All good things

All good things to report today :) Brinley is doing excellent (in Brinley terms at least). The swallowing diagnosis being the main cause of her big desat breathing issues seems to be holding up very well. The doctors put her on a medication called glycopyrrolate (branded name is Robinul) that helps thicken her secretions so that they do not so readily pool and run down her trachea. So far this seems to be working very nicely in decreasing the frequency she has to be suctioned. The downside is that when her trachea gets cleaned out it is thicker in there as well so we have to use a couple drops of saline to help loosen it up. But this is only a minor thing and the upside is very positive.

I got to spend a couple hours with Brinley yesterday morning before coming home to meet with a rep from the company that will be supplying all of the equipment we will be bringing in for our Bionic baby. She was wide awake and it was wonderful just being able to hold her and talk to her. Usually during these times I'm talking to at least one nurse, PA, doctor, etc. about one thing or another but it's just comforting to hold my daughter while that is going on. And, of course, I had the wonderful privilege of changing a poopy diaper for her.

Sarah got a couple good hours this morning with Brin and had even more to do: she gave her a bath, changed her trach collar, suctioned her, hooked up her feeding, changed a diaper and got her dressed. Really just the normal things you'd do for a baby her age with a couple of extras thrown in. Actually, the feeding part is probably easier now than with a "normal" baby.

And the good news is that Brinley hasn't had any big desats since Thursday when the likely cause was discovered. It's obviously not fixed but is easier to manage and prevent when you know what to look for. Also, she is still on target for coming home Wednesday, June 11th! The 10 count starts tomorrow. Her nurse M has started trying to get her on a good sleeping schedule by getting her all set at night for a nice long rest by making sure she is in a bigger diaper so she won't have to be changed until morning, putting some cream preemptively on so she doesn't get diaper rash and doing all her vitals before she is down for the night. She did great with this last night and only had to be suctioned once, which she slept through.

Meanwhile, on the home front, Alessa had her 2 year birthday yesterday so happy birthday to my adorable strawberry blonde blue-eyed big girl! Today Cailyn got her ears pierced, a big day in every little girl's life. Everyone is healthy which is nice; house preparations continue; we're trying to wrap our heads around how many things there are to keep track of: insurance, doctor visits, who to contact about what, getting and storing supplies, training, setting up babysitting, applying for different programs (I did not realize Brinley would make us eligible for a handicapped license for our car so that's interesting).

So, this post was mostly just factual. I want to do a little video post soon to give a little more personal touch to the story. Sarah and I are doing pretty well emotionally but trying to be better about having good time together, usually late at night at this point. The busyness of everything tends to push this to the back burner unfortunately and it takes real effort not to let that happen. We're still getting better at it so please add this to your prayer list for us. Keeping a strong marriage through this will be so important for our family. We continue to feel so loved by God through everything. Yes, I still get mad at Him when Brinley has a rough day but He responds so gently and I remember God's love for her is so much greater than my own.

We love hearing from everyone about how much they feel like they know Brinley from reading this blog. We are hoping that everyone gets to meet her some day. She's been a blessing to Sarah and I and her sisters and we think it's so awesome how she's been a blessing to all of you as well. Thank you for the continued prayers and support. We love you all!

Progress and the Fallout

Today was a mixed bag. When I first arrived at the hospital I was told that Brin had some more significant desats last night. Great....the speech therapist walked in shortly after that, so I didn't get a chance to really think or process much. The therapist showed me some of the things she is working on with Brinley and was excited about the progress she was making. Long story short, during the session, Brinley swallowed (she doesn't do this much)- hooray! Then she crashed. Her oxygen saturation level was in the teens. We had to put her on 100% oxygen for a couple of minutes and she did bounce back. Speech, her nurse and I were all talking about the seemingly direct correlation between the swallow and desat. When the doctors came through during rounds we relayed what had happened. They decided to raise her rate from 12 to 20 in hopes that it would "catch" any future episodes sooner and therefore keep them from being so extreme. They also called ENT to see if they could come check out her mechanics (how she physically swallows) and see if that was indeed the problem. ENT was able to come in pretty quickly. He used a scope to look into her trachea and that looked excellent. Our nurse "M" and I relayed the morning's events to him and asked that he look higher up, so he put the scope down her nose and found a pool of saliva just sitting in the back of her mouth. Apparently she can hold about 10mls of fluid back there. The thought is that when she swallows one of these large amounts of fluid, she aspirates (it goes into her lungs) and then desats. It would be like taking a drink and having it go down the wrong tube. You and I just cough for a while, but she doesn't have that reflex yet, so it is hard to breath. If you recall during her swallow test it was determined that when she swallows fluids go out her nose and mouth as well as down her esophagus and trachea. So, at this point there is not much we can do beside proactively suction her mouth more frequently to avoid the saliva pooling and have oxygen nearby to help her recover quickly. Eventually they will do stages of oral surgery, but they want to give her some time to grow and see if any of these issues lessen or resolve on their own.

My sister in law asked me last night if we were nervous, or excited to bring Brinley home. I compared it to climbing a mountain. We are excited, but we need to do a lot of work and preparation, both physical and mental before we're there. We are at base camp 1. We go up, acclimate to the surroundings then head back for a while. Some day we will be stable at base camp 2 and try for 3 and some day we will get her home, have these reconstructive surgeries and prayerfully have a happy, healthy, "normal" little girl!

I have to say we are getting a little more tired. More easily irritated. The lack of sleep, sickness, crazy schedule and emotional roller coaster are catching up a bit. We still very much need your prayers for our whole family. Pray that Peter and I have time to connect, even a little bit, without pressure of having to get something done. We are SO very thankful for all of the support that we have received. Cleaning, lawn mowing, cooking, childcare, sewing, etc. It's just not over yet. We're in this thing for the long haul and are feeling a need for a little breath of air somehow.

Today our nurse "M" gave us the doll that she made for the big sisters. It is officially the "Brinley doll." The girls love it and so do we. Not many people get this spoiled by their nurses, let me tell you! Brin is so very loved and cared for by a lot of the staff and it gives Peter and I an extra measure of comfort to see. We are blessed. Without further ado here is our trached, mic-key buttoned baby doll (complete with an extra outfit, slippers, suction, kangaroo pouch, O2 sensor, blood pressure cuff, hospital band.....she's got the works, just like our Brinley!)

And the mic-key

The big sisters loving on their "Brinley doll." They have started learning how to suction and hang feeds ;)

 

Homecoming on the horizon!

We now have a tentative date (or dates rather) for bringing Brinley home; Tuesday June 10th or Wed. June 11th, just 2 more weeks! The main barriers between now and that happy day are getting trained and certified on all the equipment we will be going home with, including a respirator, suctioning equipment, feeding equipment, monitors, etc. (the etc just means I'm not sure what else but there is probably more). We also need to get our house ready to receive said equipment (electrical, space to actually fit it, etc). Of course, there is also getting approval from the neonatologists in charge of her care that they are sufficiently satisfied of our ability to care for Brinley at home. We have the contact person for our equipment supply company visiting our home on Friday to inspect and make recommendations for receiving and placing the equipment and training on the equipment will be next week at the hospital.

Yesterday, we got to do our very first trach change; yes, we pulled something out of our daughter's neck and put something else right back in it. It went perfect and really was easier than expected. It helped that we got to practice on a doll a few days ago of course. Brinley had the sutures taken out of her mic-key button today, a minor thing but worth mentioning. She still has not had any major desat issues since Sunday afternoon and is still on a rate of 12. Her nurse hooked up a different food dispenser that is just like the one we will be using at home so I got to practice on that a bit today. Tomorrow Sarah will spend a good chunk of time at the hospital with Brin, getting some practice on lots of different aspects of her care.

Some prayer requests:

• Pray that we will be able to continue to find people to watch our big girls with all our busy days coming up. We've had some wonderful people helping out so much and we certainly don't want anyone getting burnt out.
• The date of her homecoming makes it almost a certainty that neither Sarah nor me will make it to Sarah's brother's wedding which is the Friday following our bringing her home. That is, understandably, disappointing for Sarah to miss her own brother's wedding so pray for her to have peace despite this.
• Continue to pray for complete healing for Brinley in all aspects of her syndrome! 

We again want to thank everyone for all you do and have done for us: food, cleaning, babysitting, prayer, gifts, everything. We are so very blessed by you all! We are very tired and ragged at times simply because we are still being stretched and there are growing pains associated with that but God has been faithful all along the way and we are still feeling great hope for the long-term. The short-term has its ups and downs but our eyes are on God and we are not looking back. It's been so great to hear how many people are reading this blog and I just pray and hope it is more than just informative for you.

Goodnight friends, goodnight folks, 

[insert here some clever jokes]!

It's very late so please don't mind 

the hasty rhymes; you are so kind!

I posted this without my wife's review

I'm sure she'll glare and chuckle too.

To bed with me I think's the thing

Before I lose my following!

Just to make you smile :)

Ups and downs

So sorry it has been three days since my last post. Life is busy as I'm sure it is for all of you as well. But I do want to keep everyone updated so you know how to pray and just so you can all keep loving on our Brinley!

So, recapping recent events: Wednesday she had her feeding tube "installed" and her fundoplication performed. She is at full feeds and off drugs. Her ventilator settings were lowered on Friday and late that night about 1AM she had another one of her big desat apnea type events. They raised her rate back up to 30 and decided they would contact neurology again to get them to investigate further whether this might be some sort of central apnea disorder. They would wait until Tuesday (tomorrow) to do that because of the holiday weekend, unless anything more critical happened with her. On the higher rate she was fine but it was pretty discouraging because we were hoping the surgery had fixed the breathing issues. On Sunday we had a great day with her as Sarah and I got to visit Brinley together and get some good time, along with Sarah's Aunt Eileen. When we got there we learned they had lowered her vent rate to 12, following a consult with the pulmonary doctor. He thinks the apnea may still be related to reflux despite the fundoplication, which is actually encouraging if you can believe it. After we bidded...bade...bad adieu to our littlest girl that afternoon we felt much less discouraged than we had after hearing about her desat. We called to check on her that night to see how she had done on the new lower vent setting and learned that shortly after we had left she had another big desat apnea event at about 4PM; it was the only one, however, and they kept the setting at 12. Cut to today when I visited her for about an hour in the afternoon and just a short while ago when I called to check on her (about 10PM) she still has not had another big desat event, so that is encouraging.

If I were to speculate on causes of her desats from what we've observed ourselves and/or spoken with others about I would optimistically say that she was still recovering from the surgery and maybe there was still some swelling that could have been triggering the apneic response or that her body just needed to adapt to breathing more on its own after relying on the vent. On the more pessimistic side it could still be a neurological disorder yet to be discovered. The pulmonary doctor also is recommending that Brinley go home with respirator assistance, as opposed to just a mist collar. There are a lot of mixed feelings about that but the bottom line is the old adage: better to have it and not need it than to need it and not have it.

On the home front, everyone's health is improving. Sarah still sounds hoarse and needs a lot of rest but she is definitely sounding and feeling better. Alessa is also much better. Cailyn still sounds hoarse but is not really showing and more signs of her sickness getting worse. I think I've managed to avoid getting anything that the girls got :)

We are doing well but are busy trying to learn everything we need for bringing Brinley home, getting the house ready, taking care of our kids, figuring out all the contacts we'll need to manage for follow-up visits, home visits, who is responsible for what part of Brinley's ongoing therapies, procedures, testing and what-not. Sarah is the organized one so she is mostly handling that part of it. Pray also for wisdom about the upcoming wedding of Sarah's brother Sam and if/how one of us can attend (it's in Michigan).

Love you all and appreciate you taking the time to read my loooong post. I still haven't mastered the art of the short update. We continue to thank and praise God for all the blessings of peace through this adventure. We are learning to be still and know that He is God, and a bigger God than we often give Him credit for.

Happy 1 month birthday Brinley!

It's hard to believe that today marks Brinley's 1 month birthday already. Happy birthday my little beauty; I love you! What a month it has been but the homeward trip is finally in sight when she will finally be in our crazy house with 4 little girls. Though we don't have a date for that yet it could be as soon as next weekend.

Well, Brinley has had a couple days to recover and is doing well. She is off painkillers and actually up to full feeds already as of this evening so her digestion wasn't slowed down too much which is great! She is still on the respirator and the hope is to ween her off of that until she is once more on only the mist collar. Pray that she is able to make that transition well. She has of course traded her NG tube (feeding tube through the nose) for her mic-key button so her beautiful little face is now clear of tubing. She is still having lots of secretions, which is pretty normal but just means she needs to be suctioned often. Pray that clears up a bit.

Sarah and I and a few close friends and family members got to learn some infant CPR and tracheostomy care these last couple days as we prepare for home life with our bionic baby. Once more we got to meet some great people for this training and we're so grateful for all the amazing folks we're getting to meet through this.

Pray for the rest of our family for health. Sarah is very sick at the moment with what looks like bronchitis and is now on antibiotics; Alessa is on antibiotics for a sinus infection; Raina is on antibiotics preventatively for a Lyme carrying tick bite; Cailyn sounds like she swallowed a frog; I seem to be the only one not sick at the moment so pray it stays that way so I can take care of the rest of them. We also need to get our house ready for bringing Brinley home and being sick slows that whole process down so pray that would go well. We will try to think of some practical things people could help with for that since I know a lot of you will be asking.

Here is a video for you all to enjoy. Brinley is pretty mad at us in it but I love it because it is the first time she's really made this much sound so it's pretty exciting for us!

Successful surgery for our bionic baby

Greetings to all our fantastic friends, family members and devoted readers! Thank you all for praying; Brinley had a straightforward surgery, meaning nothing unexpected happened, which is good. She now has her feeding tube, a la a Mic-key button and the Nissen fundoplication was also done to address the reflux. We now need to wait as she heals and recovers until she is able to start ramping up her feeds back to full and hopefully weening off the respirator. This will be the crucial part to see if her breathing issues are indeed taken care of. Pray for swift recovery so she can come off painkillers quickly since they can cause her digestive system to slow down.

We will try to keep everyone updated over the next few days but we will be busy with learning how to care for little Brinley and don't know what kind of time we'll have.

Hopefully Brinley doesn't kill me when she's older for posting this picture of her but I think she looks adorable even though she's pretty well stoned here.

Surgery in the morning

Time to pray again for our little Brinley, who goes in tomorrow morning (Wednesday) for her G-tube and Nissen fundoplication surgery. It was decided yesterday with her GI consult that the nissen would indeed be the best thing for Brinley. This will hopefully solve the reflux issues we are seeing, which in turn we are hoping will solve the breathing issues. If all goes well then we are much closer to bringing her home! The surgery shouldn't be too invasive as they will attempt to do it laproscopically (or semi laproscopically, if that's a thing). She has a very good surgeon doing the operation and both things are fairly straightforward and well-established procedures but prayer for sure hands for all the personnel involved will be appreciated. The offical time on the schedule is 7:30AM but this could change depending on if any emergencies come into the hospital that need to preempt her procedure.

Otherwise, Brinley is doing great and our training for Brinley care begins in earnest this week as we have a CPR class scheduled for Thursday evening that Sarah and I and a few others will attend; we also have a trach care class being taught by the ENT nurse friday afternoon, also attended by a few others. Both of these will be important for getting us ready to care for her at home and having others trained to help support us along the way.

Here's a couple of cute pictures for everyone. Brinley's 3 sisters were pretending to take care of her at "the hospital" this morning. I think they're going to be great with her! Pray also, if you could, that our big girls would be able to see Brinley at the hospital before she comes home. We just think that would be good for them.

The Glorious Unfolding

Things are pretty stable now in Brinley land as far as new surprises go so I wanted to give you all some photos to preen over. We got to do our first bath with Brin (she needed it, trust me) so that was fun. We got to the hospital today and she was in the stroller, which was cute. We so appreciate our nurse for getting Brinley used to all these "regular" baby experiences as they sometimes just don't even occur to us right now with everything else going on.

Pray for tomorrow as Brinley will be having a GI consult to talk about her G-tube and also to discuss the reflux issue. There is a surgery that can be done to help with the reflux (it's called Nissen if anyone wants to google it) which has some potential side effects but which, in Brinley's case, might be the best thing. They would likely want to verify that it is indeed reflux however so pray for wisdom for the doctors as they discuss the plan of action.

And I'll leave you with this youtube video of a Steven Curtis Chapman song that our nurse shared with us this morning which she heard on the radio and thought of us. Thank you Steven for writing this for us :) And thank you all for sharing in this glorious unfolding with us.

Swallow test results and the walls of Jericho will...Come...DOWN!

Greetings friends, family and all those reading along with our saga. I wish I could say the swallow test went as well as the MRI did but it just wouldn't be true. The results from this test were a little disheartening but we are still trusting God to take care of our little Brinley as she grows and develops so that she will one day be free of the need for any assistance with eating and breathing. The speech therapist/pathologist (not sure what exactly her title is) tried feeding her a variety of ways in different positions but just couldn't get a good amount of milk to go down her throat. She explained about an air gap at the back of a "normal" throat where 2 separate pieces of tissue come together to squeeze food and drink down the esophagus; in Brinley the tissues are already somewhat in contact so when they squeeze they are pushing the milk in both directions and it is going up into her nasal cavity, forward back into her mouth and in some cases down her trachea. The reflux question is still up in the air as the views they got were too brief to get this information.

What this means is that she will need to have the g-tube surgery done although we don't yet know when. They will not continue bottle feeding her but will start to do exercises and stimulation for her mouth, "training" her for eating someday. Some of this I am stating as planned and in place when, in fact, I'm probably going beyond what is actually decided and definite since this test was only just this morning but I wanted everyone to know how to pray for our little girl. We're disappointed that she'll need the g-tube, yes, but when it is a necessary thing for her to be able to grow to see how her mouth develops then we're all for it.

Continue to pray for resolution on the apnea question as this is still up in the air. It may still be a reflux issue or it may be something we don't know about yet.

Raise your hand if you know the story of Jericho. Ah, lovely, most of you do but for those of you who don't I will tell it very briefly:
After Moses died Joshua took over as the new prophet for the Israelites. God had promised the Israelites a land of their own and, after wandering in the desert for 40 years they were finally getting there. But the fortified city of Jericho was in their way. Instead of fighting the people of Jericho, God told the Israelites to march around the city walls 1 time each day for 6 days and 7 times on the 7th day. They obeyed and after that 7th trip around on the 7th day the walls of Jericho fell down and they won the day without any fighting.

I'm skipping quite a bit but the point I want to make is in this brief description. I was reading to my girls tonight this story from their Bible and trying to explain to Cailyn what it meant. God made a promise and when there was something in the way of that promise God was the one who did the fighting; all His people had to do was obey and trust (be still and know that He is God :) I told Cailyn that Brinley being "sick" was our Jericho right now and bringing her home well was our promised land. We both got very excited at that! We're praying that our walls will come tumbling down so that, like with Jericho, it is undeniable that God is the reason.

Thank you all so much for reading and praying. We truly are so blessed as I know how busy all our lives get and any time you offer our way is so appreciated.

MRI results and what's next

To not keep you waiting, the MRI came back totally normal!!! This is excellent news but remember that this only gives information on brain structure, not function; but still an excellent hurdle to get past. I got to the hospital this morning at 11 around the same time Brinley's primary nurse got there and we both got to hear the news together. She is so sweet and loves our little girl, she jumped for joy when she heard. M, you rock! (keeping names out of it).

The next steps will involve the speech people and a swallow study to see where fluids are really going in that mouth and throat of hers. They use a tracer dye and x-rays I believe to see where things go. They will also begin to explore whether the breathing issues we are seeing are related to reflux, the leading possible culprit at this point in my mind if not in the doctors'.

Brinley is doing really well with feeding and putting on some weight finally. I got to do my first trach suction today, so...hurray? Actually it was not bad at all and was encouraging that, hey, this is doable...I can do this! There will be many other things to learn before all is done and we bring her home but at least it began well.

Pray for Sarah, who finally succumbed to the sickness that the rest of us went through (except Cailyn, who is healthy as an ox). She stayed home today so she missed her baby of course, but got some good rest in the process. Mentally and emotionally we have been doing really well this week. It helps that all the neurological tests have come back normal. We have been thanking God so much for all the good news and we continue to pray for healing and progress.

"Be still and know that I am God; I will be exalted among the nations, I will be exalted in the earth."  Psalm 46:10

So, I said I would be trying to figure out what God meant by knowing that He is God but I must admit that what He's really been teaching me is to just be still. It turns out I shouldn't have taken that part for granted. It has been very difficult to still my heart and mind through all of this but God is leading me in it and His peace is coming more easily and leaving less readily. We continue to be showered with blessings from all of you and we are so humbled and honored by your generosity and care for us through this.
It's starting to feel like we are going from walking through a tragedy to knowing the blessing that Brinley is for our family and being so very thankful for this experience, difficult as it is. We are establishing relationships at the hospital and meeting people we never would have had the chance to without this.

I could keep going but I think that is enough for now. It's late and I'm going to spend some time with my incredible wife. By the way, Brinley had a great hair day.

Star-Trek Baby (Lt. Warf)

Front view

Back view

Two days since the last post in "real" time probably feels like the blink of an eye. In NICU time it seems like an eternity. The bottom line is that Brinley has been stable since they put her on the vent. She is getting an extra 20 breaths a minute right now. She can be taken off of the assistance for baths, transitions to holding her and things like that and handles it like a champ. The doctors are working really hard to try to figure out why she was having the apnea episodes. On Monday they called in the neurologist and developmentalist. It seems like she has had consultations with everyone now! Both of those Drs found reasons to be concerned that her brain has not developed to where it should be. It still could. Or not. Time will really tell.

Today the lil lady had an EEG. That explains the Star Trek- like picture above. The results came back normal! She also had PT, OT and an eye exam without the dilating drops (also came back normal). Tomorrow is another big day. She has an MRI on her head and neck. It will also look at blood flow or arteries or something like that...this is to help determine if there are any abnormalities in the shape of her brain. It will not determine the function of the brain, but helps narrow down the diagnostic search.

Now for the fun part. Peter and I both got to hold her chest-to-chest today! We hadn't realized it was possible with the trach tubing, but with the help of our awesome nurses, we got some really great snuggles! Second, today Brinley wore a sleeper that used to belong to her cousin Aubrey. Aubrey is two and a half weeks older and therefore Brinley wants to be just like her when she grows up ;) Last but not least, Uncle Sam and (almost) Aunt Olivia got to hold Brinley today! They were the first people outside of Peter and I, so be jealous.

(In this picture, she is protesting the fact that she can't come home with Mommy and meet her big sisters.)


I know Peter has already mentioned this, but I also wanted to take a moment and thank all of your for covering us (and our kids) in prayer. The cards, books, gifts, parking money, gift cards, meals, lawn care, housecleaning, babysitting, flowers, texts and facebook comments are such a blessing to us. One of our PAs said something yesterday about Peter and I handling things so well and I was able to say that it was because we have a lot of people praying for us. We are finding that the benefit of being in the NICU for a while is that we are starting to really build relationship with some of the staff. Brinley truly has a great bunch of people working hard to help her be as healthy as possible and we are grateful!

Please continue to pray for:
Healing and quick/accurate diagnosis for Brinley
Wisdom for the medical team that is working with her, but not just for her, but the other babies as well
Health for our family
Wisdom in balancing life between work, home and NICU
Our three precious "big" girls- that God will use this time for their benefit. That they would know His love and ours even though our time is more limited.

*Disclaimer- Peter insisted I write the post tonight...and it's late...so, I apologize for the stream-of-conscious "left overs."

God knows you can't do anything...

"We're going to die!" they shrieked.
"Don't be afraid!" Moses said.
"But there's nothing we can do!" they screamed.
"God knows you can't do anything!" Moses said. "God will do it for you. Trust him. And watch!"
"But there's no way out!" they cried.
"God will make a way!" Moses said.
Another minute and it would have been over. But then the strangest thing happened...

This is a passage from the Jesus Storybook Bible, the bible we read to our kids at night. This is the conversation Moses has with the people of Israel after Pharaoh finally relents and lets them go but then chases them down with his army. The story is in Exodus 14-15 if you want to read it. This was the story I read to my girls for bedtime tonight and this section made me very emotional; Sarah and I are the Israelites right now and we're just praying and waiting for our "strangest thing" to happen, whatever it might be. For the Israelites it was the Red Sea being split in 2 and a dry pathway opening up. I will admit I have my doubts that a way will open for us but that is the place we need to get to in our relationship with God right now.

Brinley is now on additional respirator support because of her apneic episodes and their increasing frequency. We got to spend some time with her today and as I held her, any time she started to fall asleep her breathing rate would drop far enough that her O2 level would become very low, sometimes down into the 40's or even lower. Then we would stimulate her, rub her head and feet, waking her up and she would bring her O2 level back up without any help. But she couldn't get any rest this way so they eventually agreed that she needed the respirator to help her out. She will get a consult from neurology tomorrow with plans for an ECG and MRI as they try to figure out what might be going on. Now that she is on support her bottle feeding might be postponed for a bit so that is a small setback.

Holding her was great; she loves sucking on a pacifier (we call it a bucka in our family) and was happiest when I kept it in her mouth. Her feeds are going great and she is pretty much up to a full feed, which is great; she's gaining weight, so that at least is going in the right direction. I wore a mask as I held her since I'm still a bit sick and didn't want to give her any germs but she didn't seem to frightened by it (she's already seen a lot in her short life). I need to use a thesaurus for the word great. Next time.

Prayer for apnea/breathing issues

Greetings again friends and family. Brinley got some more bottle feeding time today with mommy and did very well again. Still just a small amount but it's still positive. We want everyone out there reading this to start praying very specifically right now for Brinley's breathing to become stable; she is having a bunch of episodes of apnea or something like apnea where her oxygen levels drop, sometimes dramatically, then come back up. We're not sure what the cause of this is yet but the doctors are concerned that it may indeed be something neurological. They have started her on caffeine which is used to stimulate development of the part of the brain that controls parts of the breathing process. We'll see in a couple of days if this helps at all. Her lungs still look great so they're pretty sure this doesn't have anything to do with any form of lung disease but we want to get to the bottom of this.

We continue to pray for complete healing for our little girl and we continue to trust in God's grace for each day and what curve balls Brinley throws at us. Pray for me as I was not able to go see her today, having caught what Alessa and Raina had; I need to get better so I can spend some time with my baby. Other than the breathing, which is a pretty major thing of course, Brinley is doing very well. We love and miss her and look forward to bringing her home. Sorry, no new pictures or videos today. Once again, thank you all! You are all so appreciated! A special thanks to those who came over and helped us with yard and house work today; you rock!

Brinley's first bottle!

Today was a good day all-in-all. Can I just say that I am so looking forward to every day being a good day again? It'll happen someday but it doesn't seem to be right now :) What made today good? Little miss Brinley had her first bottle today. She did great, surprising the doctors and nurses with how well she took it. This is a great first step as it tells us she can both establish some suction (this was an unknown due to her tongue and cleft palate) and swallow. It was just small beginnings, about 10ml, and some came out her nose and she spit up some but most of it seemed to be swallowed. This doesn't proclude the need for a g-tube but it is a step in the right direction. The g-tube might still be a good option at this point because she will still be able to practice bottle or breast feeding while not being reliant on it for her daily nutrition. It was so great to see her do something better than we had hoped with everything else she's gone through so thank you God for that little blessing! Everybody loved the video I posted yesterday so here are a couple more.

Pray that Brinley stays stable as she had a pretty big O2 level drop (Apnea episode) at one point but eventually got her own level back up without needing added oxygen. These kinds of things tend to stress us out and wonder if there is something else going on we don't know about yet.

Pray for Sarah to continue to recover as sometimes, in all this craziness, it's hard to remember that Sarah gave birth just over 2 weeks ago and that is a traumatic process without all this additional stress. Pray for Alessa and Raina to continue getting healthy; they're improving nicely.

I just wanted to say thank you again to everyone who is praying, bringing us meals, watching our kids, giving us words of encouragement, etc. We've been so blessed! Thank you to the guys at work for being so flexible with my schedule; I know there are a couple of you reading this. Be blessed everyone! We love and appreciate you.

First trach change

Yesterday was our little Brinley's 2 week birthday! And what a couple of weeks they have been; the most trying of our lives. I'll get right down to it: today Brinley had her first trach change (just a short while ago as I type this) and it went very smooth. She took it like a champ. After it was done she started singing "Let it Go" from Frozen and it is still stuck in my head (thanks Brinley).

Brinley prayer needs:

• Her O2 saturation keeps dipping down. It is just briefly before it comes back up but we'd like to see that more stable.
• Mouth feeding attempts should start in the next few days so pray that goes well.
• Her genetic newborn screening results came back and it indicates she either has CF (cystic fibrosis) or is a carrier and the test for that can't be done until she is at least 8 pounds. We knew this was a possibility as Sarah and Cailyn are carriers so please pray she is JUST a carrier and peace for us as we wait until the test can be done.
• Complete healing for her tongue and everything in her mouth!!! We are still daring to hope for this and will continue to pray it over her no matter how long it takes.
• Pray that there are no other unknown issues, particularly neurological.

Prayer needs for the rest of us:

• Alessa is still sick though improving and Raina seems to be a bit sick as well so pray for our other girls to be healthy so that when they are allowed they will be able to visit Brinley.
• Prayer for Sarah and me - This one needs a paragraph or two on its own:

The last couple of days has been something of an emotional struggle for us both. We are hurting for our little girl naturally and sometimes it gets overwhelming just thinking about what life is going to be like for the foreseeable future. The continued uncertainty about things is taking its toll and we're trying to just lay down our fears and anxieties. Dividing our time between Brinley and the other 3 and trying to get some work done is also draining mentally and physically. Please pray for endurance, health and good sleep for us. Pray for peace in our hearts and minds amid the uncertainty and that we would be able to let God supply all our needs.

Yesterday, as I was driving, I was feeling pretty downhearted and discouraged and I remembered what Andy spoke about on Sunday about taking the time to listen to God and not just talk at him. I've done plenty of talking and asking so I gave listening a chance. I drove in silence to the hospital trying to not let my mind wander, especially to all the fears and anxieties vying for my attention. Now, maybe some of you are experts at silently waiting for God to speak but my mind wanders easily so this was a challenge for me. The one and only thing I heard during that drive was "Be still and know that I am God". So, I'm trying to figure out what it means to know that He is God. I'm continuing to lean on Him because apart from Him I'm a wreck. I got to hold her for a couple hours today so that was great! We love her so much. 

Pray, pray, pray! Thank you all again so much!

Bringing things back up to speed

Sorry for skipping a couple days but it has been emotional and exhausting for Sarah and me, as we got word that Brinley's temperature was back up and they had found blood in her stool. (on Sunday) Now, thankfully her temperature is back to normal and they attribute it to mucus buildup that needs to be sucked out periodically. Instead of writing it out in paragraph form here is the timeline of the last couple days:

• Sunday morning - word that she had an elevated temperature again and blood in stool
• Sunday afternoon - Sarah and I went to see Brinley
• They took her off the ventilator and moved her to a mist collar (provides humidified air for her to breathe but breathing entirely on her own)
• Feeds started again
• Sunday night - temperature back to normal. Feeding but not great yet (the sedative and morphine in her system can jam things up)
• Monday morning - I went to visit Brinley and got to hold her for about an hour and a half :) temperature still good. She has been moved from her incubator type bed to a crib. Doing pretty good on just the mist collar but occasionally her O2 would desaturate then come right back up. Feeds still not good yet. Completely off morphine!
• Monday night - they put her back on the ventilator with CPAP to help her ween a bit since she kept desaturating. Feeds going better now. A couple of good stools. Off sedatives completely so no more drugs! They're hoping she will stop desaturating with the drugs out of her system. 
• Monday night at the our house - Alessa wakes up with a fever and I wind up sleeping on the couch with her. This will make visits to Brinley a little more delicate since I don't want to bring her any germs. Sarah has also been feeling pretty run down the last couple days so she actually didn't get to see Brinley yesterday :(
• Tuesday morning - Still trying to figure out who is going to see Brinley and when. The eye doctor will see her today

The first trach change is still scheduled for Thursday so things will be able to progress following that. Keep praying that she will be able to feed by mouth. Pray for the rest of us to be and stay healthy and have the energy to keep up with everything! We've been so blessed to have meals provided by so many people so we haven't had to think about cooking. So many people have also been watching our 3 big girls while we visit Brinley and we thank you so much for that! Please keep praying for our little girl as she goes through all of this and for us so we can spend time with her as she gets to do more baby things like just being held or sucking on a pacifier. Again, we love you all and covet your prayers so much.

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God - Philippians 4:6

We got to hold her! (Pictures)

Some eye candy for you. I got to hold her for the first time today! She's doing great and is being weened off the ventilator. She has also started milk through the feeding tube again.

Detailed Update and Praying for a Boring Week

You turned my wailing into dancing;

you removed my sackcloth and clothed me with joy,

that my heart may sing your praises and not be silent.

Lord my God, I will praise you forever.  -Psalm 30:5

I wanted to begin with this passage again because I don't know if I've ever experienced a verse so personally and profoundly before. I can tell you that this is me to very core right now and it is certainly not because of anything I did but what God has done in me (in us actually as I think I speak for Sarah in this as well). I am the kind of father that has trouble sleeping if one of my kids has a cold or fever; I just want to fall asleep right next to them in case they need daddy. So, to have a baby in the NICU and not know her future was torturous... at least in the natural. But I cannot stress to you all enough how much your praying has meant to us as a family. It has done a real and tangible thing in our hearts by bringing a peace that goes beyond understanding; peace had no business being anywhere near us the last couple days but God used the prayers of so many people to quiet our hearts and minds and just let us wait on God.

Our baby came out of the OR with a tracheostomy... but we had peace, even excitement, joy! Our little girl has a hope and a future! She may need a feeding tube still, we don't know that yet, but we still have peace. Part of that peace I also attribute to testimonies of people that have gone through some similarly tough battles in their lives and shared with us in encouragement and wisdom born of experience.

On to facts and details, what we know and don't know, current prayer needs, etc.

• She has a tracheostomy, which, for those who don't know and haven't googled it yet, is a hole cut in the front of the neck to provide an airway to the lungs that bypasses the mouth and nose. In Brinley's case the formation of her tongue made this the best option since, although her lunges are fine, she simply had to work too hard to get the air into them. The trach provides a stable (though admittedly intimidating for us) way for her to grow until her tongue either develops on its own or can be repaired by her ENT doctor.
• Facts/Issues/Prayer Targets: The front of her tongue is not very well developed and was flopping back during breathing, occluding the airway. The back of her tongue is more developed but we're still learning just what the shape of things are in there. We'll get to meet with the ENT in his office at some point and look at some models of a tongue to get a better idea. Her epiglottis seems to be ok. She has a cleft in the soft tissue at the back of the roof of her mouth. Her gums seem to also have some problems so she'll probably need some sort of dental work at some point.
• The trach in place currently will be in for about a week and is sutured (stitched) in place until the hole itself heals (think of pierced ears) and then the trach she will go home with will be put in place (held in place with a velcro type of collar)
• She is currently sedated so that she doesn't move around too much to allow for the trach to heal quickly. Feeding via a feeding tube in her nose will begin hopefully tomorrow as anesthesia tends to stop up the digestive system for a bit and it needs to kick back in before they begin giving her milk again. 
• After that second trach is in place they will attempt to feed her by mouth. This is the next critical item in the waiting game and should be enemy number one on everyone's prayer hit list for Brinley: no feeding tube necessary!!! We want to be able to either have Sarah nurse her or bottle feed her. This will be made difficult by the problems with her tongue and the cleft in her palate.
• Please pray for Sarah in regards to the care we will have to give with the trach at home. I am doing fine with the thought of it but it bothers Sarah (medical stuff and bodily fluids have always made her very squeamish.) more and she needs your prayers (and encouragement for those of you with experience)
• We continue to pray for complete healing! We are still believing that God can shape and form her tongue and cleft and that the trach could come out miraculously quick. From where we were a week ago when we first got the news over at St. Peter's to where we are now is already so amazing. We were given news that she might have an abnormally small trachea, no tongue and no epiglottis. We didn't know how she could live with that list of problems. Now, we know she'll have a future. She'll breath and eat normally some day, I believe that. It might be a long road but it's one I know will still be filled with joy and dancing and a heart that will not stay silent.
• All the nurses and doctors have been so wonderful and caring for our baby girl. The ENT was so great in talking to us and was so hoping she would be able to come out with no trach in place but he really feels this gives her the best chance.

Once again, we love you all and thank you for the prayers. Keep them coming. This will likely be a "boring" week as she is sedated and heals but keep praying for our little Brinley Noel. I may not post for a few days unless something comes up. Praise God for all He's done already! Thanks for dancing with us.

Quick update before a longer one later (We're dancing!)

We can see her face!

First off, she came out of the OR with a tracheostomy in place. With that said, we are so very relieved and excited for our little girl right now. Everything went great even though the doctor was really bummed he had to wind up doing the trach. Her tongue is just not well-developed enough and it kept occluding her airway. She was able to breath on her own without the tube in place and they gave it a good 10 minutes but she was really working hard to get the air in so the trach really helps her and gives her a chance to grow and, hopefully, allows her tongue to develop on its own as she grows. Her epiglotis seems to be ok and they would like to try feeding her "normally" once she recovers from the trach (about a week).

I'll write more later but praise God, who is awesome! We are rejoicing in our hearts and so excited for our little girl. He's got her and our very best in mind. Keep praying for continued healing. Just because she has a trach doesn't mean God won't still heal her tongue! We love you all. Feel free to text me but calls might be a bit overwhelming for now.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Ephesians 3:20-21