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Baby Katherine - Week 4

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 09, 2004 & Sunday, October 10, 2004

We experienced some technical problems with our website over the weekend. Additionally, our hospital visits were emotionally difficult so we were unable to make our regular daily posts. Therefore, this is a combined Saturday and Sunday entry. It will still be written in the order of the events as we experienced them.

On Saturday, Ronette's mother, Rita, goes to spend the day with Grandma Hazel. Rita is planning on bringing Grandma Hazel to meet us later at the hospital. We then learn that Grandma Hazel had her flu shot this morning and therefore we needed find out if the hospital would be concerned about this. Don contacts Katherine's nurse to inquire about this. He is immediately told that Katherine is doing well and several of her doctors (including Dr. Bleiweis and Dr. Dhar) met this morning and agreed that Katherine should be moved to the conventional ventilator. This is one of the stepping stones toward being ready for surgery. One of the neonatologists is at Katherine's bedside so the nurse asks if Grandma Hazel is cleared to visit. Don is told that this is no problem. He responds by saying they would be there in a few hours.

Jordan still isn't feeling well so Don agrees to stay in the ground floor lobby with the kids while Ronette visits Katherine and comes down after her next pumping session. However, within a few minutes Ronette comes back down to the lobby. She says that Katherine is having another femoral line ran and therefore she needed to leave the NICU. This is disturbing news for us since previously we had to give our consent for this procedure. Additionally, the last time they attempted to run this line they were unable to find the vein and had to perform a cut down surgical incision. This took two hours to perform. Therefore, our visit may be for naught. Don called Rita to let her know that due to the uncertainly of Katherine's situation it would be better to not bring Grandma Hazel down for a visit.

A charge nurse comes down to the lobby to explain what has been going on. Katherine's doctors met that morning and agreed to switch her from the oscillatory ventilator to a conventional one. At first Katherine's response was good but a few hours later she began to show severe problems with her gas readings. Her carbon dioxide and pH levels were critically high. In order to monitor her more frequently and accurately they made the decision to run a femoral line. When we asked about the need for consent she indicated that in her experience this is not a procedure that normally requires consent. Additionally, due to the emergent nature of Katherine's situation they would not have had to luxury of seeking consent anyway. The nurse offered to call the front desk when Katherine's procedures were finished.

About a half-hour later we get the call saying it is okay to visit our daughter. Ronette is not ready to go up yet so Don makes the first visit. Katherine has been paralyzed again to keep her stable. Her nurse explains that "she was slipping fast" and they had to react quickly. Since it was close to the time Ronette needed to pump he only spends about 20 minutes with Katherine and then comes down to be with the kids. Ronette then goes up to pump and then spend a few minutes with Katherine. She is told the same thing regarding what had happened with Katherine.

Overall this has been a discouraging day. In addition to walking into a "landmine" at the hospital, there is continual confusion over what actually happened with Katherine. This often happens when a lot of activity has occurred in a short period of time. We are only able to absorb so much information which leaves more questions than answers. Our website is down this evening as well so nothing is able to be posted.

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Katherine still paralyzed after the new femoral line has been placed. A shot of Katherine's head without the flash. We must say, despite all the tape and tubes she still is a cutie. The same picture has the one on the left but with a flash and the camera was held normally.

On Sunday morning Don receives a call from Dr. Michelle Pham, a neonatologist that we had met a week before. She wanted to make sure we were apprised of Katherine's condition and help explain all the events that have happened since yesterday morning. In summary, several of Katherine's doctors, which included Dr. Bleiweis and Dr. Dhar, agreed to move her to a conventional ventilator. This is one of the conditions necessary for Katherine to go into surgery. However, while she was initially doing well, she began to have a negative reaction. Conventional treatment, such has bagging her, were not effective. However, they were able to make some adjustments to the ventilator that eventually brought her into a stable condition. Katherine's latest culture seems to indicate an infection so they removed the new femoral line to eliminate as many sources of infection as possible. However, they also noticed that her right foot is showing problems in her circulation. Dr. Pham indicated that some cream would be applied to her foot in order to open her capillaries. Katherine's kidneys are still doing well but she is not urinating as much as they would like. While the bumex had success, she is no longer responding to this drug. Therefore, they are putting her back on a constant drip of lasix. Don asked if the lack of output of urine is unrelated to the health of Katherine's kidneys. Dr. Pham indicated that this was correct. Her kidneys are producing a normal amount of urine but they need to push them to overcome the intake of fluid. The real challenge is drawing the fluid out of her body, much of which is outside her blood vessels.

Ronette goes to the hospital in the afternoon while Don visits his parents with the kids for a couple of hours. As Don heads for the hospital he calls Katherine's nurse to leave her a message that he is on his way. The nurse tells Don that Ronette has already left and is waiting in the lobby downstairs. When Don arrives Ronette tells him that the whole time she was upstairs there were 5-7 people working on Katherine and she was just in their way. While there, she was mostly talking to Dr. Dhar and the hematologist who is working on Katherine's foot. Ronette is told that the femoral line created a blood clot in her leg. This is causing circulatory problems. Consequently, she has to be given tPA (tissue plasminogen activator) to dissolve the clot. Furthermore, she will have to be on a blood thinner for a few months afterwards. An unfortunate side affect of this is that she will bleed too easily through any of her openings. If the clot is not dissolved, then this could result in the loss of her foot and/or stunted growth in her leg. Ronette was also told that when Katherine had her episode yesterday she had to be "resuscitated".

Ronette takes the kids home with her so she can pump. Don goes up and visits for a few minutes. Katherine's foot is now purple. The nurse warns that according to the hematologist it will look worse before it looks better. Don spends only a few more minutes with Katherine and then kisses her goodbye. The entire weekend experience has been very negative and emotional. We are also beginning to worry about the financial impact this will have on us. We are certain this will be a 6 or 7 digit expense.

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Katherine has been given another dose of her paralysis drug. The blanket covering her right foot has been removed to show her foot. A close up of Katherine's purpose foot. We hate to say this but it looks worse without the flash.

Friday, October 08, 2004

Today is Ronette's next appointment with Dr. Jouvenat. Don takes Jordan and Brenna to the office while she visits his office. Dr. Jouvenat is unable to keep his appointment so his nurse cleans and dresses her incision. She comments that the incision looks great and she has to cut down the size of the gauze in order to make it fit. While it would have been nice for Ronette to stay at home and be cleaned by Don, there is some comfort having a professional look at the incision and agree that it looks good. Ronette makes another appointment for Monday.

Ronette's mom is visiting a friend today so our whole family goes to the hospital together. Because Jordan hasn't been feeling completely well we agree that it would be best to keep the kids in the ground floor lobby. Therefore, Ronette goes up to visit Katherine for an hour and a half while Don stays with the kids. Then Don will go up for a half-hour before the family goes home. Katherine's nurse reports that today has been relatively good. Even though her urine output has been descent, they would like to see more. To assist they moved her from lasix to bumex, a much stronger diuretic. After one treatment she has significantly increased her output.

Katherine spiked a fever overnight so she is being given antibiotics. Her latest culture has come back negative so they will stop giving her antibiotics in 48 hours if she continues to show negative. The PGE medication can cause temperatures to rise so this might explain her fever. Katherine also had her Foley catheter removed to eliminate this as a source of infection. Therefore, her nurses are weighing diapers again to make sure her output is sufficient.

The nurse who took care of Katherine yesterday let us know that she went back to sleep almost as soon as we left. This means she did not have to give her any additional sedative to calm her down. However, the nurse on duty today informed us that Katherine has awoken three times and has been very active, almost agitated. Therefore they have needed to continue to use the restraints that were created yesterday and they have increased her sedation. We were told that either she is becoming tolerant of the sedation medication or this is a sign she is getting stronger. Obviously we are hoping for the latter. All the time that we were with her today she never woke up although she would grab our fingers.

Dr. Dhar makes a visit and also updates Ronette a little. He confirms that her kidneys are doing very well and are measuring better every day. Dr. Dhar also claims that Katherine can easily be switched over to a conventional ventilator at any time and therefore we should not worry that this is causing any delays regarding her surgery. She is being left on the oscillatory ventilator because it is gentler on her lungs.

Ronette gets a visit from Dr. Kenneth Grant, a gastroenterologist (it's much easier to say "GI" doctor.) He lets her know that because Katherine's liver is a little large they took an image of it to check for any abnormalities. There are some spots that have appeared on the image and therefore they need to take some better images to figure out what they are. Most likely they are nothing more than pockets of fluid, but they have to rule out something more serious. We are now praying that the results will indicate that nothing is wrong.

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Just another day in the NICU. Seems like she hasn't moved since when we last saw her. A close shot of Katherine without the flash. Usually the lights are too dim for this kind of shot. Room lights make her look better because the flash creates reflections that make her always look sweaty. Katherine has become such a problematic inmate they have to restrain her with clamps and paper towels. Perhaps they'll send her home with us due to her misbehavior.

Thursday, October 07, 2004

We both decide to visit the hospital together (it is a lot easier taking the car pool home!) The first news we receive is that Katherine did not have a good day. Her oscillatory respirator had to be turned up a bit and her oxygen levels have dipped to a point where they have had to pump more into her. Her nurse believes this is the result of pulmonary hypertension, which is the constriction of her arteries and blood vessels that prevents blood from reaching her lungs. She also has not been urinating as well. Consequently, her nurses have had to suction fluid out of her system quite often. Katherine gained around 4 ounces since yesterday. Even though the setbacks are not huge (at least yet) we are distraught because this will mean that her surgery schedule will be reset until she shows several days of improvement again. Our one bit of good news is that Katherine was able to digist the milk she was fed. Therefore, they are increasing her amount from 3ccs every 6 hours to 5ccs every 6 hours.

Dr. Bleiweis is able to visit for a few minutes and answer our questions. Don asks what is happening to Katherine's muscles while she just lays there. Dr. Bleiweis responded that they are getting weaker. This even includes those muscles that are in her torso that help her breathe. Ronette wondered if pneumonia was a concern since she is always on her back. Dr. Bleiweis agreed that pneumonia is a risk. This is why she is rotated as often as possible. Don also wants to know if her kidney and lung problems would still exist after the surgery. Dr. Bleiweis reiterated his desire that Katherine be in the best condition possible. He is very pleased that her kidneys are overall showing progress. This is just a matter of time. Ronette's final question was whether Katherine would come away from her surgery with a closed or open chest. Dr. Bleiweis is hoping for a closed chest since this will obviously help to prevent infections but it will depend on how swollen her heart and other organs get during surgery. There needs to be enough room for them to close her back up.

Ronette asks to see the lactation consultant because she is concerned that she might be getting thrush, a painful yeast infection common with nursing mothers. In Ronette's case, she thinks this might be the result of the antibiotics she has had to take. In addition to killing the bad bacterium, it can also kill the good bacterium that keeps yeast under control. While Ronette is away, Katherine opens her eyes with Don right there to witness. While she is very alert, her eyes never quite focus and track as they had done the last two days. Eventually Ronette comes back to see her awake as well. While it is nice to see her awake and responding, she appears more agitated than comforted. Katherine's breathing is uneven, almost labored, and she is moving her limbs around so much that the nurse has to put her arms in a makeshift restraint so she won't accidentally remove her tubes.

The last thing we want to do was leave her while she was till awake. However, the time came to 7:00pm and her eyes were still open despite our attempts to calm and relax her. So we say our goodbyes and give her our goodnight kisses.

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Our little girl asleep when we arrived at the hospital...and for most of our visit. Katherine's respiratory therapist takes a regular blood sample to check her gas levels. Finally she opens her eyes for daddy. Mommy came in to see her for a final few minutes.

Wednesday, October 06, 2004

Ronette visits Katherine in the early afternoon while Don is working. Katherine continues to progress in various areas. Her nephrologist, a kidney specialist, who has been checking on Katherine regularly has signed off on her case. This means that Katherine's kidneys are considered to be functioning normally. Katherine is being fed breast milk again, although they are only giving her 3ccs every six hours. Ronette is blessed to have another day where Katherine is awake for almost 30 minutes.

After Don arrives we are immediately asked to leave for about 30 minutes so a surgical procedure can be performed on another infant. When we come back, it appears that Katherine has given another sedative. Therefore, she was fairly unresponsive during the remainder of our combined visit. However, even though her condition is still complicated, we notice that Katherine does not require as close attention as she normally had. We are able to have quite a bit of uninterrupted time with her. In the last ten minutes before we had to leave, Katherine struggled to wake up and respond to our voice and touch. Perhaps next time Don will have an opportunity to see her awake.

Ronette's volume during pumping went down today. We are praying that this is just an isolated incident. We are also praying that in time Katherine will be able to breast feed.

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Just lounging around the warming tray. No wonder she's having trouble losing weight! Katherine grabs daddy's finger. She loves to hold on to us...when she's alert. Capturing a slight grin. Katherine was really struggling to overcome the sedation.

Tuesday, October 05, 2004

Ronette arrives at the hospital in the early afternoon while Don visits a client. For the most part Katherine is showing gradual improvement. Her respiratory settings having been lowered but they have given her a steady drip of lasix to help her urination. This continues to help her put out more than she is taking in. While she has peaks and valleys, they are relatively minor and within normal expectations.

Before anybody else from our family arrives, Ronette sees Katherine open her eyes for about twenty minutes. There is a definite bonding between them as Katherine continually grips Ronette's finger and makes her first verbal response - despite the tube going down her throat. This is such a precious moment for them that Ronette does not waste any time to interrupt their time together to get the camera. Fortunately, after Don arrives, Katherine opens her eyes again while the nurses move her around. He spends a few minutes of personal time with her but it is limited by the actions of the three nurses who need to rotate her.

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Ronette's grandmother Hazel ("Grammie") sees her great grand-daughter for the first time. Despite previous reports, Katherine still has one line in her head...it just isn't on top like the others were. A nice open eye shot of Katherine as she is getting turned in her bed.

Monday, October 04, 2004

Ronette sees Dr. Jouvenat for her follow-up exam. She finds out that her last culture indicated she has a couple of infections. She receives a prescription for penicillin but it appears she'll have to take it for three weeks. Otherwise, Dr. Jouvenat is pleased with the continued healing of Ronette's incision. Ronette doesn't have to see him again until next Friday.

As Ronette is being examined, Don gets a call from Katherine's nurse, Kate. She needs verbal authorization to run a femoral line, which is a catheter going through a vein near Katherine's groin. Don gives his consent for the line. However, a little later Kate calls again informing Don that the surgeon was unsuccessful at running the line. Their only alternative is to perform a cut-down. Kate puts the surgeon on the line to explain this a little more. The surgeon was unable to get the line to go up Katherine's vein either because she is still too puffy, her veins are too small, or a combination of both. A cut-line will allow the surgeon to make a small (1 centimeter) incision so they can get direct access to the vein. Unfortunately, since they already attempted one side of her groin they are forced to perform the cut-down on the other side. After hearing the explanation for the procedure, Don gives another consent.

Ronette's mom, Rita, drove down from Washington yesterday afternoon and will be staying with us until next Sunday. She takes the kids for the day and they go to see Shark Tale. Ronette sees Katherine at 2:30pm and Don joins her at 4:30pm after spending a few hours in the office for the first time in several weeks. Katherine is still on the oscillatory ventilator but she continues to progress. Her blood-gas readings have been good. Despite being the ventilator, she is actually breathing a little on her own. Before Don had arrived, Dr. Bleiweis dropped by and spoke with Ronette. He wasn't sure why Katherine still needed to be on the oscillatory ventilator but he believed she would be off of it soon. Katherine's surgery date will not happen until next week. His desire is to have Katherine be as strong and healthy as possible before performing surgery. Despite the difficulty of hearing about another delay, we understand the rationale for the decision. At this point, there aren't any specific prayer requests needed other than she continues to grow stronger all over so she can face surgery under optimum conditions.

Our day was greatly brightened when Katherine opened her eyes and focused them clearly on us. She kept them open for a few minutes moving them back and forth between mommy and daddy. For a moment it even appeared that she responded with a grin at the sound of Ronette's voice (of course, all parents think their babies smile before they actually do!) It was also nice to see that both lines running in her head had been removed.

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Katherine gets a visit from "Ma" (aka Grandma Rita). Mother and daughter seeing each other eye to eye for the first time in two weeks. "Hey, turn off that light!." Daddy gets his last picture of Katherine's open eyes.

Sunday, October 03, 2004

Because there was a relatively significant change in Katherine's condition yesterday, we decided to make an early visit today. Don stayed long enough to get briefed on Katherine's status and came home with the kids so the website could be updated as soon as possible. Ronette stayed at the hospital to pump and be with Katherine. Don will go back with the kids and get another update later this afternoon. Any new changes will be added here this evening.

As of 2:45pm, Katherine is still connected to the oscillatory ventilator. However, her nurse indicated that she has been doing better since yesterday. Her carbon dioxide level has remained in the range they want (it was 54 when we arrived), she has been taken off of the paralysis drug, and her sedation medication has been decreased. Unfortunately we are told that she is having trouble urinating again. In order to help, at 2:00pm Katherine was given lasix, a drug that is supposed to help pull her fluids out. She was on this before when her kidneys were first having difficulty but they had been able to stop this a few days ago. Ronette was allowed to change Katherine's diaper. It was wet; although at the time of this update we don't know how much urine was in it. The line running into her foot came out. Since the nurse is having trouble finding veins in her puffy feet, legs, and arms, he had to insert another line on the top of her head.

We were greatly encouraged when Katherine responded to our presence. She continually opens her eyes, squeezes our finger, and is moving her arms around. This is the most mobile Don has seen her since the day she was born.

As of 6:00pm, Katherine's nurses have put her catheter back in. Her urine output, however, has been pretty high as a result. Katherine still continues to respond to our presence. In all other areas she is remaining stable as well.

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Katherine is still on the oscillatory ventilator. In order to turn her on her side they had to rotate her body. A picture of Katherine from the other side her her bed. Ronette is holding her hand. The Borg Queen is back. There are now two lines in her head because they are having trouble finding other veins they can use.