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Baby Katherine - Week 6

Our Third Arrow

We have another blessed addition to our family. This has been a very interesting, yet rewarding, experience for us. First, many know that we have struggled with infertility ever since our first born. After seven years since Brenna was born, God has blessed us yet again. Second, over the last couple of years, our family has been going through a transformation in our health philosophy. One of the outworkings of this transformation is the decision to have a homebirth. However, due to Ronette's high blood pressure, we had to go to the emergency room which led to Ronette giving birth via cesarean section. Furthermore, our daughter was born with a congenital heart defect. While this situation is still unfolding, we are already seen God working in so many ways. Quite often we don't see this until some time later. Our hope is that everyone who visits this page will see the providence of God in all things and glorify Him accordingly.

Saturday, October 23, 2004

Shortly after lunch Don answers the phone. It is Katherine's nurse letting him know that they decided it was necessary to run another venous line due to the incompatibility of some of her medication. Therefore, they were going to attempt a new femoral line in the area they were unable to save yesterday. This procedure will probably be done within the next few hours and they didn't want us walking into the hospital unprepared for this. Don tells her that we appreciate being notified.

Fortunately Don is now well enough to see Katherine for the first time in ten days. Jordan and Brenna are taken to their Grandpa Ron and Grandma Sharon's while Don and Ronette visit Katherine together.

We soon discover that they were unable to run the femoral line. There were two attempts but it would need feed through the vein. As a compromise the line was put into her left arm. While sufficient for providing her medication, it does not provide other benefits such as blood draws. Therefore, Katherine is being poked again to get blood gas readings.

There are two new issues that are being addressed today. First, Katherine is now having red blood appear in the fluid that gets suctioned up through her ventilator tube. Blood is also being detected in her stool. Since this is probably the result of her blood thinner medication this has been discontinued for now. Second, her blood sugar is measuring unusually low. One possible explanation for this is that Katherine might have an infection, which is corroborated by her high temperatures as of late. Therefore she is being given antibiotics and dextrose to compensate.

Katherine's ventilator setting has been increased again, which is a minor disappointment after being told yesterday that they would like to work toward getting her off of it. However, she has not been keeping her SAT levels very well. A new echocardiogram is being scheduled to see if this is a problem with flow through her ductus. In the meantime her PGE medication has also been increased to see if this will help. They also increased her sedative since she has been irritable as of late. We believe they have stopped the methadone, at least for now.

We are told that her creatinine level is now 1.5 and her BUN is at 122. This is not a significant change, but at least they are not rising.

Dr. Anas comes in to review Katherine's case with us. He informs us that he has talked with Dr. Bleiweis and repeats the goal that Katherine is in the best possible condition before surgery. However, Dr. Anas did indicate a belief that before too long a decision to perform the surgery will have to be made regardless of how ideal Katherine's overall health will be.

We are blessed to find out that Katherine's clot has been completely dissolved. Her foot looks completely normal now. The large hematoma on her right groin also looks significantly better. Katherine's NG tube has been moved so it goes directly into her intestine. Consequently, as of 11:00am they are now able to give her 4 CCs of breast milk each hour. This is a significant increase which we pray will continue. We are thankful for the goodness of God in both of these areas.

Both of our favorite nurses from the NICU dropped by for a visit. Additionally, Dr. Nugent meets Ronette for the first time. Everyone has been very nice and willing to communicate with us. In the midst of uncertainty, this is very encouraging and helpful.

Please continue to pray for Katherine's kidneys, oxygen levels, and blood flow.

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Katherine's new digs. She's no longer the big kid on the block. Being in a real crib finally makes her look like a normal sized baby. A new venous line was put into Katherine's left arm. Unfortunately her bleeding was caught underneath the adhesive so it looks worse than it actually is (or so we're told!) This is the main screen that displays Katherine's heart rate (in green), respiratory rate (in teal), and oxygen SATS (in lavender). Her last blood pressure reading is display in white.

Friday, October 22, 2004

Let's see...there's a bit to update today.

Today was our first day in the PICU. It is quite a change from the NICU. Most noticeable is the *noisy* environment. How any of those sick children get rest in that unit is a mystery. Katherine is in her own area in which a curtain can be drawn for privacy. A big advantage of this is that Ronette can pump her milk at Katherine's bedside instead of having to go to the "pumping room" back in the NICU. This means more uninterrupted visiting time with the little one.

Our nurse was great today and very good at relaying information. Ronette also met two of the PICU doctors: Dr. Nick Anas and Dr. James Cappon. Both have great bedside manner and gave very satisfactory reports on Katherine's condition. We have truly come to appreciate doctors and nurses that can communicate with us clearly and succinctly. This has definitely been our experience our first day in the PICU.

Dr. Cappon expressed his desire to see Katherine off of the ventilator. He is going to talk to Dr. Bleiweis about the expected time table leading up to surgery. If this is expected to be an extended time period, he is going to work at getting her off of mechanical ventilation. Of course, we would be thrilled with this direction.

As reported yesterday, they attempted to reposition the baby's femoral line. Unfortunately, it was too far out of position to save. Therefore, it was removed entirely. This poses a challenge as it eliminates a source for blood draws and the administration of medication.

In response to Katherine being weaned from sedation, she is now receiving Methadone. Ronette questions the nurse on this since she associates the treatment with drug addicts. The nurse explains that yes, indeed, Katherine's sedatives are addictive and she must receive this medication to protect her from withdrawal symptoms.

A member of the hematology staff stops by to talk with Ronette. She reports that Katherine's blood clot is fully dissolved. This is a direct answer to everyone's prayers and we are thankful! A hematological study has been run on the baby to determine if she has any genetic markers which predispose her to forming clots. She does have several of these markers, one of which is quite significant. This particular marker has to have come directly from Don or Ronette. Therefore, the doctor recommends that we both get tested to see which one of us also has this gene. The doctor also explains that Katherine has now been placed on Lovenox in place of heparin. Lovenox is administered through injection. Katherine greatly opposes this method of receiving medication, holding her breath and setting off her ventilation alarms when she receives her shot. We may have to continue these injections when she comes home; something we are not looking forward to!

Her kidney levels are the same as they have been the last few days. Her diuretics have been greatly decreased. As of now, she is no longer on the lasix drip or the bumex. She is only receiving doses of lasix every four hours. We pray that this does not result in further retained fluid.

Having to visit our baby in the hospital every day is stressful and exhausting. However, we are thankful for the superior level of care we are confident that we are receiving at CHOC. In addition to our ongoing prayer requests, we ask that you pray for our strength, physical, mental and spiritual, as we continue to walk this difficult path. (Webmaster's note: For those who look forward to pictures we apologize! The camera was left at home on accident.)

Thursday, October 21, 2004

Katherine had a bit of a rough day today. She seems very irritable. Every minor procedure sends her oxygen saturation levels into a tailspin. Katherine also cried, coughed and spit up many times. This is all difficult to do with a ventilator tube down her throat. We can't hear her cough or cry but her facial expressions make it obvious. Hopefully, this was just an isolated incident.

Katherine was awake quite a bit today during Ronette's visit. They have gone down on her sedation which encourages her to spend more time awake. Katherine's creatinine levels are down to 1.7. Ronette spoke with Dr. Bleiweis today. He explains that this number needs to be no higher than 1.0, and preferably lower, before he considers taking her to the operating room. Although, this number has been going down, it has been going down very slowly which leads us to believe that we are most likely still weeks away from surgery.

Dr. Bleiweis is also concerned with the clot that the baby developed and wants to get her hematological issues resolved before proceeding with her operation. Unfortunately, there was not a hematologist in the vicinity when Dr. Bleiweis was there.

Ronette was informed that the NICU is very full and they need Katherine's bed in order to care for more babies. Therefore she will be moved across the hall to the pediatric intensive care unit (PICU) after the 7:00pm shift change. This has always been intended as her final destination but she was not supposed to be transferred until after her surgery. One benefit is that there are nurses specifically specializing in cardiac care in that unit. One drawback is that no visitors under twelve are allowed. This means that Brenna will not see her sister for an indefinite amount of time.

It is the intent of the doctors to rerun Katherine's current femoral line. Dr. Ronald Bronicki in the PICU is expected to perform the procedure. This leads to some trepidation for us as the last attempt at such a line is what resulted in her current blood clot. Ronette asks about the risk of another clot. Dr. Cleary acknowledges that this is a risk but the line must be maintained as they need the central access. She currently receives a couple of her medications through this line.

Our specific prayer requests are as follows: That Katherine's creatinine levels would reach 1.0 or lower quickly. That her Blood Urea Nitrogen (BUN) (another kidney related number) would lower to 50 or less. Please also pray that she does not develop another blood clot when her femoral line is repositioned. We also pray that her transition from the NICU to the PICU would be a smooth one as we adjust to a different staff.

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A continued answer to prayer: her bruises are going away! Although her eyes aren't as focused as we've seen before, we are grateful that she stays awake long enough for a picture. Her foot just looks like a normal foot now.

Wednesday, October 20, 2004

Katherine continues to hold steady. Her kidney levels are even better today than yesterday. Let's pray that the trend continues. She is also being weaned a little from her lasix drip. Her feeds of breast milk are going well for now so she is still receiving them. Hopefully, you can see how much her foot has improved in our pictures.

We hope to see Dr. Bleiweis sometime tomorrow to get some perspective on when we might expect surgery.

Katherine was awake for much of Ronette's visit. She tried so hard to open her eyes wide but the sedation is so hard to overcome. She still loves to hold hands which is so endearing. We trust that you will continue to pray for our ongoing requests.

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Look how good those little "pinkies" are! If we didn't already know she had a problem we wouldn't think there was anything wrong with them. Katherine is still making progress with that bruise on her arm. Although she was awake for Ronette, she wouldn't keep her eyes open long enough to get a good shot.

Tuesday, October 19, 2004

Another good day, or at least as good as they get with a baby in the hospital. Katherine is still fairly stable. She has a nurse that we have not had before today. Ronette immediately feels at ease with her and finds her very approachable. This nurse tells Ronette that Dr. Cleary and the cardiologists were in to see Katherine this morning. They are pleased with her progress and think there might be a chance that her surgery will be soon. Of course, they quit giving us dates some time ago so we will continue to wait patiently.

Her kidney levels are continually improving. She started feeds of breast milk again today, three CC's every three hours. Katherine's nurse also tells Ronette that Katherine is being weaned a little from her current level of sedation. Hopefully, this will mean that she will spend more time awake when we visit. She was awake when mommy came to see her today, something that hasn't happened in a while. What a treat!

Please pray that her surgery would, indeed, take place soon. We are anxious to get it over with and begin the recovery process!

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Only a baby with their inborn flexibility could be comfortable sleeping like this. Katherine with her cute new blanket, a gift from our friends James and Michelle Pelkey. When she is on her tummy there aren't that many unique shots to take and we can't get a good shot of her toes and arm.

Monday, October 18, 2004

Another day in the NICU and nothing much has changed in the last several days. Katherine's vent settings were increased a bit today due to some questionable blood gas readings. They are now giving her bumex every 8 hours. Fortunately, she did not receive any additional sedation during the day shift today.

Two days ago, Katherine began throwing up. Therefore they placed a nasogastric (NG) tube in her. This tube goes in through her nose and down into her gut. There is some brown blood coming up from her stomach which they believe happened as a result of her heparin therapy. Because of the bleeding, her feeds of breast milk have been delayed once again. She really needs to be getting mommy's milk in order to stimulate her digestive system. The last thing we want is feeding problems post surgery.

Please pray that her feeds will continue again soon. Please also continue to pray for her kidneys and her fluid retention to decrease. She did lose 210 grams over the past few days. Pray that the trend continues as she will be weighed again tonight because she still has some to lose before she is considered ready for surgery. Praise God that we are seeing answers to everyone's prayers. As you can see, her foot looks much better. That seems indicative that they are having success in dissolving her blood clot. Her kidney levels are also returning to normal, albeit slowly. We thank you for your continued support!

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Still looking cute despite the tubing. Notice how well her skin heals after they move the sensor off of her chest. Her foot is actually looking a lot better. The big toe and the pinky is virtually clear and the middle toes are no longer solid red. Katherine's bruise is also looking much better than before. It is already turning yellow in some areas.

Sunday, October 17, 2004

It's hard to believe that our precious baby is one month old today. In some ways, this has been the longest month of our lives. In others, it has gone by very quickly. In both cases, we thank God for the gift of this blessing in our lives. Looking for the goodness of God, we don't have to go very far. We just look into the face of our sweet Katherine and God's grace upon us is abundantly evident.

Again, Ronette visits the hospital alone today and again Katherine is content to sleep through the entire visit. She stirs when she hears mommy's voice and holds hands with her, something she has been doing each day. Ronette cleans Katherine's eyes, mouth and neck. She is also treated to changing quite a messy diaper. Don really does need to get well as this chore has traditionally been his and Ronette doesn't want to encroach on his territory!

There was not much new to report on Katherine's condition. Her oxygen saturation was stable and her vent settings were the same as when Ronette left yesterday. Kristen (one of our favorite nurses) said that Katherine has received another dose of Bumex and that she has received additional Lasix over and above the drip that is constant. She also tells Ronette that the baby's kidney levels are ever so slightly better than the last reporting. Other than that, it's status quo today.

We can't tell you all how grateful we are for your prayers. We are overwhelmed by how many are concerned for our family's situation. We ask that you continue to pray for Katherine's complete healing. Specifically, our requests are the same as they have been for the last several days. Please pray also that Ronette is spared from catching what Don and Jordan have had. She does not want to miss a day of seeing her new daughter nor risk the danger of opening her incision more through the hard coughing they have gone through.

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Katherine is relaxing on her side. Notice that she has so many lines going into her main IV that they have to be color coded. Rainbow IVs, imagine that... We are still waiting for her foot to get all clear. So how does she keep from slipping? They must put teflon on her skin when we are not looking.