This Little Piggy

We have a surgery date for the removal of lil miss Brinley's extra toes (and endoscopy).  Feel free to put it on your calendars so you remember to pray- Friday, January 16, 2015. Woo-hoo? Ever since Brin's birth we have been joking around that there needs to be a new "This Little Piggy" song to account for the 6th toe. Anyone feeling creative?

This little piggy went to the Dr
This little piggy stayed home
This little piggy had therapy
This little piggy had none
This little piggy played the piano
This little piggy went wee-wee-wee all the way to the bathtub.

OK, so someone out there can do better than that...submissions can be made in the comments section below ;)

Brinley is currently obsessed with her hands.

Cailyn turned 6 earlier this month and requested a Frozen party. 

Of course she was too busy to let me take a picture of her. 

Nurse M still loves Brin :) 

Melt my heart 

The girls celebrating my grandfather's 90th birthday

Alessa, 2 going on 20 

One of Brinley's favorite places on the planet 

CORE Physical Therapy (Seriously, if anything hurts, go there.) 

Hands and knees during PT the other day! 

Further proof that we do have the best nurses. 

*permission was given to post these pictures ;) 

Happy early Thanksgiving everyone! Thank you so much for praying for us these past 7?! months. We are grateful for each of you. Stay safe and warm!

A Long Awaited Video Update

Herein I reveal my utter need for a shave and a haircut whilst sharing how our little Brinley Noel is doing. I do this using the most advanced of techniques known as the selfie video which wert then uploadethed to the YouTubes for worldwide distribution. Please enjoy and continue to keep us in your prayers!

So a paci, a passy and a trach walk into a bar...

Just thought I'd share that Brinley's trach came out today for the first time :) Yes, we can smile about it because she was fine and we're much more comfortable now with all her crazy stuff. Lessa and Raina were moving her around and picking her up so that's probably how it popped out. Here's how it was discovered:
Sarah: Hon, Brin is making noise even without her passy valve (spoilers) on!
Me: (thought bubble - that doesn't sound right. I should go look) Umm, hon, her trach is out.
Sarah: (laughing)
Me: Hey, could you help me with this.

Brin also got to facetime her cousin that is just 3 weeks older than her. They chatted for a while. It was cute.

Enjoy these 2 videos. Both are milestones.

Thank you nurse J for my first good night of sleep in 2 weeks!

5 Months of Brinley (now that she's almost 6!)

It's been so long since I last wrote to you all that I don't remember what I need to include to bring you all up to speed so if I repeat anything you already know please forgive me. 

I'll speak mainly in generalities for this post since the days are starting to blend together with some great days sprinkled in with a lot of very draining ones. Most of the time we're just trying to survive the day but we're beginning to get to the point where we can think about conquering them. We are so thankful for God's grace through this insane adventure, without which we would surely by now have regressed to living like feral beasts (just feeling melodramatic). And now, bullet points!

• Brinley is killing it with her PT, getting stronger and more mobile
• Surgery for her feet (ENT will do the endoscopy at the same time to plan the mouth surgery) is down to two possible dates and we will have details soon
• A new favorite word of mine is perspicacity
• We're starting to feel a bit isolated so we'll have to start getting creative
• Speech continues to be challenging due to Brin's tongue. She is finally starting to enjoy the sessions at least. We have smashed our previous record of two good sessions in a row!
• She has now switched from Ranitidine to Omeperozole to manage her reflux
• Brinley is getting huge. Around 18 pounds now.
• We have three nurses now and are getting all of the day time (plus two evenings a week) hours that we want. Please pray for a night nurse to step up! We seriously need sleep.

Picking out her own toys- thanks nurse C!

Sneaking applesauce (don't worry, suction was nearby) 

First time grabbing a toy by herself! 

Brin has the best team of therapists around

Naptime with nurse J 

5 Months old 

Nurse "M" can not get enough of us. 

She used peanut butter to get a whole ton of tiny burrs out of Raina's hair- on her day off! 

My mom has a theory that nurse M comes to get stories to pass along. Not a bad theory. 

First ever ballet class for Alessa 

Our Family 

(Thank you Picture My Heart Photography for another beautiful session!)

Big sisters making sure Brin was dressed to impress before hanging out with her friends 

Little loves 

All the "D" cousins apple picking 

You light up our lives

*From Sarah- Peter will post a double video update soon. There is one thing we left out of this post that Brin wants to show you herself. This update has been almost two weeks in the making already..... and I know you all have been waiting to hear and see more! Thank you again for hanging with us on this journey. Please continue to pray. The big sisters have hit a rough patch. We have been "screen" free for a week to see if that helps settle things down. We know they have been through a lot this past year as well and are trying to have a mixture of firmness and grace.

See You in Spring!

Thank you, thank you , thank you for your prayers. We have felt a tremendous difference! Please be encouraged that God is hearing and answering your prayers. I have had a few good conversations with Peter and our pastor's wife and am doing much better emotionally as well. Like when the disciples were in trouble on the lake and Jesus called Peter out to walk on the water (Matthew 14:24-33), it is so easy to look at the waves and start sinking, but we walk by faith and not by sight (2 Cor 5:7) and God IS here right with us.

Brinley in her exersaucer. She can tell she's more independent and LOVES it!

Brin is also enjoying her stroller, sans carseat

First apple picking- mommy may have given her a teeny taste ;)

We haven't had any more doctor appointments since the last post, so I don't really have anything medical to share. Brin has had speech and physical therapy sessions though and is continuing to progress in those areas. The myofascial release PT is transforming the shape of Brinley's head. It really is incredible to watch! I am so grateful that I knew about this kind of therapy and that she is responding so well to it! Our early intervention PT is fantastic too. She is very pleased with Brin's development both physically and mentally. Brinley can sit unassisted for 5 to 10 seconds and she really enjoys it. Also, she is starting to pull herself back to midline (sitting straight) when you move her out (you support her but very minimally so she feels like she may fall). This is a great sign because it is very hard to teach what midline is for a child to know they should correct his/herself when falling. Speech is still slow, but at least she's not screaming through the whole thing now. I commend Miss "B" for her persistence!

Cailyn started school a few weeks ago and loves it! She takes training her sisters for kindergarten very seriously now.

Biggest and littlest- swoon

In other family news, our 2 year old has coxackie virus. She is polka-dotted and wearing polka-dot clothes on a polka-dot bed. Poor thing. Her fever broke yesterday and she will be considered not contagious later today. Keeping a 2 year old confined to her bed/couch is NOT easy! We are really doing everything we can to keep the other kids healthy. Clorox wips, essential oils sprayed around, quarantine, loads of IQ dropping TV, the list goes on ;)

My piles of loves

I ran across this picture the other day and could not believe how tiny she looks! This wasn't even as small as she was...anyhow, I know it's not #tbt, but here it is anyway.

Look how far she's come!

OK, so here's the kicker. I spoke to our pediatrician the other day about fall and winter and germs. (We had already planned on last Sunday being Brinley's last time going to church until spring.) She said that with the number of kids in our house and their ages that we basically have a day care going on and that none of the kids should go to crowded places this winter. I was surprised! Our pediatrician is wonderful and laid back (one of the things we love about her), so we are taking her recommendation very seriously. She said that while Brinley would be exposed to germs at some point she really doesn't want her getting sick this winter. So, please don't be offended if you don't see us at church or large parties. We are praying for sanity and creative ideas to help keep the girls busy during this season. Here's hoping they are old enough now to enjoy playing in the snow for a few hours!

Prayer points:
-We're pretty much able to cook and clean, but house projects/maintenance are still beyond us. We would love help refinishing the front porch and putting in a railing on the side entrance if anyone is up to it.
-Continued head growth and brain development for our Brin.
-Wisdom for doctors and therapists as they work with Brinley.
-Grace and discernment for Peter and I as we interact with insurance agencies (and more), nurses, therapists, doctors, friends, family, our children and each other. We want to see people as God does and be sensitive to any opportunities to bless and minister to those around us.

Brinley is 4 months old. 'Bout time we gave you an update!

I am just going to dive in....
*While both Peter and I enjoy blogging, each post takes a while to write, find and upload pictures, etc, so we have not had that much time and energy lately.

*Our nursing care started last Wednesday! This is obviously a huge answer to prayer. We were able to keep the same awesome nurse "J" that has been here off and on since June. We are also meeting and training other nurses. We are filling the daytime positions first (since I still can not do all the kids/chores/meals by myself and Peter has to work), but hope to add two nights a week as well. We realize sleep deprivation is a normal part of having a baby, but this time there is not really an end in sight for it, so we're looking to maintain long-term health.

*Brinley's adaptive stroller is finally ordered and should get here in 2-4 weeks. We have been using our regular Graco stroller, but it is simply not made to hold that much weight (O2 tank, suction, ventilator, feed pump, feed and of course the diaper bag) and has started to fall apart. Brin's physical therapist (is great!) is optimistic that she won't need an adaptive stroller for very long, but it will help now.

*Brin has hit 15 pounds!

*OH, this Monday, we went to the pulmonologist's office for Brinley's sweat test (CF) and it came back negative! Praise God!

*Monday was also plastics. They were hoping not to do the foot surgery until spring, but it turns out that Brin has a whole extra tarsal/metatarsal so the curvature would continue and cause more damage and pain. So, now we are looking at January/February for surgery now. The ENT Dr will do an endoscopy at the same time, so it will be a balance of making sure she is old enough to get the measurements that he needs (which will help determine the mouth/airway surgeries) and trying to prevent more curvature in the toes....please pray that we can settle a surgery date that will work well for both of those needs.

*We have started Brinley on a high dose of reflux meds and that has helped tremendously with the frequency and severity of her desats. She hardly ever needs her vent during the day now. The other night "J" did a night shift and Brin didn't need the vent for her SATS that night either! She was on it for half an hour for moisture. We're hoping to get a mist collar soon to help manage that.

*Now that Brin is so big sisters feel very comfortable "holding" and "snuggling" Brin. To us it looks more like wrestling and choke-holding, but Brinley loves it! Her sisters are her absolute favorite.

*Brin has the best physical therapists! Yes, two. One does the muscular coordination and strengthening and one does miofacial release. They rock and Brin has improved the most in these areas.

*Someone smiles now! She is just starting to flail around when excited too (a milestone that the developmentalist was concerned about because she hadn't done that when we saw him).

*We are trying to help her start focusing on and interacting with toys, books, etc

*She makes a noise! It's this little lip fart thing that she started doing the other night. Peter caught it on video. This is how we "talk" now.

*I took Brinley out to see some of my extended family for a few days the other week. We both survived! She got to meet her great-grandparents and many aunts, uncles, and cousins.

*A day a local beach with friends. Brin slept through most of it. It was crazy hot and mama got a good burn.

*The result of trying to keep the big sisters sane while we were stuck at the house training new nurses.

*Be still my heart!

*Brin is loving sitting lately. She tries to sit out of her carseat, or if you're holding her like a baby, she will fuss until you sit her up. She only lasts a few minutes at a time in the Bumbo, but isn't it cute?!

*Prayer points- Brin's tongue is still way back there...needs to come forward.
                        There are some things going on at church and we have felt our prayer covering falter a bit. Please continue to pray for us. I know it's been 4 months, but we're really still starting this journey.
                         We had an appointment with a pediatric developmentalist (lovingly referred to as Dr Doom and Gloom) last week. I cried for a week. No joke. He was concerned that her brain isn't growing and developing as it should. I can not emphasize enough how hard it is waiting to see if/how she develops. We want so badly to be able to keep Brinley home and part of our family long term. This is the thing that I have the hardest time allowing God to give me peace about. If there was anything that I could do to fix it, I would. The bottom line is that she is still improving and developing and we celebrate each and every mini milestone.

Filling In the Gaps

                                 

First, a shout-out to all of you that have stuck with us these past THREE months! Sometimes it hits us all over again just how much is still ahead of us....but God is faithful. He truly has been and we trust that He will be with us and walk with us as we press on.

There are a couple of things that have changed in Brinley's treatment lately:
-She has started with physical therapy. At her first appointment her therapist was surprised at how much progress Brin had made in the month between her evaluation and treatment. Since then she has continued to progress each session. At first it was all about head control and we are now moving on to weight bearing in her arms as well as some trunk control. She is even starting to sit with support! "C" (the therapist), said that a lot of babies with similar backgrounds to Brinley are not comfortable in any position out of midline (lying or sitting flat basically). So far, Brin has handled every position well. She definitely has a way to go and prefers her right side, but she is doing well.

During PT and conked out after ;)

-Speech therapy. Where to begin....basically, Brinley's tongue has 3 lobe shapes. They are connected, but make her tongue essentially fold in half backwards. I have never seen or felt the top side of her tongue. During her speech sessions Brin is typically upset. I end up having to suction saliva out of her trach for hours afterwards. It is very slow moving and discouraging. Imagine putting your finger in your baby's mouth to the point where they gag and trying to scoop their tongue forward....no fun for any of us. We understand that this will help her, but honestly, it's the part that we are the worst following through with. She used to tolerate the massages that we need to do on her cheeks, but not any more. Please pray that Brin starts to relax during these times so we don't feel that we are torturing her and so her secretions aren't as severe.

-Apnea. This has been such a journey! This past week we met with the pulmonologist and he was concerned about the frequency of her desats (when the O2 levels in her blood drop significantly). He said the cause is likely one of three things: aspiration, reflux or seizures. During her NICU stay, Brin had an EEG that came out normal, so we are thinking it's not seizures. The most likely culprit seems to be reflux. We did start her on zyrtec and it really seems to help, but the Dr had mentioned that some patients need it 3x a day, and we feel that may benefit Brin. We are planning on calling Monday morning to see what he thinks. We do know that aspiration causes some desats and it is hard to tell what causes them unless you're really watching and happen to notice if she has recently swallowed or not. There does seem to be a trend near feeds and before her next dose is due, so we think we're on the right track. Today she has had a few events, but yesterday, Brinley didn't need her vent at all!

Brin's first snuggle with her favorite red-headed uncle

-Me. While we were on vacation I really struggled with how "normal" everything felt when there is this glaring difference having Brin and all her equipment. Having to plan to the last detail. Taking turns out by the fire because she can't be near smoke, etc. It took me several days to let go of schedules and diganosis and just relax. While processing my thoughts I looked back at every blog entry just to see where we had been. It felt so strange to read back the words we had written. The depth just didn't seem to come through. It is just so hard to put into words the ramblings of the human heart. Oh well. Peter and I are getting closer to being able to go out on a date and the very thought of that is exciting! Our nursing care should be able to start in a week or so. We got approval from our insurance and are starting paperwork with a nursing agency on Monday. Please pray that we will have wisdom in scheduling, staffing, etc. Having people in your house so often can be a very complex thing. Add into that the fact that I really want to be Mom to all of my kids, and trying to find boundaries and letting go where I need to (because, I honestly can not be Mom to all of them at once right now) and it is even more tricky.

"20 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, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." Ephesians 3:20-21

He IS able, and we are watching and waiting and praying to see how He is going to work all of this out for good. It was so encouraging to hear from her ENT how much better her mouth looks. He is the only one that has actually scoped her and has been in the picture since the beginning. He actually said "This doesn't even look like the same baby!" That my dear readers, is God's hand of healing. More tissue in her mouth, development of her chin, the tongue moving forward more- these are things that are explained in no other way!

Thank you everyone who has continued to pray for and practically love on our family. We are humbled and blessed by our church body, friends and family. May God richly bless you in return! Keep standing with us. God has this.

Brin is chunking out so nicely that sisters are getting more confident in holding her and moving her around. Snuggles with Raina while watching Swiss Family Robinson.

A long overdue update

It's hard to know where to start after more than 3 weeks away from you all but I'll begin with this: Sarah and I are doing well and little Brinley is doing great! Life is busy and exhausting but in that I think we are not alone. Since bullet points have been very popular and it helps me organize my thoughts let's get to some:

• Brinley went on her first vacation. We got to spend a week up at Indian Lake with Sarah's family. It was a nice time and although relaxing comes at a steeper price these days. We did get to do some and having family around to help with the kids and just spend time with was great! She did great despite some concern midweek about a low heart-rate (more on that soon)
• Brinley had a couple of great appointments today with pulmonary and ENT. Pulmonary is very pleased with how well she's doing and because of her apnea type symptoms that she continues to display will be trying her out on prevacid to see if what we are seeing is due to reflux. Her ENT doctor was very impressed at how well her mouth, chin and jawline are developing and was surprised at how much progress she'd already made on her own. To this we can only say thank you God for answering all the prayers going up for Brin.
• Brinly is getting rather huge. She is up to 13lb. 6oz.
• She has started her physical and speech therapies and is making some good progress. Her speech therapies will be a long road as we work on getting her tongue to lie flat so she can work on swallowing, eating and speaking. This is an important one so please make this a Brin prayer priority!
• Her eyes are getting better with focusing, though she is still on Robinul, albeit a very low dose.
• Another prayer point: that the nursing care would begin very soon. If I had to estimate I would say within the next 2 weeks but we don't have a definite yet.
• There's a lot more to say but I am very nearly asleep typing this so I will leave you with a bunch of pictures and a couple of videos to enjoy and we'll write another update soon to fill in the gaps.
• Thanks to everyone that continues to bless us in so many ways!