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Baby Katherine - Week 3

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 02, 2004

Even though we had been told that infants in the NICU will progress one day and digress on another, it is still difficult to see it happen. This is especially true when Katherine has been progressing for three days in a row. We discover that she was put on an oscillatory ventilator sometime this morning or late last night. Her carbon dioxide level has been too high. Apparently this machine helps lower this by forcing her to hyperventilate. Unfortunately, Katherine's nurse isn't familiar with us. Instead of getting responses that truly inform us they seem to be oriented toward "making us feel comforted" in that they are doing everything necessary. Therefore, we don't have a full understanding of what is really happening with our daughter.

We do know that she has been given a drug that paralyzes her. This is so she does not fight the new ventilator. While she is still on some sedation and pain medication, she cannot physically react to any pain so they have to rely on her heart rate and blood pressure readings. This is definitely not a comforting thought. Despite the infection she seemed to get yesterday, they were forced to add the line back into her head so she could receive additional medication. Katherine did lose a few more ounces of fluid and her kidneys are still considered to be working good. Unfortunately, however, they stopped feeding her milk again which means they had to throw out the milk they had already defrosted.

Because she is paralyzed, Katherine is just lying there immobile and unresponsive to our presence. While we can see the monitor that measures her carbon dioxide level, we don't have any real idea how serious her numbers are (we have been told 50 is the number they want, but her numbers were around 90 when we left her). We asked what would happen if the numbers continued to rise and the nurse suggested that the next stage would be to give her nitrous oxide gas. However, we don't know what level of carbon dioxide would require this shift in treatment.

This is leading us to a new challenge and prayer request. Whether or not this is a serious concern, Katherine obviously needs to get her carbon dioxide level stabilized so her care givers can return to feeding her, getting her off any ventilation assistance, and overall ready for surgery. Fortunately, Ronette's incision still looks good to Don.

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Katherine is hooked up to the oscillatory ventilator. A close up of Katherine with her foot print hanging on the sheet behind her. Another view of Katherine laying there under the control of the oscillatory ventilator.

Friday, October 01, 2004

Ronette's appointment with Dr. Jouvenat went better than expected. She was apprehensive about telling him that her incision has opened up a little on opposite side. Her fears heighten when the nurse said that Dr. Jouvenat might open her up more. Thankfully, Dr. Jouvenat was not overly concerned. He is also pleased that the larger incision is still showing signs of healing and closing. Don will continue to clean and pack the incision over the weekend. Ronette will see Dr. Jouvenat again on Monday.

Everyone's prayers and wishes are definitely being answered. Katherine lost almost one and a half pounds since yesterday! This might be hard to see in her first picture (see below), but she is noticeably thinner all around and especially in her legs. Much of her "rolls" have diminished. She still continues to have "problems" due to her high functioning kidneys, but these issues are expected and relatively easy to monitor and react to. In fact, we are told that they have had to put additional fluid in her to replace what she has been putting out.

Another praise is that she is no longer requiring as much medication. This has allowed them to remove a few of the lines into her body, including the one in her head. Her umbilical line, however, had to be removed because it is only good for a couple of weeks. This needs to be inserted in a new location but they cannot do this yet because Katherine seems to have an infection. Currently they are giving her antibiotics to fight this. We are now praying that her infection will go away and she will continue to make excellent progress.

Finally, they began feeding Katherine milk through her tube again. They had stopped this several days ago when her kidneys were showing problems. Although breast milk is the best for her health and digestive system, they thought it was better to avoid putting food into her stomach until she stabilized in other areas. We are very excited that they have started to feed her again. Our prayer is that she will progressively receive and digest her food well.

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Katherine is showing off her new leaner physique. Our daughter shows why she is being called "Katherine the Great". Most of the infants in the NICU are premies. Katherine's relatively large size makes her an unusual sight in this unit. Our hope is that all the little ones in the NICU care will grow healthy and go home with their families soon. The face of the infant above has been purposely blurred out. Mommy shows Katherine a little tender loving care by brushing her hair.

Thursday, September 30, 2004

Ronette's incision is treated by Don again. To his layman eyes it still looks good. However, Ronette believes the abdominal binder that she was requested to wear is actually irritating the opening when she bends over. She plans on keeping it off for a while.

Katherine is progressing as expected. Her urine output has remained high and she finally lost weight, approximately 5 ounces since yesterday. Dr. Vijay Dhar, another specialist in neonatal medicine, drops by to review Katherine's condition with us. As expected, he is pleased with her progress. Katherine might be able to have surgery by the end of next week.

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Daddy and mommy get another shot with Katherine. Katherine showing how red and purple she can get when procedures are performed on her. Katherine's nurse, Kate, takes a pause from her busy day for a picture.

Wednesday, September 29, 2004

We forgot to post an update about Ronette's incision yesterday. Since we were expecting to be at the hospital all day on Monday for Katherine's surgery, Don cleaned the incision and re-packed it that same day. Ronette saw Dr. Jouvenat on Tuesday and he was pleased that the incision was still progressing, albeit slowly. He expects the incision to still take a couple of weeks to heal completely. Instead of requiring Ronette to come back every day, Dr. Jouvenat said that Don could continue to clean and re-pack the incision for the next couple of days but she would need to come back on Friday.

Don cleaned the incision again today and everything still looks good (at least to him...but what does he know? He's not a real doctor, he just plays one on TV...) However, shortly afterward Ronette finds another separation on the left side of her incision. It is pretty small but it is still something we worry could get bigger. Don makes sure it is clean and they plan to keep an eye on it. Next to Katherine's health, our other prayer request is that Ronette heals quickly.

Our visit with Katherine is a positive one. Her nurse tells us that she has continued to increase her volume of urine. Although she gained a few ounces of weight last night, she is expected to begin losing weight tonight because her output of urine is more than the input of fluid. This is good news. Katherine's nurses are now having to make sure her potassium level doesn't get too low, which happens when there is a lot of urination. Fortunately this is an easy problem to monitor and control.

Katherine is very responsive to our presence. She grips our fingers and opens her eyes when we talk to her and give her kisses on her cheek. Katherine's reaction during the regular suctioning and cleaning procedures is so good that the nurses do not have to bag her. It also appears to us that the rattling in her chest is less than it has been before. This is a very encouraging visit.

We did not get a chance to talk with Dr. Bleiweis today but the nurses confirm that the goal is to still wait for Katherine to become more stable, especially the kidneys. Our prayer request for Katherine is that she continues to progress as she has been and that a date for surgery can be set in the near future.

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Daddy and mommy have their first group photo with Katherine. Katherine gets a close up wearing the cloth mommy made for her. "And I shall call him Mini Me..."
(Daddy and Jordan pose outside of CHOC)

Tuesday, September 28, 2004

Katherine's urination has increased since yesterday. However, her surgery has been delayed again because they want to see her kidneys produce more. Dr. Bleiweis meets with us and tells us that he doesn't want to set any tentative dates for surgery. It is in her best interest to wait or it is guaranteed that she'll be on dialysis. Whenever she is ready, he'll be ready, even if he has to reschedule another surgery. His ongoing concern for Katherine continues to encourage us.

We think Katherine's puffiness has diminished a little, but the nurse believes that she has become puffier since she came on (she had already been on duty for 10 hours). She has gained even more weight, despite the increase in urine. Dr. Bleiweis tells us that while her urine output is good, it still needs to increase to outpace what is being put into her system. Then she'll still need to catch up to release the fluid that has already built up.

Basically, Katherine's status and primary need is the same as it was yesterday. Her kidneys need to continue to improve and her body needs to release her fluids. We are praying for pee again.

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Katherine is sporting a new styled hat. CHOC and St. Joseph's Hospital switched over to new pumps today. The old pumps are the green ones in the background. Ronette rubs the feet of Katherine to get a reaction. Grandma Chris makes sure she doesn't tickle her too much.

Monday, September 27, 2004

Katherine's nurse tells us that she has been doing better since we left yesterday. She has been producing urine and her potassium level is low enough to remove her from the insulin. This is the direction everyone wants her to go. However, we notice that Katherine looks puffier. Her nurse tells us that she gained 980 grams overnight and now weighs over 14 pounds. This is the result of fluid retention. Fortunately, this problem will go away once she is able to urinate consistently well.

Dr. Bleiweis stops by to see us. He is happy to see Katherine's progress and he has tentatively scheduled her for surgery this Wednesday. Katherine is not highly expected to be ready, but if she continues to progress well then a spot will be available for her. Interestingly enough, Dr. Bleiweis is not convinced that Katherine's urination problems are related to poor blood flow to her body. He cited that her skin color looks good and her body remains warm and therefore believes her heart is strong and the blood is going to where it is needed. Basically, he admits to being baffled.

We are also visited by Dr. Klane Hales, an anesthesiologist who works at St. Joseph's Hospital and CHOC. One of our friends from church, Caroline Price, is an L&D nurse who works with Dr. Hales. She requested that he be our daughter's anesthesiologist. He came to introduce himself and help us understand what he would be doing. We appreciate his desire to be with our daughter and taking the time to come visit us.

Our visit with Katherine was a rewarding one. She seemed to respond to our touch and voice. Yesterday she was so sedated that there was very little reaction to our presence. Katherine would hold our finger, move her mouth and feet, and she even fought hard to open her eyes (which, despite the rest of her body, were less puffy than before). The whole time we were there she continued to produce urine. As we were leaving, Katherine's nurse (who knows how much we rely on God and prayer) reminded us to tell everyone to "pray for pee!"

Because we were expecting Katherine to be in surgery, Ronette did not make an appointment to visit Dr. Jouvenat. Therefore, Don bravely removes her packing, cleanses the opening, and repacks the incision. Ronette is now really convinced that Don would do anything for her. Hey...the vows said for better or for worse. There are no exceptions in that clause.

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Mommy holds onto Katherine's hand. Katherine squeezes back. Katherine's tummy has gotten wider due to her fluid retention. Daddy reminds Katherine that he loves to hold his daughter's hands. She might as well get used to it now.

Sunday, September 26, 2004

Just as we get into the car to go see Katherine, Dr. Jouvenat calls to see if we are available to come to his office. This turns out to be more convenient for us since this will allow us to get Ronette's incision check-up out of the way. Everything still looks good and Dr. Jouvenat shows Don how to clean and re-pack it. This will allow us to mainly focus on Katherine's scheduled surgery tomorrow.

When we arrive at CHOC we see that there is a new tube which has been attached to the top of Katherine's head. The nurses inform us that Katherine's surgery has been delayed because her potassium levels are too high and this is bad for her heart. Dr. John Cleary, a neonatoligist at CHOC, comes down to explain what is happening.

As explained previously, Katherine's blood is being pumped through her ductus arteriosus, which is a natural shunt now used to allow blood flow into her lungs. She is being given PGE to make her body think it is still inutero. Otherwise, the PDA shunt will close and she will have no way to get blood and oxygen into her lungs. When babies are first born, their pulmonary arteries are resistant to blood flow due to their constriction. Now that Katherine is older, her arteries have become less resistant. However, this lower resistance is allowing too much blood to be divereted into the lungs and not enough is going to her body. One of the consequences of this is that her kidneys are not performing well which means she is not urinating. Since she is not urinating her potassium level is starting to rise which is harmful to her heart. Therefore, they have to add more medicine, including insulin, to lower the potassium levels. Ultimately, however, her blood flow needs to improve so her kidneys will begin working and allow her to urinate. Dr. Cleary said that the results of the last few hours have been positive.

Ironically, lower resistance is what Dr. Bleiweis was waiting for before performing surgery. We got what we wanted but now the pendulum has swing a little bit too far. Unfortunately they can't lower the PGE mediation to shrink the PDA because they will run the risk of closing it prematurely before the surgery. Therefore, our prayer request is that the changes made to her medication will allow enough blood to flow to the body and restore normal functionality.

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Katherine receives a new tube. However, since she is running out of places to put them she has to have it in her head. She looks like the Borg queen... Ronette's father, Ron, and step-mom, Sharon finally get to see the baby for the first time. The nurses ask Ronette to hold Katherine for a few minutes while they change her bedding.