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Baby Katherine - Week 7

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.

Wednesday, October 27, 2004 & Thursday, October 28, 2004

We regret that no news was posted for Wednesday. While we did visit Katherine, her condition and the news we received was unable to be fully understood until we met with her doctors on Thursday. Therefore, this entry will only cover Thursday's events.

Sensing a need to for Katherine to be prayed over and anointed with oil (James 5:14-16), Don asks to meet with the senior pastor and an elder from our church at 2:00pm. Don arrives at the hospital at 1:30pm and goes to check on Katherine. A new line is being attempted which is going to help them monitor her blood pressure on a continual basis. Katherine's nurse tells Don that she had just been trying to call him to let him know that the doctors would like to meet with us at 3:00 to discuss her latest condition. Apparently, they are now focusing on helping her survive the day and we will need to make some tough decisions.

At 2:00, Pastor Stan and Elder Carl Nagel arrive and Don updates them with the latest information. After praying for Don and the family, they go up to see Katherine at 2:30. Pastor Stan anoints Katherine's head in oil, reads Scripture, and leads in prayer over her. After he leaves, Carl stays to keep Don company until Ronette arrives.

Shortly after 3:00,
Dr. Michael Rebolledo and Dr. Vovan come in to see us. We are not given very good news. Basically, Katherine's organs are failing. Her creatinine levels have doubled since yesterday, her liver is enlarge, her lungs are being filled with too much blood, the right side of her heart continues to get larger due to the regurgitation activity, and now the left side of her heart is becomming depressed. While the kidney, liver, and lung problems seem to be the result of too much blood being pumped through the ductus and not enough to the rest of her body, they do not know why the left side of her heart is becoming depressed.

At this stage, Katherine cannot be considered for surgery, even though the surgery would likely resolve these problems. She would not survive the operation. Since renal failure still seems imminent, Katherine might need a peritoneal dialysis catheter. However, this won't help her kidneys. It will simply replace their function. There are really only two options available to us. First, they could attempt to install a stent into her ductus to control the flow of blood going through it. This would require that the ductus be allowed to close naturally and hope that the stent will stay open. However, this is a rare procedure and has only been done once before at this hospital. They are also uncertain that the stent will stay in one place because the ductus is so large the stent won't have anything to anchor it in place. Our other option is to simply turn off the PGE and allow the ductus to shrink naturally. The hope would be that the ductus won't completely close since it has been open for so long and it has grown so large. If this happens, then ideally the smaller ductus will naturally shunt more blood to her organs and allow the lungs to dry up. Of course, there is no way to anticipate whether this will work. If her ductus closes, then they will have to attempt to open it up again. Their first attempt will be to give her PGE again and then emergency surgery if that doesn't succeed.

In all honesty, Katherine's situation does not look promising. We are preparing ourselves for the worst while we keep the hoping for the best. The decision that gives us the most peace is to allow them to turn off the PGE and see what God does for her. This will likely begin tomorrow morning and they will closely monitor her SATs to see how she progresses. Katherine needs a miracle and we continue to solicit your prayers for one. We desire God's wisdom in this decision but most of all we desire His will.

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Katherine still appears to be very relaxed even though she has been off of the paralytic drug for awhile. Daddy gives his sweet baby another kiss. These types of pictures are hard to come by ever since we started trading shifts with our visitations. Katherine has a new friend to keep her company. Brenna had bought this for her while Ronette was still pregnant.

Tuesday, October 26, 2004

Ronette arrives at CHOC at about 2:30 pm. Katherine's nurse tells her that not much has changed since yesterday. Having noticed that there are a few new pumps at the bedside, Ronette asks for some clarification. The nurse chuckles at the observation and very willingly answers any questions. Milrinone has been started again as well as the lasix drip. Katherine is also receiving potassium since the lasix depletes her body of this element.

There is a lot of activity around the baby today. Ronette is visited by a nurse practitioner from endocrinology. Katherine's blood sugar has been very low since Saturday so the PICU doctors asked for a consultation. A bit later, Dr. Flannery, also from endocrinology, stops by. He explains that they will be running several blood tests in an attempt to determine the cause of the sugar issues. In the meantime, they will be starting steroids as this was a previously effective treatment.

During afternoon rounds, Dr. Anas mentions that he has requested a meeting with Dr. Bleiweis at the end of the week in order to formulate a plan for the future. Drs. Grant (from gastroenterology) and Nugent (from hematology) also stop by for a few minutes. As a result of her ever complicated condition, Katherine has become quite a popular patient. She has required care from: cardiology, cardio thoracic surgery, neonatology, nephrology, endocrinology, gastroenterology, hematology, pediatric surgery, and critical care. We'll see who shows up next.

Currently, she is receiving a paralytic medication to keep her still. When she is active, her oxygen saturation drops dramatically. We hate to see her in this state but realize that it is best for her at the moment. Her consumption of breast milk has been increased to 10 CCs per hour. They have added some powdered formula to her milk for the sole purpose of adding calories without adding additional fluid.

We ask for prayer (in addition to our ongoing requests) that her blood sugar issue would be resolved quickly. She is also now a bit jaundiced (justifying the visit from Dr. Grant) so we pray that her
bilirubin level would return to normal without further incident.

Many have inquired as to Ronette's physical condition and we appreciate your concern. Her incision is healing nicely. Dr. Jouvenat is pleased with the progress and anticipates the incision being closed in the next ten days.

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Our sweet Katherine in a paralytic state. Sometimes we prefer the agited Katherine over the cathartic one. At least she looks alive. Katherine's new main line. It starts in the stomach and then goes to the groin. Apparantly this will prevent infection better. A sign of things to come. They have added more pumps due to the additional medication she needs. After surgery we are told there will be two poles of pumps.

Monday, October 25, 2004

Shortly after 3:00pm Ronette receives a call from
Dr. David Gibbs, a pediatric surgeon, while on her way to the hospital. He is going to attempt to insert another femoral line. This will be done on the right side where Katherine's existing hematoma is located. Dr. Gibbs understands our concern for working in this area but there is a great need for this line. A cut down incision will be used to run the line. While this will make the procedure more successful it will also open her up more and expose her to infection and additional bleeding. Ronette contacts Don to let him know what is going on.

Don arrives at the hospital lobby with the kids at 5:30pm to meet with Ronette as originally planned. She comes down and relates that she was only able to spend about 10 minutes with her before they began the procedure. When she last checked Dr. Gibbs was still working with her.

Not sure of what to do, Don goes up to check on Katherine. Dr. Gibbs is still working on the line but he invites Don into the room to explain what is going on. He admits that he is having difficulty finding her vein. Therefore, he wants to perform another procedure that will take two surgeons to perform correctly. His main concern is that her blood vessels are preserved so he doesn't want to get too aggressive. Therefore he is planning on returning in two hours after the other surgeon will be available. In the meantime, we will be allowed to visit Katherine.

By this time it is getting close to 6:30pm. Ronette needs to pump and no one has had dinner yet. Don suggests that Ronette stays at the hospital to pump and spend time with Katherine. He will take the kids to get dinner and wait for Ronette to return.

Ronette goes to Katherine's room to get her pumping equipment. She soon discovers that while Katherine is able to have visitors, she is still covered and prepped for surgery. Therefore, Ronette will not be able to see or touch her. Knowing this, Ronette decides to just come home.

Shortly before 9:00pm, Dr. Gibbs calls us to let us know the procedure is done and everything looks very good on the x-ray. He tells us that when he had returned the vein had become very visible. We are thankful to also hear that Katherine remained very stable throughout the entire procedure.

Regrettably, no pictures were able to be taken in the short time Ronette was able to see Katherine. She did learn that Katherine is now on four different diuretics and they plan to start her lasix drip again. However, they have increased her breast milk to 8 CCs an hour. This will allow them to decrease the amount of TPN fluid they are giving her for nourishment and hydration. Hopefully this will help to decrease her puffiness and eliminate the amount of fluid she is retaining.

Dr. Anas spoke briefly with Ronette and told her that he is pressing Dr. Bleiweis for a surgery date. He is under the opinion that her surgery will happen sometime next week. Please pray that this new femoral line is soundly in place and will serve its purpose well. This would mean no more poking for blood gas. We are also asking that God would calm her spirit so she is able to have her ventilator turned down again. Finally, we desire that her fluid would come out of her system and into her urine so she can be taken off of the diuretic medications. If her surgery is going to be scheduled next week under any circumstance, she needs to be in the best condition possible

Sunday, October 24, 2004

While Don takes Brenna to her Christmas play practice, Ronette meets her dad and step-mother (Grandpa Ron and Grandma Sharon) at the hospital. They were given their money's worth as Katherine displays her now famous temper whenever she is touched by her nurses. She holds her breath, turns purples, and causes her SATs to go down (the further Ronette has seen to date.) Thankfully, Ronette is able to provide Katherine peace whenever she places one hand on her head, holds her hand, and talks comfortingly to her.

Grandpa Ron and Grandma Sharon come home and Don takes Jordan and Brenna to their house after the practice is over. He then goes to see Ronette and Katherine and becomes updated on her situation.

Katherine's ventilation has been increased again. In fact, it is higher than we recall it ever being on the conventional ventilator. Although we were originally told her new venous line could not be used to draw blood, they attempted it anyway. They were unsuccessful in their attempts so Katherine's nurses must continue to poke and squeeze her heel to test her blood gas. However, she has become quite sensitive to when this procedure is about to begin and she immediately becomes agitated.

We learn that her echocardiogram indicates that the ductus is still functioning. She is also receiving regular infusions of lasix and bumex again. Her stool is testing negative for blood and there is far less blood coming up when she is being suctioned.

For the most part she is taking her milk very well. Therefore she is now getting 6 CCs of breast milk an hour. One indication that she is absorbing her milk well are the "productive" diapers. However, she has now developed quite a diaper rash as a result. She will be given prescription cream shortly.

Near the end of our scheduled time we hear that her creatinine level is now 1.4 and her BUN is 114. Both of these are slight improvements.

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Katherine is wearing her slip-proof booties. We're guessing that these are to protect her from sliding the next time she attempts to make a break for it. Mommy and Daddy bought Katherine her own cassette player. Now she gets to hear classical and children's praise music whenever she wants...or whenever someone is nice enough to press the play button. Daddy and Katherine playing thumb wars. She almost won but the sedative kicked in and Daddy got the upper hand...er, thumb.

As we prepare to leave the hospital, Katherine's nurse begins to talk to Ronette about her ability to calm Katherine down with her touch and voice. She then asks how Katherine behaves when Ronette holds her. She responds by saying that she hasn't held her daughter in over five weeks, when Katherine was still at UCI. Even then, she held Katherine's bed, rather than Katherine herself.

Upon hearing this, the nurse immediately suggests that this be rectified and asks Ronette if she would be interested in holding Katherine now. Of course she jumps (not literally) at the chance. After a few minutes of moving tubes around, Ronette is finally holding her precious baby in her arms, skin to skin. Katherine looks so peaceful and comfortable. They enjoyed a relatively long time together until Ronette needed to leave to pump and join her family at home. What a testimony to the grace and love of God this has been!

In celebration of this special treat, we are adding a few more pictures of Mommy and baby Katherine together. We hope you will be blessed by them as much as we are for having the opportunity.

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Mommy gives Katherine a loving embrace. What a precious sight. Katherine getting very comfy in Mommy's arms. No picture has ever looked so sweet.