Anneke Udates

Date: Thu, 19 Feb 2004 19:38:25 -0800

Subject: Prayer request

Dear friends and family,

I've put together an Anneke update mail list, which is why you are

receiving this e-mail. We would appreciate your prayers as Mike and

Rachel go into the hospital early tomorrow morning. They will start to

induce the baby. Decisions about surgery for the baby will follow the

birth and evaluation. Sylvia and I expect to be in the waiting area of

the hospital much of the day, and will have Gideon with us.

We would appreciate your continued prayers for safety and strength for

Rachel and Mike during the delivery, for baby Anneke's health, for

wisdom in decisions about treatment, for the medical staff, for two year

old Gideon, who is looking forward to seeing his baby sister, and for us

as well. We will keep you updated as possible.

If I have inadvertently included your e-mail on this list and you do not

want to receive further updates, please drop me a note to that effect.

Thanks for praying!

Cordially in Christ,

John

Date: Fri, 20 Feb 2004 06:49:45 -0800

Subject: Friday morning

Dear family and friends,

Mike and Rachel left about 5:45 this morning for the hospital. We will

be following before too much longer. In addition to praying for them,

please uphold family members at a distance, including Mike's family.

Sometimes it's harder to be further away at a time like this.

Again, thanks for praying.

In Christ,

John

Date: Fri, 20 Feb 2004 (2nd post) 23:21:05 -0800

Subject: Anneke Hope Schippers

Dear family and friends,

Anneke Hope Schippers was born at 2:57 p.m., Pacific time. Rachel

had a good labor and delivery, much better than with Gideon. Things

moved fast. The baby was posterier, and her shoulder was stuck

briefly, but she arrived fine.

She is 8 lbs., 11 oz., and 22 inches long, so she is a healthy size. She

had some difficulty starting to breathe, but some oxygen and bagging a

few times helped. Her color was fairly blue when we first saw her, but

Mike and Rachel say she is a nice pink now in the neonatal intensive

care unit at Legacy Emanuel Hospital. Her cardiologist wants to wait

until the ductus closes in the next day or two before making decisions

on just what kind of heart surgery she will have.

Gideon seems a little awestruck by all the activity and different

settings, but is doing very well. He seems pleased with his little sister.

Mike and Rachel are very thankful for your prayers, and ask that you

continue to pray for them and their daughter. And pray for family

members as well, both near and far away.

We were able to get some initial pictures. Rather than take bandwidth

to attach them to this e-mail, you can go to http://tinyurl.com/243g3 and

view or download if you wish.

Again, thanks for your prayers, and please keep praying.

Cordially in Christ,

John and Sylvia

Date: Sat, 21 Feb 2004 22:46:35 -0800

Subject: Saturday, Feb. 21, Anneke update

Dear friends,

A brief progress report on Anneke. She is in the neonatal intensive

care unit (NICU). She is taking some nourishment by mouth, but not

enough, so she got (over her protests) a feeding tube inserted through

her nose to her stomach to supplement. X-rays show that the shoulder

that got caught during delivery resulted in a broken collar bone. She's

on Tylenol to make her more comfortable. Her oxygen level is 85 to

90%, which pleases her doctors and nurses (and parents).

Surgery could be at any time if she shows distress, but will likely be

Tuesday or possibly Wednesday. How extensive it will be will be

determined by how she is doing, although at this point the doctor

suggests that it might not be the open heart surgery, but the less

serious, though still complicated procedure. Once she's released from

the hospital, she won't be allowed to be anywhere around crowds.

Even Gideon may have to give up his trips to bring coffee to Nanna at

school--too many germ-carrying first graders around!

Mike and Rachel are into the NICU regularly to see, hold, and feed her.

Gideon saw her there this afternoon, and even brushed her hair just a

bit.

Thanks for your continued prayers.

Cordially in Christ,

John

Date: Sun, 22 Feb 2004 21:11:58 -0800

Subject: Sunday, February 22, Anneke update

Dear family and friends,

Thanks for your faithful prayers. Mike and Rachel appreciate them,

and ask that you continue. Rachel was officially discharged tonight,

but they are able to stay at the hospital tonight, at least.

It looks like Anneke's surgery will be Tuesday afternoon. Although she

is maintaining a pretty good oxygen saturation level on her own (93%

when we saw her this afternoon), breathing is becoming more difficult,

harder work. Since the pulmonary artery is larger than the aorta, her

lungs are getting too much blood. She's too tired to eat on her own, so

nourishment is coming via the nasal tube.

She is on Tylenol for the broken collar bone, prostaglandin to keep the

heart duct open, and a diuretic to remove excess fluid and ease the load

on her heart. This first surgery should involve putting a band on the

pulmonary artery to reduce flow to the lungs, and removing a narrow,

underdeveloped, portion of the aorta, which is restricting flow to the

body. Mike and Rachel are pleased with the doctor who will be doing

the surgery (Dr. Starr--nationally known for his cardiac work).

Above all, they are thankful for the faithfulness of the Lord, and for the

prayers of God's people.

We will keep you posted.

Cordially in Christ,

John

Date: Mon, 23 Feb 2004 11:18:09 -0800

Subject: Monday morning Anneke update

Dear brothers and sisters,

We just had a call from Mike. Anneke was showing some distress

overnight, and is on a respirator to help her breathe. Surgery has been

moved up from tomorrow to this afternoon at 1:00 p.m. Will give you

more details as we can. Thank you for your prayers.

Cordially in Christ,

John

Date: Mon, 23 Feb 2004 (2nd post) 22:57:19 -0800

Subject: Anneke update, Monday evening

Dear praying friends and family,

Thank you for your faithful prayers. They are deeply appreciated--by

Mike and Rachel, and by the rest of us as well. Give thanks that

Anneke came through her surgery well, though she is not out of the

woods.

To give more background than I took time for this morning (my note

then was a rush as we left for the hospital): Surgery had been

scheduled for Tuesday (tomorrow) afternoon. But at 5:00 a.m. the

staff told Mike and Rachel that Anneke was worse. Digestive tract had

shut down, so they emptied her stomach. Breathing was very difficult,

and they put her on a ventilator. By mid-morning they made the

decision that they had to operate this afternoon. The heart was

struggling, and there was "massive valve leakage."

We got to the hospital about 12:30 p.m., and found Mike and Rachel

with Anneke in the neonatal intensive care, talking with the

anesthesiologist and surgeon. By 1:00 p.m. she was on her way to the

operating room. Surgery took about four hours once they started.

They went in from her left side. First they removed an underdevelped

section of the aorta. The aortic arch was pretty small, so they used

part of a neighboring artery to enlarge it. The doctor said he thought

he got a pretty good aortic arch. The pulminory artery was about twice

the size of the aorta. They put a band on it to constrict it, reducing

blood flow to the lungs, and easing the burden on the heart.

She came through the surgery well. They did not have to give her any

blood. The doctor, checking afterwards, said that she was less sick

than he expected. However, the heart valves, especially the aortic

valve, are still leaking ("moderate to severe" leakage), according to the

echogram. Some of this is because the heart was enlarged. The hope

is that the heart will shrink some as its load has been reduced, and that

the leakage will improve. If so, things are going well. If the leakage

does not improve, there is not a great deal they can do for that. Blood

pressure and heart rate are relatively good. She is on medication for

blood pressure, but that is not unusual after heart surgery.

As is normal for post surgery infants in this hospital, Anneke has been

moved to the pediatric ICU on the third floor. If things go well, she can

expect to be in there for three days or so. Mike and Rachel are able to

spend tonight in the room they were in. There is a family quiet room

off the PICU, and they can use a cot in there after tonight.

The case manager kept them posted on how surgery was going. She

let them know a half hour or so before Anneke moved from the

operating room to PICU, and Mike and Rachel waited with us and the

Bonebrake family from church in the hall. They did not stop moving on

their way to the PICU, but they slowed down and uncovered her face

so that Mike and Rachel could see her as they moved along. Mike and

Rachel were in to see her at 8:00 this evening.

In short, give thanks that things have gone well thus far, and continue

to pray--for healing, for the valve leakage to stop, and for God's grace

to continue to sustain them. They are VERY thankful for your prayers,

and have asked us to convey that thanks to you.

Cordially in Christ,

John and Sylvia

Date: Tue, 24 Feb 2004 13:32:39 -0800

Subject: Anneke update, Tuesday, mid-day

Dear praying friends,

There's not a great deal of news. Anneke seems to be holding her

own, Rachel reports. She is still sedated. We do have some new

pictures from a roll of film that Mike took. You can see them (and

copies of back updates, if you wish) at http://tinyurl.com/243g3 .

Thanks for your continued prayers. Physically, pray that the valve

leakage will improve. Also, please continue to uphold Mike and Rachel

and the extended family on both sides. Give thanks to God for his

grace and for his answers to prayer.

Cordially in Christ,

John

Date: Wed, 25 Feb 2004 11:53:37 -0800

Subject: Anneke update, Wednesday noon

Dear friends,

Thanks for your continued prayers. There is not a great deal new to

report. Anneke seems to be holding her own. She continues in the

Pediatric Intensive Care (PICU). She looks considerably better than

Sunday or Monday morning, even though she has been through major

surgery. She is still sedated, of course. She had the hiccups all day

yesterday--haven't heard if they have subsided.

Mike and Rachel spent last night at their home--getting some rest in

their own bed. Anneke was in good hands (and that's not only the

hands of the nurses and doctors!). They have headed back in to see

her, and we will follow once Sylvia is out of school. The vent for the

respirator which has been assisting her breathing may be removed

today. Will update you as we learn more.

Again, thanks for praying.

Cordially in Christ,

John and Sylvia

Date: Wed, 25 Feb 2004 (2nd post) 14:48:18 -0800

Subject: Anneke update, Wednesday afternoon

Dear brothers and sisters,

Mike and Rachel report that Anneke is holding her own. Doctors are

reducing the sedation. Pray specifically that her breathing will pick up

enough on its own that she can be taken off the respirator which is

assisting her. She is gets upset when disturbed, which is normal for a

baby.

Thanks for praying!

Cordially in Christ,

John

Date: Thu, 26 Feb 2004 00:03:00 -0800

Subject: Anneke update, Wednesday night

Dear family and friends,

Thank you for praying. Anneke is holding her own, and is making

some progress. Her sedating medications are being reduced,

although she is not really awake yet. They want her more responsive

before removing the ventilator. Her vitals signs are quite acceptable,

given her condition. When the nurse listened to her lungs this

afternoon while we were there, she was pleased that they sounded

more clear than she had heard them before.

Several of you have asked about the heart valve leakage. While it

would take another echogram to show just how much or little leakage

there is, her condition and vital signs do not indicate it getting worse.

They will probably run one in a few days, but there is nothing in her

condition right now that calls for an immediate one.

Anneke has stopped (mostly) the hiccups she had yesterday. Mike

and Rachel had some good time with her today, and Gideon, Sylvia,

and I saw her for a little while.

Local visitors: Mike and Rachel have really appreciated the visitors

they have had. However, from this point on, given Anneke's situation,

they would prefer that you communicate with them by e-mail or snail

mail, rather than trying to visit in the hospital. Anneke is the PICU,

where visiting is VERY restricted. Mike and Rachel really hate to be

torn between being in with Anneke or out in the waiting area with

visitors. So, the knowledge that you are praying, and an encouraging

note would really be more helpful than a visit in person at this time.

They hope you understand. And when Anneke is released from PICU,

either to the NICU or to the pediatrics floor, visitors will still be

restricted because Anneke will be at high risk for infection, and Mike

and Rachel will be taking over more of her care, in preparation for her

coming home. Thanks for being understanding.

We've added a few more pictures to the page: http://tinyurl.com/243g3

We expect Mike's parents out here tomorrow night. And keep on

praying, not only for Anneke, but for Mike and Rachel as well. Both are

pretty tired, physically and emotionally. At the same time, they rejoice

in God's grace and sovereign love.

Again, thanks for your prayers, for your concern, and for the fellowship

of the saints. You mean more than we can put into words. God is

good.

Cordially in Christ,

John and Sylvia

John & Sipkje Mahaffy johnmahaffy@earthlink.net

For pictures of Anneke and archived copies of updates go to:

http://tinyurl.com/243g3

If you are on this list by mistake or if you prefer not to receive these

e-mails, please drop me a note and your name will be removed

promptly.

Thanks for your prayers!

Date: Thu, 26 Feb 2004 (2nd post) 08:46:12 -0800

Subject: Anneke update: One more answer to prayer

Greetings, brothers and sisters,

I just had a phone call from Rachel. At 4:00 this morning they switched

Anneke's respirator to volume assist (which I assume means that the

patient initiates each breath, the machine just helps with the volume).

Later they removed the vent tube, so the little girl is breathing on her

own.

Thanks for your continued prayers. You might also remember to pray

for Mike's parents as they fly out here today.

Cordially in Christ,

John

- + - + - + - + - +

John & Sipkje Mahaffy johnmahaffy@earthlink.net

For pictures of Anneke and archived copies of updates go to:

http://tinyurl.com/243g3

If you are on this list by mistake or if you prefer not to receive these

e-mails, please drop me a note and your name will be removed

promptly.

Thanks for your prayers!

Date: Fri, 27 Feb 2004 10:30:19 -0800

Subject: Anneke update--One week

Dear brothers and sisters,

Anneke is a week old today. There are steps forward and backwards,

which is expected. I told you yesterday that the ventilator had been

removed. Anneke is back on it this morning--not that she has stopped

breathing on her own, but the heart was working a bit too hard. She is

still initiating the breathing, if I understand correctly. So please

continue to pray.

Also, give thanks for the safe arrival of Anneke's Grandpa and

Grandma Schippers. I'm about to take them in to meet their

granddaughter.

Cordially in Christ,

John

- + - + - + - + - +

John & Sipkje Mahaffy johnmahaffy@earthlink.net

For pictures of Anneke and archived copies of updates go to:

http://tinyurl.com/243g3

If you are on this list by mistake or if you prefer not to receive these

e-mails, please drop me a note and your name will be removed

promptly.

Thanks for your prayers!

Date: Fri, 27 Feb 2004 (2nd post) 21:15:41 -0800

Subject: Anneke update--Decisions

Dear brothers and sisters,

As I told you earlier today, Anneke had to go back on the ventilator.

Breathing without its assistance was working her half a heart too hard.

The doctors talked with Mike and Rachel today, and brought up, what

has been mentioned from the beginning, but seemed only a remote

possibility, the possibility of a heart transplant. As things progressed

today, it became evident that Anneke cannot survive without the life

support she is on. She is at the top of the list for a transplant, and the

insurance company has approved. Aside from the heart, other

systems, such as kidneys and digestive tract, seem to be working well.

Mike and Rachel have made a decision to go ahead with this. It will

involve being down at Loma Linda, California, for at least six months.

Anneke and Rachel will probably be flown down the middle of next

week, and Mike plans to drive down. They and we have a lot of

questions and far fewer answers at this point. In addition to praying for

the life and health of baby Anneke, please pray for wisdom, strength,

and grace for Mike and Rachel.

Mike's parents are out here, and they got to meet Anneke today. We

(and they) are very thankful that they can be here at this point.

We cannot begin to express how profoundly grateful we are for the

prayers of God's people. Literally throughout the world people are

praying. It's humbling. And it's a reminder that we all live daily by his

grace.

Thank you!

Cordially in Christ,

John and Sylvia

Date: Sun, 29 Feb 2004 23:17:53 -0800

Subject: Anneke update, Sunday night, Feb. 29

Dear friends and family,

It was good to worship with God's people today. We are vividly

reminded of the Lord's faithful grace and of the care and concern of

the saints. Gideon, Bob and Sheila Schippers and Sylvia and I went in

to visit Mike and Rachel and Anneke this afternoon. Anneke is stable.

She is drinking milk via the feeding tube. There will be an evaluation

Wednesday, and Anneke and Rachel could be on their way to Loma

Linda by Wednesday night at the earliest. Mike will probably drive

down. Both are pretty busy right now, and look tired. Thanks for your

continued prayers for them. Also, please pray for Bob and Sheila,

Mike's parents, as they return home to Michigan tomorrow.

Again, thank you for your prayers. We will keep you posted as any

news develops.

Cordially in Christ,

John and Sylvia

Date: Tue, 2 Mar 2004 09:08:01 -0800

Subject: Anneke update, March 2

Dear friends,

There's not a lot of news for an update. Anneke is doing OK. She's

still on the ventilator, giving her lungs an assist so that the heart

doesn't overwork. She's getting milk via the tube through her nose to

her stomach. All systems except her heart seem to be working well.

We're very thankful for that.

A major evaluation will take place tomorrow, and Mike and Rachel will

know more then. So please keep all in your prayers. Mike and Rachel

are very busy getting things in order for going down to California.

We're thankful that Mike's parents were able to come out for a visit.

They made it safely back yesterday.

Thanks for the many prayers and for the offers to help. We will keep

you posted. Also continue to uphold the staff which is caring for

Anneke. They work in situations which are always challenging,

sometimes very difficult as well as sometimes rewarding.

Cordially in Christ,

John

Date: Wed, 3 Mar 2004 01:05:36 -0800

Subject: Anneke update, Tuesday night (well, early Wednesday)

Dear family and friends,

Just a quick update before I crawl into bed. Anneke seems stable,

holding her own. She has had her eyes open more. She takes about

24 cc of milk per hour (around the clock) via the tube through her nose

into the stomach.

We would appreciate your prayers for the evaluation being done

tomorrow at Loma Linda. That should determine whether Anneke is

accepted. The nurse manager at Emanuel Hospital has faxed all kinds

of material, and is arranging transportation, likely on Thursday, should

she be accepted. We will let you know the outcome as soon as

possible.

Some new pictures have been added to the web page.

Again, thanks for your prayers and for your help. God does work

through his people. Mike and Rachel are greatly encouraged, and

almost overwhelmed, by the support and prayers.

Cordially in Christ,

John and Sylvia

Date: Wed, 3 Mar 2004 (2nd post) 19:37:57 -0800

Subject: Anneke update--still waiting

Dear brothers and sisters,

Mike and Rachel (and the rest of us) are still waiting for news from the

evaluation that was to take place at the hospital at Loma Linda today.

Two things need to happen: first, they need to decide that Anneke is a

candidate for a heart transplant, and second, they need to have a bed

for her. Anneke's nurse-manager told Rachel today that it is not

unusual for the second factor to cause a delay. Your continued

prayers are appreciated.

About noon today the nurse was turning Anneke's head to the other

side. Anneke arched her neck and back, and the ventilator tube pulled

out. Since she seemed to be doing OK with it out, they have left it out

for the short term. She is breathing entirely on her own. If she shows

any distress, it will go back in. Her oxygen saturation level is about 70

to 75%, which would not thrill your doctor, but is not bad for Anneke,

given the mixture of oxygen rich and oxygen poor blood in her heart.

Again, thanks for praying!

Cordially in Christ,

John

Date: Thu, 4 Mar 2004 12:17:07 -0800

Subject: Anneke update: She's in

Dear brothers and sisters,

I just had a phone call from Rachel indicating that Anneke has been

accepted in the heart transplant program at Loma Linda. We do not

yet know when she will head down there. But she will be waiting for a

heart to become available.

Thank you for your prayers, and please continue to pray in the time of

transition and decisions ahead. Also, please uphold the family--who it

will be is yet undetermined, and we will likely never know their identity--

who will face the grief of the death of a child, either at birth or at a

young age. Please pray for God's grace to sustain that family as well.

Again, thanks for your faithful prayers.

Cordially in Christ,

John

Date: Thu, 4 Mar 2004 (2nd post) 22:46:43 -0800

Subject: Anneke Update: Transportation on Friday

Dear brothers and sisters,

As I told you, Mike and Rachel learned this morning that Anneke has

been accepted as a candidate for a heart transplant. A neonatal air

transport team based in Phoenix is what Mike and Rachel's insurance

uses. The team will fly to Portland and will pick Anneke and Rachel up

at 11:00 a.m. tomorrow (Friday). Mike will leave earlier that morning,

driving down to Loma Linda. The transport team will deliver Anneke to

the Loma Linda Medical Center. Please pray for traveling mercies for

all.

Anneke is doing well. She is tolerating being off the ventilator fine

(oxygen saturation was running 75-79% when I was in late this

afternoon). Although they will reinsert it if her heart shows distress,

they have not needed to. And the transport team can do it during the

trip if necessary.

The feeding tube is back in, since Anneke was not that interested in a

bottle. She is getting 60 ml of milk every three hours. Aside from her

heart, she is doing well.

I do not yet have a mailing address for Mike and Rachel in Loma

Linda, but will pass it on as soon as I get it. And as plans take shape

for providing some help, we will pass that on also.

Again, thank you for your prayers and concern. Some new pictures

should go up on the web page tonight.

Cordially in Christ,

John

Date: Fri, 5 Mar 2004 14:37:23 -0800

Subject: Anneke update: They are on their way

Dear brothers and sisters,

Three of the four members of the Schippers family are in route to

Loma Linda. Mike left, driving, about 7 this morning. It's about 1,000

miles (1,600 km) by road.

Sylvia and I just got back from the hospital. We took Rachel in this

morning. The air transport team came over, bundled Anneke up in a

bed that looks something like a space capsule (pictures will follow

when we get the next roll developed), and left with Anneke and Rachel

for the airport, where the plane (two engine turboprop) would take

them to California. The team includes a nurse and a respiratory

specialist (and of course, the pilot, whom we did not meet). They left

the hospital about noon.

Gideon is staying with us initially. Mike and Rachel will be staying at

the Ronald McDonald house at the Loma Linda Medical Center. I still

don't have a mailing address, but will get it soon.

Again, thank you for your faithful prayers and support.

Cordially in Christ,

John

Date: Fri, 5 Mar 2004 (2nd post) 22:00:13 -0800

Subject: Anneke update: Arrival

Dear brothers and sisters,

Rachel has called from Loma Linda. Anneke handled the trip well.

She is in the intensive care unit, and Rachel is getting settled into the

Ronald McDonald House. Last she heard from Mike, he was about 90

miles from Los Angeles.

Their address (for which several have asked me) is c/o Ronald

McDonald House, 11365 Anderson St., Loma Linda, CA 92354.

Thanks for your faithful prayers.

Cordially in Christ,

John

Date: Sat, 6 Mar 2004 10:08:45 -0800

Subject: Anneke update: Mike made it in safely

Dear brothers and sisters,

Rachel called about midnight. Mike had just arrived safely after a very

long day of driving. Give thanks.

Thanks for praying.

John

Date: Sun, 7 Mar 2004 00:34:02 -0800

Subject: Anneke update: Holding steady

Dear family and friends,

We heard from Mike and Rachel tonight from Loma Linda. Anneke is

doing OK, holding steady--still off the ventilator. Mike and Rachel were

able to give her a sponge bath today and to hold her.

Gideon spoke to his mom and dad tonight. We doubt that he has any

idea how far away they are, but he seems to be doing well also. Quote

of the day: At one point while talking on the phone he said, "Anneke

has broken heart."

The latest pictures are on the web page. Thanks for your prayers. We

are thankful for God's faithfulness and the fellowship of the saints.

Cordially in Christ,

J & S

Date: Wed, 10 Mar 2004 22:37:16 -0800

Subject: Anneke update: More tests--and she's in

Dear brothers and sisters,

There hasn't been a great deal of new news, and I've hesitated to send

out too many "nothing new to report" e-mails. But we do have some

news. Anneke has been undergoing further tests. Before going into a

heart transplant, they want to make sure the patient is healthy. One

scan showed a possible urinary tract problem, which was checked out

yesterday. Anneke apparently has a double ureter from one of her

kidneys (joining just before the bladder). The tests showed no

evidence of reflux. In short, Anneke is on the list for a heart transplant,

and is at the highest level. Now the waiting continues.

You might particularly pray for her (and Mike and Rachel) during this

waiting time. They were told that that it is not during or after the

transplant that is the most risky time, but while waiting for the

transplant. Please continue to pray for Anneke's health, and for God's

grace to continue to sustain Mike and Rachel.

They continue to be very grateful for your prayers, concern, and

support. Anneke is holding her own. She feeds a bit from a bottle, but

that tends to tire her, so most of her milk arrives via the tube through

her nose into the stomach. She is still off the ventilator, with her

oxygen saturation level running 70 to 75%.

Mike and Rachel have had some difficulty accessing their e-mail, but

hope to be able to get to it soon.

Trinity Presbyterian Church is in the process of setting up a special

diaconal fund for major medical needs--should be done shortly, and

since several of you have asked, I'll let you know details as soon as it

is formally set up in the next day or two.

It appears that Mike's insurance is providing good coverage.

Maintaining the premiums while he is on leave from work will be a

priority. And they have continuing expenses while he is on leave.

Present plans are for Sylvia to take Gideon down to them during spring

break (the last full week of March).

Again, thanks for praying.

Cordially in Christ,

John and Sylvia

Date: Sun, 14 Mar 2004 23:46:08 -0800

Subject: Anneke update: Meeting Dr. Bailey, Trinity OPC special diaconal fund

Dear brothers and sisters,

Mike and Rachel called this evening (Sunday night). Anneke is holding

her own. Rachel says that Anneke is spitting up quite a bit--but as we

recall when Rachel was a baby, that was true of her as well. Anneke is

active--she has pulled out the feeding tube that runs through her nose

into her stomach a couple of times. And she is now in a crib.

Continue to pray for them in this time of waiting.

They tell us that a two month old baby at the hospital is getting a heart

transplant today. You might remember that family in your prayers also.

Mike and Rachel are scheduled to meet Dr. Bailey, the heart surgeon,

tomorrow, and have asked that we remember that meeting in prayer.

Mike and Rachel have appreciated the fellowship, hospitality, offers to

help, and concern that they have experienced at both the Sovereign

Grace Orthodox Presbyterian Church in Moreno Valley and the River

Christian Reformed Church in Redlands. Both congregations have

been very gracious and helpful--they have been warmly received.

Thank you!

Mike reports that the medical insurance coverage he has through his

employment is good. At the same time, they are facing financial

challenges. As I reported, Mike was granted leave time from work.

Several people have already provided some generous help, for which

they are very grateful.

Trinity Orthodox Presbyterian Church, their home congregation here in

Newberg, announced today that a special major medical diaconal fund

had been set up. (A number of people in this congregation and

elsewhere have asked about the possibility of helping with financial

needs.) The purposes of the fund are to help with maintaining medical

insurance coverage, assisting with family living expenses, and helping

to meet medical bills not covered by insurance. Anyone wishing to

help contribute may send a gift, made out to Trinity Presbyterian

Church and identified for the "diaconal major medical fund" to:

Trinity Presbyterian Church

600 E. Columbia Dr.

Newberg, OR 97132

The church phone is 503/538-4652.

Over spring break Sylvia plans to travel down to Loma Linda, leaving

this Friday, to take two year old Gideon to his parents (we've had him

here while they were getting settled in). We'd appreciate prayers for

traveling mercies, and also for Gideon's health. He had a stomach bug

this afternoon, but seems to be improving tonight.

Again, thank you for your continued prayers and concern.

Cordially in Christ,

John and Sylvia

Date: Wed, 17 Mar 2004 21:37:25 -0800

Subject: Anneke update

Dear friends and family,

There's not a great deal new to report. Anneke had done some

vomiting yesterday (probably too tired to digest her food), but only

some spitting up today. We're thankful. Mike and Rachel are hanging

in there.

We would also appreciate prayer for Sylvia (my wife, Rachel's mom--

for those of you not familiar with our family), who is riding down to

Loma Linda taking Gideon to be with his folks, leaving on Friday

morning. She expects to spend the week of spring break with Mike

and Rachel before returning with some other friends.

We appreciate the prayers and other support. Thanks!

Cordially in Christ,

John

Date: Sat, 20 Mar 2004 19:39:21 -0800

Subject: Anneke update: Gideon and Sylvia made it

Dear family and friends,

Gideon and Sylvia had a good trip down to Loma Linda yesterday.

They left Donald, Oregon, riding with friends, about 5:15 a.m., and

arrived in Loma Linda about midnight. Sylvia says Gideon was a good

traveller. He was really happy to see his parents! And I gather that

was reciprocated.

Mike and Rachel are able to hold Anneke for feeding. Sylvia saw her

for 10 minutes today. They are running some blood tests on Anneke,

since she has had some trouble keeping her temperature and her

blood pressure up. No results yet.

There have been several generous gifts to the major medical fund set

up by the diaconate at Trinity. Thank you!

Sylvia plans to stay in Loma Linda for the week, returning next

Saturday with the Konings, friends of Mike and Rachel's.

Thanks for your continued prayers.

Cordially in Christ,

John

Date: Fri, 26 Mar 2004 12:29:52 -0800

Subject: Anneke update: Coming up on 5 weeks

Dear brothers and sisters,

Tomorrow Anneke will be 5 weeks old. Thanks for your continued

prayers. Sylvia has spent this week in Loma Linda. Anneke is holding

her own, sleeping most of the time, as she is pretty tired. She has

gained some weight, and is now at 9 pounds.

We'd appreciate your prayers for Sylvia as she returns tomorrow,

riding up with friends of Mike and Rachel's, who have offered her a

ride. Gideon will be staying with his parents for a while. Please

continue to pray for the Schippers during this time of waiting.

Again, thank you for your prayers and concern.

Cordially in Christ,

John

Date: Sun, 28 Mar 2004 17:07:32 -0800

Subject: Anneke update, Loma Linda pictures

Dear family and friends,

Thank you for your continued prayers. Sylvia made it safely back last

night, or rather at 2:00 this morning, having left Loma Linda about 9:45

a.m. Brian and Melissa Koning had gone down to California over

spring break especially to visit Mike and Rachel, and they were kind

enough to provide a ride back for Sylvia. Of course Sylvia brought

back pictures, some of which are now up on the Anneke page (URL

below).

Sylvia says that Anneke continues to hold her own. There is one spot

on her incision from the heart surgery when she was three days old

that is slow in healing. They are giving her protein boosters along with

the milk she gets. They don't want her drinking excess fluids, since

they would like to minimize problems with edema. She does some

drinking from a bottle, but most of her meals come via the tube, so that

she does not tire herself too much with sucking.

Mike and Rachel were delighted to see Gideon, and he them. But, as

helpful as the Ronald McDonald House is, the one room and strange

situation are still things to which he is adjusting. He does enjoy the

play area at the RMH. We will likely have him back up here with us in

Newberg around the middle of next month. Last week he got in to see

his sister once--through a glass window. Visiting, especially from

children, is very limited because of the risk of infection. No children

may visit during flu season. After April 1st healthy siblings may visit for

15 minutes once a week.

During the time they can visit her Mike and Rachel are able to hold

Anneke, bathe and feed her. Her color is a bit dusky because of the

mixing of oxygen rich and poor blood in her heart.

If you want to drop them a note, their address is:

Mike and Rachel Schippers, c/o Ronald McDonald House, 11365

Anderson St., Loma Linda, CA 92354. Their access to e-mail is still

sporadic.

Thank you for your prayers and for your help in meeting needs. Please

continue to pray for a heart, and for God's grace for all involved during

the difficult time of waiting.

Cordially in Christ,

John and Sylvia

Date: Wed, 31 Mar 2004 18:49:36 -0800

Subject: Anneke update: hyperbaric oxygen therapy

Dear brothers and sisters,

Thank you for your continued prayers. The Schippers family is doing

well in Loma Linda. Gideon is adjusting well. Anneke is still waiting for

her heart--and so are the rest of her immediate and extended family.

I believe I mentioned that the incision from her surgery when she was

three days old has been slow to heal at one end. Anneke will be

undergoing hperbaric oxygen therapy for an hour twice a day for 10

days to promote its healing. I ran across the following web site which

gives detailed information (for those of us who are medically

challenged): http://woundcare.org/newsvol1n3/ar8a.htm

Thank you for the many expressions of your caring!

Cordially in Christ,

John and Sylvia

Date: Sun, 4 Apr 2004 22:01:23 -0700

Subject: Anneke update: Gideon will be getting in

Hi! Sylvia just spoke with Mike and Rachel. Anneke is holding her

own. She seems to be tolerating the hyperbaric oxygen treatments

well. She has had eight of them. No sign yet of further healing of the

old incision, but they were told that they probably would not see

anything until after ten treatments.

Gideon will spend some time tomorrow with a child life specialist, and

then will get in to visit his sister tomorrow evening. Aside from a look

through a glass window, this will be the first since Anneke left Portland.

Mike's parents are visiting in the area (one of Mike's sisters and her

husband live a couple of hours from Loma Linda).

Please continue to pray for the provision of a heart --and also

remember to uphold whatever family will be going through a time of

loss and grief. Ask for strength for Anneke, for protection from any

illness or infection. And continue to pray for Mike, Rachel, and Gideon

during this time of waiting. Again, thanks for your prayers and help!

Cordially in Christ,

John and Sylvia

Date: Tue, 6 Apr 2004 21:25:14 -0700

Subject: Anneke update

Dear family and friends,

Thanks for praying. Anneke's hyperbaric oxygen treatments are now

once per day (I'm not sure why the change). Part of the incision is still

irritated. Please continue to pray for healing.

Also, Gideon enjoyed seeing his sister yesterday. But today he came

down with a cough. Please continue to pray that Anneke does not

catch any bugs. Mike and Rachel did not see Anneke today--they are

waiting to make sure they don't have a cold or cough.

Thanks for your faithful prayers!

Cordially in Christ,

John

Date: Wed, 14 Apr 2004 03:33:53 -0700

Subject: Anneke update: Travel

Dear friends,

Thanks for your continued prayers. Anneke continues to hold her own.

Please continue to pray for a heart. Gideon is feeling better. I would

appreciate prayer for traveling mercies. I'm heading out the door for

the airport (hence the strange time stamp on this) for a meeting at

Dordt College. I'm returning via Loma Linda Friday night. Saturday

noon Gideon and I have tickets to come back up to Newberg, where

Gideon will be staying with us for a time. Please pray for safety in

travel, and for Mike, Rachel, and Gideon as they will be apart for a

while.

Thanks for praying!

Cordially in Christ,

John

Date: Sun, 18 Apr 2004 22:53:14 -0700

Subject: Anneke update: holding and growing

Dear brothers and sisters,

Thanks for your continued prayers for Anneke and her family and for

travel. Last night I got back from my trip--with Gideon. He enjoyed the

flights, and will be staying with us for a while.

Anneke continues to hold her own. The hyperbaic oxygen treatments

have been extended since her incision of almost two months ago is still

only partially healed. She has gained weight--is up to 10 lbs, 6 oz.

Beyond that it is simply waiting. Your prayers and concerns are deeply

appreciated.

I did bring back with me a few pictures, including one of Anneke in the

hyperbaric oxygen chamber and several of Gideon visiting his little

sister, so check out the URL below if you're interested.

Rachel just called. She and Mike spent two and a half hours with

Anneke this evening. They are still in the Ronald McDonald house, but

may be moving to a one bedroom duplex (also part of the Ronald

McDonald system) before long.

Again, thank you.

Cordially in Christ,

John

Date: Fri, 30 Apr 2004 23:34:34 -0700

Subject: Anneke update: some progress

Dear family and friends,

It has been a while since I've checked in, both because my schedule

has been full, and because there has not been a great deal to report.

However, in the last day or two we've received some news--no, not

THE news that a heart is available, but nevertheless reasons for

thanksgiving.

The hyperbaric oxygen treatments Anneke has been receiving seem to

be helping slowly. Mike and Rachel report that the incision is looking

better. Also, Anneke has started some physical therapy, which Mike

and Rachel are also doing with her. Because of the low oxygen level,

she sleeps a lot, and does less moving than she would with a whole

heart. They are doing some moving of her limbs to strengthen her

muscles, turning her from one side to another so that she moves her

head to follow, and holding her up in something closer to a sitting

position when they have her on the lap. Recently added to Anneke's

care givers as another primary nurse is a nurse with an infant heart

specialty. Next week Mike and Rachel hope to move into a small

Ronald McDonald apartment with a separate bedroom. That will give

them more room than their present situation with a single room at the

Ronald McDonald house.

And Mike and Rachel have sent some pictures, so, if interested, check

the web page at the URL below.

The Lord is being gracious in upholding them. Gideon is doing pretty

well here--misses his parents, but seems to adjust pretty well. I look

after him during the day (it has been a while, but I remember studying

with small children around!), and he plays well as long as someone is

there with him. Sylvia takes over as soon as school is over. Next

week will be challenging, as I have a committee meeting in

Philadelphia, but Auntie Diane and several people from the church are

helping out those three days during school hours.

Again, thanks for your faithful prayers and concern.

Cordially in Christ,

John

Date: Sun, 2 May 2004 23:06:04 -0700

Subject: Anneke update: back on oxygen assist

Dear brothers and sisters,

Rachel called this evening. Anneke is back on oxygen assist--she was

having trouble keeping her blood oxygen level above 70%. There is

some concern, because that could be an early sign of heart failure.

Also (and less serious), she has a bad case of heat rash on her

abdomen.

We, and they, appreciate your continued prayers.

Cordially in Christ,

John and Sylvia

Date: Thu, 6 May 2004 23:35:23 -0700

Subject: Anneke update: New address for Mike and Rachel

Dear friends,

Thanks for your faithful prayers. Mike and Rachel are thankful to have

moved into the Ronald McDonald apartment, and have asked me to

pass on the new address:

Mike and Rachel Schippers

24657 Stewart St., # C

Loma Linda, CA 92354

Their apartment phone is 909/558-7381. Since they are in the

apartment, they are able to access e-mail much more readily. Their e-

mail is nwoutdoorfun@earthlink.net

There is not a lot of change with Anneke. She is still on supplemental

oxygen, which brings her blood oxygen level up into the mid 70% level.

Please continue to pray for a heart for her, and for continued patience

and quiet trust for Mike and Rachel.

Cordially in Christ,

John and Sylvia

Date: Sat, 8 May 2004 21:49:14 -0700

Subject: Anneke Update: Sleepy day

Dear brothers and sisters,

Thanks for your continued and faithful prayers. Rachel reports that

Anneke had a sleepy day today, but otherwise, no real change. She

(Anneke) is receiving both physical and occupational therapy.

Our local bi-weekly newspaper, the Newberg Graphic, just did an

article on Anneke today. I've e-mailed it to Mike and Rachel, but if any

of you want to see it, it's linked from the Anneke page (URL below), or

directly at: http://www.trinitynewberg.org/Graphic.htm .

Have a good Lord's Day tomorrow. And, as you worship, continue to

uphold in prayer, not only Anneke and Mike and Rachel, but many

others who are walking through deep waters. One of the saints here at

Trinity Presbyterian Church, a good friend and very godly man, has just

received discouraging news in his fight against cancer. Please pray for

Bob. We live in a world which is under the curse--but we live day by

day trusting the faithful Savior, whose death and resurrection marked

the beginning of the undoing of the curse. He is our hope.

Cordially in Christ,

John and Sylvia

Date: Mon, 10 May 2004 21:28:17 -0700

Subject: Anneke update: An additional web site

Dear family and friends,

Mike and Rachel have just started an additional web site for Anneke (it

will supplement, but won't replace these updates or the Anneke site

where these updates and pictures are archived). You can find it at:

http://www.caringbridge.org/or/anneke/

It is more of an on-line journal (and has a great picture of Anneke on

it). The updates I send out are a bit less frequent and focus on news

and prayer requests.

Thanks for your continued prayers, for Anneke, for Mike and Rachel

(waiting without any definite time frame is not easy), for Gideon, and

for extended family in Michigan, Oregon, and elsewhere. Give thanks

for God's faithfulness.

Cordially,

John and Sylvia

Date: Wed, 12 May 2004 15:43:41 -0700

Subject: Anneke update: a little more information

Dear family and friends,

A little over a week ago we asked for prayer concerning the decrease

in Anneke's blood oxygen level--and mentioned that it might be an

early sign of heart failure. While that is true, it now appears that the

drop in oxygen level may also be related to the band that was placed

around her pulmonary artery when she had the first surgery in the

Norwood procedure when she was three days old. That surgery saved

her life--in fact it was moved up one day, because it did not look like

she would survive another 24 hours without it. At that point too much

blood was flowing to the lungs, and not enough to the body, so the

band restricting the blood flow to the lungs was important. Now, as

she has grown, the lungs are not getting enough blood. Even on

supplemental oxygen, her level is in the 60's.

The initial surgery in the Norwood series is typically followed a couple

of months later with a second heart surgery, re-routing some of the

blood flow, and the band is taken care of at that time. However,

Anneke is now a candidate for a transplant, and of course neither the

doctors nor Mike and Rachel are eager for an extra surgery. As

Rachel says in her journaling on her Anneke site for today(URL below),

they are praying for the prompt provision for a heart for Anneke.

As we have asked before, please continue to pray for the provision of a

heart. But the answer to that prayer also means that another family will

be going through grief and loss because of illness or accident. So

please pray for God's grace to touch all involved in this situation.

Gideon is doing well. He misses his parents and Anneke, but talks

with the former on the phone.

Cordially in Christ,

John and Sylvia

Date: Thu, 13 May 2004 00:16:17 -0700

Subject: Anneke update: Thanksgiving

Dear family and friends,

We've been asking you to pray about Anneke's oxygen saturation

level. Well, Rachel's entry on their Anneke page puts it better than I

can:

<< Another day and another entry. Not too much to write

about today...which I guess is a good thing:). We've had

an uneventful day with lots of cuddle time.

Late last night I called to check on Anneke and the nurse

said that she was satting in the 50s so her oxygen was

cranked up, but then early morning she was up in the

90s!!! So she was on room air for a few hours. Today she

was doing well in the 70s and 80s. We thank God for each

day that the de-satting isn't an issue.

Tonight was fun. It was time to switch out her old nasal

canula and corpak (oxygen and feeding tubes) for new

ones, so we got a ton of pictures without any tubes on her

face! A very rare thing, so we grabbed the chance to snap

a roll. I was dumb enough to not take any pictures with the

digital camera, so you'll have to wait until we get the film

developed...sorry Mom:)! >>

Thanks for your faithful prayers!

Cordially in Christ,

John and Sylvia

Date: Thu, 20 May 2004 09:01:16 -0700

Subject: Anneke update: 3 months and holding

Dear friends,

Anneke is three months old today and . Rachel's journal posted last

night reads: << I can't believe I forgot to mention this in the last

journal entry. I guess I had a lot of other things to write about

and it just slipped my mind. But guess what??? ANNEKE

ROLLED OVER! It was from front to back, but it was still an

honest-to-goodness roll. I think it surprised her a little, it sure

surprised us! But she did it again tonight and I think she has the

hang of it now.

She also satted so well today that she was on room air the whole

day. Tonight she hit 97, the highest we have ever seen her go. It

was amazing to see the monitor go that high, pretty cool. Now if

only her septum would start to grow...and then her left

ventrical... One can always hope, right:)? >>

Thanks for your continued prayers. The ladies in Trinity are doing a

yard sale here at the church building tomorrow and Saturday morning

to put some more funds in the diaconal major medical fund. Thank

you to all!

Cordially in Christ,

John and Sylvia

Date: Fri, 21 May 2004 01:06:22 -0700

Subject: Anneke update: Prayer that she remains healthy

Dear praying friends,

Just a quick note. Rachel reports that Anneke's nurse on Thursday

went home ill late in the day with a fever of 102 degrees. Please pray

that Anneke does not come down with that illness or any other bug. If

she should be ill, of course, she would not be a candidate for surgery

even if a heart were available. Also, fighting any infection would be

very hard for her.

Thanks for your faithful prayers.

Cordially in Christ,

John and Sylvia

Date: Mon, 24 May 2004 23:28:00 -0700

Subject: Anneke update: Good news for one of the other infants

Dear family and friends,

Rachel called this afternoon. The baby at Loma Linda ahead of

Anneke waiting for a heart was in surgery today--getting her heart.

Mike and Rachel would like you to pray for her. Also uphold the family-

-about which we know nothing--that has suffered loss.

As I mentioned the other day, last Friday and Saturday the ladies here

at Trinity OPC (Mike and Rachel's home church), held a yard sale to

add to the diaconal major medical fund. Things went very well (despite

some light rain Saturday morning), and brought in about $1,000. God's

people have been very generous! Your faithfulness is deeply

appreciated.

Cordially in Christ,

John and Sylvia

Date: Fri, 28 May 2004 00:11:24 -0700

Subject: Anneke update: Pray for encouragement

Dear praying friends,

Mike and Rachel's entry in their journal on their CaringBridge site for

Thursday night reads:

<<I don't have much to write today. So all I will ask is to

please continue praying. I've had discouraging feelings

today, asking God if the heart will ever come. We've been

really content and patient so far, so I just pray that God

gives us the grace to continue in that vein until the heart

comes.

Please pray that we continue feeling peace, that Anneke

stays healthy (and us too!), and that the heart does come

soon! We keep hearing how amazing and weird it is that

Anneke is doing so well, and that it makes us wonder if it's

the calm before the storm. But we can't think like that and

we have to take each day as it comes.

Thanks so much.....>>

Thanks for your continued prayers!

Cordially in Christ,

John and Sylvia

Date: Sat, 12 Jun 2004 01:21:12 -0700

Subject: Anneke update: Hanging in there

Dear family and friends,

Thanks for your continued prayers. I've been away at General

Assembly (and away from my computer with the update list), but there

has not been a great deal new to report. Rachel writes late Friday:

<< Anneke took her feedings much better today. She drank

well (or I should say better) this afternoon and tonight she

took 30 cc's. It's good to see and hopefully tomorrow she'll

just as well, if not better.

Her nurse and the docs were a little concerned this

morning because she didn't seem to be acting her usual

smiley self. When we came in this afternoon she perked

right up was very cheery until she zonked for an afternoon

nap. I chalk it up to her being human and everyone has an

"off" day once in a while. But it's still good to know that

they carefully monitor her actions to see if she's getting

sick.

Today has felt like patience is starting to wear thin, we are

so anxious to get out of this crazy hospital life and be a

normal family. I guess we may be having an "off" day

too...we're all allowed one every now and then:). >>

Thank you for your faithful prayers!

Cordially in Christ,

John and Sylvia

Date: Wed, 16 Jun 2004 14:32:25 -0700

Subject: Address update

Dear friends,

Mike and Rachel are in the process of moving to a slightly larger place,

where they have a second bedroom. They are busy cleaning this

afternoon.

The new address is (same as before except for the unit #):

24657 Stewart St., # A

Loma Linda, CA 92354

Phone is 909/558-7172

Anneke continues to hang in there. Thanks for your faithful prayers.

Cordially in Christ,

John and Sylvia

Date: Sat, 19 Jun 2004 06:40:25 -0700

Subject: Anneke update: Decisions

Dear brothers and sisters,

Mike and Rachel had a meeting on Friday with Anneke's cardiologist.

The cardiac team at Loma Linda has met together to go over Anneke's

case in detail. She has been doing very well under the circumstances.

It appears from recent echograms that the heart valve leakage has

gone from severe to only mild. Pending further tests next week to

determine the leakage level and heart's blood flow, Anneke may again

be a candidate for the original series of surgeries (of which she has

had the first when 3 days old). Plusses and minuses of both options

(the surgeries or transplant) will be carefully weighed in the process of

choosing the best course for Anneke.

Please pray for much wisdom for the cardiac team and Mike and

Rachel as they do further testing, evaluate, and face decisions. They

give more details in their journal (link below).

Thanks for praying.

John and Sylvia

- + - + - + - + - +

John & Sipkje Mahaffy johnmahaffy@earthlink.net

For pictures of Anneke and archived copies of updates go to:

http://tinyurl.com/243g3 . Also check out Mike and Rachel's on-line

journal: http://www.caringbridge.org/or/anneke/ .

If you are on this list by mistake or if you prefer not to receive these

e-mails, please drop me a note and your name will be removed

promptly.

Thanks for your prayers!

Date: Tue, 22 Jun 2004 09:12:14 -0700

Subject: Anneke update: traveling

Hi!

We'd appreciate your prayers. Sylvia, Gideon (Mike and Rachel's son,

Anneke's big brother), and I are driving to Loma Linda, leaving as soon

as the car is loaded. They will stay with Mike and Rachel a while, but I

fly back on Friday. Also, please pray for Anneke as she undergoes

more tests today in preparation for decisions about course of

treatment.

Cordially in Christ,

John and Sylvia

Date: Sun, 27 Jun 2004 08:12:28 -0700

Subject: Anneke update: A heart is available

Dear friends and family,

I just received a call from Sylvia, who is down in Loma Linda with Mike

and Rachel. They got a call this morning that a heart was available for

Anneke. Mike and Rachel are heading over to the hospital as I write.

How this fits in with other possibilities we don't know at this point, but

we would appreciate prayer for wisdom in the decisions being made

shortly, and for God's blessing on all that is done.

Also, we obviously know nothing about the situation that made a heart

available--but pray for that family as well today.

We will update you as we get more information.

Cordially in Christ,

John

Date: Sun, 27 Jun 2004 (2nd post) 12:40:11 -0700

Subject: Anneke update: The transplant is on

Dear family and friends,

Mike just called Sylvia, who called me. They are going ahead with the

transplant. Mike and Rachel are with Anneke. She goes into surgery

about 1:00 p.m., Pacific Daylight Time(just under a half hour from

now), and the transplant itself will take place about 2:30 p.m. Your

continued prayers are appreciated.

Cordially in Christ,

John

Date: Sun, 27 Jun 2004 (3rd post) 16:12:03 -0700

Subject: Anneke update: Surgery is in process

Hi! The latest update: The heart just arrived at the hospital in Loma

Linda, and surgery is underway. Thanks for your continued prayers.

Surgery should take 4 to 5 hours. Will keep you updated.

Cordially in Christ,

John

Date: Sun, 27 Jun 2004 (4th post) 19:54:14 -0700

Subject: Anneke update: Thanksgiving

Dear brothers and sisters,

I just spoke with Sylvia. The doctors are very pleased with how the

surgery is going. The heart is in, and it is beating on its own, they have

been able to (or are in the process of) closing. The new heart is a bit

larger than Anneke's but they were able to fit it in. They expect

Anneke to be out of surgery in a half hour or so. It will be a couple of

hours before she returns to the third floor, where she will be in an

isolation room. After she is settled in and stable, Mike and Rachel will

get in to see her. A number of Mike's relatives have been waiting with

the family today. So, please give thanks with us--and continue to pray.

Thank you for your faithful intercessions and encouragement.

Cordially in Christ,

John

Date: Sun, 27 Jun 2004 (5th post) 21:06:18 -0700

Subject: Anneke Update: Good News

Dear brothers and sisters,

Sylvia just called. Anneke is back up on the third floor in an isolation

room (standard post-op for this surgery). The doctor spoke with Mike

and Rachel. He was delighted with how the surgery went. The heart

was a perfect match and a perfect fit. Anneke came through the

surgery very well. (He also had some nice things to say about Mike

and Rachel and how they have been holding up under all this.)

Anneke is on a respirator, but they hope to start weaning her off during

the night, and have her off of it tomorrow some time.

Mike and Rachel will be in to see her once she is settled in tonight.

The doctor said she was starting to wake up, but they gave her some

more medicine, since they want to keep her sedated while she is

intubated.

Again, thank you for praying. The Lord is good indeed. And he has

given peace.

Cordially in Christ,

John

Date: Mon, 28 Jun 2004 06:12:26 -0700

Subject: Anneke Update: Rachel's Journal for the Day

Dear family and friends,

A number of you are checking Mike and Rachel's journal (link below),

but for those who have not seen it, following is what Rachel posted late

Sunday night (I can't add a thing):

<<Monday, June 28, 2004 0:36 AM CDT

How do I even start? As most of you know, today was THE day. After

thinking that Anneke might not even need a new heart, she got one. All

along we prayed so fervently that if it was God's will that she get a

heart he had this weekend to send one or else we would go with the

Glenn if the cath lab went well. Well, He decided to send one on the

last day possible and we rejoice that he is faithful and hears our

prayers!

We were so torn as to what to do about the whole situation, and He

made it easier on us. So now I am sure you want all the details on how

the day started and ended.

We got to bed pretty late last night, so this morning when our cell

phone rang we thought it was just the alarm we set on it for church. I

thought that the night went awfully fast and Mike was still in a sleepy

stupor that he tried to shut it off! Thank goodness that he opened his

eyes and saw that it was the hospital calling! He answered and it was

our attending asking if anybody had called us. No, no one had, Mike

said. So the doc says we have a heart and that we might want to come

in to see her before surgery!

The call came at 7:40am and we were at her bedside at 8:15. It was a

long morning with lots of blood drawn for labs to make sure that she

was ready to go through such a major surgery. People kept coming

and going, asking us questions, getting us to sign papers. The morning

dragged on and the afternoon didn't get any better! It was a good

morning though with lots of play time and cuddling. Anneke was in

such a good mood with lots of smiles to all the people who paraded

past her bed.

We were lucky to have a primary last night to start the ball rolling and

we had another primary who came in to work when she heard the

news. (THANKS Tasha and Sharon!)

So we gave our last hugs and kisses around 12:45 and then we went

down to the OR to see her off. We were sooooo nervous but knew that

this was meant to be.

When we came back up to the NICU to gather a few things of

Anneke's we were greeted by my cousin and her husband (Shane and

Debbie). I had left a message on there phone and as soon as they got

it they jetted our way to spend the day with us. We were so happy to

see them and grateful that they came. And about half an hour later we

called Mom and Gideon to come and they brought Brad with them (our

bro-in- law). He wanted to spend the day with us too, so he drove from

Bellflower (Kristin, we missed you!!!). And as soon as we saw Brad he

told us that Uncle John and Aunt Meridell (Mike's aunt and uncle from

Phoenix) were making the long drive to be with us as well!

So we were surrounded by ALL of these loved ones who helped make

the day go by so much faster then it would have been if it was just Mike

and me. (THANKS to all of you, it meant SO much!)

So we sat and waiting from about 1:30 to 8:30. We managed to play

some cards, chat, and eat (or try) KFC. Sharon came periodically with

reports about what was going on throughout the surgery, and each

time came with news that things were going very well.

Dr. Razzouk performed the surgery, he's an outstanding doctor and we

wouldn't have wanted anyone else doing it. He came back early from

Hawaii to do it, for which we are very grateful for! He came to talk to us

after the surgery and I gave him the biggest hug:). He told us that the

surgery couldn't have gone any better and that the heart was THE

perfect heart for Anneke, a perfect fit.

We were allowed to see her for a very short visit in the isolation room.

She's SUCH a fighter and is trying to stir and open her eyes. They

have to continually give her morphine and another sedative to keep her

under because she is doing an amazing job of fighting it off. She needs

it to keep her comfortable more than anything, and I'm sure it helps to

keep her from fighting the ventilator too.

They are weaning her off the vent now. Her sats are at 99% when we

saw her. When she came back from the OR the vent was at 100%

oxygen and now they've lowered it to 45%. They hope to take her off

the vent completely by tomorrow. We had been told that they usually

try to do that within a few days, so this is good news!

She is very puffy and swollen, but no more so than after her first

surgery in Portland. She looks good all things considered and is PINK!

Pink, not gray, white, or blue. But rosy like a normal baby! And her feet

feel hot to touch, but we were so used to cold feet it's weird to feel

what's suppossed to be normal.

We had hoped to spend more time with her tonight, but we were

strongly advised to go home and sleep. She is very sensitive to sound,

the nurses are tip-toeing around and whispering. Her blood pressure is

a little high and that's usually a sign of pain. They aren't giving her any

BP drugs though which is good.

I think I've covered all the highlights of the day. Needless to say it was

one of the most scary, amazing, and nerve-wracking days of our lives.

We feel such relief and happiness. There is a lot of stuff that Anneke

has to go through still but the worst if over (we pray). Thank you for the

prayers and e-mails!

Our Lord is one of grace and mercy.....>>

Cordially in Christ,

John

- + - + - + - + - +

Also check out Mike and Rachel's on-line journal:

http://www.caringbridge.org/or/anneke/ .

Date: Tue, 29 Jun 2004 10:02:59 -0700

Subject: Anneke update: Doing well

Dear friends and family,

Rachel posted late last night (see below).

Thanks for praying!

Cordially,

John

-----

Tuesday, June 29, 2004 2:23 AM CDT

Anneke is the strongest little girl I've ever known. She is such a fighter.

Makes her Mama proud:).

This morning she got extubated, 14 hours after surgery. They did an

echocardiogram too, and Dr. Kuhn (cardiologist) told us that things

look good. Her recovery is amazing so far, but we know that this week

will be very critical. A heart nurse told us that 90% of the babies go into

rejection the first week. So they are monitoring her very carefully.

Please pray that she'll be in the 10%!!!

They've also had to watch her closely because she is bound and

determined to pull her tubes out. The line that goes into her neck is her

favorite to go for and she's made a mess of it once already.

There are 3 nurses that start out caring for the heart babies, and then

they work their way down to one after a few days. Anneke has two, and

one is pretty bored:). She's on four drips (varying meds including

cyclosporine, a common immunosuppresion drug) and isn't getting any

food yet. Dr. Razzouk mentioned feeding her this evening already, but

it was decided to wait until tomorrow.

It amazes us that everything happens SO fast. They don't mess

around, tubes come out, normal life happens as quickly as they can

make it happen withouth harming Anneke. We've been in the hospital

environment 4 months, but the whole heart room is a completely

different experience. We have to be so careful. We scrub in when we

get to the NICU in the regular scrub room and then once we get back

to the transplant room we have to scrub in again...six minutes! And we

get to wear pretty yellow gowns with long sleeves that are disposable.

The nice thing is that it's a quiet room. There aren't 7 other babies in

there with all of their monitors beeping, etc. What a relief to have some

peace!

They gave us a manuel this afternoon to start studying and I have it

finished already. I will probably memorize it word for word by the time

we leave. And they will question us with scenarios, etc, until we know

everything inside and out. I knew that having a tranplant baby was

going to be a lot of work, every second we have with her is such a gift

from God. But it's honestly going to be a lot of work, and it's

frightening. Please pray that the training we go through is clear and

that our minds retain it for any future needs. Also that we can give her

the care that she needs in the best way possible.

Anneke opened her eyes for us this evening. She couldn't take her

eyes off of her Daddy. No smiles tonight but her beautiful eyes were

clear, none of that drug-induced glaze. She's still really puffy, but it's

going down a lot and she's starting to look more like herself.

Tomorrow they are planning to remove her chest tubes. They are there

to drain excess blood and fluid from around the heart. Tonight the fluid

was only pink tinged with minimal leakage.

I could go on and on about what's happened and what's to come, but I

better leave it at this for now. We are still a little "shell shocked" from

the whole experience. Last night it hit me hard that somewhere there is

another mommy who gave my baby her baby's heart. It became very

real to me, more so now that it's all done and final. My heart aches for

her and I pray that she can sleep at night knowing that she has given

the best gift.....life.

----

Date: Fri, 2 Jul 2004 13:41:17 -0700

Subject: Anneke update: progress continuing

Dear family and friends,

Anneke continues to do well. No indications at this point of her body

attempting to reject the heart, though those are anticipated, and Mike

and Rachel will be spending a lot of time in the hospital for the next

week or so, learning how to care for Anneke and what symptoms to

look for.

Rachel wrote in her Anneke journal last night (URL below):

<<Nothing too new today for Anneke. She is so pink that she looks hot

all the time to us:). The swelling in her body is basically all gone and

she looks like herself now, as you can see in the pictures.

She isn't eating well, so it looks like she will come home with a gavage

tube in her nose. We will be taught how to put it in. She hates it and will

pull it out the second she can get her little finger wrapped around it.

We get more papers to study each day, it is easy to get overwhelmed.

Thankfully a lot of it is common sense with learning signs of rejection

and infection as well as learning the drugs, usage and effects. I have to

say it's fun to "study" again and put my brain to use!>>

Depending on how things go, Anneke could be out of the hospital in

just under two weeks after her surgery, which was last Sunday.

However, she will need to spend the next four to six months with Mike

and Rachel virtually next door to the hospital, coming in for frequent

checkups, and with the hospital available in case of a crisis. The

frequency of the checkups decreases over their stay in Loma Linda.

We're thankful that Gideon is doing well.

Again, thanks for your faithful prayers.

Cordially in Christ,

John

Date: Tue, 6 Jul 2004 21:37:59 -0700

Subject: Anneke Update: Newspaper follow-up article

Dear friends,

Back in May I mentioned that the Newberg Graphic, our local paper,

had done an article on Anneke. Tomorrow's issue has a very good

follow-up article. I have it linked from the Anneke Update page (URL

below), if you're interested in reading it. The reporter is an intern at the

Graphic.

Anneke is doing well--apart from eating. She made it through the first

week without trying to reject the heart. However, she is not interested

in feeding. She may be discharged with her feeding tube. Mike and

Rachel would appreciate your prayers that she will learn. They will be

busy the rest of the week learning to care for Anneke, before taking

her home. (Home to the house 1/2 mile from the hospital in Loma

Linda, that is.) Then it's a four to six month wait while Anneke's

medications get fine tuned, etc., and the hospital is available if

problems arise.

Once again, thank you for praying. God is indeed good.

Cordially in Christ,

John

Date: Thu, 8 Jul 2004 07:35:09 -0700

Subject: Anneke update: Rooming in

Dear friends,

Today Mike and Rachel are spending the entire day with Anneke,

taking care of her needs under the supervision of the nursing staff.

This in preparation for her being sent home with them (to the house in

Loma Linda where they are staying).

Rachel wrote in her on-line journal last night:

<<Today we got to see something very unusual, our child's old heart.

Our transplant coordinators took us down to pathology where we got to

see her little heart. It wasn't what I expected at all. I'm not quite sure

what I had invisioned, but what I saw was not it! It was much larger

than what we had thought it would be, and the pathologist was pretty

intrigued with Anneke's heart. One thing was that her coronary artery

was located between her pulmonary artery and aorta. It's a common

thing they see when a healthy athlete drops dead during activity. It's a

good thing she got a new heart because we probably never would have

known that until it was too late. God knows what he's doing!

He also confirmed that there was absolutely no left ventricle. An odd

thing to see, especially when we compared Anneke's heart to another

normal heart.>> For those of you who may be interested, Rachel has

pictures of the old heart on her journal site. [pictures also linked from here]

Thank you for praying.

Cordially in Christ,

John

Date: Wed, 14 Jul 2004 18:52:03 -0700

Subject: Anneke update: Discharged!

Dear family and friends,

As I type this, Mike and Rachel have loaded Anneke into their vehicle,

and Sylvia and Gideon are getting into theirs--all to head the 1/2 mile

from the hospital to the house where Mike and Rachel are living! Give

thanks! Tonight will be the first time that the family will have all four

under the same roof.

Anneke goes in tomorrow to the heart clinic, but she has been

discharged.

Thanks for your prayers and support!

Cordially in Christ,

John

Date: Fri, 16 Jul 2004 22:58:30 -0700

Subject: Anneke update: Caring for Anneke at home

Dear family and friends,

Mike and Rachel are busy taking care of Anneke. You might continue

to pray for strength (and sleep!) for them. Medicines have to be given

at precise times. (One medication at midnight, another at 1:30 a.m.,

feeding at 2:00 a.m., another feeding at 5 or 6--and so it goes.) Mike

and Rachel are taking her temperature and blood pressure, and are

listening to her heart at least twice a day. Getting oral medications into

an almost five month old is challenging also--it sometimes takes both

of them to do it.

Continue to give thanks that Anneke is doing well. They are delighted

to have her home.

Cordially in Christ,

John

Date: Fri, 30 Jul 2004 22:35:00 -0700

Subject: Anneke update: Doing well

Dear family and friends,

Anneke continues to do well. Rachel wrote about the visit to the clinic

on Thursday as follows:

<< We met with our favorite cardiologist, Dr Chinoock today. We really

like all of the cardiologists here, but he cracks us up. Very personable

and he interviewed at OHSU back in the 1970s, so we give him credit for

wanting to be a NWer:). He’s the director of cardiology too, so we know

he’s completely competent to care for our princess:).

I asked him a question that I’ve been wanting to ask for forever. I

asked if everything continues to go well, if we would be able to go

home by Thanksgiving. He replied that we could shoot for the end of

October! Please pray that this will be a reality when the time comes. To

be here for only three more months would be wonderful! 90 days!!! He knows

Dr. King, our Portland cardiologist, and he’s very comfortable sending us

off to be in his care.

The other good news is that a bunch of her meds have been altered.

Her Furosemide (diuretic) has been cut in half (it’s been cut in half

twice now) and we only give it once a day! Her Captopril (blood pressure)

has been cut from 7 ml’s to 3 ml’s three times a day, that’s huge! And her

Imuran (one of her immunosuppresion meds) is on hold completely because

her white blood cell count is low. That’s good and bad. I guess her white

count is 3.75 and the lowest they want it to go is 4.00. So she’s off of

the med until they can get her blood checked again on Monday. But they

want us to be really, really careful about who comes into contact with her

for the next little bit because she is sooooo susceptible to getting an

infection now. Hopefully being off the med will raise her count a little

so she won’t get sick, yet stay low enough that she will be able to stay

on a super low dose of the med. Please pray! It’s walking a fine line, but

they really know what they are doing too.

They are happy with how she is doing, so now we only have to go to

clinic once a week, but still get ECHOs twice a week. It’s another big

step, and it feels really good! Granted it makes me a little nervous

because we have more time between doctor visits, so we have to be all that

more vigilant in watching for rejection or infection in Anneke.

It’s an amazing feeling, knowing that Anneke has a new heart and we

are in a phase that we only dreamed about just a few short weeks ago.

Sometimes, when we aren’t gavaging her feedings, giving her meds, or

checking vitals, we forget that she’s gone through such a major surgery.

We look at her as such a normal baby, and we are amazed at how well she is

doing. Then we have to remember that we have to be careful, yet continue

to treat her like a "regular" baby. It’s a good feeling, but weird too. I

think it’s hard to put into words, so I’ll just end here...>>

Thank you for your faithful prayers, concern, and support. God is

good!

Cordially in Christ,

John

Date: Tue, 10 Aug 2004 22:42:58 -0700

Subject: Anneke update: feeding

Dear family and friends,

There has not been a great deal of change in Anneke's situation.

Rachel reported on the CaringBridge journal yesterday:

<<Anneke still won't eat. It seems that we've regressed, and she's

really averse to sucking much of anything. We have good days now

and then, but they are definitely not the norm. Our appointment with

the GI doc isn't until the 27th, and we had hoped that by then she

would at least be taking half of her feedings and eating more solids. I

think the PEG will have to go in, there will be no avoiding it.>>

Also, she wrote last Saturday:

<<I forgot to mention something the last time I wrote. It's a major thing

too, so I can't believe I forgot to write about it! Mike talked to his boss

and he for sure is allowed to stay with us and have a job when he gets

back! It's something I was nervous about, Mike having to go back. If

that were to happen he'd have to take Gideon with him b/c I can't take

him to clinic and then we'd have to deal with a split family fot at least

another two months. Plus, being here alone would really drive me

looney!

However, it's vital that we have insurance so we were ready to split if

we needed too. But what an answer to prayer! It's a wonderful thing,

that Mike is able to be so involved in our daughter's care. I think it's

important that he knows her so well. They've established such a good

relationship and she adores him. It can't get better for two young kids

to have there parents there each waking moment.....ClubSport

rocks:)!>>

So give thanks with us. I leave tomorrow (Wednesday) for Loma

Linda. After a quick trip to Dordt Sylvia and I will be driving back up to

Oregon. I'll be away from this computer for a couple of weeks, so will

not be able to send updates. By the way, last Friday I stopped in briefly

at the Pediatric Intensive Care Unit at Legacy Emanuel Hospital in

Portland were Anneke was born, had her first surgery, and was lovingly

cared for until she traveled to Loma Linda and started waiting for her

heat. Neat people, and they had heard that Anneke had her heart.

Thanks for your faithful prayers.

Cordially in Christ,

John

Date: Wed, 1 Sep 2004 22:06:58 -0700

Subject: Anneke Update -- feeding tube

Dear family and friends,

Thanks for your faithful prayers. We're back from vacation. I flew

down to California, and then drove back with Sylvia, who had spent the

better part of the summer in Loma Linda helping with grandchildren.

We had a good trip. For some more current pictures go to

http://tinyurl.com/243g3 and then click on the "Anneke Picture page"

and scroll to the bottom. Mike, Rachel, Gideon, and Anneke are

together as a family of four. They have been told to expect to be able

to return to Oregon in late October--something they look forward to

very much.

Anneke, not unexpectedly, has not been doing much eating (that's true

of many babies who have had heart problems). She is healthy

otherwise. Most of her food has been via the corpac, a tube through

the nose into the stomach (which she often pulls out). Rachel reports

that Anneke will be undergoing surgery tomorrow (Thursday, Sept. 2)

to insert a feeding tube through the abdominal wall. This will be easier

all the way around, has less danger of infection, and will be the route

for nutrition until she decides that food is for eating.

Rachel writes in her journal:

<<Wednesday, September 1, 2004 4:07 PM CDT

Okay, we FINALLY know what's going on about the G-tube procedure!

The GI office had to get clearance from our insurance, and they

couldn't get a hold of our transplant case manager. Go figure, we can't

either! But that's a whole other story, and I really don't want to go 

into that now.

So, Anneke gets rid of her corpak forever at 8:00 am tomorrow

(Thursday). Gideon can't be there, so we will have to work out a

system for that. We aren't sure if we have to spend the night at the

hospital Thursday night or not. After the procedure they will admit her

as a patient, but we don't know yet how long they plan on keeping her.

They will teach us how to use the tube and make sure Anneke is ok