Life With Brinley

This picture is our girls with their cousin Hudson, we had a stand-in for 

Brinley who was still in the NICU. It is so nice to have her home now!

I apologize for our prolonged absence. Life with Brinley is all-consuming. I honestly don't quite know how to put the past two and a half weeks into words. First, we are very grateful to have our whole family at home. Brin seems to be thriving. We have already taken her to seemingly countless doctor appointments and I honestly could not tell how many people have been in our home. One day we had nine people come through. They can include anyone of the following: Medicaid people, supply company people, Brin's case worker, Early Intervention, visiting nurse, some of our NICU friends (we have had two here so far!), friends and family bringing meals or helping with cleaning or kids, or cleaning the kids ;) and her therapies haven't even started yet!

For the most part the Dr appointments have been planned and things are going as we expected. The one exception was addressed by my mom in the last post. We were very discouraged by the thought of another surgery (on her skull nonetheless!). This Wednesday is her skull x-ray which will determine if surgery is needed and how extensive it would be. We arrive at 8:30am and have four different appointments. I'm thinking Peter may not make it in to work that day.

This past week Brinley started getting her immunizations. Our pediatrician decided to cut one of them out and only give her the ones that pertain to respiratory sicknesses. We agreed that she would need as much help staying healthy and breathing as she can get come fall, and it's not exactly easy to load Brinley and all her gear into the car just for a shot, so that was what we did. That day she just slept a lot but the next day she ended up with a crazy high heart rate and thick secretions. Thankfully, a new nurse friend was with me that day and helped me keep her as comfortable and safe as we could. She was unable to come off the respirator at all that day and spent a few hours on oxygen as well. Suffice to say, I think we will have to go even slower with immunizations in the future.

Our Medicaid process seems to be coming along fairly well now. We may end up getting Brinley's therapies and Medicaid number around the same time late July. So, at this point it is mostly exhaustion and sheer exhaustion with a whole lot of love, cuddles and maybe a side of tears. We love our girls so very much and it is hard for me not to be able to give each of them the attention that I normally would be able to. Even Peter does't have as much energy for nightly wrestling as usual. This weekend my cousin and his wife visited and he did a rock-star job of wrestling/playing/fighting with them. Thank you #thor!

We have been trying to continue some of our normal weekly activities. Brinley's first outing was to my brother-in-law's soccer game on father's day. She did awesome! We have since been to my brother-in-law's engagement party, which was a blast. Brinley got to meet her aunt, uncle and cousins from VA, both of Peter's grandmothers and one of mine. Our oldest was baptized at church last Sunday and it was such an amazing experience having our whole family there to see it. Brin cheered daddy on at our church softball game as well. Last night we got chinese and ate at the local park. It is a process but we are making it with a lot of prayers and hands-on help. I want to thank all of you that were here this week playing with the kids, cleaning the house, holding Brin and chatting. You guys are enabling Peter to go to work and helping me not lose my mind.

Here is what you really read this post to see ;)

Brinley's NICU primary nurses J & M- we love you two!

Brinley meets GG

And Sittou (fun fact, Brinley is great grand baby #31 for Sittou)

At daddy's softball game

Snuggles at the park

Brinley's first ride down a slide! She kept her sats at 100

Naptime with Daddy 

Storytime with Raina is the best

What we are really like

Putting on our "normal people" faces

Please keep the prayers coming! We will let you all know how Wednesday's tests pan out. Thank you for still standing with our family two months later...it means so much to us.

Guest Post from Nammy

Psalms 145:4 "One generation shall praise Your works to another, 

And shall declare Your mighty acts."

The musings of a Grandma-

Since Sarah and Peter have been too exhausted at the end of the day to update the blog, I offered to do it for them.  Those of you who are parents know you would do ANYTHING to spare your child pain of any kind.  But you also know that a certain amount of pain is good in that it teaches them coping skills, prepares them for life and shows them that they can come through it a stronger person.  However knowing that does not diminish your desire to do ANYTHING to spare them pain.

Watching my daughter and son-in-law go through sleeplessness, impossible decisions (such as do we reduce the robinul dose to reduce harmful side effects or do we increase it to prevent frequent desats?) , being torn between how to share the precious hours in a day between caring for a very needy baby and 3 other very young children, and having no down time at all because when all the children are ok for a few minutes there is a mountain of paperwork to fill out, phone calls to medical supply companies, arranging appointments with doctors, physical therapists, occupational therapists, visiting nurses, etc., has been very tough for this mother.  On the other hand, seeing them persevere, seeing them cry out to God and hear Him say, "Be still and know I am God", and seeing them live their faith in such a real way that their 5 year old asked to baptized helps me trust God with their lives, as well as with little Brinley.

So, I have mused, but now for you bullet point people I will outline the current news and prayer requests.

-Brinley is gaining weight.  She is gaining more muscle tone and responds to stimuli (like her sister's constant kisses)

-Cailyn Joy was baptized this Sunday, at her own request!  She came up out of the water with a smile that was dazzling.  When asked why she wanted to be baptized she said it was because she "loves Jesus so much."

-Raina had a fun filled 4th birthday party with friends.  Peter made a obstacle course that started with a new slip 'n slide and ended with some kind of balloon hockey.

-Peter's  bother and family were visiting from VA this and the family had a great time together on Sunday including fun cousin time for the girls.

-The family was blessed by some funding to pay for nursing help a few times a week until the Medicaid program for this service kicks in.  Thank you!!

Please pray specifically for these things.

-The  plastic surgeon says Brinley's soft spot on her head has closed prematurely.  They will do an x-ray and then decide whether they will have to surgically open it back up. Pray for a miracle.

-Pray for Sarah and Peter to be able to find and schedule nurses who are a good fit for their family quickly.

-Pray for peaceful nights full of good sleep for all.

Thanks to all the folks who have brought meals, cleaned the house, helped with yard work, given cash and gift cards and helped take care of the children.  This "bearing one another's burden" really makes a difference.  They couldn't do it without you!  Keep the prayers coming too.  They provide the daily grace needed to navigate the new "normal" at the house.

God bless you!  

Mary Louise  (or as the kids call me, Nammy)

Bionic baby at home

Good evening or morning or afternoon, depending on when you read this; for me, it is good night after writing this. I am sorry I haven't written a post in a while but I have been drop dead tired pretty much every night since she has come home. Life is manageable but so very tiring. I think I've already fallen asleep twice writing this first paragraph (not kidding).
Brinley has now been home 6 days and 5 nights and we are still sane. Each day has gotten a bit easier on the whole as we adjust to the routines. Today she had her first set of appointments as we went to her pulmonologist, GI doctor and ENT specialist. Baby girl woke up with some eye boogers this morning (oh come on, you call it that too) and it turns out she's got a little conjunctivitis; her pulmonologist put her on some antibiotics so hopefully it will clear up in a couple days. So far she has only had one night where she decided to be up for half the night so all in all not a bad ratio. Sarah and my sleep is also improving as we get a handle on all her alarms and learn how to prevent false alarms from waking us up.
Since it is late and I'm likely to fall asleep again soon I will sum up a few points as bullets:

• She did not have her CF sweat test yet. It will happen on another trip to the pulmonologist but he is not concerned about her having it since she doesn't exhibit any signs yet (this doesn't mean she is free and clear of course)
• She is not eligible for botox to be used for limiting her secretions. The minimum weight they go by is about 22 pounds, more than twice her weight and botox is a neurotoxin so we'll trust them on this one :) We'll instead be trying to decrease her robinul dose to just once a day instead of twice and see how she does. The balance is minimizing the eye movement side effect with having it be effective at limiting her secretions.
• She's getting quite chubby.
• We got to skype in on Sam and Olivia's wedding!
• We took Brinley and the girls to my brother Robbie's soccer game and spent the day at my parents' house on Father's day. Brin slept through pretty much all of it.
• She also slept ALL day today. She was awake a total of maybe an hour until about 10. Now she won't go to sleep. Go figure.
• God is good!
• I had planned to start back at work today but her appointments took far longer than planned. I will try again tomorrow.
• I love my wife!
• I will soon do another video post, hopefully showing some of Brinley's equipment and how it's used.
• I need a vacation.
• My wife needs a vacation.
• I still have my sense of humor.
• Having four girls is fun and exhausting at the same time. I highly recommend and strongly discourage it.
• I can tell Brin isn't sleeping because I can see her heart rate. It's about 160. No faking me kiddo. Get that rate down to 130 or else!
• We actually are getting a vacation in July. Very much looking forward to it.
• My neighbor mowed our lawn again. Thank you Rich, you're a blessing!
• Still waiting on Medicaid so we can get nursing care set up.
• The big girls had fun playing in the rain and mud.

There's No Place Like Home

Words are not enough. In the past 30 or so hours Peter and I have experienced almost every emotion. No joke. Sad to say goodbye to our "Fab 4" and other NICU friends. Glad to be home together as a family. Anxious to see what the future holds, especially developmentally, for Brinley. Exhaustion. Sheer physical and emotional exhaustion. Let me start with some pictures and maybe more words will come.

Brinley is doing awesome at home. She loves all of the attention and new things to look at. She probably also appreciates not hearing every NICU alarm going off day and night. She did, however, cry for nurse M today. Our first pediatrician visit was today and Brin is already gaining weight. Off to a good start. 

The girls adore Brinley. Perhaps too much ;) "Can I hold her?", "No, I asked first.", interjected with Alessa's "Hold it!" They do not like all of the time and attention that Brinley requires from Peter and I though. They want a drink and they want it now. They "need" vitamins. Now. Things like that. This 24/7 juggling is already exhausting. I think I cried about 30 times today. Peter even shed a few. I know that things will work out in the long run. God is faithful. But, it is hard right now and I am not going to minimize the struggle. This juggling was compounded by issues with Brinley's ventilator. It took pretty much the whole day today to trouble shoot the problem. We had both respiratory therapists from our supply company over today. They were on the phone with the vent company, blah, blah, blah. We are currently on an entirely different circuit system that passively monitors her volume and respiratory rate. This means that it is not trying to pick up each of her breaths or giving her breaths while she is trying to exhale and such. It seems to be working well now and the vent monitor has actually made it into the screen saver mode. Last night it was alarming so much the screen stayed bright, so I taped a diaper over the display....Anyhow, now I am rambling. Suffice to say it's bedtime and we are praying for peace, safety and deep sleep! Brinley has not had a single desat that requires oxygen. This is very rare for her, but we have been doing more proactive suctioning in her mouth. 

In other news, Cailyn and Raina had their ballet recital tonight. I was able to take them as Peter and his dad stayed home with the two littles. The girls did a great job and were so beautiful in their costumes. (This picture is from their dress rehearsal.)

We want to send a shout-out to my baby brother Sam and his fiance, Olivia as they get married tomorrow. We are very disappointed that we can not be there to celebrate with them but try to have fun without us!

Prayer points- We need help. Lots of help. Food. Cleaning. Yardwork (I am pretty sure we live in a jungle now, though our neighbor has very graciously mowed our yard several times.). Most of all, I need people to be at the house with me at least while Peter is at work. I honestly don't have the energy to figure out everyone's schedules with work, vacations and everything. I don't know how to hand that to someone else either because Brinley's doctor appointments kind of throw timing off sometimes. Anyhow, please pray that we can figure that out because I seriously can't do all 4 kids alone. We are going to qualify for Medicaid for Brinley, which will cover home nursing. I do not know how long the paperwork will take though. Once we get her Medicaid number we can start trying to find home nurses. This could also take a while. Please pray for favor and just the right people to come care for our girl and be in our home.

Thank you all SO VERY MUCH for everything. Every meal, card, gift, finances, cleaning, childcare. We could not do this on our own. May God richly bless each and every one of you. Hang in there with us! We need you.

The Final Countdown!

*These photos is courtesy of Picture My Heart Photography and the Tiny Footprints Program.


Someone is now 8 lbs 15 oz and is pushing the limits of newborn clothes! Fun trivia, 8.15 was Raina's birth weight :)
We are still on target for discharge tomorrow morning so things are full throttle here and at the NICU. Today, Brin saw PT, speech, ophthalmology, pulmonary, cardiology and had her weekly trach change (no excitement this time!). She's some kind of socialite! On the home front we had our initial supply drop off. I was able to organize everything so it fits in Brinley's room. Can I get a round of applause? Sorry that this post is so short, but I have to run and do about 100 more things plus get the girls to their ballet dress rehearsal in an hour.
Hope you enjoy the virtual tour of Brin's room. A lot of the supplies are in the dresser and top shelf of the closet for those of you who want to know.

Please pray for a smooth transition for Brinley and the rest of us...for wisdom for Peter and I as we navigate her care on our own. Thank you all for your continued support and prayers. Another big thing to pray for is our home nursing care/Medicaid process. We are still in the paperwork phase, so starting Monday it will be all me with the girls while Peter is at work. If you are interested in hanging out with us and helping me keep my kids alive and sane, please contact me and I will plug you in the schedule.

First {Video update, Sister meet and greet, Walk outside}

I thought it was time for a video post so here I am :)

Things left out of the video:

• We finally met the pulmonologist in person and he spoke with us about a possible alternative to the Robinul... Botox! Yes, that botox. Apparently it can be injected near the salivary glands to decrease the amount of secretions without any side effects apart from dry mouth (which is what we're going for). Pray for wisdom that this is the right thing for Brinley.
• Many thanks to Sarah's parents and mine for watching the girls and taking them overnight. We could not have done it without them. Sarah and I are home alone tonight to rest and recover so pray for our health and energy level.
• We are still on track to bring Brin home on Wednesday. We'll plan on getting to the hospital bright and early to get her on the home ventilator for a couple hours before packing her up (so she can acclimate).
• We're still figuring out the process to get some home nursing assistance so please pray that will resolve quickly and that in the meantime there will plenty of help for Sarah when I have to get back to work.

p.s. Any coders out there recognize the array reference in the title?

She keeps things interesting

Two days into training and it is going pretty smoothly. Most of the time has been spent just getting to know the respirator and all its parts and functions, assembling the circuitry (the tubing) and understanding the alarms and troubleshooting. Tomorrow the respirator will actually be trialed on Brinley to see how well the settings translate over and to make sure there are no problems.

Yesterday was interesting. Before the training we did her weekly trach change and, since I did the last one, Sarah got to do it this time. The problem came when we realized that the wrong size trach had been delivered to the room and we had not thought to double check (won't be doing that again :) I took the old one out and Sarah attempted to put the new one in but it didn't fit! There was a mad scramble to get a spare ready and it was soon in place. Sarah stayed nice and calm and didn't panic and Brinley was just fine (though a little blue). I gave her the pacifier and she settled right down. It was a learning experience for sure and, although Sarah did great during, it was in a way the straw that broke the camels back for her emotionally. Pray for her that she will not feel overwhelmed by everything as this is, understandably, something that has the daily potential to be just that.

Today was also interesting (Brinley doesn't give us many boring days yet unfortunately). The last few days Brin's eyes have been doing a strange thing where they wander back and forth when she should be focusing straight ahead. The doctors are looking into what it might be and the words "brain tumor" were actually said, albeit in a highly unlikely case. She did, after all, have her MRI come back normal. They are doing a simple urine test that can rule this out and, although it is still a possibility, we are expecting it to come back negative. Another more likely culprit is that it could be a side effect of the glycopyrrolate (Robinul) that they started giving her to help with her secretions. Uncontrollable eye movement is listed as a less common side effect of the drug and the timing of when she was started on it seems to match up well with when the eye movement began to be noticed. So, hopefully tomorrow we will get the urine test results and rule out the tumor thing then they can talk about the next step.

On the homefront, our girls are doing great. Though there is occasional lingering coughing from them, they seem to be otherwise healthy. I am still pretty congested but I still have energy to get through my days so I'm not slowed down too much as long as I take it easy. Sarah is healthy but we need to find a way to get her some naps to catch up on sleep.

The coming days will see us doing our last day of training tomorrow, rooming in at the hospital Friday night to Saturday, taking delivery of Brin's equipment Tuesday and finally bringing our baby girl home on Wednesday! There will be lots of details in between but those are the larger strokes. We already have many follow-up appointments scheduled so please pray that it would not get overwhelming. Also pray that we can get some home nursing care set up soon to give Sarah some support as I get back to work full time in the not too distant future. We are working on it but it's a process.

Thank you to everyone reading for taking the time to read about our adventure. We've been so blessed with awesome nurses and doctors taking care of our baby and by such loving and caring friends and family taking care of the rest of us. And we're especially blessed to know a God that is always faithful:

When you pass through the waters, I will be with you;

And through the rivers, they shall not overflow you.

When you walk through the fire, you shall not be burned,

Nor shall the flame scorch you.  -Isaiah 43:2

Training to commence tomorrow

Well, I finally got sick. I tried not to but woke up yesterday with a wicked sore throat and it just got worse today. Not awful but enough to make me stay home from work... actually, I went to the hospital and held my baby girl for a while (with a mask on).

Brinley continues to do great! Still on track for next Tuesday or Wednesday for homecoming. We still have a lot of details to work out as far as paperwork and supplies; in particular figuring out what kind of nursing care we qualify for and how to go about finding someone or someones to provide said care. <---Prayer request :)  Training on Brin's equipment begins tomorrow afternoon and Friday night will most likely be our "rooming in" night where we stay at the hospital overnight taking care of Brinley on our own. Please pray that we can learn everything we need to and be comfortable with it all before bringing her home.

A friend of ours told us about an organization called the Tiny Footprints Project that connects volunteer professional photographers with NICU families for documenting the baby's stay. Many thanks to them and to Kara of Picture My Heart Photography for doing a great job and being so generous with her time and talent. This is the first example of her time with Brinley. Looking forward to seeing the rest!

That's all for tonight. We'll let you know how training goes. They're gadgets so I don't foresee any problems :) Thank you all for praying and loving on us! God is good and so very faithful.