Timothy James

I was admitted to the hospital on Dec. 8th because my amniotic sac was leaking and I had begun to dilate. I was ordered to lie flat on my back until the baby came ( I was due April 2nd!). Well, on Dec. 17th my water broke at 7:15pm and Timothy James decided to come early. He was breech and already on his way out, so the doctor did an emergency C-section and at 10:20 pm he was delivered. He went straight to the Neonatal Intensive Care Unit (NICU) and has been there ever since. Timothy was only 25 weeks along in his development (a "normal" pregnancy lasts 40 weeks) so he still has a lot of growing to do.

Isaiah 43:2a, 4a, 5a "When you pass through the waters, I will be with you. . . you are precious in My sight. . . do not fear for I am with you. . ."

We had a very good Care Team Meeting yesterday. Thank you to all of you who were praying. We talked about many aspects of Timothy's current condition and possible future challenges. The doctor shared with us Timothy's main diagnoses at the current time. Some of these conditions may heal completely, and some may have long-lasting, even lifetime affects. I want to share with you the list of 8 conditions that she shared with us, just to give you a tiny glimpse at some of what we are dealing with. . .

1. Bronchopulmonary Dysplasia (BPD/CLD)
damage to the lung tissue which traps air or collapses, fills with fluid,
and produces extra mucous
2. Partial Cirrhosis of the Liver
scarring damage of the liver tissue which prevents it from functioning
normally
3. possible Hypogammaglobulinemia
reduction in the level of special immune cells needed to fight infection
this condition is not requiring treatment right now
4. Chemical Rickets
deterioration of the bones due to poor nutrition
this is a little different from the rickets caused by vitamin D deficiency
5. Periventricular Leukomalacia (PVL)
damge to brain tissue/cells around the ventricles
can result in complications regarding vision and motor skill
development (cerebral palsy) as well as learning problems
6. Pulmonary Hypertension
high blood pressure from the right side of the heart to the lungs
because of the decreased number of blood vessles in the lungs due
to immaturity and damage
7. Retinopathy of Prematurity (ROP)
abnormal growth of blood vessels in the retina of the eye
he also had an eye bleed related to this condition
8. Cholestatic Jaundice
red blood cells break down and release a substance known as bilirubin
it's normally processed by the liver; high levels (jaundice) can cause
brain damage

Praise - he is still a little fighter
- we are even more in awe of how fearfully and wonderfully God has made each of us
- the number of specialists who have been available to be consulted on his various conditions

Prayer - for each of the issues listed above
- major organs/systems affected are the brain, eyes, lungs, heart, muscles (tone), bones, intestines, liver, spleen, and immune system
- future health care plan decisions that mom & dad will have to make

Look for an update later today, probably in the evening.

Isaiah 42:5-6a "Thus says God the LORD, who created the heavens and stretched them out, who spread out the earth and its offspring, who gives breath to the people on it and spirit to those who walk in it, 'I am the LORD. . . I will also hold you by the hand and watch over you. . ."

Actual Age: 4 months
Adjusted Age: 2 weeks

The doctor is beginning to wean Timothy off the ventilator. This will be a slow process over several days at least.

He is resting very comfortably.

His urine output dropped Wed. night and he kinda swelled up some on Thurs., so the doctor prescribed a diuretic every 12 hours, to help him get rid of the excess fluid again.

We have a Care Meeting on Friday at 4:00 pm. We will meet with several members of Timothy's care team, including his doctor, specialists who have seen him, social worker, etc. This meeting is to discuss his current conditions and where we are going from here, future treatments/care, etc.

Praise - weaning from the ventilator has begun
- he has had wakeful moments while mommy visits

Prayer - his phosphorus level is low and this negatively affects his bones
- swelling to go down/increased urine output
- communication during the Care meeting would be clear and productive

Job 33:4 "The Spirit of God has made me, and the breath of the Almighty gives me life."

Actual Age: 4 months
Adjusted Age: 2 weeks

God continues to sustain Timothy and has decided to use the ventilator to give him the breath that he needs for now while his body recovers and recuperates.

His eye exam went well today. There is no indication of any hemorraging in the right eye. The bleed has cleared! Praise the Lord! Therefore, he will not need to be transported anywhere else at this time. There are also indications that the ROP is regressing which means the surgery was somewhat successful.
(Just a little aside: The doctor heard rumors that the nursery where Timothy was going to be transported to on Monday had contracted chicken pox. We believe that God orchestrated the circumstances to delay immediate transfer until a 2nd opinion was given and we are so thankful that God spared him from being exposed to this potentially life-threatening disease in his case).

Praise - God's soveriegnty over the circumstances of Timothy's life
- good eye exam results
- he is tolerating the ventilator
- God has been our comfort and our strength

Prayer - continued good blood gas test levels
- that he'd be weaned from the ventilator at the appropriate time
- healing of his right arm (it's going to take some extra time because of the poor condition of his bones)

Quick update: Timothy was intubated early this morning which means he is back on the ventilator. He is breathing much easier and is more comfortable. This may seem like a step backward, but in fact, we recognize it as a necessary treatment for his condition at this time. It has been a rough morning coming to this conclusion, but God is faithful and He has been our source of encouragement and strength through His Word. Here is what He gave me this morning. . .

Isaiah 40:28-31 " The Everlasting God, the LORD, the Creator of the ends of the earth does not become weary or tired. His understanding is inscrutable. He gives strength to the weary, and to him who lacks might He increases power. Though youths grow weary and tired, and young men stumble badly, yet those who wait for the LORD will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary."

Genesis 2:7 "Then the LORD God formed man of dust from the ground, and breathed into his nostrils the breath of life; and man became a living being."

We believe that God created Timothy and has given him breath up to this time and we are trusting Him to sustain Timothy and to be his Breath of Life.

Actual Age: 4 months
Adjusted Age: 2 weeks

The long-awaited pictures from March are up!!! Hopefully we'll get some from April up in a couple of weeks.

Timothy is still having trouble breathing as a result of his BPD (see Sat. April 17). His airways are spasming and tightening up making it difficult for him to get the air and oxygen he needs. He is on the maixmum level of oxygen flow through the nasal cannula as well as 50 % more from the oxygen hood (tent) they placed over him last night. His chest kinda sinks in with every breath, indicating his struggle. He is still receiving breathing treatments (a steroid mist blown in his face) every 3 hours.

He has a follow-up eye exam tomorrow (Wed.) morning, at which time they will decide if the bleed in the right eye needs further treatment, surgery, or just more time to heal.

Feedings were decreased to 10 cc's an hour so his tummy doesn't get quite so full and put pressure on his lungs.

Praise -he is still breathing!
- today's x-ray showed clear lungs
- so far he has not needed to go back on the ventilator
- not rushing into eye surgery, getting a 2nd opinion
- he is fearfully and wonderfully made!


Prayer - eye exam would be quick and accurate
- maintain good blood gases
- his airways would open up allowing him to breathe more easily
- need for frequent breathing treatments would decrease
- good, steady weight gain

The new pictures are up!!!!

1 Peter 5:7 . . . "casting all your anxiety on Him [God], because He cares for you."

We have had lots of opportunities to put this verse to practice!

Actual Age: 4 months
Adjusted Age: 2 weeks

For those of you who read the urgent prayer request earlier here's an update: The doctors decided to wait on transporting the baby. He will have an eye exam for a second opinion on Wed. and at that time they will discuss further treatment reagarding the bleed in his right eye.

For the last couple of days Timothy has had increased difficulty breathing. He has been requiring more oxygen and it's still not enough. An x-ray today indicated that his right lung is quite congested (it may be an infection). He is receiving breathing treatments every 3 hours as well as gentle vibrations to his chest every 3 hours to try to loosen some of it up so he can cough it up or they can suction it out. His breathing is becoming very labored. Please pray for this situation because if he doesn't tolerate it they may have to re-intubate him and put him back on the ventilator. Another x-ray will be taken Tues. morning to see if the lung is clearing up at all.

His broken arm appears to be beginning to heal, although his doctor said it will probably take longer for it to heal than normal because of his previously poor nutritional status.

His nutritional status, however, is improving. Feedings are at 12 cc's an hour and they are adding calcium and vitamin D along with a substance called human milk fortifier to the breastmilk to increase his nutritional and caloric intake. He also receives electrolytes through an IV and Lipids (fats) as well. All this is to help him gain good weight.

Praise - platelet level is rising on its own
- tolerating the feedings

Prayer - that his lung would clear and he'd be able to breathe more easily
- wisdom for the doctors in decision-making regarding his breathing issues and eye bleed
- consistent good weight gain
- continued healing of the right eye and arm

Urgent Prayer Request: Timothy's doctor is concerned about the bleeding in his right eye. She knows of a specialist who can perform another surgery on his eye, however, this specialist is not local. Unless another specialist can be found, the baby will need to be tranported to Children's Hospital in L.A. tomorrow morning. Please pray that the doctor will be able to find the most qualified specialist and that the baby will not have to be transported anywhere. If the baby does need to be transported, please pray for safety.