Baby Charlotte

Is still in the NICU. Today is day 11. She is now off all breathing assistance, which is fantastic! However, she still has high bilirubin levels that have not budged for the past 6 days. Some initial issues with her digesting her food also set her back. Although resolved, she is still getting the majority of her food via NG tube (tube that runs from her nose to her belly), although she is starting to nurse a little, and take about 1 feeding per day via the haberman feeder (similar to a bottle). Her feedings are being increased every day, as she is still loosing weight. Mom is pumping for her, but is only providing about 1/2 of the breastmilk that she needs per day, unfortunately. It's very hard to bring in a full supply of milk via pump only.

Praying each day that she will be home soon.

New baby sister...

Charlotte Jean was born via emergency c-section on December 17th at 5:08pm, 5 weeks early due to a placental abruption. Charlotte is in NICU, but is off the ventilator and on CPAP for breathing assistance. Momma required multiple blood transfusions but is now feeling much better, although hemoglobin is still quite low.

I had had a bad fall during a snowstorm onto my belly the week prior. They admitted me to labor and delivery for 24 hrs and monitored me - all looked well. Had increasing pain and small amount of spotting on an off for the next week. Dr's office sent me back to L&D to be monitored again. 24 hrs of monitoring looked great, but pain still present. Dr's decided to do an u/s, although placental abruptions are "rarely" picked up in an u/s. By the time they wheeled me back from u/s to my room, there were two nurses waiting to prep me for an emergency c-section. Radiologist had already phoned and talked to my ob about what they had seen. I barely had a minute to get a call off to Wood to tell him to get to the hospital pronto - with or without him, they were going to deliver the baby. Dr told me I could have an epidural, but Anethesiologist said no way, too risky with the placenta abrupting, and I'd have to have a general. There were 4 people in my room, all simultaneously prepping me for surgery. Wood showed up at the last minute, and prayed with me. Within 15 minutes, I was in the OR, was put under. Woke up in recovery, baby had went straight to NICU.

I had lost a lot of blood, and my hemoglobin and platelets had fallen in the week since the fall anyways. Blood was drawn and it was decided that I needed multiple blood transfusions the next day. Until I got them, I could barely sit up!

Charlotte was immediately given respiratory assistance and put on a CPAP. That ceased to be enough, and she was put on a ventilator. She inhaled bloody fluid from the abruption and has pneumonia. Today, she was put back onto the CPAP, and is being treated for the pneumonia.

By the grace of God, all are doing well. Will post more and pics soon.

Halloween pics of the girls

Big sister took them to a Halloween party at the library today. A good time was had by all!

Pic of the dynamic duo.....

Having posted pics in a long while of the dynamic duo. Miss A said this past weekend that she hopes the new baby will be chocolate, like her.

21 weeks pregnant...

Had my follow up visit with the perinatologist/maternal fetal medicine specialist. He did a REALLY long u/s looking hard for soft and hard markers of chromosomal abnormalities, along with any physical defects. Nothing, zero, zip, zilch, nada. While it doesn't mean that the baby doesn't have any chromosomal defects, it certainly lessens our chances. And in any case, it means that baby is nice and healthy! Baby weighs a whopping 12 oz, about the same as a bottle of pop. Oh, and both u/s seemed to indicate that it is a baby girl! Wood was right, I was wrong. He said to go with the trend, I really felt it was a baby boy! Asrat and Grace have gotten over their momentary dissapointment over wanting a boy and are quite excited to be welcoming the 4th girl to our family. We will have 4 girls and 1 boy, ranging in age from almost 23 to newborn!

Physically, this pregancy is hard on me - I'm not a spring chicken anymore. I've developed SPD, so walking, standing and doing stairs is painful. Working full time really tires me out. I really want to work right up until the very end, so that I can take as much time off as possible WITH the baby after she is born.

18+ weeks pregnant.....

Had my 18-20 weeks anatomy u/s today. Hopefully, I can get results from the radiologist by tomorrow. To my (untrained) eyes, things looked great. Admittedly, the last pic (4D) is more than a bit alien looking. Tech said they come out much better after 30 weeks, and I can come back then and they'll do a few for me no charge.

I've gained about 8lbs or so (baby weighs a whopping 9 oz, so where's the rest of the 7.5 lbs??)

I've started pulling the babies room together. G&A, although they technically have separate rooms now, only sleep in the same room. So I'm taking over A's room for the baby. We're doing a Dr. Seuss theme (works for boy or girl),with Horton as the main theme "A person's a person, no matter how small".

G&A were in a mall fashion show last night representing my workplace. They had fun and looked oh so cute!

15 weeks pregnant...

Feeling much better these days. Only gained 3.5 lbs, but am huge already. Have my big anatomy ultrasound on August 20th. All I want to know is that everything is ok with the baby, and that the placenta previa is at least starting to move up!

I'm starting to get reluctant to share the news about my pregnancy with those who don't know yet, as most folks are utterly shocked by it, and hardly congratulatory. I don't know if it's because it's our 5th child, or that we are "older". Either way, I think people should keep their comments to themselves. If one more person tells me how old I will be when the baby graduates high school I think I will scream. HOw old will I be in 18 years if I wasn't having a baby???? Thanks for doing the math for me, really, that was sooo helpful.

The other one that gets me is the "better you than me" comment. Yup, for the baby's sake, I'm glad it's me and not you either, since you obviously are so turned off by the idea of adding another child to your family.....

About my dad.....

I wrote some time ago about the brain infection my dad had late last winter, triggered by his powerful Remicade arthritis drug, which suppressed the immune system. My dad, still never fully recovered from his lengthy illness, and compounded by worries that as a GM retiree that he would lose his pension/medical benefits with the recent GM bankruptcy and would go broke with medical bills, decided to take his own life.

It is very difficult to think of someone you love completely losing hope and feeling that this is the only option left. It is alarming to feel that perhaps he was not even thinking clearly, as his illness caused erratic behavior.

Funeral arrangements have not yet been made, as his body has not yet been released by the Medical examiner due to the nature of his death. Just home yesterday from Milwaukee for G's appts at Children's hospital, we are headed downstate this afternoon.

My father has died...

I received the news late last night that my father has died. Will post more later.

unsettling news...

Got a call from the dr's office this morning, with my u/s results. I wasn't worried at all - after all, Wood and I saw little woodlet moving and squirming all over the place. Baby is perfectly fine :) However, it seems I have a complete placenta previa. This is when the placenta decides to make it's home smack dab over the cervix. I'm now on some restrictions (no lifting, exercise, etc) and I have a referral for July 2nd for the perinatologist who visits our remote and rather rural location 1x per month.

There is still time for it to "migrate" into a higher position. While the placenta doesn't move, per se, as the uterus stretches, the possibility exisits for it to migrate to a higher position as time goes on. If not, it means a definite C-section several weeks before term. It also carries a higher risk of preterm labor (I already have a history of this), hemmorrage, growth restriction for the baby.

What causes placenta previa? Oh, let's see: Age over 35 - yup. 3 or more previous pregnancies - yup.

So I have a regular OB appt on June 25th, I see the perinatologist on July 2, and we got to Milwaukee on July 13th, for both G's checkup at Children's hospital in the am, and I'm having a Nuchal translucency scan in the pm (they don't do those up here at all - Wood and I just want to be prepared for all contingencies. Some trisomies are associated with heart and other defects, and if we were to find out something like that, we probably wouldn't deliver at the hospital here in the UP.)

Praying that the previa moves up and out of the way, or this could be a complicated pregnancy.

G and A are going to be big sisters.....

A work in progress…….a bit of geography for these hard to look at u/s photos –

Round circle on the right hand side is the yolk sack. Directly under that is the baby’s head, which is about ½ of the body at this point.

If you look closely, you can see the little arms and legs – baby is laying on his/her left side facing forward. Right arm is just below the head,

about halfway down the body to the left. Bumps at the bottom are the legs.

We could see the baby squirming around today, reaching it’s arms towards it’s head. Kinda cool! Heartbeat was 167 beats per minute.

The dynamic due want a boy only.....we'll see!

Morning sickness (actually all day sickness) is starting to subside. However, I'm asleep by 8 or 9pm every night now!

David is home

I received this email last night from the Gockenbachs

"At 8:44pm tonight, David entered eternal life.. He's home, safe and secure in the Father's arms. We miss him already, but are so glad that his suffereing is over. He's been thru more in his 11 yrs than most of us will ever go thru. Yet how full of joy he was and such a blessing to so many. His mission is accomplished, his crown awaits.

Thank you for staying with us on this journey."

Sad news....

I've posted several times about the only other family near us (about 100 miles away) who adopted siblings from Ethiopia shortly after we brought A home. Their son David, was dx'd with leukemia not long after arriving home with his new family. He relapsed while still receiving chemo, and underwent a stem cell transplant late last year. He spent 100 days in the hospital at U of M and it was grueling, to say the least. David, now age 11, has relapsed again. There is very little that can be done medically at this point - he might have a few months. His family is preparing for the unthinkable. David is a wonderful faith filled little boy who has endured more than any child should.

Please keep David and his entire family in your thoughts and prayers.

Here is a link to the family's caringbridge pages http://www.caringbridge.org/visit/davidgockenbach

tests today

Today I go in for a screening ultrasound (screen for ovarian cancer) and breast MRI, both due to BRCA2 and family history issues (dad died of breast cancer, dx'd at age 45.) I'm actually overdue for the MRI - should have had it in late December, but the dr's office messed that up. I had a mammogram and ultrasound last week, which turned up many what are hopefully cysts - which is unusual for me.

The problem with the MRI is that they usually always find something (or several somethings) that needs to be biopsied. It's a high stress time for a few weeks until I get the biopsy scheduled and all test results back.

The ultrasound to screen for ovarian cancer is just an attempt. There is no good way to screen for this type of cancer. They do this because there it's felt this is better than nothing.

Risk of getting premenopausal (agressive) breast cancer before age 60 = 80%. Risk of OV cancer = 60%. I'll take a better set of genes, thank you.

As for spring --- it's currently 7 degrees outside. Bah, humbug!

Still here....

wow, a long time since an update. Lots going on over the past few months. But spring is finally arriving to the land of ice and snow ... finally.

It's been in the upper 40's to low 50's, which feels so WARM to us. That's about 60+ degrees higher than it was 4-6 weeks ago! I'm so tired of being cold! This winter has been long and harsh. I think we've had about 300 inches of snow so far.

We are down to our last foot or so of snow in our front yard, and the thick ice on our driveway is finally melted down - there is concrete under there! Just a week and a half ago, we had 4+ feet of snow still! The girls have been riding their bikes over the snow and ice on the driveway for the past few days. And forget about them wearing coats - once it hit mid 40's, they complained about being "hot"!

The girls gave up the computer for Lent, and Wood and I gave up TV. I've read 3 books since the start of Lent, and we don't miss TV at all! Not even Wood, who is a news junkie. Actually, he gave up tv for Lent, but I've been following along, as how can I watch TV if he can't? I'm attending daily Mass for Lent, after dropping the girls off at school before I go to work.

Temps are due to drop back down to the 20's, but it's been wonderful while it lasted. We always get at least 1 last substantial snow in April. Last year I think we got about 36" over 4 days, but at least you know that spring is just around the corner at that point. The kids are going stir crazy, as it started snowing very early this year, and we've been housebound a long time. Ever seen the shining????

Update on dad

The assisted living facility has refused to take Dad based on his behavioral problems. They feel like he could be a danger to their other residents. The nursing homes that our case manager faxed info to yesterday would be very expensive since he doesn't have Medicare and apparently has no long-term care coverage under his BCBS policy. She is working with the social worker we met with, to look at adult foster care or a group home. The doctors are continuing to write orders for his discharge, but we are being told not to worry about that because he will not leave until they have a place for him. We are hoping that the paperwork we currently have is enough to keep him in the facility until the court hearing.

I also spoke with the Guardian ad Liteum that was appointed. His He will be visiting Dad either tomorrow or the next day (he has to wait on receiving the paperwork). Apparently, the hospital contacting him. They want to move the hearing date up, but he feels that given the distance the family is apart and everyone's jobs that the original hearing date would be best for us.

Difficult week

We got back in the wee early hours this morning from an emergency trip downstate about my dad.

He has not yet been diagnosed - the type and origin of his brain infection is still unknown. His brain biopsy from Christmas eve has made the rounds from his regional Hospital, to U of M pathology, and is currently still at the University of Washington for specialized testing. His high volume lumbar puncture revealed massive amounts of white blood cells indicating infection, but not what type of infection. Cultures are being run for fungal infections, which take 6-8 weeks, believe it or not.

My dad was released from U of M about 2 weeks ago, when his mental confusion and erratic behavior caused by the brain infection seemed to subside, as they awaited the results of these specialized tests. He was very weak and could hardly walk so he went to stay with his brother temporarily- just a month ago he was a strong and vibrant active 62 year old who ran his own construction business.

After he recovered his physical strength a bit, he refused to stay at his brothers and returned home where he lives alone. He did ok for a few days with my uncle and his wife checking up on him, but his behavior started falling apart again. No one could reach him - he had apparently thrown away both his cell phone and his home phone because "they didn't work". He put his mattresses from his bed out in front of his house, in the snow. He broke the TV's in his house because he couldn't get the remotes to work. He bundled up his trash, and threw it down the basement stairs. He went to a car dealership and purchased a new car (even though he already has a newer car). It was a stick shift, and he would take out the car and "forget" how to drive it or where he put it. He walked home 2 miles in the freezing cold without a jacket because he couldn't remember how to unlock the car.

Last Sat night, his neighbors (with whom his is on very good terms) called the police about his increasingly bizarre behavior. The police took him to a psychiatric hospital who refused to admit him because he doesn't meet any criteria of mental illness and his issues result from a medical condition.

On Sunday, my dad was trying to get into his new car which was parked in the driveway. When he couldn't immediatly open the door (it was locked) he began pounding on the door with a mallet. When that failed to produce the desired results, he got into his other car, which was in his garage, and repeatedly rammed the new car with his other vehicle, in an attempt to move it out of the driveway. The neighbors called the police again. The police took him to the regional medical center and petitioned to have him admitted against his will. He was.

We drove down, as well as 2 of my three sisters, one from Mobile Al, and the other from Nashville TN. We met with the hospital social worker who explained that my dad needed an immediate guardian appointed to safeguard his physical and financial well being until he could hopefully be treated for the brain infection after the cause is diagnosed. The hospital has provided documentation from it's physicians that my dad's executive funtion was significantly impaired and he was incapable of making decisions. We went as a group, us three sisters, Wood, my uncle and his wife to probate court that same day to petition for emergency guardianship for my dad.

The court, in its infinite wisdom, refused to grant emergency guardianship. Because he isn't in immediate need of a life saving medical procedure, like a ventilator or something. The fact that he can't be released from the hospital, no medical decisions can be made, and none of his bills have been paid since early december is apparently no concern to them. They assigned a court date of March 2nd to hear the case. Yes, March 2nd, over a month from now. At which time they may, or may not, assign a guardian for my father. My dad will be "warehoused" in the hospital until then, as he cannot be released for his own and the safety of others. For an entire month. He is receiving no medical treatment, as no one can seem to decide how to treat him. The hospital, recognizing his current limited faculties will not allow him to check himself out AMA. We cannot move him into a skilled care facility, which would be more appropriate, because we don't have guardianship. We can't pay his bills. But the court deems this not an emergency.

Wood and I had to leave to return home to work. I'm the closest daughter, and I'm 8 hours away. The entire situation is completely unreal. I hadn't ever realized that someone completely capable, independent and competant could literally lose control of their mental capacity literally overnight, short of a huge brain trauma, like a car accident. This is not a slow decline, a part of the aging process - my dad is a relatively young, very active and healthy guy. I fear that if they don't begin SOME sort of treatment soon, the damage done could be permenent. I never imagined it would take this long to identify what he has and how to treat it. With his compromised immune system, a month in a germ filled hospital seems completely unacceptable if he is not receiving any treatment whatsoever. My dad is lucid and isn't "out of it", so he knows what is happening to a certain extent. He doesn't understand why he is in the hospital and seems defeated that he can't go home. He seems to me like he has given up the fight and given up. I cried a good deal of the way home - I feel completely powerless.

35 below zero....

This is our second day where wind chills have been this cold and schools have been closed. The entire week has been frigid. This winter has been brutal this year - the worst since we moved up here. We are about 60" above normal for snowfall this year. At this rate, we'll end up well over 300" for the winter season. It's getting to the point that is is very difficult to see around the corners at intersections - the snow is that high that you are not quite sure if traffic is really clear or not. Folks are having to dig their mailboxes out - the snow is high enough to cover them completely.

I am so sick of being cold. At work, I have only 2 heated mattress pads and 6 electric blankets left in stock for the season - they have just been flying off my shelves. However, we have plenty of shorts, capris and summer tops, just landed for spring. Guess the corporate buyers at our headquarters in Texas need to spend some quality time up here - we won't need shorts until late June at the earliest. In these tough economic times, who is going to spend money that is tight for clothing that you can't wear for a solid 5 months??? Meanwhile, all winter apparel is on deep, deep clearance, and my customers are snapping up great deals like infant/toddler separates for $1.18 each, kids winter coats for $8.98 and Women's sweaters for $5.99. I bought the girls about a dozen pair of jeans yesterday - they were $2.98 each, and cute tops that were $1.78 each. Those prices were BEFORE my employee discount. All of our clearance is an EXTRA 40% off the lowest marked price. I don't think you can shop at thrift shops for those prices. Deals abound - if you haven't been to the mall lately, it's definitely worth checking out to stock up for your family.

Now, the important stuff....

My dad is stable - no change and he hopefully will have the CT scan in the next day or so, followed by the repeat spinal tap. We continue to pray and have hope that the dr's can identify and resolve this crisis.

I have become a regular at daily Mass in the past few week, between my dad's health and my oldest daughter. I admit that I can't fathom the big picture at all at the moment. Paradoxically, there has been great peace and joy in my growing closer to Him and I have received some very unexpected graces.

"And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."

Home

We just got back to Marquette this evening. My dad got out of the hospital yesterday. It is believed that this significant brain infection is caused by a previous virus or some sort of exposure from the past - possibly even as far back as when he was stationed in Lemoore California (where I was born) back when he was in the Navy. The theory is that this unknown virus or whatever was inactive until his Rhumatoid arthritis IV treatments, Remicade, significantly supressed his immune system, causing it to become active and attack his nervous system/brain. They have sent his brain biopsy to Washington State university for some very specific tests. They need to to another spinal tap, so that the fluid can be sent to specialized labs across the country so that they can identify the organism. They have a few specific ones in mind, but they need to be sure, because the treatments for them have significant side effects and can even be fatal. He can't have the spinal tap until he fully recovers from the brain biopsy, as there is an accumulation of fluid in his brain, so they will wait about 2 weeks, if he doesn't get any worse in the meantime, and do the spinal tap then. He is still significantly ill, unfortunately. It was excruciating to have to leave to return home.

The specialists at U of M are top notch, and I can see where they get their reputation from - what an incredible place. If you have to be sick, that's the place to be. They are obviously used to seeing things that are VERY far from the ordinary.

I got to see my younger sister while we were down there. When I last saw her, G was only a baby. She's never met A at all. We all went out for Ethiopian food at a restaurant a few miles from the Hospital.