Because my memory is scarce, especially of that time (it's all a blur!), I will tell what I remember and use email updates and journal from our caringbridge.org site to write his birth story.
Someday, I hope to show this to Amos and to keep as part of our family history!
So, without further ado...
(and I'll be adding more pictures as time allows...)
(From my memory)
Meanwhile, I was soon taken to the Operating Room, where they strapped my arms down and informed me that they would be putting up a curtain so I wouldn't be able to see the operation. I nodded thankfully and suddenly, my hospital gown flew up--to BE THE CURTAIN!! I was thankful that my bra was still on, but figured, oh well, they're doctors!
I have no memory of the epidural going in but I do remember them testing it by pinching me really hard to make sure I couldn't feel anything.
I don't remember much of the first part of the surgery, but do remember Amos being born and the whirlwind of activity of to the side, as they worked to stabilize him. It would be a few minutes before we knew his gender, as they were working on getting him breathing. I kept asking, "Who is it? Who is it?" and Nathan finally reported, "It's a boy--it's Amos!" Yay! I wanted a boy first.
As they stitched me up, I began to feel really uncomfortable and felt like I was going to throw up, but I only felt it in my lungs. Strange, I know. Then I asked if I could turn over on my side. Of course, they said no, and as I babbled on, the drug doctor turned a knob and I took a short nap! I think that in all of my shock, I had become delirious and they were wanting to hurry up and finish so I could start recovery.
Shortly thereafter, I awoke, actually feeling refreshed and was being wheeled into my room to recover. Waiting for me in my room were my good friends: Laura and Jessica Ribera and my workmates: Elaine and Alissa. As soon as I saw Elaine, I blurted out, "Happy Birthday!" It was her birthday, too, and I had been planning the festivities all month. How ironic that it would also be Amos' birthday.
The rest of the day was very emotional. I cried and cried and couldn't talk without crying. Pastor Kelly and his wife Sandy visited, as well as Claire Wilson and the rest of the Ribera family. My sister and Dan were in Yakima on a missions trip and were making their way back. Nathan was running up and down between floors from where Amos was in the critical care nursery to me, in my hospital room. Because I had forgotten to put my watch on, I had no concept of time and have no idea how long it was before Amos was stablized enough to be transported to the UW NICU, where they would be able to care for him better.
Before he left, though, they brought him in and we met. I couldn't stop crying.
The rest of the day is a blur. Brendan and Jessica went to our house to get clothes and things for our stay at the hospital. And Beth and Dan arrived and stayed with us for awhile. I couldn't move my legs for awhile and had trouble sleeping due to a pesky gas bubble. Finally I got some sleep, but not before sending out this email:
Thursday, July 20, 2006
Hello everyone,
Well, it appears that our lil peanut is a boy! Amos John Brendan Partain was born this afternoon at 4, via c-section. He weighs 3 pounds and is doing as well as can be expected at the UW hospital. This week has been a whirlwind of events, beginning with high blood pressure on Monday night. I've been off work since then and today, in a way that only God works, I began having contractions on the way to the hospital, where we had an appointment to be monitored and have further testing done. We soon realized, after they were coming every two minutes and the baby's heart rate would decrease during each contraction that we were going to have a baby today. That was scary realization number 1. Then it was decided that it would be by c-section which would require an epidural. Scary realizations number 2 and 3. So we walked through each step, the Lord giving us what we needed for every hurdle. We were worried, of course, how the baby would be after they were born, but were assured that things would be okay. There's definitely more to tell, but the conclusion was that the placenta (the organ that provides blood and oxygen) was starting to separate from the uterus, thus starting contractions. He was born, and for the first ten minutes, understandably, we didn't know who it was! Nathan was finally able to tell, and was happy to report that it was a boy! I am now here at Group Health, recovering and our little Amos is at the UW hospital, getting stabilized. He had a really smooth ride over there and was doing really well, the last time we checked. His blood pressure is a bit low, which they've given him medicine for and he is on a ventilator for now to help with breathing, but otherwise is alert and is doing well. Attached are some pictures from the day. Please feel free to call or visit; were at Group Health on Capitol Hill, in room #334. Thanks for all of your prayers and support. It means so much to us!
---Nathan, Sarah & Amos
The next morning, I was on the phone, calling my brothers to tell them the news. That day they also transferred us to a different room and then brought in the breast pump for me to start pumping out food for Amos. I would later be thankful for the culture in Seattle--how supportive folks are there of natural childbirth and breast feeding. They basically didn't ask me if I wanted to do it, but gave me the tools and got me started right away. In my delirium, I don't know that I would have been able to do that by myself!
On that Friday, I took a trip to the UW for the first time to see Amos. I could barely walk so I got to go in the wheel chair! My friends from work, Jamie, Alissa and Stephanie (who was very pregnant) came to visit. Beth and Dan were also there. Seeing Amos again was like a dream. I remember not being able to see his face well and wanting to, so I could remember it. He was still on the breathing tube so I couldn't hold him. But we could reach in and gently place our hands on him to help him feel safe and secure. He was so sweet, nestled in there. Earlier that day, Nathan had made a trip to see him, with Dan, and got to hold him while they changed the bedding in his isolette. I was a bit jealous that he got to hold Amos first but was also glad that they got to be together.
My mom came Saturday morning and it was a great comfort to have her there.
I got discharged from the hospital on Saturday afternoon and headed home to recover. I could barely walk by myself and had to start pumping every three hours to take advantage of my hormones. Those next few days are also a blur, the constant coming and going to the hospital and being on alot of pain medication.
***
(from email)
Monday, July 24, 2006
Hello friends and family!
What a joy it is for us to share with you pictures of our new baby, Amos John Brendan Partain. Yes, he is a bit early, born on Thursday, 7/20 at only 30 and 1/2 weeks gestation. He is currently tucked into an isolette at the University of Washington hospital and is being cared for by wonderful people. He is doing very well at such a young age: working toward breathing and eating on his own, is active and responsive to touch and sound (which we already knew from pregnancy!) and is getting stronger each day.
For those of you just tuning in, I began to have contractions on Thursday morning, on the way to the hospital to have some monitoring done. I did not realize they were contractions, but Nathan asked how far apart they were, as the feelings were coming often. After being on the monitor, we realized that his heart rate would decrease with each contraction, which were coming every 2 minutes. It was soon decided that it was best to deliver him and have him out in the world where we could see what was happening, as opposed to being in the womb where things were more mysterious. It was then decided that it would be by c-section and things took off. Over the next couple of hours, I would be prepped for surgery, they would do the surgery and then we would know who was in there. By 3:45 Amos was born and they began to stabilize him, getting him breathing and such. We finally found out that it was a boy and began rejoicing.
The whole thing was very intense, emotional and shocking. I feel like there is no way to begin to describe the way we were feeling, as it sounds so over the top when we begin to put words to it. We did not expect to have a baby on Thursday, as he had a few more weeks (about 10) to be in utero. We were majorly surprised, to say the least! But we were glad and very thankful that he is okay and is here safely.
It turns out that the placenta was in the process of pulling away from the uterus, something that was probably caused by thyroid issues, which we were in the process of treating and taking care of. We see God's hand in every step, and are thankful that we were already at the hospital. Had we gone any later, things may not have turned out so well.
Attached are pictures from the last few days. We are home now from the hospital and are visiting Amos lots and lots. He already is showing lots of personality and spunk, and showing us that his name fits him well!
We hope all of you are doing well, wherever you are now! We will try to keep you updated as things go along.
Love,
Nathan and Sarah
***
Sunday, July 30, 2006
Hello friends and family!
It's been a while since we've sent an update, and have created a group list to hopefully send them more frequently. Feel free to reply and ask to be taken off!
We celebrated Amos' first week of life on Thursday, and marked 3:45pm with a definite moment of thought! We couldn't believe that an entire week had flown by, as it had only seemed like a few days had passed.
He is doing well, growing and exerting his personality and will every day! (We'll need prayer, too, for our strong willed toddler, God willing!). He is off the ventilator, breathing on his own, room air, which is huge progress. He's still has a little "canula", nose prongs that are in his nose to help remind him to breathe. Again, in showing us his personality, he tries to pull them out all the time!
To date, he's gained three ounces; he's finished his heart medication that we are sure has closed the valve in his heart to cure the murmur; and he's taking 3 cc's of breast milk every three hours, which he's had no problem digesting. He's also off his photo therapy lights for now, as his jaundice seems to have gone away. We are so excited and thankful every day for every bit of progress that he makes.
So we got to hold him starting on Wednesday. Because of the phototherapy lights, we only held him for 30 minutes, but it was wonderful. It was like Amos became a person. I know it sounds strange, but he went from being someone that we would reach in and interact with and watch, to being someone that came to us and interacted with us. Getting to hold him made him three dimensional. Of course, it was emotional, and hard to put him back and not bring him home. But each day since then, the highlight has been getting to hold Amos, some days for an hour, some days for a few minutes. He is definitely the smallest person I've ever held! He's a gorgeous and well loved baby!
Nathan and I are doing well. Nathan is going back to work, which was a bit tough to do on Friday. He has been going to the hospital every morning, to chat with the doctors in the rounds to get the updates. He'll miss being part of that, but is thankful for his job at High Road and for the provision that it is for our family. I am feeling better and better each day. My tummy is still sore, but I can stand up straight for longer periods of time and can walk longer distances. It's funny how we take those things for granted! :) The funny thing, too, is that although Amos is still at the hospital, we are getting up in the night to pump, so we are still experiencing the wonderful new-parent sleep deprivation. And then Amos will come home, and it will continue!! I don't think we'll mind it as much, he's alot cuter than the breast pump!
We only have a few prayer requests at this point. We will find out tomorrow if the blood clot in his brain has been reabsorbed or made any progress in reducing. We will also see if the photo therapy lights truly cured his jaundice. Of course, we always keep in mind that he will continue to grow strong and healthy and that he will be home soon.
Thanks to all of you for your prayers and thoughts. We feel so blessed to be surrounded by such a community, near and far. Attached are a few fun photos. We couldn't believe that we got Amos smiling on camera, as I don't think he knew what he was doing! We also captured us together as a family.
We'll sign off now. More to come...
Much love!
Nathan and Sarah
***
(from caringbridge.org)
MONDAY, AUGUST 07, 2006 07:57 PM, PDT
Today is Monday, Aug 7th. It's my parents' anniversary! Yay for 30 years!Amos was born two and a half weeks ago, and is doing very well for his age! Over the weekend, we were able to start offering him the bottle, which he emphatically took and has taken mostly since then.He's showing us his personality, too. He hates to have his diaper changed, loves being held and cuddled, and likes to make faces at us when he's awake.
Amos' update will continue later...
THURSDAY, AUGUST 10, 2006 10:21 PM, CDT
Here's a quick update from the last week.
Here we are, another week has passed and Amos has been born for another week. Oddly enough today, he was in surgery again, as he was when he was born. (Technically, it was me that was having surgery done, with him as a happy result, but we thought it was fitting!).
Amos had to have a procedure done today to relieve pressure in his brain, caused by hydrocephalus (water on the brain) which was caused by a blood clot that happened around the time he was born. What a roller coaster of a day it has been!
But let's rewind a week, as lots of things have happened and lots of progress was made. Last Saturday, Amos was up to full feed of breast milk and we got to fully remove his IV. That was very exciting! His nurse decided to try feeding him with a bottle, and lo and behold, he was a natural. So for most of his feeds since then, he's taken most or all of a bottle. In the last day or so, he seemed to be more tired out, probably due to the hydrocephalus, so we haven't tried the bottle as much. We have also experimented with him eating from me (Sarah) and he did pretty well, there too. It is so amazing to be able to hold him and feed him, things I could have taken for granted but now am thankful for. Nathan has done a great job at learning how to bottle feed, burp and change diapers. He's a great dad already!
Amos is also so active, vocal and expressive. We love holding him when he's awake, as he'll make faces at us and sort of talks to us. When he's asleep in our arms, you can tell he loves to be there.
Since last week, we had been on pins and needles, watching his head size grow, wondering if they'll do surgery, etc etc. The hospital that performs the surgery (Children's) and the neurosurgeons there had to have time and space to look at his cranial ultrasounds and then have time and space to bring him over to that hospital to do the surgery. So Wednesday morning, they were finally able to look at the ultrasound, decide he needed surgery, check their schedule and have him come over. We found out around noon that he was going to be transported that day at 2pm, with surgery in the afternoon on the following day (today). Needless to say, we were very relieved! We got to the UW hospital around 12:30 pm and helped to get him ready to be moved. As we left there, many of Amos' nurses and doctors came to say goodbye and wish us luck. Amos had made lots of friends and we felt so blessed to have been so cared for there.
As Amos got comfortable yesterday and last night, we got acquainted with Children's. It's like an amusement park hospital. Everything there is very whimsical. But we see very sick children around there, and it's tough sometimes. Amos has his own room, and got to be on a different bed, so he has been out in the open; better for being loved on! He's had wonderful nurses so far, and again, we feel so blessed. There are places for Nathan and I to stay overnight, if we want; I get to the food for free, as a nursing mom, and the parking is free! yippee!
His surgery took place today at 2:30pm. It lasted to about 4.We got to hold him for awhile before, and took lots of pre-surgery pictures. At this point, the surgeon decided to put in a temporary shunt in the top of his head so that the fluid could drain between his scalp and scull. This will help to relieve the pressure and to reduce the size of his head (which had become bigger). If he needs a permanent shunt (because the problem has not resolved itself) he will have surgery again at 2 or 3 months of age, to have a permanent shunt put in that has a tube that drains in his abdomen.
He made it through surgery and did very well. He was grogy as he came out of the sedation and still very sleepy when we left for the night. He's very comfortable, though, and even though he had lots of hook ups, (a breathing tube and I.V.) he is doing well. He has a big square bandage on his head to cover the incision, and his head is already smaller. I have to admit, as his mom, it was hard to see him after surgery and I couldn't stop holding his hand. We hope the breathing tube will be able to come out tomorrow, as Amos remembers how to breathe, and that he'll be back to real food in no time.
Please keep him in your thoughts and prayers. We are hoping that this procedure will help the hydrocephalus go away, with no other surgeries necessary. We also hope that there are no infections that come as a result of this procedure. Lastly, we hope that he recovers well and soon so that he can begin to make progress again, eating, breathing and putting on weight, all on his own.
Thank you for your continued support and thoughts. We feel blessed to have such a community of people caring for us!
SATURDAY, AUGUST 12, 2006 02:09 PM, CDT
Amos is continuing to make progress, with his head (the swelling has gone down alot) and is on track to making progress again. As of this morning, he got his breathing tube taken out and was so happy about it. As the nurse said, "He would have taken it out if we didn't!" He's resting well and we hope to resume milk feedings sometime today. We'll let you know how things go!
SATURDAY, AUGUST 12, 2006 11:41 PM, CDT
We've just been with Amos at the hospital. It seems that he is doing so well, with his brain not swelling now, and doing well after surgery, that he will go back to the UW Medical Center on Monday. He resumed feedings on milk today and hopefully overnight will go to full feedings, and have his I.V. removed. He still is remembering how to breathe on his own, as when I was holding him, he would get so comfortable and relaxed, that he would forget to breathe! So we had to help him remember, quite a few times, and he finally had to go back into his little hut, so that he could get back on track. His head looks good, the incision is healing well. He has a bit of a conehead, and will for awhile, as the fluid drains to a pocket up there. But he's as cute and fiesty and vocal as ever and we're glad that he's doing so well. Thanks for all of your messages...they are very sweet!
Time for bed...until next time
SUNDAY, AUGUST 13, 2006 08:28 PM, CDT
Well, Amos is almost back to where he left off before having surgery. He's back on full feedings (1 oz every three hours), is off all I.V.s and is doing pretty well with his breathing. We spent all afternoon with him, Nathan holding him, doing the classic dad-and-baby-asleep-together-in-the-rocking chair pose. I knitted Amos a hat but, it's too big for right now! Oh well, hopefully he'll grow into it! Speaking of growing, Amos weighed in last night at 3 lbs, 14 1/2 oz. We were cheering, as the nurse thinks that that's all real weight, not fluid weight as we had thought yesterday! Amos did remember to breathe today while being held; yesterday he got too relaxed with me that he would forget to breathe. It can be scary, but it's good that it happens at the hospital, where all of the alarms are going off if that happens. So tomorrow, Amos gets to go back to the University of Washington Medical Center NICU, because he is doing THAT well! His head and ventricles are not swollen anymore and the neuroligists are all very pleased with the outcome of his surgery. We are going to be sad to leave Children's...we were spoiled there! But excited to be back with our many friends at the UW. So he'll get to ride in the special Ambulance again, no, the lights do not come on!Have a good week; until next time...
MONDAY, AUGUST 14, 2006 10:35 PM, CDT
Amos had a great day today! He got to ride in the Ambulance, yet again, to go back over to the UW Medical Center. All of our nurse and doctor friends were so glad to see us there! And the nurses at Children's didn't want us to leave. He's making so many friends already!Tonight we attempted a bottle feed. Amos did well, but took only half. So we'll keep trying, and maybe try to feed him a few minutes earlier if he is more awake, next time. His hair is also changing, turning a bit auburn! I was born with strawberry blonde hair, so it's neat to see Amos' hair going in that direction. He also gets to eat a bit more at each feeding, too. He's up to 32 cc's every three hours, so hopefully he'll continue to gain weight.Overall, everything is going well. We are encouraged by his progress and quick recovery from surgery.We keep taking things day by day, but it's been hard not to look ahead. Hopefully he'll be home soon, but even that is hard to imagine!Time for bed...until tomorrow...
TUESDAY, AUGUST 15, 2006 05:11 PM, CDT
Amos took an entire bottle, today, at his noon feeding. How exciting!!! It's been over a week since he's done that, so we are quite happy.
I am starting to feel more like a mom, and more importantly, his mom. When Nathan and I got married, it took us a long time to realize that we were married. We just couldn't believe that something we had longed and wished for for so long was finally true. It's the same now. It's hard to believe that I am finally a mom. It's taken most of these last few weeks for me to feel that way, probably because things turned out differently than planned. But today, while I held Amos and we just hung out, I really felt like his mom, like I was going to get to really know him...like I already really knew him and could tell each nurse what his likes best if they asked.He is already making friends, too. So many of our doctor and nurse friends have visited to tell us that they are glad that we're back, that they missed Amos and that they think and pray for him and us. It's amazing to me that someone so small can have such an impact on people already!Another funny thing about today is that Amos looked alot like my brother Joel, when he was a baby. I couldn't believe how much he looked like Joel's baby pictures. Amos might also be turning into a red head, or almost a red head. That's exciting to us! Too, they managed to find little pajamas that fit Amos, that he was almost too big for. That made him look alot older!Anyway, those are the thoughts for today. More later...
TUESDAY, AUGUST 15, 2006 10:57 PM, CDT
...before we go to bed...
Nathan and I just went and visited our little peanut. He took another bottle from Nathan! Yippeee!He needs to do that regularly to go home, so we are taking it one feeding at a time!
Anyway, just wanted to share the news. Goodnight!
FRIDAY, AUGUST 18, 2006 11:31 PM, CDT
okay...
sorry that there have been no updates in the past few days. i promise, i'll put up a very long one tomorrow. i've got to rest up first!
SATURDAY, AUGUST 19, 2006 10:37 PM, CDT
Amos has had a great week. He is growing and changing every day. Every day, he looks different! It's amazing that we are able to see him now, and see these phases, as we would have missed out on them if he were to still be in my belly.
All week, he has put on weight. He has officially broken the 4 lb barrier, and is up to 1846 grams today. He is taking half of his feedings by bottle and is doing so well in remembering to breathe. He also got the top taken off his isolette, which is a huge step because that means he can keep his body temperature up and regulated (one of the requirements for going home!). It's so great to have him out in the open. Funny, though, now we can hear him when he cries! Not ten minutes after the top came off, I walked away for two seconds and he started screaming his head off, which we could hear, loud and clear! It was my first moment of mom embarrassment because he was being so loud! He does have a set of pipes, though. Wonder where he gets that?!
Today something interesting happened... the little bump on his head, where the fluid is draining from the shunt, was a bit bigger than it's been all week and we are a bit concerned. We think that the shunt is draining faster than the fluid is being absorbed and so it's built up. We don't know what will happen next. We know that right now, it's not in an urgent place, that things are still normal for this condition and procedure. So we are hoping that the bump will go down soon and that things will continue on. Please keep that in your thoughts and prayers!
Amos is one month old, tomorrow and 35 weeks gestation. That means that we are half way there to his due date! Amazing! He's been with us now for a whole month. We are astounded at what has happened, and continually getting a reality check. This week has also been a good one for me and Nathan. When Amos does well, we do well.
So I'll stop rambling for now. I forgot the camera at the hospital, so new pictures will have to wait!
Thanks again for all of your love and support! Good night!
TUESDAY, AUGUST 22, 2006 10:38 AM, CDT
Well, here we are, into Amos' 36th week of gestation, his 6th week of life. We hardly remember what life was like six weeks ago.
Amos is doing so well. He has pretty much reached his milestones to go home, if it weren't for his special brain issue. He seems to be an overachiever already! On Saturday, his pocket had grown to a size we had not seen before. They drained it on Sunday morning, as it had become too taut. It promplty refilled so by Sunday night, it was full again. So far, it hasn't gotten to the point of needing to be drained again, but we are watching Amos closely to make sure we don't miss anything. He has neurologists from TWO hospitals working on him and all of the doctors, nurses and residents at the UW are getting a good education on subgaeleal shunts and hydrocephalus. So Amos is on track to gaining enough weight to go into surgery again. I am not excited about having to go through that again, but it might be done within the next week, so I suppose it will be good to get it over with! He's doing really well, otherwise. He's growing everyday, putting on weight. He's also missing his feeding tube...he pulled it out one night and the nurse decided to leave it out, as he had taken most of his feeds by bottle, the day before. We practice breast feeding together too, which has been wonderful!
Thanks again for all of your prayers. We see God's hand on him, everyday, in the way that he is growing and changing and healthy. He's a trooper!
WEDNESDAY, AUGUST 23, 2006 08:41 AM, CDT
So Amos will be at the UW for the next one to two weeks while his ventricles and head mature a bit more before getting a permanent shunt. We are trying to be patient. He would be able to be getting ready to come home now, otherwise. Oh well! He is causing quite a stir at the hospital, as the nurses have not really seen the kind of temporary shunt that he has. So there are things to watch for (high blood pressure, low heart rate, vomiting, irritability) to know if he needs his pocket drained again. Everyone is getting educated by the Neurosurgeon or us. We are experts!
But otherwise, he's doing well. He'll reach the 2k weight soon, which was the requirement for having the surgery done.I think they didn't expect him to hit the mark so soon! He's doing so well. He's taking all of his bottles, still, and is just a delight to be with. He's so sweet and cuddly. I am bringing clothes for him to wear, as we can bring stuff and then bring it home to wash. Thanks to Aunt Christen, the Heatons, the Zerfoss' and the Wilsons, we have little outfits for him to wear right now! Thanks! More later...
THURSDAY, AUGUST 24, 2006 09:30 PM, CDT
Amos is 5 weeks old today! Wow!
In my previous post, I had said he was six weeks old, but I think it's only 5. That's sleep deprivation for you!
Anyway, today Amos gained 40 grams, so he's almost to the 2k mark. He's at 4 lbs, 6 oz. He's staying at the U for the next week or so, but we may start preparing to be discharged, as our nurse thinks that Amos won't need to go in an Ambulance over to Childrens...he'll get to go with us! Woohoo! We got our car seat yesterday and will start with the discharge training, CPR class, car seat test etc. Today Amos' cranial ultrasound showed a bit of swelling in his ventricles, which probably meant that the blood clot that is still there is irritating the ventricles a bit. So the UW Neurosurgeons came up and drained his pocket. We walked in on that, with Amos not too happy and promptly left the room as it was too much to hear his little screechy cry. We went back in, talked to the Neurosurgeons and gave Amos lots of cuddles. He was happy in no time.
We don't know what the next weeks hold for us in terms of a time frame. So we'll keep taking it day by day. And I'll try to keep everyone updated!
SUNDAY, AUGUST 27, 2006 10:10 PM, CDT
Amos is 36 weeks today!
We gave him his first bath, and much to our surprise, did not wail and scream, as we thought he would. He was wide awake and very wiggly! We bundled his clean little self up and gave him warm cuddles for the rest of the afternoon!
It looks like we will be heading back to Children's Hospital on Wednesday, for surgery to get the permanent shunt put in on Thursday. The surgery is not invasive; they just need to connect a tube to the shunt already in, that will drain in his abdomen. He will not have a little pocket on his head any more, either. After surgery, we don't know what will happen...will we go home, back to the U, stay at Children's?? And we don't know how long Amos will need to recover. So...things are up in the air for the next few weeks. Either way, we are almost to September...the time has flown by. It makes sense, because my schedule has revolved around Amos' feedings and trying to be there to help out with them. I am getting to know all of the nurses well, and will miss being at the UW.
Anyway, Amos is up to 4 lbs, 8 ozs and is doing well with eating. Most every day he eats well beyond what he should, so that's exciting.
Thanks again, for keeping us in your prayers and for your sweet messages. We feel so loved and someday Amos will too!
THURSDAY, AUGUST 31, 2006 12:00 AM, CDT
So the lil' peanut gets to have surgery today (Thursday), for sure. It will happen after noon, around or after 2 pm. He had a pretty good day today, as I think that he is feeling better. He had some fluid up in his little pocket, so I think that the shunt was working again, which enabled him to eat better and feel better. He did get his eating tube reinserted through his nose, in case he was too worn out to take a bottle. There was a chance that they were going to hold off on the surgery until next week to try to let him be as big as possible before putting the permanent shunt in, but after looking at his cranial ultrasound from today, the neurosurgeons decided that he needed to have it done tomorrow. His ventricles had become swollen again and that makes all of us very nervous! We are settling in to Children's Hospital, but miss our friends at the UW! As soon as Amos is able, we will be visiting lots of places: the U, my old job and of course, Dad, for lunch at the shop!
So, it's time for bed. Thanks for your encouragement. We are taking one day at a time!
Love, Nathan and Sarah
***
(from email)
August 31, 2006
Well, here we are with another update. Sorry so much time has passed in between, the days are passing so much more quickly now!
Amos has grown a whole heck of alot. He is up to 4 lbs, 10 ozs, and is doing very well. We are in awe of how he's growing and changing every day. He is very talkative already, and has a very loud voice...just like his mom! He continues to look like Nathan, in his eyes, but has Sarah's lips and cheeks. He's a precious baby, that's for sure, but feels also like a little person. It seems like we understand each other at times.
So just when things slowed down to boring old progress, Amos decides to shake things up a bit! He had been scheduled to go back to Children's Hospital on Wednesday for surgery on Thursday to have his shunt altered to be more permanent. Over the past few days, he had been having a harder time finishing his feedings, which wasn't too concerning, as he was taking anywhere from 30 cc's to 50 cc's at a time. On Sunday, we spoke to the doctor, because his reservoir on his head seemed to have less fluid, his head circumference had grown a little and the feedings were a bit pokey. But she assured us that he was okay, just growing. Over night last night, he didn't do so well, and did not meet his minimum fluid intake for yesterday, so the nurse and residents were a bit concerned. By this morning, they had decided to move Amos to Children's today, instead of tomorrow, as he wasn't eating well, at all. He also seemed irritable and his head circumference was up again, and we could tell. We came to the conclusion that his shunt has become clogged, probably with bits of blood from the clot that formed after his birth. So instead of the cerebral spinal fluid draining out of his ventricles, under his scalp, it's staying in there, making his head swell. Not good.
So I spent the day with him, waiting to be transferred. He had an I.V. put in for extra fluids and basically ate when he was very hungry. I fed him at noon and he took the bottle emphatically, with little problems. He didn't take his usual amount, which was okay. We decided not to push him. We made it over to Children's late this afternoon and settled into a new place, again. Amos had his fourth ambulance ride in six weeks, and to my knowledge, it was pretty uneventful! It was so sad to leave the UW Medical Center. I had really settled in there, getting to know everyone. It was hard to walk out, knowing we may not be back.
So Amos is slated to have surgery Thursday afternoon and everyone is saying that if recovery goes well, that he could be home in one to two weeks. AAAAHHHH! That's a crazy thought to us. Even though we've been anxious to have him home, we aren't ready! We are still working on making the garage into a third bedroom, and have other little projects to finish. Either way, we'll be glad when he can be home. The surgery basically involves having a tube connected to the shunt already in his brain, that will run under his skin, down his head, neck and into his abdomen. He will probably have it for the rest of his life. This means no contact sports for him, unfortunately. Oh well! It also means that he may have more surgeries down the road to unclog the shunt, or to have it elongated. We just have to get through this one, and take things day by day.
Sorry for such a rambling message. We are both pretty tired!
Thanks again for your prayers and thoughts. We are sustained by your love and support, and can't wait for you all to meet our precious little Amos!
Too, I update the caringbridge.com site, with mostly daily entries. If you need more info about the site, please let me know!
Attached are a few photos from Sunday and Amos' first bath. It was so much fun! He loved it, too. He didn't cry at all!
Love to you all,
Sarah and Nathan
***
(from caringbridge.org)
FRIDAY, SEPTEMBER 01, 2006 08:58 AM, CDT
What a beautiful day it is today!
For starters, it's Nathan and I's 5th anniversary!! To celebrate, we will comfort Amos after he has surgery. That's right, his surgery was postponed to today because they had an emergency operation come up yesterday. Apparently they will take out his current shunt and put in a new one on the left side of his noggin, to get further away from where the blood clot is, to avoid clogging. There will be a tube running under his skin, down his head, in his neck, into his abdomen to drain there and be reabsorbed. So Amos will have more incisions and more battle scars. Of course, all adding to his cuteness!
We will update everyone after the surgery. Thanks for your prayers.
Much love,
Sarah and Nathan
ps To all of you that were at/in our wedding, can you believe it's been five years already!? Time flies!
We love you!
SATURDAY, SEPTEMBER 02, 2006 05:51 PM, CDT
Here we are, on the other side of the surgery. Yesterday was an intense day, and yet, things came out okay. They had to do more things this time (remove the old shunt, put in the new one and thread the tube down to his abdomen), so the surgery took about 2 hours, and we were a bit anxious. After they were done, the neurosurgeon came out and spoke to us. He assured us that things went well, that it the fluid was looking more clear (evidence that the blood clot is reabsorbing and not sticking around) and that Amos should be on the road to recovery soon. As we were talking, they rolled past us, with Amos squeaking a bit. They had removed his breathing tube, and we were encouraged. So we headed upstairs for some quality cafeteria food that was free, and was joined by the Kellys and the Wilsons. It was such a blessing to have a break in the action, to be renewed by fellowship and with love. When we went back to see Amos, they asked for another 30 minutes to get him settled. He was needing to go back on the breathing tube because he needed to have more pain meds, and wasn't remembering to breathe as well. So we drove around for a little while and came back. The resident pediatrician came out to talk to us, as things were not great. They figured out (because his heart rate was up, blood pressure was down and eyes were very dialated) that Amos had had a small seizure. They were immediately able to give him meds to stop it and because he was on the ventilator, no harm was done. But they were worried. They ordered a blood transfusion and put him on dopamine to help his pressures go up. We were sort of stunned, and didn't quite know what to think. They think his body was just reacting to the stress of all of the surgery. We went back to say a quick hello, and give him our love. Of course, it was tough to see him there, all wired up and sedated, but we knew that it was best for him, to have the surgery done. As we watched the doctors, residents and nurses work on him, his heart rate and blood pressure began to stabilize, and things settled down a bit. Amos was even breathing mostly on his own, taking alot of breaths! The neurosurgeon also came in to reassure us that the shunt and procedure were fine, that his ventricles were still a bit swollen, but would go down over time. They kept looking at Amos' pupils and would get a new blood pressure every minute. Our nurse even stayed over to help care for him, working a 16 hour day. But after Amos was stablized, they decided to start the I.V. for the blood transfusion. Because Amos' veins were all used up, they had to put the I.V. in one of the veins in his head. Yes, pretty gnarly looking! This was going to help get everything back up to normal and help him look alot less pale. Around 9:45, I suggested to Nathan that we go get dessert, to celebrate our anniversary. Since Amos was doing okay, we thought it would be alright to go. We went to Macaroni grill and had some great food and wine. It was a memorable anniversary and there was no other place we wanted to be, than with each other and Amos. There are so many more details and little parts of the story, but this is the gist of it.
This morning and afternoon, the report is that Amos is continuing to do okay. Tonight the report is that he is still a bit out of it, probably from the seizure medicine and maybe from the morphine, for pain. But he is on food, and is taking half to full feeds. He is still on his breathing tube, and is being watched very closely by the doctors and everyone.
We are doing okay. We're glad that it's over for now and are taking things one day at a time with his recovery. We don't know how things will go for the next week or two, but are hoping that Amos will be home soon. Thanks for all of your messages lately. It is so encouraging to hear from you, wherever you may be.
TUESDAY, SEPTEMBER 05, 2006 11:37 PM, CDT
This entry is titled, "Graduation!"
Amos graduated from the heated bed to a crib this morning (or last night...I can't remember!). Then tonight, he graduated from the ICU!!! He is now on the medical floor, at Children's Hospital, where he will be for the duration of his hospital stay.
The past few days have been interesting and tiring. Amos began to start doing much better on Sunday. He was pretty knocked out from the anti-seizure medicine, and was still not awake, but was moving around alot and was showing good signs of progress. He was taken off of the feeds overnight Sunday, because his breathing tube was leaking air into his stomach, and he wasn't tolerating food very well. But Monday morning, he got his tube taken out, was awake and on his way to being the littlest cutest baby ever! He was put back on full feeds and was continuing to get rid of all of his extra fluids. Today he had an EEG done on his brain to see if he'll need to keep taking the seizure meds. We hope not! He also had a cranial ultrasound done, and the neurosurgeon said that everything still looks great!
We are so thankful to be past the weekend. It was so hard to see Amos in such a state. He was asleep for most of it, and I'm sure will have no memory of it. Still, for a baby that's technically not supposed to be born yet, he's had a pretty full life so far.
So how much longer are we in the hospital??? The resident tonight seemed to think at least another 2-3 weeks. Nathan thinks Amos will be out by the end of the week, start of next week, at the latest. I say by the end of next week. We have yet to get him back on the bottle and for him to be totally okay with breathing on his own, but we've seen him make awesome progress before, so we didn't argue with the resident, but think he'll be home sooner.
Thank you for all of your prayers, and many messages and emails of encouragement. The Lord has greatly taken care of us. We have not made it through this on any strength or any thread of goodness that we have. God has given us grace beyond measure, patience beyond understanding and peace beyond what we could ever imagine. And Amos has progressed and excelled in spite of his brain issues. He is healthy, growing and so wonderful. The Lord has heard your cries on our behalf, and we are thankful for you who love us so much to be thinking of us so much. The journey is just beginning and we'll continue to need your help. Just know that at this mile post, we recognize our inability and God's ability, to carry us further and better than we can imagine.
Love to you all. We'll keep you updated! Goodnight!
WEDNESDAY, SEPTEMBER 06, 2006 11:53 PM, CDT
Okay, this one is titled, "swimmer's ear."
What happens when cerebral spinal fluid leaks out of the incision on your head and goes down into your ear, to hang out there for the night and next day??? You guessed it...swimmer's ear. I am sure it's the youngest, earliest, smallest case in history. That topped our day off of just utter frustration with the doctors, nurses and miscommunications at the hospital. The good news is that Amos is back on the bottle, for every other feed, and we are going to work towards getting his tube taken out so he can eat only from me or a bottle.
So after Amos spent the day with fluid slowly leaking out of one incision, we noticed some greenish goop coming out of his ear. Now because I had seen this happen before at work, (at the day care), after kids had an ear infection, I immediately thought that's what Amos had. No one else shared my theory, until the senior doctor on for tonight asked if any fluid had leaked down to his ear. And by golly, it had. And so Amos' outer ear was slightly infected. This made the second time today that my gut proved us right. The first time was when the neurosurgeon was upset that he never got the message that the fluid was leaking in the first place. He was concerned about the leaking and came right down to fix it (as I thought he would do.). Talk about intense frustration. By the time Nathan arrived after work, I was so worked up and it was good to have him there to share in the day with me.
Please pray that with the little amounts of sleep we are getting, that God would grant us patience and grace. I am having a hard time with the medical professionals, because they mostly act like I don't know anything. And while I'm not trained, I am Amos' mom and have lots of experience dealing with little people. And their issues. Anyway, I think it's time for me to go to bed. I'll try to be nice tomorrow! :)
THURSDAY, SEPTEMBER 07, 2006 10:53 PM, CDT
So today was a better day for Amos and I. For starters, we had our fun Aunt Jessica with us (Jessica's husband is who Amos is named for), hanging out and cooing over Amos! He had no leakage, as the dermabond has glued his head closed. He kind of looks goopey right now, with all of the stitches, dermabond, shunts, resevoirs and sticky stuff on his head. But he is as cute and sweet as ever. I don't even notice it now!
Amos had a good day with his feedings. When he is awake, he does so well. When he is sleepier, he doesn't do so well. So tomorrow in rounds, I will be talking to everyone about feeding, etc. The occupational therapist will also be up to help us out.
I was able to make some progress with the medical team, as they were all very apologetic about the miscommunication yesterday. I made sure to bring it up and see if something had been done. So that was good to clear up. The pediatrician still thought that Amos didn't have an ear infection, but I wasn't going to argue with him, as the drops had worked and he was doing better. We are really going to be focusing on helping Amos eat well and gain weight. We don't want to push him too hard, but want both things to be successful. Please keep that in your thoughts and prayers. He had a gorgeous feeding tonight, which was so encouraging. His resevoir (on the right side), had also gone down tonight, which is awesome. Overall, it was a good day, and I feel encouraged at the small steps of progress Amos made. He is doing so well otherwise, healthy and breathing well and cute as ever. Every nurse we have mentions how wonderful he is.
Anyway, thanks again for all of your encouragement. Goodnight!
FRIDAY, SEPTEMBER 08, 2006 11:48 PM, CDT
okay...quick update. i am so exhausted but also very excited. amos had a great day. the week is ending well. it seemed to never end, and it was only a four day week!
the only thing keeping us in the hospital at this point is amos' feeding and putting on weight issues. if he can take a bottle or breast feed for every feed, then we're home free. hopefully while he does that, he'll gain weight. so, we are going to be focusing on feeding the next few days, with me being there from 9am-9pm to try and breast feed every time. today, he took a whole feeding from me. tonight, he was short by only 10 cc's. he's making such progress. so we may have a baby home by tuesday or wednesday. (wouldn't it be so perfect if it was thursday?) his noggin looks great--the resevoir on the right side is reabsorbing and his shunt on the left side seems to be working really well.
please keep his feedings, our sleep and energy levels and the next few days in your prayers. i am so excited at the thought of him coming home. we both are. thanks so much for your love and support! goodnight!
SATURDAY, SEPTEMBER 09, 2006 10:54 PM, CDT
amos and i had a great day! aunts jessica and bethany hung out with us all day while the boys worked on our house. we emerged tonight with foggy hospital-all-day brains. we are on track with amos and his feeding. all day today, i nursed him and he did so well. it is an awesome feeling to be able to feed him. we will probably end up spending the night there the next couple of nights, so that we can feed him through the night, either by nursing or by bottle. if he does well, gains weight and has no brain issues, he could come home tuesday or wednesday. we are so excited. i can't wait to be home again. we'll keep you posted...goodnight!
SUNDAY, SEPTEMBER 10, 2006 09:13 PM, CDT
we are now into our second twelve hour stretch in our hospital stay marathon! we are so focused on amos and nursing and him coming home soon, that we are living with amos, since he can't live with us right now. after church, nathan went home and collected our essential living items...toothbrushes, my sewing machine, pjs, friends, the godfather, you know, the essentials! and because rick jensen was so great to fix our laptop, we can now communicate with the outside world!
so, the amos update is that he is doing great! he's nursed all day, and i've been around so as to see his schedule, and notice his cues. it's been so much fun. i really feel like a mommy now! we are hoping to be home by wednesday or thursday, as the hospital air is very very dry!
thanks so much for all of your prayers and well wishes. we will keep you updated!
TUESDAY, SEPTEMBER 12, 2006 06:07 PM, CDT
the hospital marathon continues, hopefully not for too much longer! days two and three have been going well. day two was quite evenful. we spent the night Sunday night and had our first taste of true parental sleep deprivation. amos was up (and actually, we were too, being the night owls that we are). he took 66!!! cc's from me and two hours later was up again hungry. that's a boy for ya! after 45 more cc's we went to sleep only to get up around 4 and then 7. we got up and found out that the cranial ultrasound people were awaiting our presence. so amos and i strolled through the hospital, i in my strawberry pajamas and unbrushed teeth and amos in his snuggly blanket and pjs. we returned to host the medical team in our room for rounds, i still in my strawberry pjs and amos in his snuggly blanket. we talked going home!!! and decided to gear up for that, hopefully on wednesday. the rest of the day went well. amos has been doing a great job with eating and breast feeding. he's a champ! yesterday afternoon aunt bethany came over and hung out with us. last night we discovered that amos' reflux probably has returned. he had a major spit up this morning and that was pretty discouraging. apparently though, reflux is pretty common in premature boys. so he's back on zantac! he and i got to sleep well last night, with a few good four hour stretches. nathan also got to sleep well, which was much needed for him. our room is quite comfy; we've loaded up the couch with blankets and we've got our own bathroom which helps! this afternoon, amos passed his car seat test with flying colors. they want to make sure that the angle doesn't cause him to spit up or stop breathing. he did so well! our friend erin and her baby, josiah came to visit and that was great fun, too. amos had another spit up, though not as much as last night's. if all goes well and he gains more weight tomorrow (he's up 20 grams today) then we may and hope to go home tomorrow afternoon. he'll get his immunizations in the morning and will hopefully eat well through the night. we'll keep you all posted. goodnight!
WEDNESDAY, SEPTEMBER 13, 2006 10:41 AM, CDT
we're going home today! we can hardly believe it, but the time has come. we will be leaving around noon to begin the next chapter of life with amos. God has been so good, faithful and loving to us so far and we are thankful that amos is doing so well. please continue to keep us close, as amos had his shots this morning. so far he's okay, but we'll see! we'll check in again, just wanted to let you all know!
SUNDAY, SEPTEMBER 17, 2006 08:40 PM, CDT
just a quick note...
life with amos at home is pretty awesome! things are going really well! more later!
SUNDAY, SEPTEMBER 24, 2006 08:41 PM, CDT
Dear friends and family,
As most of you know, today, September 24th is Amos' due date. We made it! It is so hard to believe that 10 weeks ago (time flies!), Amos was born, early and abruptly but in God's time. We continue to be reminded of his plan for Amos' life, as the circumstances of that day are so stark. If we had not been at the hospital when we were, we would have had a much different and more sad outcome. Because God had Amos' life in his hands that day, we remember that he is always holding us and that our lives have meanings and purpose. Amos' purpose so far (I believe) is to remind us of God's great goodness and love for us.
Having Amos at home with us has indeed, been a new chapter of being his parents. We were released from the hospital on Wednesday, September 13th and were so glad to bring him home. We are experiencing true sleep deprivation and with it, true joy in having our little guy with us. We so enjoy just being at home, watching him while he's awake and alert, feeding him, bathing and changing him and just having him around. It's so so wonderful. And he's doing really well. He's eating well, is both nursing and taking a bottle, with ease. He's gaining weight (was at 5 lbs, 6 oz last Wednesday) and has remained pretty healthy. He sneezes alot (like his mom) and loves to sleep in his car seat, which we just place in his little crib at night. Overall, things are going really well. We love life with Amos at home and look forward to much more. We pray each day that his shunt will work properly and that Amos will be spared any complications or more surgeries. We appreciate your thoughts and prayers for this, too. The support and love we've recieved from our family and friends, jobs and church, has carried us through the start of Amos' days outside the womb and we are blessed because of you. Thank you again for your love.
Because we are no longer in intensive care, we will stop using the caringbridge site. But, in true 21st century form, I've begun a blog to keep everyone updated. Just copy and paste this link to go to the page. Take care and much love,
http://partainfamily.blogspot.com/
Nathan, Sarah and Amos
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