Merry Christmas from Utah! Our first Christmas in Utah finds us enjoying time together, missing our family and traditions in Colorado, listening to the Chapel of King's College Nine Lessons and Carols, and going to our friends' house, the Holladays, this afternoon.
Last night was a great night. We had four candlelight services at church. It is fun to know that many people who may not know God were there singing His praises and hearing about the Gospel, perhaps for the first time. The music was beautiful, though I must admit I miss the incense. The girls dressed up in their beautiful matching Christmas dresses from Granny, and today, they get to dress up in their beautiful matching dresses from Nana!
This week, we visited the Christmas Village in downtown Ogden with Bethany and Samantha:
We enjoyed the lights and the hot chocolate!
Of course, what would Christmas be without baking with Mommy:
Bethany loves being on the counter helping.
Mmmm...cleaning the spoon is my favorite!
And then there was Christmas fun this morning:
Bethany's new play kitchen. She loves it and can cook just like Mommy!
Bethany helped Samantha by opening her presents, too!
Some Christmas cuddles!
So, wherever you are today, Merry Christmas! May it be a wonderful day of celebration of God's love. I believe the great theologian Linus put it best:
It's been fantastic not to have anything to blog about recently. Samantha continues to do well, and hopefully her X-rays taken today will show that indeed no fluid has reaccumulated in her lungs. At her last check-up, she was 9 pounds even.
I know that the main reason you've come to this blog is for cute pictures, so here are some photos of a fun night we had Saturday with our friends the Holladays. We went on a hayride around Layton City Park, which was decked out with Christmas lights. Since my sister Nan is the pro photographer in the family and not me, I did not get any good shots of the lights, but we did get some good photos of us enjoying the ride (and the great hot chocolate the Holladays provided!):
Bethany, Bethany, and Leah getting ready for the ride
Yep. We're pretty cute all bundled up.
Chad, Leah, Bethany, and Tami
All of us before the ride
Today, Bethany, Samantha, Jennifer and I headed to the local mall in hopes of riding their train they have set up for the holidays. It wasn't running. And no hours were posted to find out when it would open. And the information desk and business office didn't know, nor did they have any way to find out. We really tried to get Bethany on that train. But we did have a good time:
Bethany ready to go with her cute pigtails
Bethany eating a hard-earned sucker after punching lots of rubber duckies at the mall arcade. Life is good. It was tough, but I was able to successfully communicate to my 22-month-old that we had to play a game and punch some duckies to earn tickets to turn in for her sucker.
Bethany rode a horse on the carousel. She takes her horse-riding very seriously. She didn't smile once, but she did really, really want to go again when it was over.
So, that's about it! Oh, and Jennifer and I celebrated our third anniversary this past Wednesday. We had a good time, and it was good to reflect on our three years of marriage and realize, once again, that I married way out of my league.
It has been a wonderful week. Samantha came home a week ago today, and I thought I'd give you an update on how she's doing and what our life is like these days.
Many people ask if she has to be hooked up to anything still. Thankfully, the answer is no! Part of the reason they kept her a bit longer at the hospital is so that she would not have to have a PICC line or anything else when she came home. In most respects, it's been just like bringing her home from the hospital the first time: getting used to feeding and sleeping schedules and letting Bethany get used to having her around.
Samantha is required to be on a special formula called Enfaport for eight weeks after coming home (so for seven more weeks from today). Basically, this formula does not contain any of the fatty acids that would be absorbed by her lymph system. The idea is to continue to give the leaky duct some more relief so that the leak does not occur again. We are very grateful that Jennifer found a family online giving away the rest of their Enfaport they had left over from their son's chylothorax (he came by his honestly: heart surgery). Our insurance company has initially denied the pre-authorization for the Enfaport, and we don't really have the energy to write letters and request reviews, so it is definitely a blessing to get almost half of what we'll need for free. The son's name is Luke, and he is a little boy on the waiting list for a heart transplant, so please pray for him.
Samantha goes in for pretty regular check-ups at our local pediatrician's office to check how her lungs sound and to weigh her. She's now gaining weight! As of yesterday she had gained about 3.5 ounces in four days, which is almost on track for average wight gain in an infant. This is a blessing for her mom and dad, because we are no longer required to wake her up every few hours in the middle of the night to feed her (she usually sleeps about six hours at night, which we are very thankful for!). She now weighs 8 pounds, 6.5 ounces; she was 7 pounds, 12 ounces at birth. So, she's still a bit on the skinny side, but she's headed in the right direction and should get that baby fat back in no time at all.
In addition to her check-ups, she'll go in for X-rays back at Primary Children's Medical Center within the next week or two, then again at the end of the eight weeks. If everything looks good after eight weeks, she'll be able to transition to regular formula and breast milk, of which we have a freezer full. And a friend's freezer full. Really. In addition, her immune system is getting back to normal, and we are able to take her places as long as she isn't held by everyone (sorry, Jennifer's eighth grade GO Group girls; I know that's no fun).
So, life is in many ways pretty normal these days. Jennifer and I are tackling all the things that we did not get to for the past month while Samantha was in the hospital and enjoying every minute we can with our wonderful girls. Bethany is SO glad that our family is back in the same house. She now sleeps in her "big girl" bed, and Samantha sleeps in the crib. Bethany is super-helpful, too. She loves to take Samantha's empty bottles back to the sink, and she gets a little too much joy out of helping to burp her baby sister by smacking her on the back. In short, we have gleefully and gratefully traded in the chaos of the hospital for the chaos of our home.
We are so wonderfully thankful for her recovery and the ability to have her home, where all four of us can spend time together after a full 4 weeks at the hospital. A good friend has asked us to fill in some details about how life will look for us in the recovery period now. So, I will describe what we know. I left Primary Children's hospital around noon today with Samantha and headed straight to our pediatrician's office to have Samantha weighed. (She will need to go in for periodic weight checks with her regular doctor and we needed to have a base-line weight using his scale). We will be taking her in for a check up on Friday morning, and then once a week for 8 weeks, depending on how she progresses and gains weight on this special fat-free formula. However, everyone is very pleased with her progress so far and think she will do quite fine! We also will take her back to Primary's to have a chest x ray mid-december and then again 8 weeks from today, to make sure no fluid is re-accumulating in her chest.
She is currently sleeping in her swing at home (the joys of something as simple as a swing! :), attached to nothing and no one! We will not require any home-health care, and for the most part she will be a normal baby from now on. We are encouraged to limit our outings and seriouslylimit how many people get to hold her, but I can take her out when I need to go somewhere, like the grocery store. (Bethany and Mama would go pretty crazy if we couldn't leave at all). However, this restriction is pretty standard for any 1-month old during flu season. I feel very blessed to write that this is our situation. Benjer has taken the afternoon off of work so he can be home with us, which is a huge blessing as well. So, we will just enjoy being a family all together again for the next several hours.
Give thanks to the Lord for he is good and his mercy endures forever ~Ps 107:1
The attending physician has given the a-okay this morning! All that's left is for the surgeon to sign off, which could happen late this morning. Samantha might be going home! We'll continue to update as we know more...
Well, we continue to move towards going home. Unfortunately, she threw up again today, and they would like her to go another 24 hours without throwing up. That means that if all goes well (including a chest X-ray in the morning), she will get to go home tomorrow afternoon. I am hopeful for tomorrow, but in light of the past few weeks, I would not be surprised if the surgeon decides that perhaps we should simply wait until Wednesday morning, just to be sure that everything is okay.
She's doing a pretty good job at eating, and she's now allowed to eat as much as she wants. She's really chowin' down on the formula, even though we're told it's pretty nasty stuff. Her Mom and Dad are ready to be home with her, and it's tough to keep waiting. But we don't have much of a choice, except to choose to wait on the Lord, which we are doing our best to do.
Bethany continues to be a trooper. I think she's a bit worn out, too, especially after a fun weekend with her cousins! Here's how her car ride to the hospital this afternoon went:
We will update the blog tomorrow when we have some news. Thanks for your prayers and encouragement; we're almost there!
Maybe! I (Benjer) just got to the hospital, and learned that we have a plan! They will continue to give her higher amounts of formula: today 30mL every three hours, tomorrow 45mL every three hours, and 60mL on Sunday, which is what she'll have for the next eight weeks. I'm still not clear if we are allowed to let her sleep through the night when she comes home, or if we can let her sleep. The TPN (nutrients) she's been getting through her PICC line will continue to decrease until they turn it off on Sunday. They will take a chest X-ray on Monday to see how she's doing and continue to monitor her, and if she continues to do well, we'll go home Tuesday!
The formula really tastes awful, and now that she's getting more, she's having a hard time finishing it, and she is supposed to have the whole amount to stay healthy. So, they may give her a feeding tube through her nose that will be in for the next eight weeks. She will be allowed to eat when she wants to, but then the "leftovers" will be given to her through the feeding tube rather than force-feeding her. The benefit of this (besides getting the food she needs) is that she still can eat and won't learn to hate eating.
This weekend, much of my family is visiting from Colorado and Minnesota. It's not the laid-back carefree family Thanksgiving weekend we had originally planned since Samantha is in the hospital, but there's not much I enjoy more than giving my mom and sisters a hard time and hanging out with nieces and nephews. Oh yeah, and watching the Broncos win. :-) Plus, Bethany adores her cousins. She wants to do pretty much everything they do, which makes for interesting Monopoly games! So all and all, it's a pretty good day! My sister Nan (a professional photographer from Minnesota) took some amazing photos of Samantha, and we'll have them up with a cool video soon.
Thanks for all the prayers and encouragement! Everyone says that they wish there was more they could do, but we hope you know that the occasional texts and emails really have gone a long way in helping us through this. I was telling my brother-in-law, Rich, how lucky we are to have such great friends and family, including our new friends out here in Utah. We have a lot to be thankful for!
After her three-week fast (she's very spiritual, you know), Samantha got to eat this morning! She got 15mL (about one tablespoon) of formula consisting of medium fatty acids. Sounds yummy to me! She took about 12mL of it, and she's still trying to remember how to swallow. Apparently she's been watching her sister drink, because half of it ended up on her shirt. But, she did get some down, and she seemed really content afterwards and didn't even want to suck on her hand or a pacifier. I can't imaging what it was like to be hungry all that time! She is now having her breathing checked every hour in addition to her monitors, because if she is going to start reaccumulating fluid in her lungs, it will happen fairly quickly. So, pray that there are no leaks! The best-case scenario is that they will let her go home in 48 hours (Saturday) with her PICC line, but there are a lot of factors involved, such as protein levels, blood sugar, chest X-rays, the list goes on. We'll keep you updated; enjoy your Thanksgiving!
Today, Samantha is one month old. When I look at her, I can't believe it's already been a month, even though it should feel like a really long month. It is fitting that we also celebrate Thanksgiving today, because we have so much to be thankful for in the first month of her life. We are thankful not only for Samantha's recovery and healing, but for the friends and family who have loved us each step of the way.
I will update more later this morning, because she is scheduled to eat this morning for the first time in three weeks, so there should be much to report. So until then, enjoy your Thanksgiving morning!
"Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you." -1 Thessalonians 5:16-18, ESV
"I rejoice greatly in the Lord that at last you have renewed your concern for me. Indeed, you have been concerned, but you had no opportunity to show it. I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength." -Philippians 4:10-13, NIV
We finally have a plan :). The x rays look good and so we are moving forward with getting our Miss Samantha out of the hospital and to being a typical baby. Today and tomorrow they will decrease her medicine until she is completely off of it. Then on Thursday they will start her on fat free formula and observe for for 48 hours on that. She will continue to have x rays each morning to make sure the fluid is not building up without the medicine and with beginning to have formula. If everything stays on track, then we will be able to take Samantha home on Friday morning :). Praise the Lord. We are so, so excited for this!
I do not imagine we will have much more to post in the next few days, except maybe about how she enjoyed eating after 3 weeks without having any food! We will let you know as soon as we get to take her home, though :).
We are quite pleased to announce that Samantha is tube-less! :) Yay! Today, they took the left tube out of Samantha's chest and are now monitoring her for the next day or so to see how her lungs do. If it stays as good as it has been, then they will take her off of her medication. Then they will observe her for a few more days without her medication and if all goes well with that, then she can go home! She will still have medical care, via home health care, and we have a few months ahead with some very special formulas and periodic x rays to make sure that her condition does not come back. However, we have so much to be thankful for right now. It is pretty miraculous how this whole situation just turned around unexpectedly when it looked like it was at it worst!
Did you know that one reason why we chose the name Samantha is that it is the female version of the name Samuel, which means "God hears"? (Samuel literally sounds like "heard of God" in Hebrew). Thank you all again for your continued love and prayers for our strong little girl. God has heard them.
Before this quick update, I want to take a minute and thank everyone for your notes, texts, and emails. We get so many that it's become difficult to respond to them all (we even got a card from a friend of a Staley in Tennessee, just to let us know she has been praying for Samantha!), but know that each one is another shot of much-needed encouragement, and Jennifer and I are so grateful for them. We have also been blessed by many Colorado visitors, some already scheduled before Samantha was in the hospital and some who have been/are coming out to see Samantha. This weekend Heather (of Jim and Heather fame) is here to be with us.
Today has begun with good news. The past two weeks have included a couple of "false starts" in Samantha's healing, so I am doing my best to not be too cynical waiting for the other shoe to drop. Samantha's right lung (initially the worse one) has been without a chest tube for over 48 hours, with little re-accumulation of fluid. The blessing is that the chest tube did not come out by doctor's orders, but they took it out in the middle of the night Tuesday/Wednesday because it had become dislodged with the intention of putting it back in the next morning as soon as they could. When they discovered that there was minimal fluid in the lung (they had expected lots with the tube out) they decided to wait and see how things went. Now, the left lung is showing improvement, and the surgeon is considering removing the chest tube there tomorrow if it continues to improve. There are still many steps to go (such as stopping medication and reintroducing special formula) with usually 24-48 of waiting to see how she does between each step, but it appears that she is headed in the right direction as Dr. Rollins, the surgeon, put it.
Another fun update: Samantha has started smiling! It's happened enough times to confirm they are indeed authentic smiles. We will try to catch her in the act and post pictures of it this weekend.
This morning, I read through the book of 1 Peter, and the following was a great encouragement to me (1 Peter 4:13):
But rejoice insofar as you share Christ’s sufferings, that you may also rejoice and be glad when his glory is revealed.
Peter was talking specifically of the persecution that his audience was experiencing because of their belief in Jesus, not about time in a hospital room. But I think it also applies to any time when we experience difficulty in this world, because we know that things are not as they should be. As much as we would like to believe otherwise, and as much as pastors such as Joel Olsteen would like us to believe that we can have "total victory" in this life, the reality is that Jesus himself told us that in this world we will have trouble (John 16:33). What a strange religion that celebrates the suffering and death of the one we follow, and strange even more that we would be called to rejoice when we share in that suffering. I wonder if this is something Samantha can understand at her young age...
To finish, here are two stories that are a couple of highlights from the past two days.
Story 1: On Tuesday, Jennifer and I had dinner at the hospital, wonderful tamales provided by a woman I work with and her family. We needed a microwave to heat our dessert, and we were granted access to the food room on the floor. Apparently, the nurses and young patients at our hospital are well cared for:
They even have a Slushy machine!
Story 2: Samantha had been moved to the Pediatric ICU early Wednesday morning, and I still had not seen her as of Wednesday afternoon. I came down to the hospital and had only had a lot of sugar and caffeine to eat/drink that day and really needed something nutritious, because I really didn't feel well. There was a line in the cafeteria in the middle of the afternoon, and a mom who saw that I was anxious to get something and go told me to order first, saying "we've got time, I've seen my little boy today." It was a small mercy and a very welcome kind gesture from another parent who also was trying to eat and go upstairs to see her child.
Well, it appears I've taken a bit more time/space than I thought I might. Students in Oasis on Sunday mornings are quite used to this.
I would just like to start this update by saying Samantha is quite loved and admired here in the hospital. Everyone who comes in, whether nurse, tech, doctor, surgeon, chaplain or other, says she is quite cute and wonderful. She is a very well behaved baby, too :)
After an ultrasound showed that only a little fluid had built back up in her right lung, they decided to keep the chest tube out of her right lung. Which I think is a praise, but I am just a little hesitant yet because her respiratory rate has increased throughout the day. Also we're not sure how her left lung's chest tube is doing; we're waiting for another x ray in the morning. Since her respiratory rate is high they are keeping her in the PICU another night. The surgeons are keeping a close eye on her, but we just don't have any more answers yet. Sigh.
They decided not to put another chest tube in her right lung, and see if the fluid accumulates, which they are hopeful it won't. However, since there is a decent chance that the fluid will come back, which would mean she might need a new tube in her lung overnight, they are going to keep her in the PICU as a precautionary measure. We will reassess in the morning after seeing her x ray and talking to the doctors & surgeons again.
Miss Samantha is having a terrible time with her chest tubes. Yesterday the right tube got dislodged somehow (perhaps during an x ray) and they had to replace it (again). Then last night, they noticed that the replacement tube was not secured they way it should have been and was coming out. They became very concerned because where the tube was and where the holes in the tube were, she was getting some air in her lung. They took her down to PICU (Pediatric Intensive Care Unit) last night to remove it and be able to keep a very close eye on her. With the tube out, she could re-accumulate enough fluid to put her back into respiratory distress, and they couldn't just replace it easily because Interventional Radiology (where she has had the tubes put in) are not in the hospital overnight. However, she had a good night and the x rays have shown that she isn't re-accumulating fluid right now and the little bit of air that she did get into her lung has absorbed. She is doing very well right now.
I spoke with the surgeon in charge of her case this morning and he is speaking with some of his colleagues about which course of action they should take. He is hopeful that they will not need to replace the right chest tube because the x ray didn't show fluid build up in the 5 hours the tube had been out. I am not as hopeful because she has not had even one day of the right one decreasing in the amount of fluid, never mind stopping altogether. However, it is possible for this to be an answer to prayer. Meanwhile the left lung has doubled in its fluid output over the past day. Sigh.
I am waiting to see what the surgeons will decide to do, but when our surgeon left our room this morning he was leaning more towards leaving the tube out for a day and seeing if it will re-accumulate. If it does, then they will put in bigger chest tubes (so hopefully they won't get clogged again) and suture them to her chest to secure them. And they will move towards surgery. He may decide, however, to put tubes in no matter what this morning, because he agrees the chances are pretty high that she will re-accumulate the fluid. We will keep you posted. We are pretty certain that she will go to surgery probably on Monday at this point. it is in the Lords hands.
We are in the PICU until they decide what they are going to do (tubes or waiting). If we are waiting, we will go back up to our regular room, and if they put tubes in, then will go back up to our room after they put the tubes in.
A good friend of ours from Colorado suggested that we write about what our day is like with Samantha, as people have questions like if we can sleep here or if we can hold her as much as we want. So, this is what it is like for us here at Primary Childrens Hospital:
The hospital is on the side of a foothill of the Wasatch front and overlooks Salt Lake City. It is very gorgeous to drive here and they have a courtyard we can go out on and look at the mountains and the city. Samantha is in a private room with nurses who have a very low ratio, either one nurse to two babies or one nurse and one tech for three babies. She gets excellent care and has avery attentive doctors and nurses. She usually gets her blood drawn at least once a day, if not more, and almost always has one chest x ray. With all that and her vitals being checked every two hours, our room seems to be pretty busy!
We are able to have visitors that are 14 and older, but they must wear a mask and a gown. All the staff who enter her room, especially if they are going to be touching her, must wear a gown, gloves and mask. This is because she is put on what is called reverse precautions, which means that she won't infect anyone but they could infect her very easily. Her immune system is pretty much depleted at this point because of type of fluid they are draining from her lungs, so everyone has to be very careful. However, she is able to be held whenever she is not having medical care done. It is a bit tricky, though, because she has about 9 tubes and wires coming out or off of her [medicine, nutrition (TPN), fluids, two chest tubes, O2 reading, heart rate, respitory rate]. However, as long as we pick her up carefully and don't get the wires too tangled, it's pretty easy to hold and cuddle her as long as we want. There is a very comfortable rocking chair and a fold out chair that is somewhere in between a cot and a fold out couch for us to sleep on at night. Benjer and I are taking turns sleeping here, so one of us is always here with her at night. Two of us cannot sleep here in the room, though; there just isn't room and the rocking chair is very bad for sleeping on, Benjer found out one night.
Our church family here has been amazing in helping us figure out meals. A lot of people have been either giving us money to buy meals here at the hospital, giving us gift cards or making us really good homemade food. (Benjer is bringing me some tamales and chocolate cake for dinner tonight, I've been told :). Since the commute is about an hour one way, this is helping us enormously. I don't have to worry about shopping, dinner OR doing the dishes now! The cell phone coverage in the hospital is spotty, but in our room we have enough coverage to send texts and talk if we stand by the window. If you all have any more curious questions please let us know. We'd be happy to let you know more about our life here, and how and what Samantha is doing.
Jennifer had the distinct pleasure of getting to meet with Samantha's attending doctor, pulmonologist (lung doctor), and surgeon all at once! This hasn't happened before and sometimes when I talk to one they will say they have to check with another doctor to be sure of something, so it was nice. Well, Samantha's left lung is back up to outputting a decent amount of fluid and the team agrees that she is just not responding they way they would like to see. They are continuing to increase her medication in hopes that things will dramatically change soon, but the surgeon said that generally if people are going to respond to this type of treatment, it will be in the first two weeks. The surgeon said that if it doesn't improve a lot by Friday they will then be looking at surgery, probably for the weekend or early next week. We won't have answers to specific questions about surgery (like when, how, recovery period, etc) until they are sure that is what they want to do. So, we are asking for your continued prayers this week that things would change and her body would start to heal itself in the next few days.
Meanwhile we have decided to send Bethany home to Colorado today to spend a week with her grandparents and extended family. She flies out this afternoon with Jennifer's sister-in-law and will fly back with Jennifer's dad this coming Sunday. We feel this will not only allow us to spend the time with Samantha that we really need to, but will be less stressful for Bethany -- she's going to have a blast! :)
Little Miss Samantha does not seem to be having a very good time with her chest tubes (not that I can imagine someone really enjoying them!). Both tubes were clogged again today and the attempt to unclog them was unsuccessful, so she went down to surgery again and got new ones put in. However, they have changed a couple of things about her care, including giving her a medication that goes in the tubes every day to keep them from clogging. Hopefully this is the last time we will have to go through this.
A little bit of good news is that the left lung has significantly slowed down how much fluid it is outputting, so perhaps this week we might be able to look at shutting it off and possibly taking it out :). We will see...
Thank you again for all of your prayers and kind words you have sent us during this time. They have meant so much to Benjer and I. Much love to you all!
I had forgotten to post this earlier; last Sunday, Bethany was allowed to visit Samantha. I was in Ogden with her and Jennifer called me from the hospital to let me know the charge nurse would allow Bethany to visit for a few minutes. I'm glad we took advantage of the opportunity, because now that Samantha is at a greater risk of infection because of her lymphatic fluid being drained out of her, there will be no more exceptions.
I (Benjer) got to spend much of the day with Bethany and her cousins Emma and Madeline. They are out visiting from Colorado with their mom, Joelle, which is a lot of fun! It was great to have a fun day and to catch up with Joelle during dinner.
Here are some photos from this morning. I took the girls to the Treehouse Museum, and we all had a lot of fun.
Trains! It's the first place Bethany asks to go when she walks in the door. That's my girl!
Emma and Madeline playing the huge drum.
Emma and Bethany having a great time making lots and lots of noise.
Since today's update didn't have much to it, here are some thoughts for today. I (Benjer) have found that I enjoy the drive back and forth to Salt Lake City each day (about 45 minutes). It gives me some time to process what's going on, pray, and catch up on sports radio. (I know, the last one's not very spiritual, but I tell our youth they don't have to pretend to be something they aren't, so why should I pretend?) Anyways, two songs that I have enjoyed this past week are "Season" by Jenny and Tyler (www.jennyandtylermusic.com) and "Blessed Be," originally by Chris Tomlin. I loved the songs before Samantha came to the hospital, but now they have a special meaning for me.
The Psalms are some of my favorite passages of Scripture, because they are honest songs written to God, often times asking God tough questions about difficult situations the authors and/or the Israelites were facing at the time. I've never been one to sugarcoat things, and as a believer I've always felt a bit raw and really rough around the edges. That's why I love the Jenny and Tyler song mentioned above. I don't know the situation that this song arose from, but it reminds me that we can bring all questions to our God and ask him to use every situation--even the tough ones--to help form us more and more into the image of Jesus.
Well, before this turns into a full-fledged sermon, here's "Season" by Jenny and Tyler. I hope it's a good break for you.
after eeg’s and mri’s, i can’t explain why You’d put me through this and when hamlet’s lines are filled with rhymes, i have a hard time seeing what Your plan is
You say all things work together for my good You say be patient but i wish You would
show me what this season in my life is for i’ve been trying to seek You, seems You're shutting every door show me what this season in my life is for ‘cause i want so much more, so much more
the doctor called to say today the medication isn’t going my way Your paper doesn’t speak to me, reads red ink in every margin I see
You say ask and seek and knock and you will find why won't You calm the worries on my mind
show me what this season in my life is for i’ve been trying to seek You, seems You're shutting every door show me what this season in my life is for ‘cause i want so much more, so much more
work your renewal through my soul bring me through the fire as gold Living Water come and pour over me wash me clean
show me what this season in my life is for i’ve been trying to seek You, seems You're shutting every door show me what this season in my life is for ‘cause i want so much more, so much more
Not much to update today. I wish I had more to post, but we're just kind of waiting. We get several visits from doctors each day and learn about the many possibilities, but essentially we are just waiting and praying. Specific prayer requests include praying that the fluid decreases (which would help her go home earlier, maybe by Thanksgiving!) and strength for Jennifer and me. We continue to be grateful for everyone's texts, calls, notes, and kind words at church. Thank you all for your encouragement!
Many of you have been wondering about how Bethany (above outside the hospital near the water feature we frequent), Samantha's older sister, is doing in all of this. She is doing remarkably well. She picks up on everything very quickly, and now knows that when she's with Mama, Daddy's probably with "Baby." For the week or so that Samantha was home, she loved, hugged, kissed, and forced pacifiers upon her so much that we were worried how Bethany would do with Samantha not in the house. Well, Bethany asks about her all the time, and we make sure to draw Samantha pictures and bring her leaves from Bethany's favorite park. She's an amazing toddler, and he laid-back personality is making this a whole lot easier on us. (She even recovered from seeing a deer that was hit by a car, but that's another post.)
Yesterday, Bethany and I went to the aforementioned favorite park, Beus Park (our family calls it the "duck park"), one of Bethany's favorite places on Earth. I'm sure she enjoyed the outing, but it was also really good for her Daddy to spend some fun time with here:
Many, many different kinds of birds are apparently flying through northern Utah as they migrate. I couldn't really tell Bethany too much about it, but I told her that her Uncle Jim would have been able to explain all the different kids of birds and what they're up to. We did learn, however, about how the leaves are falling. (Bethany points at an empty tree above, "up!" then at a leaf on the ground, "down!")
We sure love swinging! We would go swinging in just about any type of weather. In fact, I'm sure we will bundle up and head to the park this winter no matter how cold it gets, as long as it's not wet.
A beautiful scene from the pond. We have a routine. First, check out the birds. Then, head to the park to swing and slide. Next, come back to the pond and pass a stream that we have to put our hands in to see just how cold it is. Finally, we finish off our walk at this site collecting rocks and throwing them into the pond. Today, with so many birds, the rock-throwing attracted many visitors who swam over to disappointingly discover that we were dropping rocks, not bread.
So, continue to pray for Samantha's sister, Bethany, who is certainly concerned, but provides a lot of laughter and comfort for her parents.
Well, Miss Samantha did not have a great day today. She is fine now. The fluid coming out of the chest tubes really started to taper off last night and this morning it seemed hopeful that at least one of the tubes might be ready to be shut off. So, they tried it and discovered that both lungs were filling up with fluid when turned off. Then they discovered that at least one tube was clogged and they were unable to get it unclogged. Meanwhile little Samantha's breathing became quite labored again and she was put back on oxygen (her least favorite thing in the world, I think). Our doctor talked to the surgeon and they decided to sedate her and change out her chest tubes. When they were changing them they did find quite a bit of fluid in one lung and some in the other that they were able to drain and now we're starting again. So, as I said, Samantha had a rough day! But, she is now sleeping very peacefully and no longer needs oxygen.
I wish you all could see how beautiful she is. She is just perfect. Every nurse, tech & doctor that comes in talks about how cute she is and what a good baby she is. We're proud parents :).
(I should also let you all know that now that we are doing this treatment and mostly playing a waiting game with it all, we may not have much to post in the upcoming days. We promise "no news" means that everything is still okay and we are just waiting to see if it heals on its own.)
We have some good news and somewhat bad news about Samantha this morning. The somewhat bad news is that her medication (which she is currently getting through a peripheral IV) is incompatible with the TPN (the nutrition she gets through the PICC line) they are giving her. Normally what they would try to do put in a double lumen (a double PICC line) so that she could get both through the PICC line, but her veins are too tiny to put one in. So, she has to keep the peripheral IV in, and they won't send her home with a peripheral IV. So, no matter what, Samantha will have to stay in the hospital for a minimum of 2 weeks (so perhaps coming home around 11/21).
The good news is that the fluid has finally started to slow down a lot! Yay! If it continues to slow and eventually cease, then we can take the chest tubes out and have a much more comfortable baby girl. Also, the charge nurse yesterday made an exception to let Bethany come and visit her sister. It was really good for her to see where she was and give her lots of kisses (no hugs yet, though :). That was a blessing for Mama and Daddy, too.
Hey, all! This one's just a quick update. Samantha's doing well, and she's resting today better than she has since she got here. She's a lot happier now that she has nutrients coming through her PICC line! Before they'll even consider sending her home, Samantha needs to have only about 5 or 10 mL or less of fluid coming out of her lungs during a 24-hour period. She's an over-achiever; she has that much coming out every hour! ;-) We wish we had some prospect of going home within a few days, but are thankful that aside from the many tubes she's attached to, Samantha is just hanging out and feeling okay.
Chad and his girls Bethany (Faith) and Leah came down to Salt Lake yesterday to go to a model train show with Bethany (Grace) and me. (You think trying to read a blog post about two Bethanys is confusing? You should try to chase two Bethanys around a convention hall!)
Bethany and Bethany in the train! Definitely the highlight of the day.
The three girls Leah, Bethany, and Bethany in the train.
They had a really cool Lego exhibit. These photos are included for Neil's benefit. :-)
I so would love to have a Lego train.
Bethany Grace, the youngest of the group, somehow managed to lead Bethany Faith and Leah around!
Leaving after a fun afternoon!
So, I'm now motivated to get out my LGB (G Scale) train and set it up for Bethany and Samantha. You know, since we don't have much else going on in our lives right now... :-)
Here are some updates that we have today on Samantha, many of which are very positive:
The doctors are almost sure that she has a condition called chylothorax. Essentially, a duct is leaking lymphatic fluid to the lung, which is what made it difficult for Samantha to breathe. This is a pretty uncommon disorder in itself, and it is even rarer that they do not know of a cause, such as complications from a surgery or lymphoma or leukemia. In this case, not having a cause is a very good thing, compared to the alternatives.
The surgeon and Samantha's doctor believe that the thoracic duct can heal on its own. So, to reduce the lymphatic fluid, Samantha has a PICC line (an IV that snakes from her hand to her chest) that will give her nutrients, because not ingesting anything will reduce the lymphatic fluid. If all goes well, within two weeks it will become clear that the duct is fixing itself. If after two weeks, however, the duct is still damaged, they will consider some more aggressive forms of treatment, such as surgery.
Samantha currently has chest tubes in her draining fluid from her lungs. She cannot go home with these tubes in, but her doctor thinks there is a chance that within a few days she will no longer need to have fluid drained away from her lungs, and that we can take her home and administer her medication and nutrients through her PICC line ourselves. However, this all depends on whether she stops having so much fluid accumulating in and drained from her lungs.
The results from her CT scan this morning will confirm all this for the doctors, but they are pretty confident they have an accurate diagnosis.
The great news is that now that the fluid has been drained away from her lungs, she can breathe without oxygen. They have removed the tube, and she is sleeping peacefully as I type. She looks as good as she has for the past few days. We are praying that she gets to go home sooner rather than later, but we are glad we finally have some answers and a way forward.
There is so much to be thankful for right now, even though there are a few uncertainties in the next couple of weeks as we see how Samantha's body starts to heal. Thanks to all for your prayers, calls, texts, emails, and visits. We will continue to give updates as we get new information, so keep checking back here!
Update on Saturday Night: The CT scan showed a normal heart and lungs, so everything's on track at this point!
Well, Jennifer said I would make people cry, which is not my intent, but I thought people would like some photos of Samantha Joy, some from before Wednesday:
Bethany is a huge huge help when it comes to brushing Samantha's hair!
Well, this picture wasn't as huge of a success as we probably wanted it to be, but here are Samantha and Bethany in their sister shirts!
Thanks for continuing to pray!
Nana with Samantha. It's so nice that she's able to be held a lot!
Bethany picked out a doll for Samantha to have with her in the hospital.
Last week was a "Joy"-ous event as we welcomed Samantha Joy into our world, then welcomed her into her home two days later and introduced her to her big sister Bethany (see below for the video). Early this morning, Samantha Joy returned to the hospital--albeit a different one down in Salt Lake City, about 45 minutes away from our house in Ogden. She developed noticeable breathing problems yesterday, and we took her to urgent care at 11:00pm. By 12:00am, Samantha was on her way to Primary Children's Hospital in Salt Lake City in an ambulance with Mom in the front seat, and Daddy following behind in the van. We've had a long morning of lots of tests, and to make a long story short, the doctors aren't sure why she has some fluid in her lungs, but they are today looking at whether it's a lung infection or a heart problem. We will be here at least until tomorrow, but probably into the weekend.
So, we covet your prayers, and we are thankful for the calls and texts we've received so far. We'll do our best to keep everyone up to date.
This outfit was originally given to Bethany when she was born from some good friends of Jennifer's parents who live in England. Notice what the tag says; and I was about to light it on fire!
I can't believe Samantha's only a few days old! It feels like she's always been with us, and we can't imagine life without her. Here are a few photos, including some pictures of Bethany meeting her.
Chad with the new girl. I think he has the baby bug.
Tami (Chad's wife) with Samantha. She has the baby bug, too. Cute newborns will do that! We are so blessed to have these guys as friends here.
Mommy enjoying some time with Samantha in the hospital.
Daddy loves sleeping with our new girl!
Allyse loves Samantha, too. She pretty much loves all babies.
Nana (Jennifer's mom) meets Samantha! She was very patient at the airport waiting for her son-in-law change the minivan's tire, delaying her first meeting with her newest granddaughter.
Mommy and Samantha are ready to head home from the hospital!
Kiss! Bethany is a bit concerned about our new addition, but adores her and LOVES to kiss and hug her...and shove pacifiers in her mouth, whether Samantha wants them or not. :-)
Happy family!
Bethany loves to hold Samantha. She is the BEST big sister.
Yep. Proud Nana!
Bethany insisted on eating snack today next to Samantha, who was hanging out on the floor.
Big sister makes sure everything is okay with the squeaking baby in the crib.
Leah meets Samantha!
Bethany (Holladay) meets Samantha. Bethany had such a great time with Leah and Bethany Faith tonight. I think she needed some friends to play with after a very confusing two days with her new sister.
Bethany is enjoying Mommy always being available for lounging on the couch as she recovers!
Nana and Samantha
I don't think there has ever been a cuter post-bath time look.
Thanks for visiting! Visit often for updates on our family, or goofy stories about Bethany and now Samantha! By the way, while Benjer serves at Washington Heights Baptist Church, the opinions expressed on this site are the opinions of the bloggers, and not necessarily those of our church.
We enjoyed the lights and the hot chocolate!
Bethany loves being on the counter helping.
Mmmm...cleaning the spoon is my favorite!
Bethany's new play kitchen. She loves it and can cook just like Mommy!
Bethany helped Samantha by opening her presents, too!
Some Christmas cuddles!
