Thursday, January 29, 2009
Tuesday, January 27, 2009
Perspective
I started writing this 2 days ago so the info is a lil outdated but I still wanted to post it. :)
Today was a really hard day. Again. Wow, that must be getting old to hear!
After another SUPER emotional appointment with the physical and occupational therapists today, I learned something that was very hard to hear and totally broke my heart. I lost it in front of the ladies and I'm sure they think I'm just a basketcase. Anyway, we are trying to train Noah to suck and swallow (as I posted yesterday). And eventhough his suck is strong and technique is perfect, he has lots of trouble swallowing.
The therapists told me that after talking to Dr. Perkins, we found that there is a physiological reason Noah is having trouble keeping up with the flow of milk (from breast or bottle, or syringe, it's still all too fast). Most babies have pockets in the back of their throat that pool the liquid until the baby is able to swallow, making it so they don't drink too much too fast and choke, or have the milk go down the wrong pipe. But because of Noah's cysts, he doesn't have the pockets and therefore the milk can't pool back there, it just goes straight down.
The therapists then told me that Noah will have to go home with his feeding tube.
He may be able to breastfeed eventually, or drink from a regular baby bottle would even be nice. Dr. Perkins continues to emphasize that as Noah gets bigger, his trachea will get bigger and the cysts won't (shouldn't), making this whole process easier. But for now, we will learn how to work with the stupid feeding tube so we can deal with it at home.
At this point I was just so pissed that my experience with Noah will be different than mine with Ella's. But then God introduced me to a new family (we moved rooms again). The young couple have a BEAUTIFUL (and I don't say that about all babies lol, this little girl has the most beautiful eyes you've ever seen) daughter who had a totally normal gestation & pregnancy, but when she was born they discovered her vocal chords are paralyzed. With this comes other upper respiratory problems, so she too has a feeding tube; but in addition to that she had a tracheotomy and will later this week have to be fed through her stomach.
And she can't cry.
And they've been at the hospital since her birth on December 1st, and can't go home until they are designated a home nurse to care for her.
I know God used this family to help show me how simple Noah's medical needs are, and God willing, how short-term ours are! It will be tricky at first getting down the routine of his feeds and his time at the breast, and his time on the binky-trainer (keeping him slowly working on oral feeds so he doesn't lose his skills). I am SO blessed by this family.
Lord, thank you for using other people's lives and stories to keep us in check! What we are dealing with Noah is so simple, and we're going to figure it out! He is going to grow strong in to a normal, healthy boy, an amazing athlete (according to Daddy, hehe), and most importantly a strong man of God with a testimony of miracles!
Today was a really hard day. Again. Wow, that must be getting old to hear!
After another SUPER emotional appointment with the physical and occupational therapists today, I learned something that was very hard to hear and totally broke my heart. I lost it in front of the ladies and I'm sure they think I'm just a basketcase. Anyway, we are trying to train Noah to suck and swallow (as I posted yesterday). And eventhough his suck is strong and technique is perfect, he has lots of trouble swallowing.
The therapists told me that after talking to Dr. Perkins, we found that there is a physiological reason Noah is having trouble keeping up with the flow of milk (from breast or bottle, or syringe, it's still all too fast). Most babies have pockets in the back of their throat that pool the liquid until the baby is able to swallow, making it so they don't drink too much too fast and choke, or have the milk go down the wrong pipe. But because of Noah's cysts, he doesn't have the pockets and therefore the milk can't pool back there, it just goes straight down.
The therapists then told me that Noah will have to go home with his feeding tube.
He may be able to breastfeed eventually, or drink from a regular baby bottle would even be nice. Dr. Perkins continues to emphasize that as Noah gets bigger, his trachea will get bigger and the cysts won't (shouldn't), making this whole process easier. But for now, we will learn how to work with the stupid feeding tube so we can deal with it at home.
At this point I was just so pissed that my experience with Noah will be different than mine with Ella's. But then God introduced me to a new family (we moved rooms again). The young couple have a BEAUTIFUL (and I don't say that about all babies lol, this little girl has the most beautiful eyes you've ever seen) daughter who had a totally normal gestation & pregnancy, but when she was born they discovered her vocal chords are paralyzed. With this comes other upper respiratory problems, so she too has a feeding tube; but in addition to that she had a tracheotomy and will later this week have to be fed through her stomach.
And she can't cry.
And they've been at the hospital since her birth on December 1st, and can't go home until they are designated a home nurse to care for her.
I know God used this family to help show me how simple Noah's medical needs are, and God willing, how short-term ours are! It will be tricky at first getting down the routine of his feeds and his time at the breast, and his time on the binky-trainer (keeping him slowly working on oral feeds so he doesn't lose his skills). I am SO blessed by this family.
Lord, thank you for using other people's lives and stories to keep us in check! What we are dealing with Noah is so simple, and we're going to figure it out! He is going to grow strong in to a normal, healthy boy, an amazing athlete (according to Daddy, hehe), and most importantly a strong man of God with a testimony of miracles!
Monday, January 26, 2009
Prayer Needs
I'm waiting for Noah to wake up so I don't have a ton of time but I just wanted to post current prayer requests that we have.
1. It looks like Noah's cyst has grown a bit in the last week. The cystic pocket that they drained on his left side hasn't filled up again, which is awesome, but the pockets on the other side seem more pronounced and lobular (sp?) than last week (when it just looked like an enormous double chin). As were the prayers during my entire pregnancy, please continue to pray for the growth to completely stop growing, and shrink up all together.
2. Hopefully this isn't too much TMI-- sorry if it is, but, oh well! Noah is slowly learning how to breastfeed. He's been getting a little bit of stryder (heavier, wheezy {is that a word?} breathing) when he tries breathing and swallowing at the same time. He's got a great suck and great technique according to the lactation and physical therapy people, but just still learning the coordination of it all. Pray that he's able to learn this as soon as possible; at this point this is the only big thing that is keeping us in the hospital (he is under phototherapy lights though; his bilirubin levels were borderline and since he's been pretty sleepy I just asked for them to put the lights on him. It's not like the levels are dangerous though).
3. He's definitely been favoring laying on his right side (the side with the lymphangioma), I think because he has more trouble breathing when he lays on the other side because of the pressure of the mass. It's hard because I want him to be comfortable, but I don't want him to only lay on that one side and then have his muscles tighten up over time on the other side, or even compromise the shape of his head because he's not spending equal amounts of time on all sides. Please pray that he is able to switch positions more often with less stress on his airway, which will hopefully prevent more potential long-term issues.
I'm a little sad today, but God continues to give me little rays of hope with the sadness. I've been able to chat a little with one of the other NICU moms, who has just been so sweet. She went to the store (I still can't drive until next week) for me and bought me some Dreft to wash Noah's clothes, along with a super-soft little blanket for him. She's been in the NICU with her sweet daughter Sophia for 6 weeks now, who was pre-mature and born without a right hand. Lord, I am so grateful for positive people like her, but also for the reminders that things could be much worse... we have been given such a gift, a MIRACLE, with this little man!
1. It looks like Noah's cyst has grown a bit in the last week. The cystic pocket that they drained on his left side hasn't filled up again, which is awesome, but the pockets on the other side seem more pronounced and lobular (sp?) than last week (when it just looked like an enormous double chin). As were the prayers during my entire pregnancy, please continue to pray for the growth to completely stop growing, and shrink up all together.
2. Hopefully this isn't too much TMI-- sorry if it is, but, oh well! Noah is slowly learning how to breastfeed. He's been getting a little bit of stryder (heavier, wheezy {is that a word?} breathing) when he tries breathing and swallowing at the same time. He's got a great suck and great technique according to the lactation and physical therapy people, but just still learning the coordination of it all. Pray that he's able to learn this as soon as possible; at this point this is the only big thing that is keeping us in the hospital (he is under phototherapy lights though; his bilirubin levels were borderline and since he's been pretty sleepy I just asked for them to put the lights on him. It's not like the levels are dangerous though).
3. He's definitely been favoring laying on his right side (the side with the lymphangioma), I think because he has more trouble breathing when he lays on the other side because of the pressure of the mass. It's hard because I want him to be comfortable, but I don't want him to only lay on that one side and then have his muscles tighten up over time on the other side, or even compromise the shape of his head because he's not spending equal amounts of time on all sides. Please pray that he is able to switch positions more often with less stress on his airway, which will hopefully prevent more potential long-term issues.
I'm a little sad today, but God continues to give me little rays of hope with the sadness. I've been able to chat a little with one of the other NICU moms, who has just been so sweet. She went to the store (I still can't drive until next week) for me and bought me some Dreft to wash Noah's clothes, along with a super-soft little blanket for him. She's been in the NICU with her sweet daughter Sophia for 6 weeks now, who was pre-mature and born without a right hand. Lord, I am so grateful for positive people like her, but also for the reminders that things could be much worse... we have been given such a gift, a MIRACLE, with this little man!
Saturday, January 24, 2009
It's me!
Hi everybody!
For the first time I have access (and time) to hop on a computer! I just realized that we don't have any good pictures of Noah's face on here, ridiculous! I don't want anyone to think that we aren't posting pics of his face on purpose; he is absolutely beautiful cyst and all. He looks so much like Ella, and he finally opened his eyes up big enough today for us to see that they're blue! Who knows if they'll stay or not but it was so awesome just to see his eyes. God knew I really needed that today...
I'll write more later this week, Kyle is taking Ella back home Wenatchee because Lindy (Kyle's mom) is going to take care of Ella this week, and I will be staying at Children's by myself with Noah for the remainder of his time at Children's (hopefully just this next week, maybe sooner)! So I will have more time to post pics, updates, etc.
I don't know how to express my gratitude for everyone's prayers, concerns, offers to help and support... God has answered EVERY prayer for Noah thus far, it is absolutely a miracle, and only because of Him. So many times in my life I have doubted the Lord, who He is, what He has done, and I have asked him to help me in my disbelief, remove all doubt, etc... but I can now say I have SEEN his miracles. He has made himself and his sovereignty, His power, His perfect plan known!
I just realized I haven't taken any pictures since they drained the one pocket OR taken his tube out, so I will fo sho take more pics tomorrow because now he looks so much less puffy, his lymphangioma pocket is drained, and his breathing tube is gone. Can't wait to reconnect with all of you.
xoxo
Andie
Friday, January 23, 2009
Extubation
Noah had his breathng tube removed today and he's doing great!
Here is a text from Andie:
"Got a late start, went in to remove tube at 1pm. God is so good and loves Noah so much! My baby is going to be OK, praise our Almighty healer :-) "
Awesome!!
Beckie
Here is a text from Andie:
"Got a late start, went in to remove tube at 1pm. God is so good and loves Noah so much! My baby is going to be OK, praise our Almighty healer :-) "
Awesome!!
Beckie
A huge Thank You from the Johnson Family!!
Andie and Kyle are so overwhelmed with grattitude for the prayers and support and gifts from everyone! They feel so blessed to have such amazing friends. Andie and Kyle wanted to thank her Dad and Tracy, Steve and Barb, Paul and Bre, Donna and Granny for all the beautiful flowers and cards.
You have really touched them,
Beckie
You have really touched them,
Beckie
Thursday, January 22, 2009
More good news
The good news just keeping pouring in. I am in awe of how our Lord works. He has definitely revealed Himself to all of us through Noah. Andie texted me to say that Noah had his MRI today and it showed that the mass is in no way compressing his airway. That said, they are taking his tube out tomorrow!! They are well on their way home at this rate.
I am thinking that Andie may not have to stay at children's very long at all, but if you would like to help them out in any way, email me at: graingersix@gmail.com
I am thinking that even if Andie gets to go home soon, it might be nice for them to not have to worry about dinners and such. I will find out what their immediate needs are and let you all know. Thank You for blessing this wonderful family with your prayers and support!
Blessings,
Beckie
I am thinking that Andie may not have to stay at children's very long at all, but if you would like to help them out in any way, email me at: graingersix@gmail.com
I am thinking that even if Andie gets to go home soon, it might be nice for them to not have to worry about dinners and such. I will find out what their immediate needs are and let you all know. Thank You for blessing this wonderful family with your prayers and support!
Blessings,
Beckie
Getting to know little Noah
I have been able to message back and forth a bit with Andie's dad's wife, Tracy. Here is a message she sent me yesterday after she visited with Kyle, Andie and Noah. (copied and pasted with Tracy's permission).
"He sleeps very comfortably and peacefully in a toasty little bed with wires and gadgets galore. His nurses are wonderful and very sweet. The hospital he is in is AMAZING! It is bright and cheery and colorful... we felt like we were in Disneyland. Noah has a head of thick brown hair that is like half an inch long. He has long, long fingers and chubby little toes. His skin is perfect, he is pink and robust. He has not one bit of jaundice. His wee eyes are pinched closed so we don't know yet what color they are, but I believe he looks very, very much like Miss Ella. His bump doesn't look nearly as scary as it sounds; he looks like he just has a plump little neck, like a football lineman! It's pink like the rest of his skin, with no mottling or bruising at all. The position of the mass causes Noah to look upward a bit, but he really does rest quite comfortably on his side. Today we made a discovery: Noah has a pinched little Ella-ear! It's sooooooo cute, soft and folded on the top just like big sister's. Noah is huge! Compared to the teeny tiny preemies in the NICU he looks like a giant. His size, perfect pink skin, and ease at which he breathes reminds Andie and Kyle how blessed they truly are and how much God has showered them with healing grace. There is no doubt: Noah Patrick Johnson will grow to be a strong warrior for God!"
Just wanted to share -
Blessings,
Beckie
"He sleeps very comfortably and peacefully in a toasty little bed with wires and gadgets galore. His nurses are wonderful and very sweet. The hospital he is in is AMAZING! It is bright and cheery and colorful... we felt like we were in Disneyland. Noah has a head of thick brown hair that is like half an inch long. He has long, long fingers and chubby little toes. His skin is perfect, he is pink and robust. He has not one bit of jaundice. His wee eyes are pinched closed so we don't know yet what color they are, but I believe he looks very, very much like Miss Ella. His bump doesn't look nearly as scary as it sounds; he looks like he just has a plump little neck, like a football lineman! It's pink like the rest of his skin, with no mottling or bruising at all. The position of the mass causes Noah to look upward a bit, but he really does rest quite comfortably on his side. Today we made a discovery: Noah has a pinched little Ella-ear! It's sooooooo cute, soft and folded on the top just like big sister's. Noah is huge! Compared to the teeny tiny preemies in the NICU he looks like a giant. His size, perfect pink skin, and ease at which he breathes reminds Andie and Kyle how blessed they truly are and how much God has showered them with healing grace. There is no doubt: Noah Patrick Johnson will grow to be a strong warrior for God!"
Just wanted to share -
Blessings,
Beckie
Wednesday, January 21, 2009
Pictures and a few updates
I got to talk with Andie on the phone tonight and she sounds great. She is super sore and wouldn't laugh at any of my jokes because it hurt..lol. She said it's really hard being in separate hospitals, away from Noah, but she thinks her hospital is going to discharge her tomorrow or friday. Then, she plans on staying at children's hospital with Noah. Children's Hospital is so awesome and accomodating to parents. The rooms have pull out beds and you are able to live there until it's time to take your baby home. The only bummer is that your free hospital meals stop once you are discharged, so Andie will need meals delivered to her at children's. I'm working on that, but if any of you are in the area, please bring her some food. Mama needs to eat!
As for Noah; he is a champ. Andie went to visit him today and she got to hold him. Kyle and Andie met with Dr. Perkins (hope i spelled that right), who is an ear, nose and throat specialist. He said that Noah is perfect and so healthy. He has dealt with other babies who had similar conditions, and Noah is by far the best case he's seen. Noah will get an MRI tomorrow and possibly get his tube out on friday. They are 90% sure he'll be breathing just fine on his own. Andie has been pumping like crazy (sorry if that's TMI, Andie, but that was in my notes..lol) and she may get to nurse Noah on friday!!! I asked how well was he going to be able to nurse because of how they thought his tongue was involved, but Andie said that was all in the ultrasound, and his tongue seems to be fine. They asked about draining the cyst, but doctors think that draining would do more harm than good because it could cause more swelling. They are going to wait until Noah is about 3 or 4 months old to attempt a procedure where they put fluid into the cyst to make it decrease in size and ultimately shrivel up. Are you ready for the good news?? Andie said that, best case scenario, Noah might come home on Monday. Amazing!! But if not monday, then friday at the latest. That is, of course, assuming that he feeds well and progresses like they are expecting him. Kyle was headed over to stay with Noah tonight.
As for the pictures:
These are pictures that Andie's dad's wife, Tracy, sent me. They noticed today, that Noah has the same little folded ear that Ella has (or had, I'm not sure if she still does). So cute!!
Kyle and Andie's dad with Noah. Andie said they are so thankful that their beautiful son is so big and healthy. Noah is in the NICU with tiny 2lb babies, and he's so much bigger and stronger.
Papa and Noah. This picture is so sweet. Kyle is such a good daddy!
Thanks for keeping up the prayers. They still need them, but I'm sure Andie and Kyle would agree that PRAISE is due to our wonderful Savior.
As for Noah; he is a champ. Andie went to visit him today and she got to hold him. Kyle and Andie met with Dr. Perkins (hope i spelled that right), who is an ear, nose and throat specialist. He said that Noah is perfect and so healthy. He has dealt with other babies who had similar conditions, and Noah is by far the best case he's seen. Noah will get an MRI tomorrow and possibly get his tube out on friday. They are 90% sure he'll be breathing just fine on his own. Andie has been pumping like crazy (sorry if that's TMI, Andie, but that was in my notes..lol) and she may get to nurse Noah on friday!!! I asked how well was he going to be able to nurse because of how they thought his tongue was involved, but Andie said that was all in the ultrasound, and his tongue seems to be fine. They asked about draining the cyst, but doctors think that draining would do more harm than good because it could cause more swelling. They are going to wait until Noah is about 3 or 4 months old to attempt a procedure where they put fluid into the cyst to make it decrease in size and ultimately shrivel up. Are you ready for the good news?? Andie said that, best case scenario, Noah might come home on Monday. Amazing!! But if not monday, then friday at the latest. That is, of course, assuming that he feeds well and progresses like they are expecting him. Kyle was headed over to stay with Noah tonight.
As for the pictures:
These are pictures that Andie's dad's wife, Tracy, sent me. They noticed today, that Noah has the same little folded ear that Ella has (or had, I'm not sure if she still does). So cute!!
Kyle and Andie's dad with Noah. Andie said they are so thankful that their beautiful son is so big and healthy. Noah is in the NICU with tiny 2lb babies, and he's so much bigger and stronger.
Papa and Noah. This picture is so sweet. Kyle is such a good daddy!
Thanks for keeping up the prayers. They still need them, but I'm sure Andie and Kyle would agree that PRAISE is due to our wonderful Savior.
Blessings,
Beckie
It is with great pleasure and such honor....
That I am able to introduce you to this amazing baby (my God-Son...lol), Noah Patrick Johnson. He weighed in at 8lbs, 5oz and was 20 1/2 inches long. I am sorry these pictures aren't the best quality. Andie sent them to my phone and I had to take a picture of them on the computer and then upload them..lol. As of last night, Andie was doing well and feeling such peace. Praise the Lord!! Noah and daddy had headed to children's hospital to see if they were going to take the breathing tube out or see if they could drain the cyst. I received a text message from Andie this morning, and she is doing well, still very sore. She got a 4 hour pass to go see Noah at children's hospital and to find out more details to see what they are really dealing with. Please continue to pray for the recoveries of Andie and Noah.
"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
Psalm 139:13-16
"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
Psalm 139:13-16
Tuesday, January 20, 2009
Another update
I received a message from Kyle with a few more updates. I have a feeling the updates will trickle in as they find stuff out. And at some point, I think Kyle may get on here himself to post events and details in his own words. First, Kyle just wanted to reiterate how great our God is and he said thank you for all the prayers!! Noah's mass is big but he is doing fine. He is in ICU and will be taken to childrens hospital for precautionary reasons. He has a tube down his throat to help him breathe but he won't need it after tomorrow. Andie is doing great. She didn't loose much blood at all, so she didn't require a transfusion. She is still a little out of it because of the drugs and she's a little sore. Andie won't be able to see Noah until tomorrow, but she saw a picture of him that Kyle took. Kyle got to touch him and Noah squeezed his finger. Kyle says, "Thank you all for the prayers. Noah still needs them because he still has a little hill to climb but we know God will push him to the top. Pray for a speedy recovery for Andie as well."
Praise the Lord!
I will continue updates as I hear them.
Blessings,
Beckie
Praise the Lord!
I will continue updates as I hear them.
Blessings,
Beckie
We serve an amazing God
I cannot even hold back the tears as I write! Here is the text I just received from Kyle:
"Everything went as planned. God is an awesome God!! Noah is in ICU breathing fine. Andie is in a little pain but doing well. Thank you for all the prayers."
Please keep praying. I will post more as I hear this miraculous story unfold.
Blessings,
Beckie
"Everything went as planned. God is an awesome God!! Noah is in ICU breathing fine. Andie is in a little pain but doing well. Thank you for all the prayers."
Please keep praying. I will post more as I hear this miraculous story unfold.
Blessings,
Beckie
Update
Just received a text from Kyle. Andie just went in to surgery, so i'm guessing they are a little behind schedule. Andie had posted before that the surgery was going to be an hour and a half, so I probably won't know much until later. Kyle asks for prayers for Andie and Noah. But please pray for Kyle as he waits for updates from the doctors, since he is not allowed in the operating room.
No news yet,
As far as I know, the surgery was still a go for 7:30am (Andie's time). I have not received any texts yet this morning, although I am anxiously waiting for them. I did notice Kyle was online this morning, so maybe they have internet access with them. Either way, I will let you know as soon as I hear anything. Keep praying everyone!
Blessings,
Beckie
Blessings,
Beckie
Monday, January 19, 2009
This blog has been highjacked...
Hello dear friends and family,
This is Andie's friend, Beckie, and boy I couldn't wait any longer to highjack Andie's blog...lol. Andie probably figured I'd be on here as soon as possible. But seriously, I love this family more than words can express and Noah has touched my life in many ways. I know I've talked with several of you about joining together for a day of virtual prayer on Noah's birthday and since tomorrow is the big day, I'd like to invite you to a special prayer website. Although I will be updating this blog as I get updates from Kyle and Andie, I have set up a separate site for you to visit to leave prayers, scriptures, thoughts and comments for the Johnson clan. You can visit http://www.prayingfornoah.blogspot.com/ and enter the email: prayingfornoah@yahoo.com password: noahjohnson
Please, Please, Please, join us at any point tomorrow to pray with us.
Blessings,
Beckie Grainger
This is Andie's friend, Beckie, and boy I couldn't wait any longer to highjack Andie's blog...lol. Andie probably figured I'd be on here as soon as possible. But seriously, I love this family more than words can express and Noah has touched my life in many ways. I know I've talked with several of you about joining together for a day of virtual prayer on Noah's birthday and since tomorrow is the big day, I'd like to invite you to a special prayer website. Although I will be updating this blog as I get updates from Kyle and Andie, I have set up a separate site for you to visit to leave prayers, scriptures, thoughts and comments for the Johnson clan. You can visit http://www.prayingfornoah.blogspot.com/ and enter the email: prayingfornoah@yahoo.com password: noahjohnson
Please, Please, Please, join us at any point tomorrow to pray with us.
Blessings,
Beckie Grainger
On our way
In about 5 minutes Kyle and I will be pulling out of the driveway to begin our trek to Seattle for Noah's birth tomorrow morning.
I only have a few seconds, but I just wanted to ask for prayer for our sweet son Noah. We know that our lives will be forever changed tomorrow, and we can't wait.
We are resting in the Lord as our only peace and place of rest in this crazy world. My BFF Beckie will be updating the blog as we are in the hospital this week. If we get the chance to hop on the computer, I'll try and write myself but most likely it will be her.
Eternally grateful for your prayers--
Love, Kyle & Andie
I only have a few seconds, but I just wanted to ask for prayer for our sweet son Noah. We know that our lives will be forever changed tomorrow, and we can't wait.
We are resting in the Lord as our only peace and place of rest in this crazy world. My BFF Beckie will be updating the blog as we are in the hospital this week. If we get the chance to hop on the computer, I'll try and write myself but most likely it will be her.
Eternally grateful for your prayers--
Love, Kyle & Andie
Tuesday, January 13, 2009
One week
I had my appt. with Dr. Hsu in Wenatchee to check and see if I was dilated at all... if so we'd be driving to Seattle right now anticipating a birth tomorrow morning.
I haven't dilated at all surprisingly, but Noah is really really low (-1 position)! I called Dr. P after the appt. and told her that made me nervous because of his neck. She said it didn't make her nervous (although she didn't go in to detail, now I'm curious to know why it didn't make her nervous... it just seems to me like him getting snuggled down in there would provide lots of pressure on his neck...?). But, she did say that we will for sure be delivering Noah on Tuesday the 20th without an amnio. She said after talking with several different docs about the positive and negative sides of waiting, it is just too risky for me to go any longer than that. Now I'm praying that Noah's lungs will be mature. I'm not too worried, considering Ella was born at 38 weeks and she was fine, but every baby is different.
We haven't had an ultrasound in 4 weeks now. I think it's been good for me emotionally because I haven't had the usual tears 5 minutes after we leave the doctor's office... but even more importantly I think it's been good for me spiritually.
I have been forced to trust and focus on God, know that He is the great physician, and can heal this thing. I know that God has planned this whole thing out, with everything from Noah's lungs not to be ready to me not dilating yet, to give him more time to heal. The time that I have had with Ella has been absolutely priceless, and I am loving every minute of it. I have become a better mom. Not just to Ella, but I believe I will be a better mom to Noah because of how this trial has changed my view of the entire value of life and motherhood. My marriage is better; we have been forced to put God back at the center of our marriage... we have been reminded that God is our only rock, our only constant, when nothing has made sense in this mess, God does. I believe that God is using this time for things we aren't even aware of.
I admit, this long length of time makes me nervous about the potential size of Noah's mass. I am stuck in a weird spiritual battle of asking myself, "Am I just not trusting God to heal Noah?", or, "Am I just being realistic?". This has been probably the most challenging part of the last 5 months.
Still need lots of prayer that I won't need a blood transfusion during surgery, that Kyle will be able to trust God during that scary hour and a half when I'm out for the count and he can't see Noah, and that our precious baby will be healed.
Until next week...
Andie
I haven't dilated at all surprisingly, but Noah is really really low (-1 position)! I called Dr. P after the appt. and told her that made me nervous because of his neck. She said it didn't make her nervous (although she didn't go in to detail, now I'm curious to know why it didn't make her nervous... it just seems to me like him getting snuggled down in there would provide lots of pressure on his neck...?). But, she did say that we will for sure be delivering Noah on Tuesday the 20th without an amnio. She said after talking with several different docs about the positive and negative sides of waiting, it is just too risky for me to go any longer than that. Now I'm praying that Noah's lungs will be mature. I'm not too worried, considering Ella was born at 38 weeks and she was fine, but every baby is different.
We haven't had an ultrasound in 4 weeks now. I think it's been good for me emotionally because I haven't had the usual tears 5 minutes after we leave the doctor's office... but even more importantly I think it's been good for me spiritually.
I have been forced to trust and focus on God, know that He is the great physician, and can heal this thing. I know that God has planned this whole thing out, with everything from Noah's lungs not to be ready to me not dilating yet, to give him more time to heal. The time that I have had with Ella has been absolutely priceless, and I am loving every minute of it. I have become a better mom. Not just to Ella, but I believe I will be a better mom to Noah because of how this trial has changed my view of the entire value of life and motherhood. My marriage is better; we have been forced to put God back at the center of our marriage... we have been reminded that God is our only rock, our only constant, when nothing has made sense in this mess, God does. I believe that God is using this time for things we aren't even aware of.
I admit, this long length of time makes me nervous about the potential size of Noah's mass. I am stuck in a weird spiritual battle of asking myself, "Am I just not trusting God to heal Noah?", or, "Am I just being realistic?". This has been probably the most challenging part of the last 5 months.
Still need lots of prayer that I won't need a blood transfusion during surgery, that Kyle will be able to trust God during that scary hour and a half when I'm out for the count and he can't see Noah, and that our precious baby will be healed.
Until next week...
Andie
Tuesday, January 6, 2009
More (unexpected) Waiting
Kyle and I went to Seattle yesterday in anticipation of his birth this morning. We stocked the fridge for my mom & Kath to take care of Ella for the week, made all kinds of arrangements between Kyle's work, Ella's school, my maternity leave from Starbucks, having washer & dryer delivered, etc! Snoqualmie Pass was even closed due to avalanche, so we even had to take the long way to Seattle.
Right when we got there, Dr. Peterson did the amnio to make sure Noah's lungs are mature enough for him to be born. This was at 2pm; we were told we'd have results by 4pm. In the meantime we chatted with Dr. Peterson and continued to make plans for his delivery, and asked more questions about it. Dr. Peterson left our room at 3:30 and told us she'd come right back with the results. When she didn't return until 4:25, we knew that the news wasn't good... Noah's lungs are too immature for him to be born today!!! Dr. P anticipated that they may be borderline maturity, but the results came back and shocked her when they relevealed they were just way too immature. If the results were borderline, we were going to plan the EXIT procedure for a week from today, but because they had so far to go, we went ahead and changed plans for 2 weeks from today, which will bring me to 38 weeks (still 2 weeks before his official due date, but because Ella was born at 38 weeks she doesn't want to go longer than that). The new scheduled date is for January 20th. AHHHH!
I was so frustrated and let down that we weren't able to meet Noah today. After driving all the way over there and preparing so much emotionally, spiritually, mentally, for a birth TODAY, I was shocked and a little sad that we were driving home last night empty handed. Talk about a rollercoaster.
I know it's just not God's timing for Noah to be here, and I'm totally okay with that of course. I know that these next couple of weeks Noah is getting bigger, stronger, and healthier. But in the back of my mind I think, two more weeks for that stupid cyst to get bigger.
If I start to dilate, I will have to head over to UW immediately and stay in the hospital until his lungs are ready. It is just too risky to take the chance of him not being able to be born at the U. The same goes for if he is not ready at 38 weeks (which I doubt, but you never know with this child)!
Other things we found out at this visit:
- I will be completely knocked out during the birth. They want Noah to be sleepy when they deliver him so that they can more easily insert the tube, but also so he isn't overly eager to inflate his lungs (which would ruin the EXIT procedure, because if that happens to early he will not be relying on the placenta for oxygen). They also think this will be less stressful for me, in the event that they were going to have to knock me out anyway. I'm nervous about this, but I trust the docs that this is the best for Noah. This will be hard for Kyle, as he will not be able to be in the room. Please pray for him during this time!
- UW is the only hospital in Washington state (and among only a few in the country) that are capable of performing the EXIT procedure. They only perform 2-3 a year. There was apparently hundreds of thousands of dollars of equipment shipped from Connecticut last week for the scheduled delivery today. Whoops! All in God's timing!
- Dr. Peterson informed us that on the e-mail she sent out informing all the docs of the delay of his birth that there were over 100 people on the e-mail list. Wow. Apparently Noah has celebrity status, all the docs and nurses continue to tell us that this is one of the most talked about births there.
In the meantime while we wait, I am taking advantage of the extra time to move in to our new house (we closed on the house and spent our first night here New Year's Eve), and most importantly, soak up this time with my sweet Ella. She has been such a trooper throughout all of this, and adjusted so nicely to her new house. She is (finally) wearing panties all day long and going potty in the toilet consistently (diaper at night)! And we finally kicked the dang dog out of our bed! Lots of exciting things going on at the Johnson house... lol!
My mom says this is more time for God to heal Noah. My instinct is to just pray pray pray as hard and as much as I can for the next couple weeks, and just drown myself in God's word... which isn't a bad thing, but one of my best friends Barb reminded me that sometimes God just wants us to shutup, and be still, and know that HE is GOD! He is still in control of this entire situation no matter what I do.
I am forever in debt to you all for your continued prayers over these next couple of weeks!
Resting in HIM!
Love, Andie
P.S. Pic of Kathleen and I (no makeup, gross) with her at 25 weeks and me at 36 weeks.
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