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.