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Baby Katherine - Week 5

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 16, 2004

Upon arrival at the hospital, Ronette is informed that Katherine is having another good day. She is being attended to by a nurse we have only had once before but really like.

During the visit, they determine that they need to start another IV line. Katherine really needs to be receiving lipids. These are essential fats needed for the development of her brain. Ronette jokes with the nurses that they really can't expect her to lose weight if they insist on pumping her full of fat. Unfortunately, her nurse is unable to get a good vein in her foot so they resort to putting the line back in her head. We hate seeing that line but Ronette is assured that it really is a great access point.

Katherine's oxygen saturations have been consistently in the 90's today. The respiratory therapist draws a blood gas. The results come back so good that they decide to wean her down a bit on her ventilator.

Please continue to pray that her body would rid itself of excess fluid, that her kidney function would return to "perfect" and that her lasix drip can be discontinued. These are the key requirements to proceed with surgery.

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Our little Katherine showing us her boo-boo lips. Katherine's bruise on her arm is starting to look better. Uh oh...the Borg Queen is back. Unable to get the vein in her foot, they had to resort to her head again.

Friday, October 15, 2004

Don is still under the weather so Ronette makes the trip to CHOC alone today. Katherine's nurse is one we have not met before. Although she is very friendly, it is hard to get used to new nurses all of the time. Those who take care of Katherine regularly know what kind of details we like to receive. It is hard to communicate as fully as we'd like with unfamiliar staff. However, we must say that all in all we are very pleased with the nursing staff in the NICU.

Ronette is told that Katherine has had a "pretty good day." After last weekend, the last five days of "pretty good" have been a welcome relief. Of course, we would like to see positive progress but, at this point, we're just happy with the lack of drama. Katherine is lying on her tummy when Ronette arrives which is a pleasant surprise. This is the first time she has seen the baby on her tummy and she spends an hour examining and stroking Katherine's back.

Katherine's nurse explains that the PGE (the medication keeping her ductus open) has been increased a bit. This is expected as she gets older. This medication has the side effect of making Katherine's body temperature unstable. She goes from too hot to too cold and back again. This has got to be uncomfortable. We think of how we feel when we have a fever and know that the baby must feel miserable.

Ronette also learns that a new heart medication is being given in place of the Natrecor that had previously been received. This has been replaced with Milrinone. It is explained that Milrinone can more easily be administered through the lines already in place whereas the Natrecor had to have its own dedicated line.

A hemotologist, Dr. Ramos, stops by. He indicates that the clot is still dissolving and they are running some studies on Katherine's blood to check her clotting factors. He also asks if we would be willing to participate in a study which hopes to identify previously unknown genetic markers which predispose people to developing blood clots. The procedure is merely collecting 1cc of blood during a regular blood draw. We are considering whether or not to participate.

Ronette, again, helps with Katherine's care. Each day we look for signs of God's goodness. Today, when Ronette begins talking to Katherine, she starts to open and close her fingers. Ronette puts her finger into Katherine's hand and Katherine grips firmly. When Ronette tries to pull her finger away, Katherine tightens her grip. To us, this seems a sure sign that Katherine knows us and responds to us. What a joy to find that, even in her altered state, our daughter desires some level of interaction with us.

We read in our church newsletter today that children will be baptized on Sunday November 28th. Our prayer is that our baby will be among those welcomed into the Covenant Family on that day. Please pray with us that Katherine will be home by then and that our church family can praise God with us on that day! Hopefully you will enjoy our pictures today. Ronette is not quite as accomplished at photojournalism as Don. She is anxiously awaiting his return to the NICU. The responsibility of capturing our little "model" on camera is a bit much for Ronette. :)

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Ronette finally gets to see Katherine's back. Katherine grips mommy's finger. Whenever Ronette began to pull her finger away Katherine would grip it stronger. Her foot looks better today.

Thursday, October 14, 2004

Today was fairly uneventful in the grand scheme of things. Don woke up with a sore throat. We think he has contracted what Jordan has had for the last week. Therefore, Ronette went to the hospital alone today.

Soon after arriving, Dr. Pham came to speak with Ronette. She expressed a desire for Don and Ronette to meet with as many doctors on the team caring for Katherine as possible (seems like every doctor in the hospital has had their hands on her!) in order to get some perspective on where we've been, where we are now and where we hope to go in the near future. Hopefully this meeting will take place next week. Dr. Pham also suggested choosing a social worker to attend the meeting as well. She wants us to have a social worker with whom we are comfortable. Believing that we will be residents of CHOC for "quite some time," Dr. Pham thinks it beneficial for us to have contact with someone who can direct us to any resources we may need.

Ronette asks about the ultrasounds that were performed on Wednesday. Dr. Pham reported that the vascular ultrasound done of Katherine's leg to check the status of the blood clot showed that there is some improvement although the clot has not fully dissolved. Reports from the liver and kidney ultrasound were not available at the time of the visit.

Ronette helps with some of Katherine's care during her visit including taking her temperature, changing her diaper and cleaning her eyes and mouth. These are things that we used to take for granted. However, they are now precious moments in which we can show our love for our daughter. Although we long to have our baby home with us, we find joy in the time we spend with her even if she does sleep through all of our visits!

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A fuzzy picture of Katherine's foot. Hard to tell if it is looking better or not. Still sleeping during mommy's visit. It has been a week since she was last awake for Ronette. Same shot, different angle.

Wednesday, October 13, 2004

As we drive to the hospital Don realizes that he forgot the camera. Ronette is dropped off to see Katherine while he goes back home to pick the camera up. Katherine is still lying on her back because an ultra-sound had been scheduled. After fifteen minutes the equipment arrives to take images of her kidneys, liver, and bladder. This process takes about 45 minutes. Since Ronette wants Don to have some time to visit and she will need to come home soon to pump she leaves before they are able to turn her over completely.

When Don arrives, Katherine's nurses are finishing the process of turning Katherine over and getting her tubes and lines repositioned. Katherine appears to handle the move very well. Don is able to touch her back and brush her hair. Katherine's nurse is occupied does not provide specific information regarding Katherine's day or activity. She does say that Katherine had a good day and she has lost a few more ounces since yesterday.

Our prayer is that her images will come back clear and any previous concerns will have been eliminated. Obviously we are pleased she is still losing weight but we still need her to be consistently improving in this area. Tomorrow we plan to ask for more details.

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Our first sight and picture of Katherine's back. It is so nice to see so much of her without any tubes, bruises, or tape. Katherine gets a little bed head. Daddy gives her a little TLC and brushes it to look nicer. Her foot continues to look better, although her middle toe still looks quite purple.

Tuesday, October 12, 2004

(Webmaster's note #1: We have received several emails lately from people all over the country (as well as other countries) letting us know they are praying for us and have greatly appreciated this website. This is a tremendous blessing to us. To those who have dropped us a note and to those who are simply keeping up to date on the details you have our heartfelt gratitude. Every note we have received has been terrific. Regrettably we cannot respond directly to everyone but we are confident that no one expected otherwise. Please know that we are reading and cherishing every message that comes to us. As people continue to read and share in our experiences, we want to make sure that everyone knows that the Lord is providing for us and giving us the strength to endure. Although the emotions, disappointments, and frustrations are real, this venue doesn't give us the opportunity to share those moments in between hospital visits where we are comforted, heartened, encouraged, blessed, and simply able to adjust to the latest news. God is good. Although we deserve nothing from Him, He is faithful and has been providing exceedingly and abundantly all that we need.)

(Webmaster's note #2: As many who are close to our family know, our family is slowly making the transition back to "normal". What this means is that in anticipation of our daughter's extended stay in the NICU and recovery in the PICU, we have realized the need to begin making the adjustment and return to those daily activities that our family was doing before the birth. This includes Don going into the office, grocery shopping, and restarting our homeschool. This has caused some delays in how quickly this website can be updated. Please note that the support we have already received and the offers for continued support has been outstanding. We believe, however, that it is necessary to make this transition while we are in "wait" mode. If and when circumstances change, such as the time of Katherine's surgery, we will welcome any support such as meals (which have been very yummy!) Our good friend Michelle Esposito has been doing an excellent job of coordinating these for us.)

(Webmaster's note #3: This is the final note (we promise!). As mentioned above, the comments regarding the website are extremely encouraging and helps provide the energy needed to keep the details updated. While no one has made any comments regarding the download speed, it has occurred to us that as this site grows it might be too slow for people using dial up internet service. Therefore, within a few days, our goal will be to split up this page into different "weeks" so at most only seven days of details will have to be downloaded at any time. The main page (i.e. the one you are currently reading) will always have the most current detail. As we move forward in time the current content will be moved onto another page while this page will have the current activity. We are also hoping this will help those who are printing this information so it can be read at home or by spouses without internet access. Again, we thank you for investing your time and prayers into our family. Hopefully this will make it a bit easier.)

Our visit today is relatively uneventful, which is now a welcome change of pace. Ronette sees Katherine first and then swaps with Don as we have done for the past few days. Katherine's nurse informs us that they have had to increase the dosage of heparin. Her urine output has increased and she lost about 6 ounces since yesterday. However, her sodium level has been high and they have had to give her
bicarbonate to lower the acid level in her blood.

Fortunately Katherine has only needed to be sedated once. Her foot continues to look better although her clot is still in her system. The hematoma (bruise) on her left arm appears the same as it did yesterday. Katherine's nurse tells us that she rolled her onto her stomach for the first time (which was an idea we had suggested to Dr. Bleiweis last week as a way of helping her lungs). At first Katherine was not tolerating this but she quickly adjusted and was reported to do quite well for three hours. Since neither of us had ever seen her backside we asked if she could be turned during our visit tomorrow. Katherine's nurse said that would no problem.

Although she has not been sedated for a while, Katherine is not showing any strong signs of waking up. She seems to be resting quite peacefully although we can hear a "wheezing" sound coming out of her. The nurse said that this is caused by the ventilation tube and not because of any problems with her lungs. At times it sounds like she swallowed a bullfrog. It is likely she has been making this sound for quite a while but since the oscillatory ventilator is so loud we hadn't noticed this until recently.

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Katherine seemingly resting well. Here mouth appears wet because ointment is applied whenever they suction her mouth or wipe away the dry skin that appears on her lips. Her foot continues to look better. A close up of the bruise on her left arm. This looks the same as it did yesterday.

Monday, October 11, 2004

(Webmaster's note: Our good friends James and Stacy McDonald, publisher and editor-in-chief of
Homeschooling Today released a special email to their mailing list asking for prayer on behalf of Katherine. There has been an influx of wonderful testimonies and prayer support as a result. Because our contact page had not been completed these emails have had to go directly to James McDonald. There is now an email address on our contact page, bakkefamily@srpcs.com, and we will soon be adding a guestbook. We greatly appreciate the time everyone is investing to stay current with our family situation and lifting us up in prayer.)

Ronette has her next appointment with Dr. Jouvenat. Unfortunately, he has once again been called away for an emergency c-section (brings back memories.) Therefore his nurse is responsible for cleaning and repacking Ronette's incision. She confirms Don's observation that the incision is staying healthy and getting smaller in every direction. Ronette tells Don that she really appreciates how gentle he is at removing the tape. Every time it has been removed by the doctor or the nurse it has been painful.

After we arrive at the hospital with the kids that afternoon, Don makes the first visit to see Katherine. Her nurse explains that they have discontinued giving her the tPA and are now administering a protein called AC3 in addition to the blood thinner, heparin, that they had already been giving her. Don notices a hematoma in Katherine's left arm and there is a larger one in the groin area where the femoral line was placed. This is an expected consequence of being on the anticoagulant (tPA) medication.

Katherine's foot, amazingly, looks better. The hematologist on duty, Dr. Diane Nugent, comes up to explain Katherine's situation to date. The tPA accomplished its initial purpose which was to dissolve the blood clot enough to move it down her leg. However, they don't want to break it apart any further because this could cause smaller clots to travel further down and get stuck in smaller vessels. Therefore, Katherine is being given AC3, which is a protein that our bodies naturally have to control the amount of clotting that occurs. In Katherine's case, her AC3 level was very low and this is one of the factors that caused the blood clot to form in her vein. By giving her AC3 and heperin, her body is preventing the existing clot from growing bigger and is slowly dissolving it at a safe pace.

Our baby wakes up while Don is there. Her nurse indicates that she has not given her any of the paralysis drug and she's only needed to give her the sedative a few times (as opposed to a constant drip.) Although Don is talking to the hematologist for most of the time that Katherine is awake, he is able to hold her hand and see her go back to sleep before he leaves. Ronette and Don switch places so she can pump and then visit Katherine for a little while. Unfortunately, the pumping room is full and there are others already waiting. During Ronette's visit, she notices that Katherine appears to be getting puffier. She is again told that Katherine's kidneys are functioning normally but in order for her to be ready for surgery she needs to be able to lose one and a half liters of fluid.

Fortunately Katherine is still on the conventional ventilator. Our prayer requests for her are 1.) increased urine output, 2.) safe dissolving of her blood clot, and 3.) general progress in all other areas.

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Katherine begins to wake up shortly after Don arrives to visit her. Katherine gets a hematoma on her arm as a result of the tPA (anti-clotting) medication. Katherine begins to relax and fall back asleep before Don leaves.