It's Time to Dance

Friends, family, loved ones. Your prayers and encouraging words and deeds are humbling and felt so close to our hearts. I feel at times like our family is at the tip of a spear being thrust at the enemy and you are all the shaft of the spear. I would like to start off by saying I love each and every blog comment, facebook mention, text message, email and whatever other way we hear from you all. They are refreshing to my mind and soul and remind me how utterly NOT alone we are in this. This is good because the enemy likes to try and isolate us and pick us off one by one. Please keep them coming, especially tomorrow. Thank you to the prayer warriors that visited with me and Brinley today and were able to pray over her. That was awesome!

Brinley had a good day again. She's gaining weight, which is good! She still has a lot of secretions but they're clear so at this point they just make her uncomfortable until they can get sucked away. She was started on steroids to help any swelling go down before tomorrow's procedure.

So yeah, tomorrow is the big day we've been praying towards, when Brinley will be checked by the ENT specialist and have a procedure of some sort done to help her with having a stable airway. This could go several ways and we are just praying for our little girl to be healed. I was chatting with God today and my prayer was this (probably slightly paraphrased):

"God, the uttermost desire of my heart is that Brinley would be healed completely of all abnormalities and the doctors would be amazed. Nevertheless, not my will but yours be done."

This was a very hard prayer for me to say to God and I wanted to stop after "amazed" but ultimately I don't want this to be just Christian rote, I want to mean it: God, even if Brinley is not healed miraculously and this is a long hard road for her and us I will still love and trust You and know that you will turn sorrow into joy. 

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've done my wailing, now it's time to dance. There may be more wailing yet to come but that just means more dancing too. 

We love you all! Remember to pray for tomorrow and to send texts, post comments, flood facebook and annoy all your friends with posts about Brinley, anything to mobilize more and more prayer warriors! If I don't respond, don't worry, I love reading all of it and I'm probably just busy. Let's praise God together and make sure He gets all the glory. I'm sure I've forgotten things but that's what happens when my wife doesn't proofread my writing (she's sleeping right now). 

Brinley Mid-Yawn

Edit: my wife woke up and told me I forgot to mention that today is her 1 week birthday! Also, tomorrow is her original due date so maybe God will do a miracle and we'll get to bring her home :)

Another Good Day

Today was a good day. We got the test results that indicate infection (I forget the name of it...too many names!) back today. I happened to be in the room when the nurse saw them and she let out a squeal of delight. Apparently yesterday her (whatever) number was over 100 and today it was 43! This means that we ARE back on track for Thursday's procedure with the ENT. Brinley will start up on steroids tomorrow in preparation for it. Basically, a lot of the answers to questions we have about the extent of her abnormalities, how she will be able to eat and breathe stably, when we will be able to hold her and even bring her home, will be determined by this procedure. She will be under partial anesthesia and will have a morphine drip. The  ENT will take her breathing tube out, use a scope to look around and then decide the best way for her to breath. She may or may not come out of this with a tracheostomy. Obviously, this is a huge step and we covet your prayers for Brinley to tolerate it well and not get another infection. For wisdom for the ENT to know the best way to treat what he finds. For us as we wait for her to come out of the OR and as we find out and process whatever it is they find.

Rewind to this morning...when we called to check in with the nurse to see how she did overnight we were informed that they were unable to get the pic line in. This type of line is like a deep IV that lasts longer with less risk for infection. They had given her morphine to sedate her. When we heard they were going to try in her other arm today I knew it was time to call in the "big guns!" Our church's intercessory prayer group just happens to meet on Tuesday mornings. Perfect. When the nurse came out to tell Peter they were able to get the line in she said "You must have people praying." Apparently the NP was about to give up and try again later when she got the line in and around some complicated area or something. Anyhow, Peter was able to say Yes, we did have people praying! The other good thing is that she has gone from 5mls of breastmilk to 26mls in about two days and is tolerating it beautifully! They will have to go back down on her feeds for a little while after Thursday, but do not anticipate any problems bringing it back up as she recovers.

The big sisters also did very well today. Please keep praying for grace for them. Peter has been getting some stress stomach aches and is trying dietary changes to help, so he could use prayer for that. I am still healing well but could definitely use some supernatural energy! Thank you so much for the love, support and meals! If you live in the area and are interested in bringing a meal, e-mail my mom, Mary Louise at mlfreda@yahoo.com.

Now for the eye candy:

Continued Improvement and Being Vulnerable

Praise God, Brinley is getting over her infection! Her temperature is back to normal as is her heart-rate. She is still on 2 antibiotics (down from 3) and was much livelier today than the past couple of days. Her coloring is also much improved and she is now wearing clothes for the first time! We continue to wait until Thursday, the day she will most likely be having her big examination and possible surgery. Please pray as we get closer to that time that God will amaze us all!

Now, to the vulnerable part. Today was tough for both Sarah and me. There are times we feel greatly encouraged and times when we are feeling absolutely crushed and with barely an ounce of faith for healing. We plead with God, beg him to heal our little girl, believing He can but probably not really believing he will. Like I said, we're just being vulnerable. We are warring in our minds and contending for our faith right now more than I ever thought we would have the chance for in our lives. Nothing has the possibility of breaking me like my children hurting or sick.

There are moments of great fear for my little girl when I just have to pray and claim 2 Timothy 1:7 "For God has not given us a spirit of fear, but of power and of love and of a sound mind." I want to leave you with encouragement because I really do believe God can and will use this for something awesome, however painful it is getting there. God is good, of that I have no doubt. He can amaze us and my sincere hope is that He will do that with Brinley, but even if His plan is something else we will trust and love Him because, like Paul: "I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come,  nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord." (Romans 8:38-39)

Also, Brinley's eyes were open much more today. I got some one eye half open sleepy looks for about half a second but Sarah got some full on staring so there are also some awesome moments to our days! I also got a chance to decorate the sliding glass door to her room with a picture that Cailyn and Raina designed (I tried to transcribe as best I could)

Good News and a Dirty Diaper

I want to start by saying that we have an awesome church body! DFGC, the prayers that went up during service today rocked! This afternoon Peter, my friend Stephanie and I went to see Brinley. She looked so much better! Her heartrate was back to normal. Her coloring was improved. The fever was on it's way down and she didn't have Tylenol in her. She has been tolerating her feeds so well (since my milk finally came in and she was started on the "good stuff") that they doubled them today and she is still doing great with it.

Then this happened:

After having three other children, one of whom is still in diapers, I never thought that I would be so excited to change a diaper! It was wonderful to be able to do something practical to take care of our baby.

Thank you so much for all of your prayers. God is faithful and his grace has been enough each day. Please continue to pray for Cailyn, Raina and Alessa as well. We have a few ideas of ways to help them feel more involved, but it is hard for them not to be able to see their sister and to have mom and dad away more than usual. We just checked in with the night nurse and she confirmed that Brinley is still doing great :)

I will leave you with this:

Quick update on infection

Brinley with Socks for her cold feet!

So it is an infection that little Brinley has and they are continuing to treat it with antibiotics. Her temperature is still elevated but not dramatically high and her respiration was a bit high so they adjusted her ventilator settings to make her more comfortable. Her blood sugar was low yesterday but is doing well now.

I got some good time with my littlest daughter from about 9:30-3:30 and Sarah got some good time with her in the evening. It's very tough to not be together and we won't be doing alternating visits every time but it is occasionally necessary. Some of our family were able to see her which is great!

I was reading to my 3 big girls this morning and I had the feeling that they weren't all there. I looked around and counted and realized that I was already expecting Brinley to be on my lap with the others so maybe God wants me ready for when we get to bring her home.

Keep praying that the infection will be fought off so she can recover and we can move on with testing and seeing what else is going on. Other than the infection affecting her she was breathing mostly without the assistance of the respirator, which is very good. She's got strong lunges.

Sarah and I will be headed over this afternoon to be with Brinley for a couple hours so we're excited for that. As always, thank you all so much for your support and prayers. Pray also that we can be an encouragement for the other NICU parents because we're not the only ones there. We'll be praying for the whole ward as we're there and believing that God can show up on a larger scale than expected.

My wife says I need to work on being concise so goodbye for now!

Peter

Preliminary Diagnosis, Continued Prayer

Our little Brinley is not yet 3 days old and has already been through so much. She's beautiful and wonderful and it's harder to leave her each day. Thank you all again for your prayers! They are necessary and effective.

Sarah and I got some good sleep on Thursday night, called around 5AM to check on our baby (she had a good night) and headed over to the hospital around 10:30. We met with the Doctors and nurses and got an update on her status and the plan for the day. She already looks much better than day 1 as a lot of her puffiness from the delivery has gone down. Her breathing and feeding tubes are still in of course and they actually started feeding her about 1PM yesterday for the first time. She's getting just a small amount to start and it will be mommy's milk as long as we can supply it. That part is going very well now after Sarah was able to meet with the lactation consultant who was so very helpful.

The geneticist came over to see her in the early afternoon and examined her then went off to do a little research on her findings. She, along with the ENT specialist, were able to come up with a preliminary working diagnosis for Brinley. It's not positive but seems to fit very well so far and is called Oral Facial Digital Syndrome. They still need to do an MRI to check her brain and they will still be looking for overlapping conditions but it is good at least to have a starting point.

The other major thing needing to be done aside from the MRI is the examination of her mouth and trachea and the airway. It needs to be done in a very controlled setting so is waiting on when the ENT specialist can be in to do it, no later than Thursday but hopefully much sooner. Her eyes also still need to be checked.

We got a call last night about 2AM that she may have an infection so they are doing blood-work and have started her on antibiotics. Pray that her immune system would stay strong and that the infection would be gone or come back negative. I'll be heading over to Albany Med shortly to be with her and talk to the doctors while Sarah is at home with the girls. She'll be going over later today. Pray for continued grace and strength for us through this. God has been so faithful and we are feeling so blessed by all the support around us.

Greetings from Peter and Sarah

Greetings to all and thank you for taking time from your day to read.
For those who just stumbled onto this blog, an introduction:
We wanted to start some way of getting information to our friends and family about our baby girl, Brinley Noel, without having to worry about who knows what and who's been contacted. She was born at 3:21PM on Wednesday, April 23, 2014 at St. Peters hospital in Albany, NY with several birth defects and was transferred the following day (yesterday as I write this) over to Albany Medical Center where she is and will be undergoing many tests to see the extent of her defects and what they will mean. I will give some details on that in a bit.
Firstly, thank you to everyone who is already praying and continues to pray. We are feeling and needing them so don't stop! We are definitely doing better today than yesterday but we fully expect a roller coaster of emotions in the coming days and weeks.
Sarah is doing great after the delivery and was discharged the same day that Brinley was transferred so we were able to go over and see her and speak with the doctors and learn about the facility. We got some good well needed sleep last night and will go over to see our baby later this morning. Our other 3 precious girls have been with Sarah's parents and my parents but we will be able to see and get them back some time today if all goes well. All they know is that mommy is fine and the baby needs some help from the doctors so, if you happen to see them, please be careful in what you say.
So, details: the biggest issues seem to be defects in the development of her mouth. Her tongue is not fully developed nor is her epiglottis. She also has a cleft at the back of her mouth. There may be some concern that her trachea is smaller than normal but that remains to be checked at Albany Med. The ears, nose and throat specialist we spoke with suspected that some of the issue may have been swelling from the attempts at intibation over at St. Peter's. We will hopefully know more about that soon. She also has 1 missing set of ribs (11 pair instead of the usual 12). Her ears seem to be a little low set and her nose a bit flattened but neither of these are very dramatic. Her feet are polybifurcated (I may have that term wrong) which basically means she has 6 toes on each foot; there are 2 big toes partially fused together essentially. This is a minor thing against the others but all the little things lead to a question of a major thing being wrong and trying to diagnose a syndrome. We don't know anything about hearing or vision or cognitive function but she seems to be feisty at least.
Her heart, brain and kidneys have all been checked via ultrasound and are as normal as can be told from those instruments but they can't tell everything, particularly about the brain. When we were with the doctor and ENT specialist and a bunch of the nurses I asked if I could pray for them and for Brinley and they all let me so that was awesome! We are praying for healing and I want everyone at that hospital to know who to give credit to. I later warned the neonatologist there were a lot of people praying for her so if he finds something wrong one day and not the next to not worry. He may have thought me a kook at that point but we want God to have all the glory in this. We are excited for how God can use this whether in healing or throughout her life and ours however that winds up looking. At the same time we are hurting for our little girl and just want to be able to hold her and take care of her but we know she's in good hands. Everyone at Albany Med has been great and the facilities are excellent.
The main thing right now for Brinley is maintaining a stable airway. Everything else will follow.
We've had a lot of people asking how they can help practically so we will be in contact about that. Our other girls will need some watching at times as we visit Brinley. They are awesome girls and will understand but it will still be tough on them.
Pray that every day the doctors can give more good news. Pray that Sarah would heal quickly (she did just have a baby after all :) and that her milk supply will come in quickly. Pray for stamina for all of us and health so we can keep going and not be a risk to our baby.
If you're still reading, God bless you and thank you! Further posts will be much shorter. We love and appreciate you all so much!