Bennett Has a Fever

Bennett has a fever, and we don't know why just yet. His labwork didn't show any infection, which is good, but we still don't know why he has fever. I am praying that the cause of the fever can be determined and that it will go down. He doesn't feel well and is having trouble sleeping. I could see in his little eyes today that he just wasn't himself, although he looks happy in this picture while I was talking to him.



Thank you all for all your comments yesterday. I can't tell you how much it meant to me to read each one and know you are still praying, and some of you have been in similar situations as ours. Thank you for sharing my torn heart as I balance life between my littlest one and my three oldest children. I can't wait to have this little baby boy home so I can have them all under one roof!




Happy New Year's Eve,

Just Being Real

I just need to write to express my feelings. As we approach the beginning of Bennett's 7th month in the hospital, I find myself struggling. Maybe I'm just scared, maybe I'm just exhausted, or maybe it's both. Feel free if you are reading this to stop here because this is just me venting and has no new updates on Bennett or Owen, Lily, and LM. I don't wish to be judged or told by random commenters that I should be grateful Bennett is still alive (I am very grateful for every single day he is here with us and how far he has come as well as for each one of my children we have been blessed with, and that is part of the reason I am struggling. I want to be with him at home so much it hurts. I believe anyone who has read my blog very long or knows me personally would agree we are thankful and love our children dearly). I just need to get this out because it's really getting to me.

Yesterday was a tough day. I felt so emotional and wanted so much to be with Bennett. I think because he is so much more interactive now and is starting to really respond to different people differently, I want even more to be the one taking care of him all the time and can't, and that is making my heart sad. I think of my precious big kids and how hard it has been for them to form attachments with us, and I realize that Bennett will also have to learn to attach to us after having multiple caregivers for so long, and that is frustrating. I am so thankful he is here, and it's so very hard being away from him. I know in my heart we are supposedly getting close to the end of this part of the journey, but it scares me to think of my tiny little baby going through surgery, going back on a ventilator, having to come off a ventilator, something happening to him like a collapsed lung like it happened to a friend's baby when he had this surgery at the same NICU, me not being able to be there all the time, etc etc etc.

It's hard leaving our big kids and Jim each afternoon to spend time with Bennett and hard being with Owen, Lily, and LM and away from Bennett all day when I also want to be with at the hospital taking care of Bennett too. My heart feels like it is stretched across 20 miles all day and night. It breaks my heart when Owen asks me almost daily now, "Mommy, can you just stay home tonight?" or "Do you have to leave, Mommy?" I feel Owen needs more of a challenge and interaction with kids his own age and to be involved in more activities away from home (like another preschool class in addition to his three hour pre-k class and one hour gymnastics class), but we not only cannot afford that right now because I'm not working, but we also have been encouraged to keep our big kids out of school/church/daycare settings to prevent illness that could make Bennett stay hospitalized longer or return to the hospital once he comes home. My two toddlers have each other and are developing right on track if not ahead of schedule for their ages so I feel like they are getting what they need, but so often I feel like Owen could be doing and learning so much more if he just had the opportunity. He is so bright and needs to be challenged more and needs to play with kids his age more to help his language development and overall development.

Do any of you who homeschool and have younger children feel that way?

My heart feels torn in so many directions. I miss Jim. I miss all of us being together at the end of the day and not doing "shifts" all the time. I wish Jim didn't have to work a second job right now so we could have a full day together without him having to go to work. I am thankful that job is there for us right now though while I'm not working so I don't complain much. I just miss him. We miss Bennett. There is no date in sight yet for Bennett's surgery or for him to actually come home, and it feels like it's never going to happen sometimes. Jim and I are both tired. We haven't left our kids to go out to just spend time together more than a couple of times (going to see Bennett while his mom was in town) in 3 1/2 years. We still don't feel like Lily's attachment to us is strong enough to just leave her with someone other than a couple of people she knows very well, and unfortunately, they work full time and don't live close to us. We are just tired and look forward to eventually having a sense of normalcy in our family's life. While waiting for that day, we are definitely enjoying each day until then. We are just tired and torn and praying that day comes soon.

I just want to hold my baby in my arms in our house and finally be a family all together.

We are all so ready for Bennett to be able to come home.

Change of Plans (Again!)

So, Bennett's surgeon is not going to be at the hospital the rest of the week so he will have surgery next week as originally planned. We are okay with this change because it allows Bennett to get even bigger! I will post details when I know for sure when surgery will be!

Surgery This Week!?!

Bennett's doctors have decided to go ahead and do his surgery this week. We don't have an exact day/time yet, but they feel he is ready. In this surgery, he will have one inguinal hernia repaired, a nissen fundoplication, and a g-tube placed. We are nervous but also excited because this surgery is Bennett's next step toward coming home! His doctors are optimistic that he will have surgery, recover (we don't know for how long... could be days or weeks), and then go home. He will then be closely monitored until it is necessary or he is much bigger and can have the mass removed from his lung and his other hernia repaired.

Bennett is getting so big. He is 7 lbs 4 oz and between 19 and 20" long! He is starting to grow out of most of his preemie clothes and into newborn sized ones. He is becoming so interactive and loves to have a "conversation," "aaaaaa"ing back at me when I talk to him. I bathed him tonight, and he was so cute staring at me and listening to me talk to him. I love bathing him, and he loves sitting in his little tub while the warm water is squeezed over his tummy and head. He likes his little head massage too :)




After his bath, I put lotion on him and fixed his hair--it loves to stick straight out!--and dressed him in a new gown his Meme gave him for Christmas. He looked so adorable! He was asleep within minutes in my arms. I love just holding him and looking at his sweet face while he sleeps. He has come so so far.





Thank you for praying with us leading up to Bennett's surgery. We had a wonderful Christmas and hope you did too! I will try to write a Christmas post tomorrow!

*update on Levi*

My 2 year old cousin Levi is out of surgery and in recovery. He had a blockage that was causing his continuous vomiting. The surgeon removed scar tissue in several places and had to remove a tiny piece of the intestine. He will be in the hospital for 7-10 days recovering from surgery. Please keep him and his family in your prayers!

Merry Christmas from Our Family to Yours!!

A Christmas Prayer

We have had a wonderful Christmas! I have pictures and stories to share but need to go to bed tonight because I barely slept at all the past few nights!

BUT....

Before I go, I'd like to mention something to everyone reading this. My cousin's little boy Levi is in surgery right now. Surgery. On Christmas Day. He's 2 years old and has been fighting a form of kidney cancer (Wilms Tumor) for a while now. He started vomiting 2 days ago and couldn't stop. He was taken to the hospital and now is in surgery. I don't know all of the details just yet, but I do know that I cannot stop thinking about him and his precious family.






Despite being in the hospital on Christmas while their sweet little boy is in surgery, they are choosing joy and prayer over sadness or anger and spending time together as a family in the hospital. I have prayed throughout the past couple of days for Levi, and I would like to ask you to include him and his sweet family in your prayers tonight too.

Many thanks and much love on this Christmas night,

Waiting for Christmas

Ahhh! Bennett weighs Seven Pounds Two & 1/2 oz!!!!

Bennett is almost 7 lbs!!

A Funny Lily Story

Yesterday we were getting into our car to go to the grocery store, and Lily heard a crow in a nearby tree. She gasped and looked at me with her eyebrows raised. I asked her what she heard, and she said, "A Monkey!" After laughing to myself, I told her it sounded like a monkey, but it was a bird called a crow. She said, "Noooooo, monkey." I explained again and tried to show her the crow in the tree," and she said, "Bird hurt. Bird sad. Kiss?" and blew a kiss into the air for the crow. The crow stopped making noise, and Lily said, "Better!"

Those Big Eyes

I have had a lot of comments about how big Bennett's eyes are. I went back and looked at some of my and Jim's baby pictures, and I had big eyes too when I was little! The first picture is of me with my sister when I was 2 1/2, the second was taken when I was 3 visiting Santa Claus, and the third was when I was 4. I think my sister's eyes also look big for a baby so I guess it just runs in our family.








:-)

A Special Day x 2

Fourteen years ago today, a college guy took a high school girl to a Christmas formal. They danced all night with friends, yet it felt as though they were the only two people in the room. As they danced, they fell in love, and they ended the date with a kiss.

Fourteen years later, we are still dancing and so in love.

Happy 14 Years Together, Jim! Thank you for choosing me to be your dance partner for life. I couldn't ask for a better husband and father for our children. You are incredible in every way. I love you bunches!

Also today is a special day for another reason...

On this day ONE year ago, Meme and I brought our precious Lily home from South Korea. Her Daddy and big brother Owen met us at the airport, and Jim got to hold her for the first time that night. She settled in so well at home, playing with her new toys and following her big brother around from day one. We are so blessed to have Lily and thankful for everyone who helped us bring her home.

Happy Family Day, Lily!! We love you sweet girl!!

Bennett's Picture(s) with Santa and Today

A group of women from a local church made this little hat and red blanket for Bennett.

These two are from today. He was so cute watching his mobile I had to share these too :)


Bennett is so close to 7 lbs!! He is growing so big and strong and is such a sweet boy!

Santa Claus Visits Bennett

Santa and Mrs. Claus visited Bennett today! I haven't seen the pictures yet but hopefully will tomorrow and will post them when I do! Bennett looked so precious in his Christmas outfit! Here's a little peek :)

A Year Ago Today: Happy Gotcha Day, Lily!

A year ago today, my sweet little Lily was placed into my arms, and I became her Mommy forever and ever. What a bittersweet day that was. My heart was so full of love and joy to finally hold my little girl, but her heart was broken and aching for her foster family who she loved so much.

Click on the link below if you want to read about that day.

LILY'S GOTCHA DAY

Lily Soojung,

you are the brightest, most loving, fiestiest little 2 year old girl we know, and we love you more that we could ever say.

You have changed so much this past year!

You can name all your letters and some of the sounds they make.

You love to count and can almost count to 20!

You know all of your colors, you love to sing songs, and can really bust a move!

You love to comfort your brothers when they are sad and to tell Mommy when they're being bad!

You always run to us with open arms and ask for kisses and hugs anytime we have to say good-bye.

You adore your baby brother Bennett and want so much for him to come home so you can take care of him.

You can spot an airplane in the sky anywhere anytime.

You hear babies everywhere we go and like to tell Mommy if they are sad or happy, awake or asleep, and to say Hi to them when you see them.

You love other children and like to say "Hi Boy" or "Hi Girl" if you don't know their names.

You LOVE Dor@ the Explorer and have TWO Dora dolls you must have to sleep with every night.

You didn't so much like sleeping when you first came home, but after about 9 months, you started sleeping through the night! We all rejoiced when that happened because we and you were so much happier during the day!

You have a huge vocabulary, and we giggle every time you say a big word like "ambulance" or computer."

You are talking more and more every day and using 3-word combinations a lot now!

You have learned about Christmas and loved decorating our tree.

You celebrated your 2nd birthday last month and had a party with your big brother and greatest idol Owen.

You are such a princess and such a tomboy all in one.

You love necklaces and purses and shoes and hairbows.

You love to roughhouse.

You are fearless at times and love to literally dive right into new things.

You love to squeeze your Daddy's nose and say "Honnnnk!"

You love to hold Mommy's hair when she carries you.

You give us the tightest hugs and the sweetest kisses.

You have a smile that lights up any room.

You love taking baths and coloring all over the tub with bathtub crayons, trying to make smiley faces and write all of our names.

You want so much to play board games with Owen and do your best playing Go Fish.

You love to eat and eat just about anything!

You are so funny and love to make people laugh.

You bring such joy to us, and we are excited to continue to watch you learn and grow as our sweet baby girl.

We love you,
Mommy and Daddy

Four New Photos

Answered Prayers

Bennett had a swallow study done this morning, and poor little guy aspirated multiple times on various consistencies and in various feeding positions. Sweet boy will have to be NJ tube fed until he is bigger and can protect his airway better. We are curious to see if his breathing will improve now that we are keeping milk out of his airway and lungs. We hope so! We don't have a size that Bennett has to reach for surgery, but his surgeon would like to see his oxygen needs go down along with his growth. Last night Bennett weighed 6 lbs 11 oz! Yea! He's moving right along in that department :)

When I visited Bennett today, his room was decked out with lots of fun things. He now has a swing, a glider, and a vibrating bouncy seat. His nurse today said he took a long nap in his swing this afternoon, and he was enjoying his bouncy seat when I walked in to see him. I scooped him up and got some snuggle time for a few hours, and it was so sweet. I love just holding Bennett while he sleeps in my arms. When I look at him, I can hardly let myself fully believe I carried him. He was in me? Really? My pregnancy was 26 weeks, but I had just started to feel Bennett move, my belly felt pregnant, and I had just let myself start to believe I might stay pregnant and not lose this seventh baby of ours. It's been so long ago now that we welcomed him into the world, but when I look at that sweet face and see reflections of his Daddy and me, it makes me tear up, and I have to take a deep breath. I remember the night of my surgery, hearing his heartbeat nearly stop on the heart monitor twice before my doctor said we were having a baby "tonight," listening to the team giving him CPR when he coded in the delivery room, seeing him for the first time, each day we stood by his isolette listening to the beeps of the ventilator, waiting to hold him, watching as two of his NICU neighbors passed away, praying he would make it through pneumonia three times, seeing him extubated for the first time, seeing his bare face for the first time, holding him for the first time, seeing him in clothes for the first time, breastfeeding him for the first time, giving him a bath for the first time, all of the ups and downs, the many many tears we've shed wondering if he was going to make it ... And then I think of how far he has come. He may not be coming home yet, but he is a living answer to prayer, many many prayers. He is strong, he is developing well, and he is happy. Thank you for all of your prayers for Bennett and for our family. We are so thankful for each one.

Stuck in the NICU

Bennett's surgeon doesn't want to do anything until it is absolutely necessary, and he doesn't feel like any of the surgeries he needs are urgent and that he would rather Bennett be much bigger and stronger before going under anesthesia and being intubated and having to heal from surgery.

So, we are stuck in the NICU for who knows how long. Today is day 154 I think? Only God knows what is to come. We are glad Bennett doesn't have to have surgery yet but wish he could be home.

Deck the Blogs!

I am loving my Christmas blog design! I was wanting a change to update all my pictures and get a new background and banner, but when I saw Danielle's pre-made templates, I decided I had to get one!

Would you like to change the look of your blog without spending a lot of money? Danielle is offering her pre-made Holiday Templates to my blog readers for just $15!!!!



Be sure to follow Danielle's blog for updates on giveaways and new designs too!

Stay tuned to my blog for a special blog design offer after Christmas!

Feeling Better

I think Bennett is feeling better. His color is better, he is more relaxed and isn't arching his back, he isn't coughing as much, and he is more content. He had a wonderful day today. His nurse said he was so good and sweet and seemed so much happier. We feel like the NJ tube is helping his reflux a lot. He still seems to have some at times, but it's nowhere near the way it was.



When I got to the hospital today, Bennett was wide awake and ready for some interaction. He was so cute looking at me like, "You can pick me up now, Mommy!" I picked him up and rocked him for two hours. He stayed awake almost that entire time, only falling asleep while I talked with his doctor. He tends to fall asleep anytime I start talking a lot!

Speaking of Bennett's doctor, we had a nice conversation today about what's next for Bennett. We are waiting for his surgeon to decide if he feels like Bennett is strong enough for surgery. Bennett's attending would like to see him have his hernia repair, Nissen, and G-tube surgery (all at the same time) and then recover and go home as long as his lung mass isn't affecting him adversely. I think the problem is that no one can really say just how much the mass affects Bennett's breathing. If he were to go home, he would need to be monitored closely and grow until he was bigger and stronger and/or he has to have surgery on his lung because his breathing worsens. It's possible that more testing will be done (such as CT or MRI on his lung) before any surgery is scheduled, but we are waiting for his surgeon to make that decision. There is always the chance he may want him to stay in the hospital and wait for any surgery or to have these surgeries done and wait in the hospital for his lung surgery when he is bigger. Oh, how I hope that isn't the case, but whatever Bennett needs we'll do. He has come so far, and we don't want to risk too much if we could just wait longer and him have a better chance of a better recovery and future.

When I put Bennett back to bed when I was getting ready to come home tonight, I pushed the button to turn on his mobile, but it didn't work so I thought the batteries had died. Sweet little Bennett just kept staring at his mobile wondering why it wouldn't work! It was like he thought if he looked at it long enough, it would spin around. :) I decided to make sure the switch hadn't been turned off (we always leave the main switch on), and it was off. I turned it on, and Bennett started kicking his legs one after the other and waving his hands up in the air toward the mobile. It was so cute!



It was hard leaving him tonight because he wasn't completely asleep, and both Jim and I hate leaving him awake!, but at the same time I felt better knowing he felt better and had a good day. I hope tonight is a good night too! He weighed 6 lbs 9 oz last night by the way! BIG BOY!





Hopefully we'll know something in a couple of days about what the plan for surgery will be!

Sunday Update

Not much has changed today. Bennett is still coughing which concerns me because it was thought to be from reflux, and with the NJ tube, we were told he shouldn't be refluxing (although I guess he still could be). I took a list of questions with me to the hospital today to ask the surgery team tomorrow morning. I think everyone is still a little afraid to operate on Bennett so no decisions have been made yet. Thank you for all of your comments and personal stories you have shared with me. Hopefully I will get some answers tomorrow.

Surgery and Then Home?

In rounds today, Bennett's team discussed a G-tube and Nissen or GJ-tube surgery along with hernia repair in the near future. We are waiting to see if his surgeon feels he is strong enough for these procedures. He didn't feel he was strong enough for lung surgery so we are anxious to see what he thinks about this. If he feels Bennett is ready, he will have his hernias repaired and a feeding tube placed into his stomach or intestine and work toward going home. Yep, I said HOME! I am hesitant to get excited until we know for sure what the surgeon thinks, but we have already seen a change in Bennett's oxygen requirement today with the continuous NJ feeding. Even when he got mad because he wanted a bottle, he didn't drop his oxygen saturation which is great. We believe the reflux, aspirating the reflux, and pain from it were causing those dips. He will be watched carefully over the next few days and then we could be looking at surgery. We are praying that if surgery is what is decided that Bennett will indeed be strong enough to be under anesthesia, intubated, then extubated, and then weaned down or off of oxygen. If this happens, he could go home and grow bigger before needing his lung surgery.

Thank you for praying along with us. It means so much to our family knowing you are cheering for Bennett too.

It's Beginning to Look A Lot Like Christmas

Did you notice my new blog look for Christmas? I love it! My friend Danielle is the best at putting things together to make it look so cute! This is a pre-made template, and you can see it and others on her website, The Design Girl . She also does blog design and stationery, and more! Check it out!

We finally have our tree almost completely decorated (and re-decorated by the kids a few times!), and I have a few more decorations to put out tomorrow before our house will be dressed for Christmas. Every time I look at my mantle with 6 stockings, I smile and thank God for all of the blessings we received this past year. What a special Christmas this will be!

Bottles and Breastfeeding, We Will Miss You

Bennett had an upper GI study today, and unfortunately, he can no longer have bottles or breastfeed. During the study, he did well until a large amount of liquid came back up all the way to his pharynx and then aspirated into his lungs. We started seeing signs of gastroesophageal reflux a few weeks ago with Bennett, and around this same time, his oxygen requirement increased which was strange to see after he had been trending downward and had been turned down as low as 0.3 L of oxygen.

For now, Bennett will be fed only by NJ tube, a tube that goes from his nose down into his bowel. He will be allowed to suck on his pacifier while being fed and possibly take in a very small amount by syringe or bottle n1pple so that he can continue practicing oral feeding so that he can resume when his reflux is better. So far, he is tolerating the change well, and we hope that it helps his oxygen needs go down so that he possibly could go home and then return for surgery at a later time when he is much bigger and stronger. There is always the possiblity of him having to have a G tube and Nissen fundoplication to help to avoid the reflux too. The good news is that he continues to grow well despite the reflux so if he is placed in NJ feeds, he could possibly grow even better.

We were blessed to have another great nurse today, and two of Bennett's nurses he had earlier in the week came to see his new private room and to see how he was doing. We are getting to know more and more people at this hospital, and they are getting to know us better too which is making the transition from Bennett's first NICU feel better. We miss our sweet friends there and know they would be so proud of how big Bennett has gotten this week--he's 6 lbs 7 oz!--and how strong he is holding his head up and looking around when on his tummy, tracking great, cooing and smiling, and rolling over.



*He was smiling in his sleep in this next picture with his eyes half open, but I had to share the cuteness! I will try to get one on camera when he is awake smiling at me!




We are so proud of Bennett and thankful for his progress and everyone praying for him. We are praying for progress with his breathing with this new change to his feedings and for him not to be too angry with us for taking away his oral feedings! Jim's mom had to go back home to go back to work so we are back to doing shifts at home and at the hospital, but we are SO thankful I was able to be with Bennett every day all day this week while he settled into a new home.

I heard Santa Claus is coming to visit him this next week. I will have to take a picture and post it if he does!

Going to decorate a little more for Christmas before going to sleep... it's taken us two weeks to do it because we've been gone so much!

Merry Christmas,

No Surgery Date?

I spoke with Bennett's attending again this afternoon, and I was able to review some of his history with her that she wasn't aware of. She didn't realize I was on steroids during my pregnancy, that he coughs at times possibly due to reflux, that he is fussier in the mornings and has better oxygen sats and is more content in the afternoon, and a couple of other things. It was nice talking with her one-on-one. She joked that I was going to walk out of there a neonatologist or come back to work there as a NICU nurse. I told her I like knowing about what's going on with Bennett and just wanted to make sure she knew the little things that might not be as obvious in the chart. I appreciated that she appreciated finding out some things from me that helped her make some decisions regarding his care. She did mention the possibility of Bennett needing a G-tube and Nissen Fundoplication if his reflux is causing aspiration (milk going into his lungs). He will need a swallow study to determine if this is happening or not. We hope and pray it's not for a variety of reasons. We don't want Bennett going under anesthesia if he doesn't have to, we don't want him to not be able to take his oral feedings he loves so much, and we don't want to have another site for possible infection that could affect his breathing. He isn't showing any signs of this happening during feedings, but we are aware he could be having silent aspiration. Hopefully this test will be run soon. The good news is Bennett is growing well and gaining an ounce or so every day. He's 6 lbs 6 oz today!

Tonight Jim and I got to finally speak face-to-face with Bennett's surgeon. His Fellow has spoken with me every day we've been at Children's and is wonderful so it was so nice to meet the actual surgeon too. He is also great. We enjoyed talking with him and asking him questions. He feels that the mass in Bennett's right lung has not changed and that he won't truly know what it's attached to until he does surgery. However, he feels that Bennett is "too scrawny" (that made me laugh) and breathing with more effort than he would like to survive surgery if there are any complications. He doesn't feel comfortable taking that risk if Bennett doesn't absolutely have to have the surgery until he is much bigger. So, what does that mean? We won't be getting a surgery date anytime soon. We will be staying at Children's Hospital so that the surgery team can continue to see him and monitor his breathing and so that he can have surgery as soon as possible if his breathing takes a turn for the worse. Ideally, Bennett will grow and go home and then return when he is bigger for surgery, which actually was the original plan about a month or so ago. It's frustrating that Bennett isn't closer to being home, but we don't want him to have surgery this small if he can wait and lower his risk of serious complications with his breathing.

So, now we wait. We wait and continue splitting our time and family as long as we have to so Bennett can grow enough to have surgery. This makes us sad and frustrated for Bennett and Owen, Lily, and Little Man. Bennett needs to be at home, and our big kids need us home more, but we just have to do what we can right now. We would love for Bennett's lungs to improve enough so that he could go home, but his oxygen requirement still goes up and down at times, and he is on more than he could go home on right now so he may stay until surgery and then go home. It could be weeks or months according to his surgeon. There is no way to know how long it will take. We are thankful he has a surgeon who wants to make sure he is ready before doing surgery. We adore Bennett and can't imagine our life without him. We'd rather wait and wait than have something bad happen to him. We may have no surgery date, but we have a precious little boy who is so strong, so sweet, and who God has big plans for.

Missing my little one and praying for progress with his breathing,

A Few New Pictures