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!

Good news, bullet points and musings

It's only been 3 days since Sarah posted but it has been a looong time since I did one. I've missed you all :) My body seems to be adapting to less sleep at night so I guess that's...good. Life with Brinley is becoming more "routine" and therefore easier to manage to a certain extent. We are feeling more rested in general and that makes our coping mechanisms more durable; when you're exhausted everything just seems so much more overwhelming, right? We continue to be blessed by so many people in so many ways to the point where it is almost too much just to keep up with saying thank you, so if you've done something for us and we haven't told you how grateful we are then please know we are humbled and thankful for you!

Now, I like bullet points. It's how I think. It lets me jump around in short bursts. So that's what you're getting:

• This morning Brinley had x-rays of her head and an ultrasound for a dimple toward the base of her spine. Both came back normal!!! The head will continue to be monitored but the cranial sutures are not fused despite the small soft spot so praise God!
• I like thunderstorms. Today was a good day.
• We had a great assessment team here for determining Brinley's therapies that she will need. Speech, physical and occupational. These will begin very soon.
• Pi is the ratio of a circle's circumference to it's diameter.
• Brinley has started enjoying falling asleep on our chests, face down. It's adorable.
  
• Medically, right now we are entering a mode of just keeping Brin growing and developing. We're able to concentrate more on the true baby development that has taken a back seat up until now. 
• Brin also had x-rays done of her feet and if the structure turns out to be a certain way that would become worse as she grows then they'll have to do something around 6 months, otherwise no surgeries until about 1 year old.
• Coffee >> Tea

We have really been so richly blessed by God through all of this, though at times I'll admit, it can be hard to distinguish the blessing from the sorrow. The more of this time that is behind us the easier it is to see how God has worked through it all and the more it is coming into focus what He means by His command to "be still and know that I am God". He sees Brinley now, in a year, in 5, 10, 30 years and He has a plan for her. We get to be there along the way to see and so do all of you with us. That is awesome to think about. We mourn and are comforted, feel joy and sadness, excitement and exhaustion, are cranky and patient in turn but in all of it, the highs and lows, we know in our deepest being God's unimaginable and unending love for us. I can almost hear Him saying "keep going, you're gonna want to see this next part! It's awesome."

Pray for us, that our hearts would always remain soft and pliable before God. Pray that even in our exhaustion Sarah and I would be able to be patient with one another and with our children. Pray that we will soon get to a point where we have enough in us to more than just survive, to overflow and pour out! To be a source of help instead of a sink.

We made another trach baby doll (with a bonus G-tube of course). The surgery went well.

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.