned 1 month old yesterday and is incredibly alert, wonderfully expressive, and just so sweet. However, when it comes to eating, this 5lb 15oz little bird has good days and bad. Its funny the things we take for granted,like coming out of the womb knowing how to eat. The more I am educated here, the more I am in awe of how we were designed. She has the desire and the know how, she just poops out a little quicker than most and is having a hard time gaining weight because of it. She has had her tube out for 2 days now and I just found out that she is going to get it put back in tonight. I think this is the right thing to do. We'll just back up a little and get her back on a good schedule. Boy, it was nice seeing her pretty little face without that thing for a while. Please pray that she will continue to eat her full volume and gain weight this week.
The doctors have been amazing and very patient, which we have appreciated. However, if she continues to eat as inconsistently as she is right now, we will have to start talking about a GI tube. This would mean surgically putting a tube in her stomach so that we could feed her if she doesn't take her full volume. Everyone would hate to see this, because we've seen her do so well on her good days and know she can do it. It is completely in God's hands and we are ultimately praying for His will, because He knows what is best for her in the long run. So, we will pray in the mean time and just wait and see what she can do.
Thank you so much for your prayers, support, and hot meals. I can't tell you how nice it is for our family to enjoy family dinner with a home cooked meal when we all get home from our very separate days. :)
Gavin is doing great. In fact he and his WONDERFUL Daddy are on their way home from a UCLA scrimmage at the Rose Bowl. They got to go down to the field and mingle with the players. Although, I heard Gavin was much more interested in running around than getting autographs. They got to have some serious male bonding time centered around what else but FOOOOBALL!
Yesterday, I took a much needed break from the hospital and took Gav's on a date. I left Gracie in wonderfully capable hands for the afternoon and we were off to The Discovery Center, just minutes from the hospital. What a cool place! Gavin had a blast running from one science project to the next, exploring, and climbing. It was so much fun to just be with him and feel like is mom again. He now has a year pass and can get one other person in free with him. I think this is going to work out great for anyone who is watching him this year! Yay! Thank you Lord. :)

Happy 1 month birthday Grace!

Two steps forward, one step back

Grace tends to take two steps forward and one step back when we introduce added feeds. Luckily she is remaining organized when she eats, its just her stamina that is lacking today. She is still eating all feeds and has done it without the tube for 48 hours now. However, she is struggling a little here and there getting her volume in and her weight has pretty much stayed the same for 2 days(5 lbs 14 1/2 oz's). This is better than we expected, but when your in it, it is hard to see past a bad feed. ;) We are hoping that all she needs is a couple more days to build stamina and then we can go home. The developmental team was reminding me today, how far she has come in just 3 weeks. It's actually pretty amazing.
I'm glad God is in control and not me, even though I like to think I am sometimes. :)That song "Peace, be still" is playing over and over in my mind.

Easter

Isaiah 40:11
He tends His flock like a shepherd
He gathers the lambs in His arms & carries them close to His heart;
He gently leads those that have young.











I love celebrating Easter each year. It is a day to celebrate what Jesus did for me and I always look forward to church, family, and of course the Easter egg hunt. However, Easter this year was one of the hardest days for me since we've been at the hospital. There is something so unnatural about having a baby and not being able to bring her with you wherever you go. It didn't matter where we were and who we were with I couldn't stop crying. I felt like I was in a movie montage where everywhere I looked there were family's with little babies or moms and daughters. I felt so sorry for myself. The only place I felt normal that day was in the hospital, where Gracie could be with us.
This was the first time Gavin got to visit Gracie and he loved it. We did an Easter egg hunt in her room and now every time he visits he asks where the candy is. :) He is seriously the most precious child and I can't believe how well he is doing with his mommy being gone most of the time. The nurses where so amazing to let our family's from both sides come visit (I wish I had a picture of the Young's). Gracie loved getting passed around. How cute is she in her little Easter dress?
God is so good and so faithful to get us through the good days and the tough days. He is so gentle and so compassionate with us. I felt His arms that day.

4-20-09

Well, as of this morning Gracie has eaten every feed by bottle or breastfeeding for 48 hours now!!! WHooohhooo. She is just getting stronger and stronger and her endurance is getting better. Last week, the doctors wanted us to fortify her breast milk with formula to bump her up in calories and since then, she has been gaining wait at a better rate. She is now 5 lbs 13oz. She will be 4 weeks old tomorrow and 1 month old on the 24th. She is growing up before our eyes, and we are having so much fun with each little new thing she does. She loves to pucker her lips when she goes potty...hysterical and loves when daddy is around to play fun games with her. She smiles all the time in her sleep, and its just precious.
One thing to pray for...
Twice this week she has had little moments, while sleeping, where she tends to lose color. We are praying that we can get this figured out before we leave the hospital for peace of mind. We are praying to go home, but also praying for God's timing because when we go home we would love to stay there and not have to come back. :)
Josh and I are taking an infant CPR class this morning...one of the many things on a checklist we want to accomplish before going home.

Gavin, is having a blast with Mimi, while Josh is back to work. THANK YOU MIMI!! Nana and Poppy have been helping out on the nights and weekends, and came with Patsy and Carol Fleetwood this week to clean my house and do laundry! Amazing gift!!
Thank you again for your love and prayers! We have SO much to be grateful for.

She's growing!

Grace is now 5 pounds 7 ounces,and gained her weight back by the 2 week mark, which is awesome. Her feedings are getting better and we are just praying that she will be consistent enough to get her off of the feeding.tube, so we can go home!

Gavin & Grace update

We are happy to finally give you an update on our kids. Gavin is doing great. He has almost fully recovered from his bout of Rotavirus and is back to his energetic self again. He was released from the hospital Sunday night and is loving being home with dad. Phewwww!! One down, one to go! :)
Our sweet little Gracie is still in the NICU and celebrated her 2 week old birthday on Tuesday! Tuesday night also came with some tough news. Grace's Dr. informed us that Grace has a slight addition to one of her chromosomes (one of the pair). This is so rare, that they aren't sure exactly how it is going to impact her developmentally. It might manifest in some delayed development as she grows. The good news is her development so far is wonderfully normal except that she is having a little bit of trouble eating. This could be and probably is in part to the small, soft pallet cleft in the back of her mouth. The doctors are optimistic to the point of saying that there could be people walking around with this chromosome issue and not even know it. However, we have no idea what to expect. We will take it a day at a time and just pray over each stage of development for our sweet girl. She hasn't shown any signs of seizures this week, however they have decided to send her home on anti-seizure medication that they are hoping to wean her off of in 6-8 weeks. The initial episode and subsequent seizures are now thought to be the result of Rotavirus combined with inefficient feeding. Yah...how rare is that? But, the jury is still out.
Please continue to pray for Gracie. We are hoping to get her home as soon as possible, but of course, we need her to be eating well at every feeding.
We have confident expectation and active hope in the Lord that He will provide our every need. Knowing that He chose us for each other and that He made little Gracie exactly the way she is and that He loves her and wants what is best for her.
Isaiah 40:11
He tends His flock like a shepherd
He gathers the lambs in His arms & carries them close to His heart;
He gently leads those that have young.

Thank you for all of your wonderful prayers, kind emails, letters, flowers, and phone calls. We feel so loved and so blessed to have such great support.

Our Crazy Week!

When you pass through the waters, I will be with you;
and through the rivers, they shall not overflow you.
When you walk through the fire, you shall not be
burned, nor shall the flame scorch you.
Isaiah 43:2






These are the emails my Father-in-law so beautifully composed and instead of rewriting, I am posting what he wrote.
Here is the story of our CRAZY WEEK...

4.03.09

Hello All,

For those of you who are personally and by virtue of geography, in touch with us daily, some of this is “old news”. For the rest of you, an update is overdue, but to relieve any anxiety now, I’ll jump to the end and let you know that all of the solid facts we have are good news. So on with the story….

We started with this announcement sent out late Tuesday night, March24th.

Hello All,

Patsy and I are so proud to announce the arrival of their first grand-daughter, the wonderful, beautiful, healthy, and strong, Grace Young. No middle name yet. Shelly and Josh, also doing wonderfully, delivered Grace today, 3.24.09, at around 7:30PM. She is all of 5 pounds soaking wet, 18 inches tall, full of vim and vigor, has blue eyes and is very likely blonde, though there sure isn’t much hair to go by yet. Easy bet though, huh? Josh and Shelly are looking forward to introducing Grace to her own, darling little nursery, and to her big brother Gavin, tomorrow evening. Let the spoiling begin!!

Love, Guy and Patsy

Shelly and Gavin ended up returning home the afternoon of the 26th. Grace, now with the beautiful middle name of Lily, was doing very well by all indications. She seemed to be eating fine, and all exits were functioning wonderfully. There was a bit of debate about whether or not she was premature, because of her weight, but data was good to indicate she went full term. That question still remains.

Everything seemed to be going well for the family, except for that zombie feeling we all get when night time sleep hours are diminished to that of an owl. Now picture this…on March 31st, I (Guy) was heading towards Josh and Shelly’s from the office with two gifts for Grace and a paycheck for Josh. Grace had been home only 5 days. Down the street in their front yard I can see some activity going on and the first thought was that they had company. A few seconds later I notice the fire truck and paramedics. Just a few minutes before, Grace experimented with the notion of trying things without air for 60 seconds or so. Fortunately she was in Shelly’s hands at the time so Grace’s new game was noticed immediately. Josh, Shelly’s mother, Debbie, and friend, Chrissy, were all home. They called 911, and brought Gavin to the back yard to play and avoid upsetting him. The medics arrived in minutes and jointly, they all decided to take Grace to St. Joseph’s Hospital in Orange. The following morning Grace was taken across the street to CHOC, one of the best children’s hospitals in the nation.

The testing began – and test after test after test has been performed. There were several things of great concern initially. All of those, save one, have been fairly well resolved, or will be fairly easily resolved a bit down the road. The remaining concern is one of unexplained, but mild, seizures. Thankfully they have ruled out the brain as being the cause. All of the neurological tests have come back negative. It seems that there is just one thing now that needs to happen before they will release Grace. Gracie must be able to comfortably nurse/bottle feed without building up such a sweat. Currently, she burns more calories nursing than she is taking in. Otherwise, Grace is looking so sweet and tender and happy and comfy, but it breaks our hearts to see her in the hospital and not home where she belongs. Many more test results have yet to come in and be interpreted, as much still remains unknown, about the seizures in particular.

Now the rest of the story… Of course Tuesday night J&S got little to no sleep at the hospital. Gavin stayed with Debbie and Jeff. Wednesday night J&S decided to sleep at home with Gavin. Gavin decided to get the flu, in part to let it be known that his main exit also worked well and that his main entry worked well, even in reverse. For a second consecutive night J&S found very little shut eye. Gavin spent all day Thursday with Patsy at our house, but only improved a bit. Last night, Gavin did pretty darn good, only providing minimal excitement for Patsy and I with one very impressive regurgitation. Today his temperature picked up in spite of the meds, Josh came to our house from CHOC, spent some time with Gavin as we tried to get his temp down with only marginal success. Around 2:20PM, Josh left to CHOC with Gavin on the way to their ER! So the family is together again! We were most concerned about Gavin dehydrating, hence the trip to CHOC. As of now, around 5:30PM, Gavin has an ER room with an IV hooked up and blood work beginning to help figure things out.

First, as a family we want to express our gratitude for all of those lifting our family up in prayer. At least 6 churches, another 6 or more home study groups, and hundreds of family and friends have been praying for the J&S Young family. The results of that, along with a great hospital and staff for which we are also very thankful, are the test results we hoped for Grace, and a dad and mom staying strong, calm, and impressively in control through maybe the most difficult time of their young lives. All we ask is that the prayers continue. With that first, and also with the dedicated work of the fantastic doctors caring for Grace, they will all soon return home together, as Gavin puts it, as a “new family”.

We thank you all again and will update you as more solid information comes in.

Love,

Guy, Patsy, Ryan, Sean, Josh, Shelly, Gavin and the lovely and wonderful Grace.

************************************************************************************
Saturday, 4-4-09
We are still at the hospital.
My children are now on the 2nd and 4th floor, but thankfully we are all under the same roof...it just happens to be a hospital roof! :)
Gavin has now spent 2 nights here and will hopefully be released tomorrow. He was doing much better tonight. Thank you Lord!
It looks like Gracie will most likely be here well into next week. We are just praying that we can get this feeding thing under control. Praise the Lord that this is all we have to deal with. We are surrounded by families that have much harder circumstances and have had devastating news and our hearts are broken for them. At the same time we are so grateful for God's grace towards our family.
God created Gracie exactly the way she was meant to be, perfectly, according to His will. We are just learning how to be her parents. It is our absolute pleasure being these kids parents. We are so grateful for our little family, so grateful that we have each other, and so grateful that we have Jesus. He is our rock.