Serenity: 7 weeks old (Gestation: 31 weeks 2 days)

Serenity is 7 weeks old today! The last I checked, she was about 1 lb. 14 oz., which is above her birth weight of 1 lb. 6 oz. but she still is a little endemic (holding fluid), so part of that is showing in her weight. However, she does seems to be growing just a teeny tiny little bit.

When I went to the hospital this morning, I did my 3 minute scrub-in, as usually, and headed for Serenity's isolate. Kim (one of Serenity's primary day nurses) seemed excited about me taking a peek at her. And what I saw was a beautiful little baby girl, all fixed up with a headband made out of ribbon, and a ribbon tied into a bow on the headband. How adorable is that?! Her first headband! And she had a purple pacifier in her mouth that she was actually sucking. I cannot express how much joy it brings to my heart to see my little angel doing normal newborn things.

So, while we (Kim and I) we blubbering over Serenity's cuteness. We started talking about micro preemie clothing, and the fact that there really isn't any out on the market to buy. She was telling me about a certain type of shirt that she thought was made to fit micro preemies and we decided to go dig around in the clothes closet to take a peek at what kind of itty-bitty clothes were in there (not much for her size people, unfortunately). We ended up finding a preemie button up shirt that looked pretty small, and seemed like it would fit her chest fairly well. So, like giggling little girls, we decided to try it on her to see if it fit. And although it fits more like a dress, and we had to roll the sleeves down a little, it looked SO adorable on her!

Talk about a fun afternoon! I thoroughly enjoyed getting my baby girl all dolled up. She was beautiful to begin with, but there is just something about seeing her looking normal that made her seem so much better than she is. She really was having a good day today, though. She was looking around a lot with her cute brown eyes, and sucking on her pacifier like a pro.

On the medical side of things, everything seems fairly stable still. They are continuing to wean her oscillator settings, and will hopefully be getting her switched back over to the regular vent soon (either tonight or tomorrow morning is the chatter). At first I was hesitant about going back on the vent, but the vent means we can do kangaroo care, and I'm all for that. :)

There is also chatter about when they will begin feedings. The doctors and the surgeons sort of have differing opinions, and neither of them really seems to be wanting to give the orders--I think out of nervousness that it won't go well. But the good news is, she is getting really close to real food!

So, overall, today has been a great day! And I have decided to leave you all with some photos of our fun adventures playing dress up. Enjoy. (She kept peeking at me with one eye <3)

Serenity: 6 weeks 4 days (Gestation: 31 weeks)

Hello all! I thought I would post a little update since there has been some activity in the life of Serenity. As of yesterday, she officially has a bag for her stoma, because, wait for it...... she has been pooping! A lot! I know, we have been getting excited about bodily functions the past few weeks, but that's just it, bodily functions means the body is functioning!! I haven't heard much more information on her intestines other than stool is flowing through, which is good. Also, the doctors are talking about starting feedings soon, which would be awesome!

On a not as good note, there is a tear at the base of the stoma that is getting worse. We are watching it closely, because there is a chance that the tear could get so bad that the stoma could fall off and her intestine would slip back inside of her body. This would not be good.

Other than that, not much has changed. I hope everyone is having a good day.

Love from the Nichols <3

Running Backwards in the Race

Running backwards in the race.  That’s what I feel like we are doing.  Attempting to move forward, but not quite getting there.

This morning was my first time going to church since being in Michigan.  I believe this is the longest stretch of time I have gone without attending corporate worship.  I’m not entirely sure why it has taken me so long, but it has.  Each week I had a reason for not going.  Some weeks I was just plain exhausted.  Some weeks I didn’t feel like being around a bunch of people.  And some weeks, I didn’t really have a reason at all.  Could it be that I was avoiding God?  I’m not sure.  I don’t feel like I have been avoiding God… because there is literally no way I could have made it these 6 weeks and 2 days (longer if you count the week I was in the hospital before Serenity was born) without Him.  From day one I have attempted to put every ounce of trust I have into the God I serve.  From day one, my faith was in Him.  My faith was in knowing that no matter what happened, it was in His good, pleasing, and perfect will. 

So why?  Why have I been avoiding my Savior in a corporate worship setting?  Well… this morning, I think I discovered why.  We sang “In Christ Alone” this morning as a church body (if you don’t know the lyrics, I encourage you to look them up).  And for what was probably the first time in my life, I stopped singing and just listened to the words.  For anyone who knows me, I’m not the type to stand there and not be singing.  I love to sing.  Singing is one of the things in life that brings me immense joy.  But instead of singing I listened.  My heart listened.  For what feels like the first time in a little over six weeks, I could FEEL.  I felt a connection with my Savior again.  That might seem weird to many, considering everything I have said throughout this journey so far.  I never lost sight of my Lord, and I never forgot where my hope came from, nor did I forget Whom my trust was in.  But I had been numb.  I had been numb, and I didn’t want to feel.  I was afraid to feel.  I knew the intense love that comes from my Lord would bring with it an ocean of feelings, and I was afraid I wouldn’t be emotionally strong enough to handle receiving that kind of love. 

 My emotions are still on shaky ground.  I feel like I still have a wall around my heart in attempts to hold myself together (even still, I’m only able to keep that wall up with the strength my God has given me).  But as the days go by, and the hours stretch on, and there seems to be very little progress being made, the more difficult it is to keep that wall up.  I feel like I’m running backwards in the race.  I’ve been running with everything I’ve got for a little over six weeks and I feel like I’ve gotten nowhere.  I feel the energy draining from my body.  I feel my emotions treading on thin ice.  I feel my strength beginning to waiver. 

I feel like this afternoon’s events have spurred this extra effort given in this race in which I’m working so hard to reach the finish line.  To hear, once again, that Serenity is not doing well has sucked the life right out of me.  The doctor thinks there is an infection in her gut.  The incision sight is also not looking so well.  There is a possible issue with the skin that is supposed to be attached to the stoma.  And, well, it’s more “wait and see” kind of stuff that is very difficult for me.  I am not a patient person.  And I am someone who does not enjoy the feeling of being in “limbo”.  What this all means in terms of what will happen next, I’m not sure.  The short-term goal is to stay ahead of any type of infection that might be trying to take over her very tiny body.  Obviously she has been in much worse shape before, but to know that her little body is once again having to fight so hard to live, can be… well, to put it plainly, discouraging. 

I know that God has complete control of her life.  I know that His plan is so completely perfect in every way.  But when you’ve never been through a test such as this before, it is not always easy.

So pray for me (and Ryan) that we will continue to put complete trust in our God.  That He will fill us with strength.  That He will give us peace.  That our faith and hope will be in Him, that His will is perfect.  And, as always, pray for Serenity.  Pray for God’s will in her life.  Send requests up to the Father that He heal her body, and have complete faith that He can and will if that is his perfect plan for her.  And lastly, but most importantly, please pray that this journey will not take our eyes off Yahweh.  That is where I am finding struggle.  I have put so much focus into finding my hope and strength in God in this situation with Serenity, that I have taken the focus off the cross.  I have taken my focus off of where my priority should be, and that is Yeshua.  Because of Him, and the sacrifice He made for us so long ago, we are able to have peace.  Because of Him, we have hope of a future.  Because of Him, we have no fear in death.  It’s all because of Him.  

Serenity: 6 weeks 1 day (Gestation: 30 weeks 3 days)

Good afternoon everyone. My family has been so blessed by all of the prayer and encouragement we have received from all of you. When two or more gather in the Name of our Lord, there He will also be. There have been plenty more than just two gathering in His name on behalf of my family. Specifically gathered on behalf of Serenity Hope. I can feel His presence in the depths of my soul. 

This being said, we ask you to please continue gathering. Continue lifting her up to our Father in Heaven who hears the petitions of His children. We ask you to ultimately pray for His will to be done regardless of our desires. Because His will is perfect regardless of the final outcomes in this life.

However, we should also come together and pray specifically and intentionally. At this moment Serenity's right lung has fluid in it. Obviously, this needs to clear up. Also, her stomach, which she has already had an exploratory surgery on, is swollen. At this point, the doctors believe this is possibly due to an air build up in her intestines and left over fluids in her abdomen. We pray it is more fluid than air. Until we know more, we must be patient and keep a close eye.

Again, thank you so much for gathering together before El Elyon (The Most High God) and laying our family at His feet.

He is the giver of life and the redeemer of our souls. Gather together before His glorious throne regardless of life circumstances. For the Most High God is worthy.

Thank you all

-Ryan

Serenity: 6 weeks 1 day (Gestation: 30 weeks 3 days)

Good afternoon everyone. My family has been so blessed by all of the prayer and encouragement we have received from all of you. When two or more gather in the Name of our Lord, there He will also be. There have been plenty more than just two gathering in His name on behalf of my family. Specifically gathered on behalf of Serenity Hope. I can feel His presence in the depths of my soul. 

This being said, we ask you to please continue gathering. Continue lifting her up to our Father in Heaven who hears the petitions of His children. We ask you to ultimately pray for His will to be done regardless of our desires. Because His will is perfect regardless of the final outcomes in this life.

However, we should also come together and pray specifically and intentionally. At this moment Serenity's right lung has fluid in it. Obviously, this needs to clear up. Also, her stomach, which she has already had an exploratory surgery on, is swollen. At this point, the doctors believe this is possibly due to an air build up in her intestines and left over fluids in her abdomen. We pray it is more fluid than air. Until we know more, we must be patient and keep a close eye.

Again, thank you so much for gathering together before El Elyon (The Most High God) and laying our family at His feet.

He is the giver of life and the redeemer of our souls. Gather together before His glorious throne regardless of life circumstances. For the Most High God is worthy.

Thank you all

-Ryan

Serenity: 5 weeks 5 days (Gestational age: 30 weeks)

So I haven't written an update on Serenity in quite awhile. Most of this due to being extremely busy with all the critical craziness of last week--Serenity's major surgery and her body shutting down post-op. After that, I've busy trying to get some time in with my parents and with Ryan since time with all of them is limited and precious right now.

However, I have noticed several people getting antsy about how our little one is doing. So to save myself the stress of answering so many people, I figured it was time to sit down and MAKE time to update everyone.

As many of you know, last week Serenity Hope was fighting for her life. For several days she was being kept alive by medicines and machines. She was relying on life support. This was not an easy time for us, but we were able to make it through with the hope we have in our Creator. In Him alone we found our peace and our strength.

Toward the end of the week, the diuretics the doctors had Serenity on finally kickstarted her kidneys and they began working on their own--which meant TONS of pee! Never have I been so excited and happy about urine.  :)

This week is a lot slower paced. This week is more about waiting. We wait for Serenity's body to heal. We don't know how long this process will take, but we are just so thankful she is in the place she is at the moment.

The only real concerns that we have (other than the concern that anything can go South at any moment) is that her stoma and the surrounding area heals up nicely. Also, during her rough few days, the doctors had to give her a medicine through IV's because of her blood being too acidic, but the medicine gave her chemical burns. She has a burn in the elbow bend of her arm, and a burn on her forehead. The burn on her forehead seems to be doing okay, but the burn on her arm is not looking as good. They will be having some specialists coming to look at it in the future to see what needs to be done.

Other than those couple of things, everything is just a waiting game. Waiting to try to feed her milk so she can grow and be big and strong. Waiting for everything.

Thank you all for your love, encouragement, and prayers. We are grateful for you all.

As a side note, I would like to encourage you all, that if you don't hear from me, you can be assured that things are still going well, or about the same. Right now there isn't a lot of change going on. Just small little tweaks in medicines and machines. And a few small changes in her body. So there may be fewer updates. But rest assured that if something major happens, the first place I will go is facebook to give a status update about what is happening. That is the quickest, easiest way to keep thousands of people in the loop.

Update on Serenity and a Message From Our Hearts

Serenity is currently in renal (kidney), lung, and heart failure. Her heart and lungs are working due to the medications they have her on. However, her kidneys are simply not working. They are about to give her a large dose of two medicines to try and kick start her kidneys. If it dos not work, those medicines will unfortunately cause her lungs to fill with more fluids and possibly shut them down more. However, this is a risk we have to take because if her kidneys do not begin functioning the rest will not matter. As far as the doctor knows, if he is not successful in getting her kidneys to start, she will slowly die. Hence, the kidneys are of top priority in prayer.

Please pass this on to all prayer worriers.

Our Father in heaven, being timeless, has already heard your petitions for our baby girl. And Kasey and I know, beyond any doubt, her healing might ultimately be to pass away. As we have said from the beginning, our hope is in the creator of all things. The one who made a way to save our very souls. Our hope is not in any human being. So, if in his good graces and wisdom, he has chosen to allow Serenity Hope Nichols to be with him in heaven, we will mourn, but ultimately we will rejoice in who he is and the blessing he has given by allowing us to hold her sweet little hands.

I believe the scripture below best explains our hearts. Please read it thoroughly and intently.

Romans 8:18, 23-30

"18 Yet what we suffer now is nothing compared to the glory he will reveal to us later...

...23 And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children,* including the new bodies he has promised us. 24 We were given this hope when we were saved. (If we already have something, we don’t need to hope* for it. 25 But if we look forward to something we don’t yet have, we must wait patiently and confidently.) 26 And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. 27 And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers* in harmony with God’s own will. 28 And we know that God causes everything to work together* for the good of those who love God and are called according to his purpose for them. 29 For God knew his people in advance, and he chose them to become like his Son, so that his Son would be the firstborn* among many brothers and sisters. 30 And having chosen them, he called them to come to him. And having called them, he gave them right standing (a right relationship/good standing) with himself. And having given them right standing (a right relationship/good standing), he gave them his glory."

(Keep in mind, Paul wrote this while in prison and suffering great persecution)

If, in all of this, one see's the goodness of God, then we will rejoice! If, in all of this, one comes to know our Lord and Savior, we will rejoice! Everything he does should be considered good. Including the timely death of our little girl.

Thank you all for your continued prayers and encouragements. You are all family to us! Even those of you we have never met.

-Ryan Nichols

Serenity: 4 weeks 3 days (Gestation age: 28 weeks 5 days)

So even though Serenity is 4 weeks and 3 days old, today is her one month birthday!
I really have had zero expectations as far as how long we would have with our baby girl, so hitting the one month mark makes my heart happy.

This morning, though, did not start out very happy. I woke up to a phone call from Serenity's nurse telling me that Serenity had for sure perforated again, and that they needed me to come to the hospital to discuss some other things and sign paperwork.

Getting to the hospital, the nurse explained to me that when the doctor had seen that Serenity had perforated, they started talking exploratory surgery right away. The nurse did not feel okay with that. She felt Serenity to be too small, and just didn't have a good feeling about it. Ryan and I didn't feel okay with major surgery either. Especially if there were other options.

When all of the doctors and surgeons showed up in the NICU and crowded around Serenity's isolate, they discussed our two options. Two. That's it. Not my favorite number when it comes to options, but it's better than one.

They told me that we could opt to do the exploratory surgery so they could get in there, find out what the problem is when her intestines and fix the free air (perforation) issue all at the same time while they had this window of her being stable. Or they could try doing another drain to see if they could get rid of the free air, and try to wait for Serenity to get a little bigger. However, option number two, wasn't much of an option in their opinion because it was only putting a bandaid on the problem to attempt to push off having to do surgery. But if we were to choose the "bandaid" option, (attempted drain, wait for surgery) we risk Serenity not being in a stable enough place later, and we risk more liver damage from being on the TPN for a longer amount of time since we'd have to push off milk feedings for quite awhile. And the list of cons goes on forever.

So, somewhere in the middle of all of the explanations of pros and cons, I started losing confidence in my original "no" answer to the exploratory surgery. By the end, I had absolutely NO idea what to do. I did not want to say yes to a major surgery for my one and a half pound micro preemie daughter. But the more I heard from the surgeons and doctors, the more I felt like the "bandaid" option was not really the best decision.

Thankfully, I was able to talk all of this through with Ryan. And after much talking we remembered, at about the same time that, since the very beginning of this entire journey, before Serenity was born and I was still in the hospital, that we had discussed our prayers for the doctors and nurses that were given to us. We felt that we had to trust the opinions of the doctors, and trust that God has given them the wisdom and knowledge for each situation. And right after that, I had a thought. Not only had we prayed for all of the doctors and nurses, and their medical expertise. But I thought about the condition Serenity was in the first time she perforated. She looked like she was on her deathbed. She looked"dusky" (grey/colorless). She wasn't moving around very much. And her stats were not very good. But this time, her color was good, and she was moving around and looking around like she felt just fine. Not to mention, her stats showed no signs of anything being wrong. So, I fully believe God had prepared her little body for being ready for this surgery. I don't know what the odds of her would have been for making it through okay if she had not been so stable. But they definitely would not have been as good. So, we decided the surgery was the route to go--even if it wasn't our favorite option, we felt in this situation it was the better option.

What the surgeons found while exploring, was a perforation in the lower right intestine, and they found a knotted up area of intestine in the upper left intestine that either already had a perforation, or it became perforated as they were checking things out. They decided the best move was to cut out and stitch up the perforated area in the bottom right area since it was further down in the "pipes" so-to-speak. And they chose to do an ostomy in the upper left area so that the sewn up perforation would have longer to heal but they could still start feedings. The surgeons also saw a thinned area even further up in the intestine, closer to the stomach that they put stitches in, just in case, to hopefully prevent that area from perforating in the future.

So in the end, the surgery ended up being a good thing, considering there were so many issues that needed taken care of. And the hope is, in about a week we will be able to start feedings again, and that those will go well now because of the stoma. And that with feedings, Serenity will be able to start growing big and strong. Which up until this point, I hadn't really thought much about. But I realize Serenity is still around the same length and weight she was when she was born, which was one month ago.

For now, here are some things little miss Serenity could use some prayer for:
*quick recover from surgery
*no infection/complications from surgery/stoma
*continued healing of brain bleed
*continued healing of lungs
*a growing body filled with strength

Thank you all for your love and prayers!!

Serenity: 4 weeks old! (28 weeks 2 days)

Today is Serenity's 4 week "birthday"! Wow. I can't believe it has been 4 weeks since she was born. It seems like she was just born last week. But at the same, it feels like we have been in the NICU for so long that we should have our own parking spot.

Today has been an interesting day for sure.... Today marks 3 weeks EXACTLY from the Friday morning Kim (Serenity's primary day-nurse) called me to tell me that Serenity was "very sick". Kim's voicemail on this Friday morning was eerily reminiscent of the phone call from 3 weeks ago. She even used the same words that she was "very sick".

I had been asking the nurses for the last day or two if her stomach was measuring bigger, because it was looking more bloated to me. It hadn't been measuring much bigger, but since she had been switched to a combination of the nasal cannula and the c-pap, that it's common for them to swallow more air than they would just being on the ventilator. So the nurses were thinking it was just from that. This morning though, when I made my very early morning trip to the NICU, I asked again if her tummy had gotten bigger. And went through the same conversation about the c-pap and cannula, etc. And in my head, I was thinking she looked a little pale/gray. But I thought maybe it was just the lights. It turns out, her tummy was definitely bloated. And her tummy, according to Kim, looked, "dusky". So my intuition had been right. Which Kim told me I needed to not be afraid of paying attention to and even questioning the nurses further when I feel strongly about something. I will definitely be getting a little more bold now when I have a feeling about something.

So what we are looking at in terms of her tummy being bloated is because of air; however, the air is IN her intestines rather than OUTSIDE of them this time. The first thought was that there was an obstruction causing the air to back-up in her intestines, but now the doctor is saying he doesn't think it's necessarily an obstruction. He feels like it has more to do with stress from being extubated, being poked and prodded, and then being intubated again. So the game plan for now is to not do much to her over the weekend, and check her again. They may opt to do a dye test at the beginning of next week after she has rested over the weekend.

Our prayer and hope is that they will be able to figure out what is going on with more x-rays and a dye test. Because if they are not able to figure things out, they may have to do an exploratory surgery, which we really do not want.

Other than that, Serenity's lungs looked better on the x-ray as far as fluid goes. The nurse said a lot of that is due being back on the vent and having more air pressure going into her lungs. I did ask her about the fluid today, and she said that fluid on her lungs is something that we will probably be dealing with off and on for quite some time. Just because, if she is receiving more fluids, her body is likely to hold extra fluid in her lungs.

So, needless to say, today was an interesting day. I know that we have to expect setbacks, but it's weird to go from being fairly stable, to being in an extremely unstable condition. Not knowing what could happen at any moment is sort of an unsettling feeling, but so far, we are still finding ourselves in a state of strength and peace.

Thank you all for your prayers today, and everyday! Thank you for all the love you have sent us and Serenity Hope across the miles. We love you all!