sister support

we're with ya, sis!

more faith

The doctor read the x-rays this afternoon as good with no signs of anything like Emory’s had previously. The concern remains her increased effort to breathe. This could mean a few things, but we have no answer yet. We are to closely monitor her (we’ve already been practicing this for days now) and return in the morning for another appointment.

This evening we had a time of prayer and Communion as a family. We focused on many of the promises in God’s word. We are greatly encouraged as we remind ourselves that Emory is the Lord’s and his love for her is even greater than ours. We remember many scriptures that give us strength and peace.

God is either in control or He isn’t. We believe He is. We continue to lean on Him.


Psalm 139:13-16
You made all the delicate, inner parts of my body
and knit me together in my mother's womb.
Thank you for making me so wonderfully complex!
Your workmanship is marvelous—and how well I know it.
You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out
before a single day had passed.

more prayer

After a peaceful week at home, Emory began showing signs last night of very labored breathing. After phone calls to our doctors, the NICU, and the emergency room we prayed and decided to wait at home instead of the ER waiting room. Emory slept well and by morning her breathing looked better, shortly. The doctor wanted to see her immediately. To rule out any lung problems similar to her history we are now at the Imaging center for xrays and will return to the doctor after lunch. It is suspected that she has the beginnings of brochiolitis, less severe than RSV but we will wait for the reading of the xrays and another examination.

I am writing early, without a lot of info to again ask for prayer. We will update after the afternoon appointment.

i see you

The people walking in darkness
have seen a great light;
on those living in the land of the shadow of death
a light has dawned.
Isaiah 9:2

...2 weeks old...

We were reminded again of the mercy of God; his gift of life; where we had been and where we are today. Emory had her first appointment with a new pediatrician yesterday. This doctor had been recommended to us and the appointment went very well. As the doctor spoke with PJ, reviewing Emory’s days in the NICU, we understood in a greater way how delicate her situation had been. We also realized how much we had been spared. Watching the expressions of the doctor as she read the medical history, her referencing things that had been done to help Emory and things she hadn’t had to go through (ie. a chest tube), brought a deepening thanks and relief for all God had done on our behalf and to complete the plans he has for Emory. We also realized how much he had guarded our hearts with peace last week.

I say all this not to live in the past troubles
or to say look at our situation
and look how severe
and give me your attention, sympathy….
no, but to draw attention to God and His ever present help in times of trouble.

There truly is a peace that is greater than we can understand (Philippians 4:7)
God really is strong in our weakness (2 Corinthians 12:9)
The impossible for us is possible with our Lord (Luke 18:27)
How incredible to experience the words of God coming off the page, interacting with your life and becoming your reality, your experience. I am sure this happens all of the time, many times a day. The question is, am I conscious of it; do I recognize it? I can see it today, a little more clearly.

Emory is doing so well that the doctor didn’t ask to see her again until the normal 2 month check up. Emory will still see a lung specialist next month for another RSV vaccine. Other than that we are to keep her in the house and out of public areas; limit her contact with people; take extra care to keep her away from anyone with a cold or illness; and wash our hands until there is no more soap. The first two months are very important for her health we are told.

good morning miss morning

I woke up and asked PJ, “are you going to the hospital to feed the girl?” I just wanted to see the smile on her face when she said “No.”

The night went great. Emory slept well and hardly made a noise. We slept like parents of a newborn; wondering if she was still breathing. What a great day today was. All of us at home acting like a family.


Our home at the moment is in Hidalgo, TX. It is between McAllen and the Mexican border. We are blessed to be in a one bed room apartment given to us for a while by Calvary Commission. They are an International Mission organization. http://www.calvarycommission.org/

Emory is very alert and strong. She doesn’t look like she was in the NICU or has had any problem. We continue to watch her closely and have been advised to be careful with visitors and the weather. As best I can remember, her actions are like her older sisters when we brought them home from the hospital. Trinity and Micah are doing well with baby sister. T wants to hold her at all times. Micah wants to crawl up the side of the bassinet and say “baby sister sleeping.” (much cuter in her voice)

PJ’s blood pressure is fine and she is slowly recovering. We are encouraged by all the prayers and messages from you.

This experience is growing us in many ways. One of the most meaningful to me is a new care and desire to pray and stand with those who are battling pain, illness, long stays in hospitals, hurting loved ones. As trying as these past 2 weeks have been to us, I realize that others are enduring much more. As we left the NICU they were preparing for 23week old twins. Some times as we left the 3rd floor labor and delivery, the elevator doors would open on the 2nd floor ICU. The doors many times opened on to tears and desperate faces standing by the locked ICU doors awaiting some news. I am easily overwhelmed and busy with my own plans, thoughts, concerns, goals, and on and on. How many times have I been bothered, frustrated, burdened by something like slow traffic, a red light, a long line, a hitch in the plans I had for my day. All the while, to the left and the right, many were (are) struggling in life or death situations, deep matters of the heart, problems that look like unscalable mountains. And I am upset that McDonald's can't get my order right. Oh how much do I need to change. What a blessing the tension of life can be to blind eyes.

sisters

home

Psalm 30:5
For God's anger lasts only a moment,
but his favor lasts a lifetime;
weeping may remain for a night,
but rejoicing comes in the morning.


PJ went to the hospital early this morning to nurse Emory. The nurse answered some questions and updated us on Emory and the NICU. Emory was third on the list of three to be moved to Intermediate Care. Her bilirubin levels had been up yesterday so another test was done this morning. When asked about a discharge date the nurse replied that the doctors like the 37 week mark, which meant until Monday or so if things were still well. All her levels remained good, she was eating well. Still, quiet and sleeping a lot.

I was on my way to the hospital about noon when PJ called. “Come get me, they’re discharging her!” The doctor had called, her biliruben level was good today, no reason to stay longer. Wow. Another call to the nurse about timing and discharge procedure and we had a 2:30 appointment to nurse the baby and check out of the NICU.

As we gathered our bags to be discharged I requested a couple of the NICU monitors, computers, and one nurse (trying not to ask for too much.) The doctor reassured us, and we were out the door. (without the nurse) We left the hospital with Emory Morning just before 4:00. She is sleeping now in her bassinet; Beautiful and well.

Emory will see the pediatrician Monday and has an appointment with a lung specialist in a month. Right now it looks like just normal baby stuff. We will have better photo opportunities now, so keep checking back. We will continue to use the blog to stay in touch since we are usually far away.

What do we say as a family to you for your love, support, prayers…. Thank you. Emory’s little grin says it much better. We are blessed and thankful. You are a great friend.


Delight yourself in the Lord
and he will give you the desires of your heart.
Commit your way to the Lord;
trust in him and he will do this:
He will make your righteousness shine like the dawn,
the justice of your cause like the noonday sun.
Psalm 37:4-6

waiting

Psalm 130:5-6
I wait for the Lord, my soul waits,
and in his word I put my hope.
My soul waits for the Lord
more than watchmen wait for the morning.

Tonight I brushed my teeth with a green toothbrush. My toothbrush is purple. Purple for PJ – not too difficult to remember though it seems that even remembering to brush my teeth at all is too big a task these days. The days seem to be running together. Trying to balance a meal for my kids seems impossible. I am afraid they may turn into chicken nuggets. Even Matt commented today that I ordered fries for the girls and myself. I don’t even like fries.

Tomorrow we will talk to the doctor and find out if an end to Emory’s NICU stay is in sight. I thought for sure she would come home today. I washed everything yesterday and put a sheet on the bassinet mattress. I even laid out a burp cloth in the place her tiny head will go. And I put yet another hat out to try on. So far three have swallowed her entire head – face and all.

The nurse told us to bring a car seat up to the hospital. They are going to do a “car seat challenge”. Another milestone before she will be allowed to come home. She must stay in the car seat for an hour with continuous respiration. This means she has to keep breathing. Apparently it is common for NICU babies to stop breathing in their car seats or different positions. Who knew? Hopefully, we pass the car seat challenge.

The nurse also gave us a card today for a good pediatrician. We are very grateful for this as we know no one in this area.

No tests were run on Emory today, but she remained in the NICU. Her nurse informed me tonight that she was one of three babies that will be moved to the Intermediate Care Nursery sometime in the next day or so depending on staffing and nurse to baby ratios. However, she did say Emory was not the next candidate to go. Someone is before her. We haven’t visited that nursery yet but are sure it is just as wonderful as where she is now.

Tomorrow we hope to have more answers. We have many questions. What are you currently watching? What progress does Emory need to make? When will our family be together – home? All these questions seem so simple to answer yet I am left so uncertain. The only thing that brings me hope is knowing how good God has taken care of us through the first days of this journey. He has orchestrated it all so beautifully. One day, we can tell the whole story when you have time, and you can count with us the many miracles we have known.


Some trust in chariots and some in horses,
but we trust in the name of the Lord our God.
Psalm 20:7

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7

just breathe

Satisfy us in the morning with your unfailing love,
that we may sing for joy and be glad all our days.
Psalm 90:14


Emory is doing so well that she is a candidate to be moved to the intermediate nursery. She will remain in the NICU to continue being monitored and will not be moved unless there is a need for bed space for a child in more severe conditions. The ratio of nurses to babies is better in the NICU so we hope she stays there. She is doing so well.

Emory nursed twice today and was bottle fed at her other feedings. She is now breathing room air with out the nasal tubes. She remains connected to only 3 monitoring devices which check her oxygen saturation, her heart rate, and her respiration. What a difference in just a couple of days. How exciting to be nearing the day when she will leave the hospital with us. We receive more information concerning her health daily. She will have monthly vaccines for RSV and need to have check ups with a pediatric lung specialist for a while. PJ was given a child CPR class by one of the nurses because “sometimes these little ones forget to breathe.” All these things keep us balanced in our joy and concern. We are constantly reminded of the awesome thing it is to be alive, to have life in our body.

I went to church tonight and was overwhelmed with the presence of God - His nearness and mercy toward me and my family. He reminded me in a loving way of the events that have taken place in the last weeks. From PJ’s health to Emory’s birth and life, I understood more clearly God’s active role in sustaining PJ’s life and giving breath to Emory. And I understood my lack of ability to do anything really. I saw more clearly my desperate dependence on a loving and good God. I wept from a full and grateful heart.

Our faith is not one of following Christ if we get what we want. God gives and takes away and is always worthy of our devotion. But that He chose to show me mercy, to come to my aide, to help me in my helplessness… what can be said?

In Genesis we learn that God formed Adam from the dust, be he had no life until God breathed life into Him. You and I are receiving that breath at this moment. What care we are being given and at such an intimate level, yet we often feel that God is so far away, if there is a God at all.

Each breath. I have watched Emory’s breaths, levels on monitors, her chest and stomach rising and falling and all the worries and sighs of relief that come with it. It exhausts me in minutes. Yet several times a minute, 1440 minutes a day, for how ever many years you’ve been breathing, God has carefully made sure that you have your breath; that I have my breath; that Emory has her breath. Each breath - a life giving gift that we did nothing to deserve or earn and that we can’t supply for ourselves. Don’t believe me? Try to put breath into someone who has none.

But you’re still breathing, and so is Emory. How? Why? The goodness of God. He must really love you.


"You are worthy, our Lord and God, to receive glory and honor and power, for you created all things, and by your will they were created and have their being." Rev. 4:11

one week

Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I lift up my soul.
Psalm 143:8

Today Emory completed one week of life on earth. I am so blessed to know her. We reached goals today to celebrate her life. She was moved from her plexiglass condo to a real live nursery box. Though she continues to spend her days in NICU, she at least gets to be in normal air. This means that she has been maintaining her temperature well enough to test out how her body is working without the confines of plastic and artificial heat. She also had the feeding tube removed from her mouth/stomach. The doctor ordered a halt on IV fluids and a move to a lesser amount of oxygen to be sent through her nasal tube. All of these blessings mark a day of progress and a light at the end of this tunnel. I can’t imagine the mommies who can’t have their babies home with them for months. The constant trips to the NICU and dragging our family from McDonald’s playground and attempts at home schooling in between times have definitely been trying. Knowing God is with us and seeing the evidence of how He has taken care of our family gives us peace and the ability to be flexible and patient.

The highlight of the day today was that Emory nursed for the first time. Some may think this is odd, but for a mother who nursed both of her older children, it is, quite possibly the best gift aside from getting to bring her home from the hospital. God’s mercies do endure forever.

my arms ache for her

for the first time in 5 days we were able to hold emory. she is maintaining good levels though her respiration varies and at times is high. eating is going well. before each feed she is checked for residual, (left over), food in her stomach from the last feeding. only once today did she have any residual and it was a small amount. this is checked because she requires the use of oxygen to digest. residual tells the doctors that emory is using all her oxygen to breathe; or, if there is no residual, it tells them she has sufficient to breathe and digest.

until the afternoon, all feeding went through a small tube directly to the stomach. with rapid breathing, there is a chance of aspiration if she eats by mouth. the nurse was pleased with her respiration levels, so around 4:00 pm emory drank from a bottle. no problem. this is one of the three things she must be able to do on her own before she can leave the hospital.

today’s x-rays show that the lungs are better than before, but are still not functioning to capacity. for this reason she is still receiving oxygen through the nasal tube.

another thing on the “hoping for list” is for emory to be moved to an “open” bed. this will mean she is able to maintain her body temperature - a second thing she must do before leaving.

continued thanks for prayers, emails, calls, and comments. what a blessing to see the friends emory has before she has even left the labor and delivery floor.


I will sing of your strength,
in the morning I will sing of your love;
for you are my fortress,
my refuge in times of trouble.
Psalm 59:16

the Lord's day

But I cry to you for help, O Lord;
in the morning my prayer comes before you. Psalm 88:13

pj arrived to visit emory and was met with a wonderful number on the breathing machine. 27%. within minutes the doctor was talking about removing the breathing tube and machine. shortly after, what we thought would happen in several days was done. she was off the ventalator. she maintained great levels all day and was able to eat. (through a tube to her stomach) she still breathes fast, so there is a risk of choking if she eats by mouth. tomorrow's goal is mother's milk from a bottle.

emory had her first bath at 5:45 pm. she had both eyes wide opened, was very alert, and beautiful. today's progress was more than expected. we are overjoyed.

joy comes in the morning

today was a good day for emory. her oxygen levels remained steady and breathing was not so much of a struggle. after her surfactant treatments yesterday, she was given oxygen at a 45% level. today that was slowly weaned down to 30% by 6 pm. we breathe room air at a 21% level, so that is the goal in the next days for emory. her bilirubin levels are still high so she continues with light treatments.

we are continually thankful for the prayers, emails, and phone calls. in this sometimes surreal experience, we are greatly encouraged by family, friends, and the words of God. his faithfulness and help to us continues to be wider than the sky and deeper than the sea. on this day in 2001, we found out we were pregnant with trinity – after being told we would not be able to have children. many other experiences with God’s goodness towards us cause us to wait patiently, peacefully, and hopefully in these days.

as we were leaving the NICU this afternoon, pj said, “i can’t leave, she won’t let go of my hand.”

"And remember that I am always with you until the end of time." Jesus to his disciples

bright and morning star

We left the NICU tonight after Emory had received her second dose of serfactant. The doctor was pleased with the effects of the first 10ml from the afternoon. Her respiration rate began rising again tonight, and they tried to wean her from the oxygen a little at a time. When the doctor realized she relied heavily on the oxygen, and her respiration was still rising, he decided to do a second dose of serfactant. During this process, they administer 10 ml of the protein down the tube in her throat directly into her lungs. We will know later during the night how she has responded to this. There is a small chance that doing the second dose could cause another Pneumothorax which is what caused her lung to collapse in the first place, but the doctor felt that the benefits of this dose far outweighed the risks. Currently her eyes are being protected from the light which is being administered for jaundice and to help her bilirubin level to drop.

sure and certain but not seen

the pneumothorax is resolved. xrays show great improvement in this area.

new item: RDS, respiratory distress syndrome: the lungs are stiff, difficult to inflate and then deflate very quickly. (like blowing up a stiff balloon that immediately and forcefully deflates.) this afternoon, the lungs were intubated and surfactant administered. this is normally produced by the body, but not yet with emory. the surfactant will help emory's lungs become healthier. healthy lungs inflate easily, and don't deflate totally while exhaling (as matt understands it).

highlight: pj got to change emory's diaper

from then to now

here's a summary of medical events for the past week or so. we hope to use this blog to stay in touch and update family and friends in many aspects of our lives since we are usually so far away. for now it will be primarily used to share info on emory.






wed. 9th - pj spent the afternoon in the hospital due to pregnancy induced hypertension (PIH)

fri. 11th - pj readmitted to the hospital for monitoring and bedrest

tue. 15th - doctor's decide to induce due to PIH
emory taken to the nicu shortly after birth for sluggish breathing

wed. 16th - emory's breathing too fast and labored, antibiotics started

thu. 17th - emory developed a pneumothorax (air pocket outside of the lung)
right lung collapses
levels stabalize, xrays show improvement throughout afternoon/evening
as hoped and prayed for, this problem is slowly resolving
respiration rate is high

his mercies are new every morning

emory morning burton

jan 15, 2008

11:37 pm

6lbs

19in