Decisions

Decisions are hard. Decisions about what to do for you are extremely hard. The doctors and nurses keep saying we are between a rock and a bigger rock. Yup. 

Do we do one surgery or split in two? 

Do we do any surgery right now? Are both too risky? What if you could benefit from both now and you'd recover fine? What if both would be too much? What if one is too much? Should we wait until you're more stable? How long would that be? What if we wait too long? Oh Caleb, these decisions are some of the toughest decisions we have ever faced. We want to do what is best for you. We are praying for guidance and strength. There is no way around the difficulty of this situation. We have been dealing with gray areas for 6 months. 

I love you, baby boy. Oh how I love you. 

Sleep tight. 

Xoxo

Mom 

Love Bug

When I got to the hospital you woke up and were all wide eyed. I needed to pump before I held you so I patted your little booty and let you hold my finger to try and get you back to sleep. 

You held on to me super tight and it melted my heart. You fell asleep within minutes. 

Adrianne mentioned that she calls you love bug because you love to hold hands. I think it's so sweet she calls you that. I quickly pumped so I could settle in and hold you. 

Right when we got everything situated to hold you, you filled your diaper. It was pretty funny. Once that was clean I got to hold you. Nice and snuggly. I even fell asleep for just a couple minutes with you. 

While I was holding you the doctor came in. He talked about a few things and then mentioned a conversation he had with the pulmonologist. The part of the surgery that the docs are apprehensive about is the g tube with the Nissen. That is a major part of the surgery with a big incision and higher risk. They talked about doing just the tracheostomy first and once you've had a few months to become more stable to do the more major surgery. The docs really feel like you need the trach the most and since it will still take several months to come home we can do the other part of the surgery later. Normally they don't split the surgeries up but youre not the typical case. I feel like that is a great compromise to the risk of doing all the surgeries at once and that you'd be able to benefit from the trach right away. I talked to dad and we will continue to think about things. The doctor said when they were discussing this it was an aha moment. I'm so grateful for such wonderful doctors that really have your best interest at heart. 

I called to check on you this afternoon and Adrianne said you pooped like 5 times. Sounds like you're a super pooper lately. 

After I held you and put you back in your crib you were fast asleep again. 

You're just the sweetest, cutest, most loveable little guy. 

Xoxo

Mom

Chillin

I got to hold you again today. You sat in my lap just chillin and then fell fast asleep. You loved sitting up and being in a different position. 

Just before I held you I needed to pump (I'm still not giving up just yet although I think I permanently damaged the plumbing). I sat in the chair and was just about to get things ready to pump and I heard one of the nurses say dad was on the phone. I thought, "the only reason zeb calls while I'm here is when the camera isn't on." I looked to see where the camera was and it just so happened that it was right in front of me getting video of my shirt...I started laughing pretty hard. He told the nurse I was about to pump in front of the camera!!! All the nurses were laughing. Seriously so funny. Thanks, Zeb, for letting me know before I showed everyone watching things they didn't want to see!

During dads lunch break we talked to the neonatologist. He continued to say the things he said yesterday about not knowing the outcome of the surgery but he did say that they think they can do the surgery. If they didn't think it could be successful they wouldn't do it. 

You have growth on your side. While we aren't sure your lungs are growing slightly faster than the rest of your body we do know you are growing. The doctor mentioned some babies with underdeveloped lungs have a very hard time growing and fail to thrive. It is clear with you that that's not the case. You have continued to gain weight on a consistent basis and that's a big deal. That made mom and dad really happy. 

The doc also mentioned that this last time you went up on your oxygen when they weaned your pulmonary hypertension meds and steroids, they also stopped an antibiotic that they give in your ET tube. Sometimes doctors do a course of that medicine a few times a month for bacteria growing and it can help lessen secretions. You've continued to have more secretions than normal so he's starting that medicine today to see if it helps. 

We are watching your right lung since it still looks affected, continuing to wean the steroids, starting the Tobymycin, keeping your hypertension meds the same and watching your oxygen needs. If your numbers stay in 60's (50's would be ideal) and those other things look good then we may proceed with surgery next week. The neonatologist is going to talk with the surgeon and anesthesiologist to see if they are on board. Ultimately I know that it will happen when the timing is right. Heavenly Father is aware and knows what's best for you and our family and we will continue to put our faith in him. 

Adrianne did your hair today and was patting you when I got there. I love listening to your nurses talk to you and love on you. They seriously love you and that makes my heart so happy. 

Sure do love you buddy. Rest up!!!

Xoxo

Me

New phrase

When I got to the hospital you were staring at yourself again. 

You love looking up at the mobile too. You got your hand around your ET tube a few times so I tried putting your giraffe by you to distract your hands. 

I must have kissed you a hundred times. 

While I was there I went to pump and realized I forgot the stuff at home. Bummer. So I left after only being there for an hour. Luckily daddy was able to visit you this afternoon for a bit. I talked to the doctor and he mentioned being confident in the team that would do the surgery. However, he said he isn't confident of the outcome and isn't sure of your future. I knew that already but it's hard to hear again and again. I got to the car and let out a gut wrenching sob scream. I invented that phrase just now. Sob scream. I'm pretty sure I was crying so much that drool came out of the side of my mouth. Awesome. 

I drove home and pumped and then fell asleep under the pillows on my already made bed. Last night was hard. I got up in the middle of the night to pump and had a really hard time falling asleep. My mind wouldn't rest. 

I know that Heavenly Father is helping us through this trial. We are receiving added strength. I am learning that I still need to do all that I can to learn and grow. I noticed that I was looking on Facebook a lot to get my mind off things. While I was pumping I would grab my phone and look through the newsfeed. I realized that those minutes add up. At a time in my life when things are extremely difficult I need to be doing things that will help me. Strengthen me. Give me comfort. Now more than ever. So I have made it a point to read uplifting talks, read scriptures and listen to music. Then when days are difficult I can recall the things I've read to help sustain me. It's much easier to look at social media but I've noticed a big difference in my ability to cope since I've made the change. 

I love you, baby boy. 

Xoxo

Mom

P.S. I noticed you are wearing the same thing you were wearing yesterday. It's okay buddy, I'm wearing the same shirt too.

Mesmerized

You looove to look at yourself in the mirror. You watch yourself and look at things through your mirror. You pretty much mesmerize yourself. Adorable. 

I got to hold you and snuggle you today. Loved every second. 

The doc came in to say your echo showed improvement on your pulmonary hypertension which is good, it is evident that you need those meds. The docs are trying to wean your steroids to get them to every other day. Your oxygen is still up and down. It's really hard to feel completely comfortable with doing surgery since your oxygen varies so widely. We, along with the doctors, want you to be in a certain range for several days. But the numbers don't stick which makes it difficult. We may not get the luxury of stable numbers.  I looked back over the last 3 months since you've been on this ventilator and your numbers have always been up and down. Maybe I already wrote that in a post. We just love you so much and want to do what's best for you. 

I love you, son. 

To the moon and back. 

Xoxo

Mom

100 Days Old

The girls made signs to celebrate you being 100 days old. 

When I stood by your bed today and held your hand I just smelled you and kissed you over and over. I put my face next to yours and laid my head by you. Today was emotional for me. I met another mom in the NICU. Her water broke at 24 weeks and she had her baby at 26 weeks. Her son is a week old and off the ventilator. It's taken all the strength I can muster to not play the "if only" game. If only this, if only that, won't do me any good. Our situation is what it is and we will get through it. When I sang to you and talked to you I whispered that I would do anything for you and that I wished breathing wasn't so hard for you. I'm sorry I can't help you breathe, buddy. I told you I love you over and over. We sure pray for you, sweetheart. We pray for you to have strength and comfort and to feel our love for you. 

One of the only things I can really do to help take care of you is to pump and bring you breast milk. I've struggled the entire time with thrush and I've started getting mastitis which have been difficult to push through. I've learned a lot about pumping, if you pump too long you can bleed, if the suction is too high for too long you can have circulation problems and vasospasms making it impossible to pump any milk even though it's there. But I am determined to do this for you for as long as I can. 

There is no way around the fact that you are a fighter! 100 days ago our lives were forever changed and our hearts will never be the same. We are so grateful you're part of our family, Caleb. 

I love this picture of you. 

Xoxo

Mom

The Boys

I love seeing my boys together.

You were content and asleep the whole time we visited. It's so hard to see you when you're agitated and crying. 

Your carbon dioxide was much better this morning which is good. Oxygen is in low 70's. You're just too sweet for words. Surgery is still on hold. You have an echo on Monday and hopefully the pulmonary hypertension will be under control. The doc wants to slowly wean your steroids and hopefully get them down to every other day. 

You look pretty great in your daddy's arms. I love my boys! 

Xoxo

Mom

Therapy

Well I was able to have my therapy, I held you today. I can't even begin to tell you how good it is for my heart to hold you. I held you on St. Patrick's Day but I haven't snuggled you for a week or two. Holding you and cuddling you is better than seeing a rainbow after a raging storm. It's so calming and works wonders for my strength. I leave feeling like I can do anything no matter how long it takes. You sure are special, baby boy.

 

When I walked in to see you my heart melted. 

I love how you love your legs tucked in. It's the cutest. 

Your poor heels have been pricked hundreds of times. You're such a trooper. 

You're doing a bit better on oxygen needs. In the high 60's today. You're up to 9 pounds!!! They switched your ventilator back to pressure control mode. Your carbon dioxide numbers were getting high so hopefully this will help. 

Oh how I love you. 

Xoxo

Mom 

Run and not be Weary

You're sleeping soundly now and the doc ordered medicine to keep you calm to try and get your oxygen needs down. That said, I have had more time to think instead of interact with you. Although I've been holding your hand the last hour and have enjoyed watching you sleep. And you did open your eyes for about 2 minutes and look right at me, then back to sleep you went. It made me grin from ear to ear!

As I sit here listening to the baby across from you get ready to go to the special care nursery I have had several thoughts run through my head. But the thought that comes back again and again is that when it seems that those around us "have what we desire" we choose how we react to that. 

It's no secret that I want you to have your turn going to special care, that we want to be together at home as a family, and the girls want their baby brother to be with them. Just like we know that someone who struggles with infertility wants a turn being pregnant and having a baby. That the woman that hasn't found her companion in life wants her turn to be the bride. These are just a few of the many heartaches that people struggle with. They are things our hearts long for above all else. 

So when someone else has our hearts desire, something we have longed for for months and even years and years, it can seem unfair.  Sometimes I feel sorry for myself when another baby gets to go to special care. Sometimes I cry and feel defeated. Sometimes I might even ask myself and God why? Why can't it be my baby's turn? But that question leads to a slippery slope. Why is a question that may never even be answered in this life. If I chose to solely focus on why, I fear I would become a bitter person. 

Bitterness is on Satan's side of the line. It will only hurt me and hinder my growth. When bitterness enters my heart I'm not teachable. I become selfish and prideful. Caleb, my love for you is so strong. I can't even begin to express how deep my love is for you. There are hard things in life. There's no way around that. Trials come to everyone, I am no exception. But I want to be on the Savior's side of the line. I have found comfort in this scripture:

"But they that wait upon The Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."

Isaiah 40:31

I am trying my hardest to wait upon The Lord. It's definitely not easy. Anything in life that is meaningful is not easy. But it is worth it. 

Xoxo

Mom

Waiting

Well my sweet boy, it looks like we have more waiting. I feel as though we have been waiting for months and months and months, well because we have, since I first started bleeding last September. We got your echo results yesterday and your pulmonary hypertension was a bit high since we stopped your meds for it. So the doc put you back on the medicine and we will do another echo next week. Looks like when you're ready for surgery you may have to do it while on the meds. That's unnerving since your heart needs to get you through the trauma of surgery.  Today your oxygen had a setback and you went up to 80 percent. Because of that the doctor increased your steroids again. We were weaning them down to try and prepare for surgery. Right now we don't know when surgery will happen. 

I feel like I'm climbing an emotional Mount Everest. The mountain continues to require more of me, needing me to climb past the point of exhaustion. Instead of plateaus and opportunities to cruise for a short while, my breaks feel more like I'm hanging on the side of the mountain. It still takes incredible strength to hang on, but I get a "break" from going up. That said, the breaks don't really feel like breaks. 

I sang, "I am a child of God," to you when I was next to your crib. I realized in the third verse it says 

I am a child of God, 

rich blessings are in store

If I but learn to do his will

I'll live with him once more

Lead me, guide me, 

Walk beside me 

help me find the way 

Teach me all that I must do

To live with him someday 

I am trying my very hardest to learn to do heavenly father's will. On my way home from the hospital I sobbed. I sobbed until my head was tingling. I had time because the freeway was closed. If only 2 hours in traffic were the tough part of my day. 

With the uncertainty of when the surgery can happen (the surgery you need to slowly get better) that you are too sick to have, I feel like we are stuck between two boulders. Boulders so high I can't even see anything but the hard rock. Although I don't know how we will get through this,  somehow we will. Heavenly Father is mindful of us. He knows what is best for each of us. So I will continue to trust in Him. 

I'm late pumping so I'd better go. 

I love you, baby boy. 

So much.  

You are worth this climb, Caleb. Never ever doubt that.

Xoxo

Mom 

Happy St. Patrick's Day!

You're mommy's little lucky charm! 

Oh how I love you. 

It took me almost 2 hours to get to the hospital today so I was happy you were wide eyed and ready to see me. I adore your cheeks, your bright eyes, your dimpled knees and the way you cross your ankles. 

The nurses made this darling note. They know you're my lucky charm. 

Happy St. Patrick's Day buddy. I was happy to see your milk wasn't green today. Your sisters are going to do a double take at their green eggs for dinner. 

We are so lucky you're ours!!!!!!

Xoxo

Mom

Your sister

Today I checked in on you before leaving to the hospital and saw this note that Adrianne left next to you. 

You made it to 46 on your oxygen! It's been a while since you've been in the 40's so that was awesome to read! When we got to the hospital you were 49 and when we left you were 62. We just called to check on you and you are 58. You oxygen still fluctuates but we are seeing more of a trend. 

While we were there dad held you and it was pretty adorable to see you in daddy's arms. Especially the way Adrianne did your hair. I love it. 

I sang lots of hymns and primary songs to you which you seemed to like. Your eyes got heavy and you fell asleep. I just can't get over how precious you are. 

Tonight I pulled you up on the iPad and the girls blew you a kiss goodnight. After the younger girls went to bed Claire stayed up with dad and me. She was holding the iPad watching you and started crying. She said she wished she wasn't holding the iPad and that she was there with you. She loves you so much. She is looking forward to April when it's not flu season anymore. All your sisters love you so much. You are one loved brother. I hope you sleep well tonight. See you tomorrow, sweet boy. 

Sure do love you. 

Xoxo

Mom 

Snug as a bug

When we visited you yesterday you slept the whole time. You were so comfortable and calm. I love seeing your legs tucked up under you and your arms tight against your side. You're just the sweetest thing ever. 

Granny and papa saw you on the way to the airport. They sure loved seeing you. 

Last night when I checked in on you you were sooooo darling. The camera was positioned so I could see your sweet face. 

I can't wait until I can shower those cheeks with kisses. 

The respiratory therapist is doing your breathing treatments every 8 hours during the day. They stopped the one at night so you can sleep more soundly. The doc weaned one of your meds completely that was for pulmonary hypertension, since the blood pressure in your lungs was getting higher. The pressure is in a more normal range now so we will do a repeat echo next week to see if it stays down. The doc is still weaning your steroids. When you had aspiration pneumonia and were at 100 percent oxygen they put you back on the full dose. You're getting about half that now and they'll continue to wean. You've been in the 60's on oxygen with the volume being controlled instead of the pressure. 

You seem much more yourself this past week. You're pretty content while you're awake and when you are awake you're more alert. That 9 days on CPAP was very difficult on you. It was hard to watch. I know that when you are able to have your surgeries it will be extremely difficult. Most parents whose child goes through the surgery ask themselves why they had the surgery done. But once recovery is over the nurses tell us most parents wonder why they didn't do it sooner. In the end it will be the best thing for you. 

We will all just keep on keepin on. 

Sure do love you, Caleb Luke. 

Xoxo

Mom

Just Chillin

This morning granny checked in on you on the web cam and found you just chillin...

I love that your nurse Shannon encourages you to see things sitting up and experience things from a different point of view. I love her. You have such great nurses. I catch the way they talk to you and even tell you they love you and it makes me so happy to know you get such good care. 

The neo came to talk to us for a bit and mentioned talking to other anesthesiologists in the group since there are several. He's also in the process of weaning some of your medicines to try and prepare you for surgery. He thinks this kink may postpone your surgery a week or two. I know that in the end you'll get the surgery when the timing is right. 

While I was there I compared your foot print when you were born to now and couldn't believe how much it's grown!!!

Your feet were so tiny before! 

I peeked in on you at bedtime and you were all cozy. 

I got to see you today. I got to clip your fingernails. I got to see you while you were awake. You were awake for about 2 hours! I got to kiss your head and hold your hand. I got to tell you I love you. I'm grateful you're in our lives, more than you know.

Xoxo

Mom

Little Peek

When they wheeled you to the room to do the GI study they opened the back door in the NICU to let the girls take a peek at you. They loved it! 

Your sissies sure love you, Caleb. 

After your GI study the doctor came to talk to us. He said the study didn't indicate aspiration or even a severe reflux. Instead of taking that information and going forward with the surgery next week we got different information. The neonatologist received a call from the GI surgeon and he said that the pediatric anesthesiologist mentioned not wanting to do the surgery because your vent settings are too high. He doesn't think you would be able to survive the surgery. The neo was quite surprised and didn't expect this so we are trying to work our way through this. We were just trying to wrap our heads around the fact that the trach would happen. Now the neo is worried that if we wait too long you won't be able to get the surgery, that we will miss our window. This is a lot to take in. My emotions are all over the place. Just know that we love you, Caleb. That we are trying to find out what you need. 

Sure do love you.

Xoxo

Mom

Three Months!

Caleb Luke Fish 

3 pounds 4 ounces

15.5 Inches 

One Month Old

Two Months Old

 Three Months Old

8 pounds 6 ounces

20 inches

 From this...

to this...

You have grown SO much!!!! I can't even remember you being so small. It seems like so long ago. These 3 months have flown by. So glad you're ours, sweet boy.

Love you to the moon and back.

xoxo

Mom