Wednesday, December 26, 2007

December 26th, 2007

Update on eye surgery:

Both babies were approved for a medical transport by air for their additional ROP surgery. They are scheduled for surgery 1/9/07 at William Beaumont Hospital in Royal Oak, MI. I will fly with the babies. We will leave 1/8/07. Hopefully this trip will not be as long as the last. They have scheduled a second surgery for both babies on 1/11/07. As much as I hate to put the babies through more surgery, we really don't have much of a choice if we are going to save their vision. If left untreated, Kinnick will be blind in both eyes and Carver will be blind in at least one eye. Please pray that this is our last trip and that Dr. Trese's group is able to save their vision.

Since this process has been difficult to coordinate, I am going to post the process at the bottom of this page. The process is actually pretty simple - I just didn't know where to begin. Hopefully, this will help someone else if they ever need the same service. I am also going to post the name of the hotel that I stay at while the babies are having eye surgery. The Director of Sales has been very kind to me. I have been able to stay at a Candlewood Suites in Troy, MI at $40.00 a night. This hotel has everything that you could possibly need: A pantry to purchase food, a gym, a laundry facility, fridge, microwave, cook top, dishwasher, and cookware. All of this in a very CLEAN hotel located near an awesome mall, Target, Walmart and anything else you could possibly need. The hospital recommended many others and none compared.

Monday, December 17, 2007

December 17, 2007

Kinnick is home!! She came home yesterday. We are so happy to have her home. She looks so good and is on 1/2 lt oxygen via nasal cannula. We were told to expect her to spend a lot of time in the PICU over the next 4 months due to her bad lungs.

Carver is still doing great. However, he is still constipated. I guess if that is all that is wrong with him, we'll take it.

Big brother (Hayden) enjoyed some time with Carver prior to Kinnick's return home. Can you guess what they were playing with?





We are still working on the trip back to Detroit for more ROP surgery. The eye doctor wanted us this Wednesday or the day after Christmas. Neither of these days are good. We can't go Wednesday because Kinnick just came home and there just isn't enough time to coordinate the trip. I don't want to go the day after Christmas because we would have to be there the day before, which is Christmas. Since I missed 4 birthdays with the last visit to Detroit, I really don't want to miss Christmas. However, we are told that we need to go ASAP (within a week if possible) because Kinnick is not expected to stay well long - lungs. So, as soon as the logistics are figured out, we will be off to Detroit. I'm guessing we will go the first part of January. I'm having a difficult time finding someone to help organize the trip. Driving 15+ hours with 2 babies that require oxygen and an oximeter full time along with one requiring g-tube feeds and suctioning doesn't seem to make sense. The oxygen alone would take up 1/2 of the vehicle and doesn't seem safe in the middle of winter. Plus the battery back-ups on the equipment don't last more then 12 hours at a time after being fully charged. I've talked to the commercial airlines (AA) and it doesn't even sound like they can accommodate my babies needs while on flight. In addition, the fact that the airlines are never on time and ground you for bad whether - not allowing you any of your checked baggage, would not work for us. So, I'm trying to figure out what it would take to get a medical transport approved. We have so many doctors, I'm not even sure which doctor is responsible for writing the medical necessity letter, and the doctors don't even seem to know which one should write the letter. So, when I figure all of this out, I will be sure to post and let others know.


For those that know big brother Hayden, here's his Santa picture....


I'll see what I can do about getting a picture of the whole family posted (all 9 of us!)
Love,
Shanon

Monday, December 10, 2007

December 10th, 2007

Some updates:


Eyes:


Carver's eye evaluation showed that the retina in the right eye has stayed attached. However, the retina in the left eye is no longer attached and is torn, again. He will need to return to Detroit for another eye surgery.


Kinnick's eye evaluation showed that she is blind in her left eye and they do not believe there is anything else that can be done for this eye. The retina in the left eye is no longer attached and is torn like Carver's. This will require an add'l surgery in Detroit. I really hate to have the surgery. This is the surgery that was so painful for Carver. When Carver had the surgery, they told me that if it was Kinnick that needed the surgery, they wouldn't do it. They didn't think she could tolerate the surgery. Both Kinnick and Carver will require this surgery to save their vision. I will know more about the trip in the coming weeks.


RSV:


I'm disappointed to say that Kinnick is back in the Hospital PICU at Wesley. She was home 1 full month when her oxygen requirements started to go up, again. She was saturating at 100 % on 3/4 lt oxygen last weekend. By Tuesday, she was unable to saturate in the 90's at 3/4 lt. We had to increase her to 1 lt. By night, she was up to 1 1/2 lt and still having a difficult time saturating in the 90's. By Friday afternoon, she was on 2 1/2 lt and still not saturating in the 90's. I took her to the pediatrician and they sent her to the Hospital. By the time we got there, she was unable to saturate in the 90's at 3 lt. They put a mask on her and had her on 10 lt within a few hours. By night, they put her on CPAP. She tested positive for RSV. We've had 3 shots to avoid RSV, but still got it. We are told that it shouldn't be as severe. So far, we have avoided being put back on the ventilators. They believe that she has hit her peak and she should start getting better, now. Her poor lungs are just so weak that the simplest cold is life threatening. It just takes one person sneezing with a simple cold to give a 23 weeker RSV. Unfortunately, we have a 2 year old in the house that always has a cold. It is difficult to keep an active 2 year old completely away from a sibling. Hopefully Kinnick will be home by Christmas. Carver appears to be a little more stable and has been able to avoid a cold. He is still on 1/4 lt and saturating in the 90's.


Kinnick 12/09/07 in the PICU with RSV (on CPAP):



Return to Work for Mom:
I was supposed to return to work today. However, with Kinnick in the hospital, I just couldn't do it. It was a real wake-up call. I really feel like the twins need me at home at least another 6 months, or until we are out of the winter months. They have so many needs that need to be monitored. I don't feel like these needs will be met if I'm working 8-10 hrs a day outside of the home. I am fortunate enough to get a nurse in the home for 10-12 hr/day. However, there are many days that it takes two adults to care for the babies in order to meet their needs. A normal healthy baby can cry for awhile without harm. If Kinnick cries for even a couple of minutes, she desaturates as low as the 40's. You have to drop what you're doing to care for her. If you are feeding Carver, this could mean that he doesn't get fed for another 30 min to an hour. With his poor eating habits, it doesn't make sense to ignore his feeds. This is just one of the many times that 2 people are necessary. In addition, with everything that is going on with the two babies, it is difficult for one person to do everything and still be able to do the extras that are crucial to the developmental success of the babies - like Physical Therapy. I feel like I need to be home to insure that all of this is being done. The babies have fought very hard to be here today. I want them to be as successful as possible.
Feedings and weight gain:
Carver finally gained some weight. He is up to 12 lb 12 oz. He is now eating much better then before. We are now able to get him to take about 24 oz/day. Before, we were lucky to get him to take 10 - 15 oz/day. We have started weaning him off the Special Care 24 formula. We just couldn't afford the $800/month. We started by mixing the Special Care 24 formula 50/50 with an Enfamil Enfa Care Lipil 22 calorie formula. We are now mixing it 75/25 and he is still taking it. We have noticed that he is more constipated. Hopefully, we can get something to help the constipation so that he will continue eating and gaining weight. Kinnick also gained weight before going back to the PICU. She was up to 13 lb 8 oz.
Hearing:
Carver gets his first set of hearing aids this Wednesday. We have not been able to get Kinnick in to be evaluated, yet. We are waiting for her to be more stable before having her sedated. She didn't do well when she was sedated for the eye evaluation. In fact, the hospital tried to admit her over night. I was able to convince them to send her home. Anytime we can avoid the hospital, we do. She was fine once she got home. I think the hospital stresses her out.
I hope everyone has a wonderful Christmas. We look forward to having our little Kinnick home in time for Christmas. Please pray that our little girl gets well soon and stays well. She needs to be well long enough for her lungs to heal and grow.
Thank you for all of your thoughts and prayers,
Shanon

Tuesday, November 20, 2007

November 20th, 2007

Sorry it has been so long. We have been so busy.

Carver continues to do the same. He is still on a 1/4 lt of oxygen. He now weights 11 lbs 13 oz. We were finally able to get the formula he was on in the NICU - Similac Special Care 24 calorie. He really does well with this formula. He has expensive taste. It only comes in 2 oz ready to feed bottles at $80/case. A case lasts about 3 days - that adds up to $800/month. The Home Medical Service that we get all of our medical supplies from is trying to get approval from Medicaid to get the formula covered under our Medicaid card. We'll cross our fingers. If she is unable to get it approved, we'll have to try something else in another month or so - we can't afford the $800/month with a family of nine.

Carver had his BAER test last Wednesday. Unfortunately, the test results remained the same as the last test results. He is profoundly deaf in both ears. To give you an idea of what he is hearing..... a lawn mower's sound is at about 105 dB. They THINK they may have seen a response at 120 dB.

Normal range or no impairment = 0 dB to 20 dB
Mild loss = 20 dB to 40 dB
Moderate loss = 40 dB to 60 dB
Severe loss = 60 dB to 80 dB
Profound loss = 80 dB or more

Carver's ears were molded for hearing aides. They do not expect the hearing aides to work, however they believe they will keep the ear stimulated enough that when he is old enough to get a cochlea implant, our odds of success will be greater.

We have had so many appointments. There have only been a couple of days on my November calendar where we have not had an appointment. We have been fortunate to have the Speech Therapist, Physical Therapist, Occupational Therapist, and Dietitian come to our home. Carver is really starting to loosen up his muscles. He still has some stiffness in his legs, but we are seeing a big difference.

Carver will have his eyes looked at under anesthesia next Tuesday. The doctor still thinks the left retina is detached. He will take pictures and send them to Dr. Trese in Detroit. However, he feels like the right eye is doing really good. If we were only able to save one eye, the surgeries will still be considered a success. If we hadn't gone to Detroit, he would have been blind in both eyes.

Kinnick came home November 12th. She really had a rough time with her psudomonus in the PICU. After being home one week, her psudomonus returned. She is now taking an oral antibiotic to avoid going back to the PICU.

We're still adjusting to Kinnick being home. She has so many more needs then Carver. She is on a higher level of oxygen (usually at least 3/4 lt), needs suctioned all of the time, has 8 breathing treatments a day, has more meds, and has a G-tube for feedings. The G-tube makes me really nervous. In fact, the Home Health care nurse accidentally pulled it out the other day - that was scary! We had started to bottle feed Kinnick (small amounts as tolerated) prior to the return of her psudomonus. The good news is that she was really doing pretty good. We're hopeful that she will catch on quickly and we can get rid of the G-tube.

Kinnick missed her BAER due to being sick. We'll have to reschedule for December or January. She will have her eyes looked at under anesthesia next Tuesday. The doctor believes that her left retina is still detached, but believes the right retina remains attached and looks good. The doctor will take pictures and send them to Dr. Trese in Detroit. We'll wait to see what Dr. Trese recommends. We may be going back to Detroit for more eye surgery.

I haven't had a chance to read all of my preemie friend's blogs. I did browse them quickly and am excited to see them doing so well. I'm so happy for Jodi and Stacy (and families).

I hear my little ones crying, so better go. I'll write more when I can. Please continue to keep Kinnick and Carver in your prayers.

Love,
Shanon

Saturday, November 3, 2007

November 3rd, 2007

Update on Kinnick and Carver.

Carver is still home and doing well. The formula that the hospital sent Carver home on (32 calorie/oz) has caused him to be constipated. Since he's constipated, he doesn't want to eat. We've been struggling to get 3 oz of formula in him every 3 hours. Our Pediatrician said to go ahead and give him 22 calorie formula with Karo Syrup. This really hasn't made much of a difference. We are lucky to get him to take 5 bottles. He's skipping 3 of his feeds and we struggle for nearly an hour to get him to take the 5 bottles. We've tried different bottles and nipples, but none have made a difference. I'm afraid that he's going to need a G-tube for feedings. We see a dietitian on Monday. Carver weights 11 lbs 12 oz. He lost weight while in the PICU at Wesley Hospital. He came home weighting 11 lbs. He has gained 12 oz since he has been home. That's pretty sad, since we aren't even getting him to take the amt of calories that he is supposed to have....guess that tells you how much the PICU was feeding him. Getting the PICU to feed him was an every day battle. They told me that they didn't have "time" to feed him. Instead, they just increased his calories to make up for the missing feeds. I'm frustrated since he came home from Michigan taking 4 oz a feed with no problem.

Carver remains on 1/4 lt oxygen. We haven't really touched it since he's been home.

Carver seen the eye doctor on Thursday. The eye doctor thinks that the left retina has detached, again. He was happy with the right eye. The right eye appears to be healing nicely. He'll see Carver again in a week.

Carver is scheduled for another BAER hearing test on November 14th. They will take a mold of his ears at that time to fit him for hearing aides.

Kinnick remains in the Wesley Hospital PICU. She was put on the high frequency ventilator for 4 days. She was then moved to the conventional ventilator for another 3 days and is now back on her nasal cannula. She's mostly on 3/4 lt oxygen. However, she gets irritated easily and really struggles to breath. She still gets suctioned very regularly. She was tested and it was determined that she has pseudomonas. This is a type of pneumonia that you only get in a hospital setting. She will not get to come home until she finishes her IV meds to clear the infection. The meds are given for 14 days. So, we do not expect her home for a least another week.

We feel like we have suffered some pretty big set backs being placed in the PICU. Carver's feeds have gone backwards to the point that he will most likely require a G-tube for feeds and Kinnick's lungs have been compromised due to the pseudomonas she got from the hospital.

Kinnick was also seen by the eye doctor (on Friday). He believes that her left retina has detached, again. However, like Carver, her right eye appears to be healing nicely. She will be seen again in a week.

Saturday, October 27, 2007

Kinnick and Carver Hospital Pics


October 27, 2007

Sorry that it has been so long since I posted. Both babies finally came home on Tuesday. That was a very stressful day, but exciting day. The Home Medical Supplies place didn't bring their equipment to our home until 4pm on Tuesday - we were told we would be released at 10:00am. We didn't get home till around 2:00pm. I had no idea how much equipment we would need. By the time all of the equipment was dropped off, we looked like we just moved in. We had boxes and machines everywhere. It took a while to organize everything in a way that was useful. I'm still moving things as I go. The nights have gone amazingly well. Both babies sleep very good at night. Kinnick's saturation monitor goes off more then Carvers, so we get up to check on her quite a bit. Carver wants to sleep all night, but we have to wake him for his feeds. He has a hard time gaining weight, so we can't miss any feeds. The days have been very stressful. Luckily, I have a Home Health Care nurse that comes during the day to help me. The babies are on so many different meds that it takes both of us to keep them straight and given on time. In addition to the multiple meds, the babies have appointment booked nearly every day. It is a chore to get all of their equipment and them in the car and to the appts on time. I'm not sure what I would do without the help of the Home Heath Care nurse.

Carver has been on 1/4 lt at 100% oxygen. I don't even have to adjust his settings during the day - he just cruises along. We very rarely hear his alarms. He's been a sleepy little guy. He's starting to get a little personality - even starting to smile and coo. We are trying to schedule another BAER (hearing) test to re-evaluate his hearing. This should happen soon.

Kinnick came home on 1/2 lt at 100% oxygen. Her alarms sound a lot, and we were constantly adjusting her flow. By Friday morning, she was on 2 lt at 100% oxygen. We were having to suction her several times a day/night. She was on several breathing treatments, but we couldn't get her oxygen down to a reasonable level. We took her to the doctor on Friday morning and they sent her back to the hospital. She's back in the PICU at Wesley hospital. We were sad to send her back. The PICU is just full of sick kids and the germs are spread so easily in the unit. In fact, the reason she is back in the PICU is probably related to something she caught while she was in the PICU. She had been fluctuating a lot on her oxygen and had started spitting up a lot of mucus before ever coming home. It just got worse from one day to the next. They have tested her for several viruses, but nothing has come back positive. So, sounds like one of those "unknown" viruses. You know - the one they always say your child has when they don't know what's wrong. I'm not sure how long they will keep her. I would like her to be on a more reasonable level of oxygen before coming back home. Kinnick is supposed to get her Mickey Button on Monday. The temp G-tube looks terrible. It looks like a little rubber hose coming from her stomach with a pair of dull child size scissors to clamp it closed. The Mickey Button will be a little cap that just barely sticks up off her skin and is easily hidden. We are trying to schedule another BAER (hearing) test to re-evaluate her hearing. This should happen soon.

Please pray that Kinnick gets well soon, so she can return home with her family.

Tuesday, October 16, 2007

October 16th, 2007

Quick update..

Kinnick is doing amazing after her surgery. She is already on 1/8 lt flow at 100% oxygen. She is now on less oxygen then Carver. The doctor said that it is possible that she won't even need extra oxygen in the next couple of weeks. It's so hard to believe that her breathing problems were caused by acid reflux. With results like these in 1 day, I can't wait to see how good she is doing in 2 weeks. She came off the ventilator within a few hours of surgery and with very minimal swelling. The surgeon and doctors expected her to be on the ventilator at least 3 days. I guess Kinnick had different plans. She tolerated 1/4 feeds today. They will increase her feeds by 1/4 each day until she is on full feeds. Once she is tolerating full feeds, she can go home. The doctor expects both babies to be home the first part of next week!

Carver continues to do well. He is now on medication for his acid reflux and has not been spitting up. They have increased his calories to 30 cal/oz. They are trying to get his weight up. Kinnick looks huge compared to him and is only on 22 cal/oz. Carver was seen by the ENT yesterday. The ENT will fit Carver for hearing aides once he has been dismissed from he hospital. He doesn't feel like putting him in hearing aides while he is in the hospital would be a good idea - too much noise. He still believes that Carver has profound hearing loss. We will try the hearing aides for 6 months.

Thank you for all of your prayers! As always, they have been answered. We couldn' have expected anything more. Kinnick is doing fabulous! Thanks be to GOD!

Sunday, October 14, 2007

October 14th, 2007

Hello all!


Sorry it's been a while since I posted last. We made it back to Wichita safely. We celebrated 4 birthday's today. Hayden turned 2 on September 21st, Kirsten turned 18 on September 26th, Harrison turned 10 on October 2nd, and Bob turned 32 today! Wow, did we have a lot of cake! The cake was fun. Bob had a golf theme, Harrison had a football theme, Hayden had a Madagascar theme, and Kirsten had a Pirates of the Caribbean theme. The kids were such troopers waiting to celebrate their birthdays. We are blessed with very patient and understanding children. They really care about Kinnick and Carver and were happy to wait knowing this is what it takes to get their Brother and Sister home ASAP.






I met the ICU Pediatrician, Dr. Lindy Smith. I really liked him. He listens and acted immediately. Things are moving very quickly. An ENT (Dr. Harris) was in to see Kinnick Thursday evening. He confirmed that there is no block in her nose and the left vocal cord does not appear to function as well as the right vocal cord (meaning possible paralysis of the left vocal cord - this can repair over time). A surgeon also came in Thursday evening to evaluate Kinnick for a G-tube. An upper GI was scheduled and done on Friday to evaluate for G-tube placement. During the upper GI procedure, it was discovered that Kinnick suffers from significant acid reflux. The acid is causing inflammation of the esophagus which could be causing some of her breathing problems. Kinnick is scheduled for surgery at 7:30am CST tomorrow morning. She will get a G-tube and a stomach wrap procedure that will keep her from having the acid reflux problems. I am told that this should make a difference in her breathing within 2 weeks. While she is sedated, Dr. Harris (ENT) will come in and do a little more extensive research on her throat to see if there is any other obstruction besides the inflammation caused by the acid reflux. He will confirm whether or not scar tissue from the PDA ligation is causing an obstruction and the partial paralysis that we are seeing with her left vocal cord. I am told that the surgery combined with the add'l scope procedure could take 2 1/2 - 3 hrs to complete. Kinnick will be put on the the ventilator for the procedures. I'm told to expect her to be on the ventilator at least 3 days. The recovery is very painful. She will be sedated and will be given pain medication for at least 3 days. I was also told to expect a lot of swelling - similar to what we seen with her NEC surgery (intestines). This is going to be really hard for us. Kinnick has been doing so good lately. It will be hard to see a set back like this. However, this is the last step before Kinnick is ready to go home. In addition to all of this, they switched Kinnick from the high flow cannula to a low flow cannula. She seems to be much happier not having all of the high flow air blowing up her nose. To do this, they put her on 100% oxygen (same thing she will go home on) and just adjust flow as necessary. She has been on 1/4 - 1/2 lt flow.


Carver was also seen by a surgeon on Thursday. Nothing significant - he is just needing a circumcision. They wait to do this procedure until shortly before they go home. This procedure will be done early this week at the bedside with sedation. A nutritionist came to see Carver yesterday and added add'l fat to Carver's formula. They don't feel like he is gaining enough weight. Since we already have a hard time getting a minimum volume in him, it won't do any good adding add'l food. So, instead they're adding extra fat to the formula to increase calories. They have also put Carver on acid reflux meds. He spits up quite a bit a couple of times a day. They believe this is because of acid reflux. They have also started Carver on a diuretic drug. They believe between the diuretics and the acid reflux meds, his breathing will also improve. Carver was on diuretics when we went to Detroit. The Doctor's in Detroit cancelled his diuretics because they thought they were keeping him from gaining weight. We didn't see a significant difference in his breathing or his weight when the drugs were discontinued. We'll see what happens this time. Carver was also moved to a low flow cannula. He is on 100% oxygen at about 1/8 lt flow. We will see a different ENT tomorrow at 11:30am CST to start looking into Carver's hearing needs.


I am told that both babies should be home before the end of the month. They could be home in as little as 7-10 days.


Please pray that Kinnick will have the strength to recover quickly from this surgery. Please also pray for the Doctors and Nurses that will be caring for her. Please pray for the strength that Bob and I will need to make it through these last steps before taking the babies home.


Wednesday, October 10, 2007

October 10th, 2007

We will be flying back to Wichita at 9:00am (8:00am CST) tomorrow morning. I'm so happy to be going home, but sad to leave my new friends behind. I've met so many nice people during my 2 month stay in Royal Oak.

I'm told that we will not be going to the NICU at Wesley Medical Center. Instead, we will be going to the PICU at Wesley Medical Center. I'm nervous about the change. I really wanted to go back to the security of my Neo's and nurses that got us this far. However, I'm told that we have out-grown the NICU and need the experience of an ICU Pediatrician. I'm told that Wesley has a great ICU Pediatrician (Lindy Smith) on site that will work with Kinnick. Hopefully, he will be able to identify the cause of Kinnick's breathing problems. I really worry about her. They tell me the plan is to do whatever it takes to send Carver home ASAP. So, hopefully he'll be in our family home by the end of the weekend! We have a lot of work to be ready for him. You would think we've had plenty of time, but most of our spare time and energy has been focused on the babies health, insurance, moving into our new home, and family.

For all of our wonderful friends and family:
Thank you for being here for us through this journey.
Thank you for all of your love and support.
Thank you for all of your prayers.
Thank you for never leaving our sides.

It's been a long road and you've never forgotten about us. We thank God for all of you and his continuing blessings. God must have a lot of faith in us to give us these beautiful little angels.

Tuesday, October 9, 2007

October 9th, 2007 WBH NICU Pics



Carver 10/09/2007



Kinnick 10/09/2007

October 9th, 2007

Just a quick note....

The eye doctor cleared both babies to go home. So, hopefully we're back in Wichita by end of day tomorrow!!

Monday, October 8, 2007

October 8th, 2007



Miss Kinnick 10/8/07 and Sleepy Head Carver 10/8/07

Saturday, October 6, 2007

Kansas Medicaid - Travel Expenses

I'm posting this to help others. It has been a struggle to get Medicaid to pay for our travel expenses. I have been able to get them to commit to paying nearly all of my hotel expense and $10/day for food. They won't pay for my airfare, car, or taxi, but I hear that they will pay mileage if you drive.

The KEY is to call the number(s) below before you leave on the trip (unless it is an emergency).

1-800-285-4978 Option 4 (Transportation)
Let them know where you are going and how long you think you will be there. You will have to call every 2 wks to extend the time. They only approve 2 wks at a time.

1-800-285-4978 Option 2 (Out of State Prior Auth)
The doctor from the referring hospital/office and the doctor that you will be seeing will need to send paperwork for your approval. You can call this number to confirm this is getting done.

October 6th, 2007

We're just waiting for our Tuesday eye appointment. We're told that the plan is to send us back to the Wichita NICU on Tuesday. However, it is still possible that we will have to stay longer. Please pray that their eye exams go well and that we are able to go home.

Carver continues to do very well. Last night and today he's been a little crabby. I'm not sure what's bothering him. It's been a struggle to get him to eat his minimum amount of formula. Hopefully he'll be back to himself tomorrow. He continues to be on near room air on 1/2 lt of flow.

Kinnick still struggles with her breathing. The Beaumont hospital doesn't want to look into what is causing her struggles. They plan to leave that for the Wichita NICU when we return. They say that it will require a ENT to evaluate her and don't want to get something started in Michigan that will have to change hands when we return to Kansas. Guess that makes sense since we are supposed to be heading home next week. She still bottle feeds very poorly. The nurses always seem to have a reason (excuse) not to try to bottle feed her. This makes it difficult for her to start over after going nearly a complete day without trying. I've asked them to at least try during each feed even if she only takes 10ml. She needs the practice. Still doesn't seem to make a difference, because this isn't happening. Can't wait to go home and do it myself. Because of this, there is no doubt that she will require a G-tube for feeding in order to go home in the near future. The G-tube will not prevent me from bottle feeding her. I am confident that with consistent practice, she will learn to bottle feed and will not need the G-tube. It's too bad that the nurses won't do this for Kinnick. It's too easy for them to put her feed on a pump and do something else with their time. I'll quit talking about that - obviously it frustrates me.

I'm still working from my hotel. This seems to be going well. It makes for long hours working CST. I typically log in around 7:00am CST and log out between 7:00pm and 7:30pm EDT. I go to the hospital each night after work and visit the babies till around 11:00pm. However, this is much better then other options that were explored. Other options were quiting my job (can't do that because I need insurance), going back to Wichita to work and fly back to see the babies every other weekend (couldn't stand the thought of leaving the babies behind). So, this gives me the best of both worlds. I'm very fortunate to be able to work remotely.

I miss my family and friends. I can't wait to see everyone. It seems like it has been forever!

Tuesday, October 2, 2007

October 2nd, 2007

At least one more week in Detroit...

Eyes:
Carver's left eye is still a little sore and puffy. He didn't like having it touched and looked at by the eye doctor today. She really struggled to get a good look. He's a strong little guy. The doctor wanted to give it one more week before sending us home. Most of the blood is gone from his right eye. She was pretty pleased. The doctor will see him again on Tuesday. Our routine eye day.

Kinnick's eyes are looking good. The eye doctor didn't express any concern with Kinnick's eyes. The doctor will see her again on Tuesday.

Lungs:
Carver is doing amazing. He isn't requiring much oxygen. He spends most of the day on/or near room air (21%).

Kinnick is still struggling with her lungs. She's not requiring a lot of oxygen 35 - 45% most of the time. They have her on 2lt flow. She acts miserable with all of the flow. It dries her nose out and you can hear all of the air leaking out of her nose. Can you imagine how irritating that would be? Tonight, the nurse changed her to 1 1/2 lt flow and she did better. She rested easy and just seemed so much happier. Her oxygen needs remained between 35 - 45%. So, I don't think the flow is making any difference - other then making her mad. Several things were done today to get to the bottom of Kinnick's breathing problems. They did an echocardiogram today to look for cardiopulmonary disease. They did NOT find any disease. Tomorrow, they're going to do an EKG. They're just ruling out heart disease and making sure the heart is functioning properly with all of the lung issues she's had all of her life. They swabbed her nose to test for RSV along with a variety of other viruses. We should get those results back tomorrow. Tomorrow, they will discuss checking for pseudomonus (a form of pneumonia) since she has had a history of this in the past. They will also explore ways to determine if there is an obstruction in the lungs (possibly the scar tissue that I mentioned in my last couple of updates). They will also look into a different high flow cannula that provides more moisture.

RSV (Respiratory Syncytial Virus):
This respiratory virus is the #1 cause of hopitalization in babies under a year. Both babies were given a shot today called "Synagis". This is the only FDA approved medication to help protect babies at high risk from severe RSV infection. Each dose gives the babies enough RSV-fighting antibodies to help prevent a severe RSV infection for about 28 - 30 days. They will receive this shot once a month until April or May. This will not prevent them from getting the infection, but should cause it to be much more mild. It would be life threatening for Kinnick and Carver to get RSV.

Birthday news:
Today is my son, Harrison's 10th Birthday. Happy Birthday Harrison! I wish I could be there to celebrate the double digits. We'll have a big party when Mom and the babies return to Wichita.

Kinnick and Carver turned 6mths old September 29th. I can't believe they are already 6mths old. Wow, where does the time go?

Sunday, September 30, 2007

September 30th, 2007

Carver - Not a lot new going on with Carver. He spent most of the day on room air at 1/2 lt flow. His left eye seemed to bother him a bit today. The eye was watering quite a bit. I'm sure there was some pressure building up in the eye causing the drainage. The nurse gave him some tylenol and he was able to rest. The eye doctor will see him again on Tuesday.

Kinnick - She's still on about 30 - 40% oxygen at 2 lt flow. The increase flow doesn't seem to make a difference with her breathing. Dr. Baton thinks she has Stridor. He believes that sometime after the PDA ligation was done, scar tissue formed. The scar tissue is pressing on the vocal cord causing some paralysis. She will need to be scoped to determine if this is truly what has happened. If this is the case, it should resolve within 24 months. In the mean time, she will have difficulty breathing and feeding. She will also have a very weak cry. She doesn't make much sound - mostly just heavy breathing. It sounds like she is really working to breath. The eye doctor will also see Kinnick on Tuesday.

Friday, September 28, 2007

September 28th, 2007

Hello,

Carver was feeling much better tonight. They have taken him off his morphine. He is just on Tylenol, now - about every 6 hours. He was stiffer then normal today. I'm not sure why - maybe from sleeping so much the last couple of days. His oxygen needs are still down. He's been eating really good for a little boy recovering from surgery. We're really proud of him. I know he's been through a lot.

Kinnick is still struggling with her breathing. Dr. Baton said that it might be related to scar tissue from her PDA Ligation. He also thinks she might have partially paralyzed vocal cords. He said it would require a special scope to see for sure, but thought she would out grow it over time. They turned her liter flow up to 2 lt tonight. I don't think it made a difference, so I'll ask if we can move it back down tomorrow. The extra flow tends to irritate her nose and dry it out.

I wanted to mention a new set of 23 weekers in the Wichita NICU. They took Kinnick and Carver's place. There names are Olivia and Logan. They have had their share of ups and downs like all 23 weekers. Tonight Logan is really struggling and could use some extra prayers. They have a blog site that you can visit at http://www.oliviaandlogan.blogspot.com/.

Thanks again for all your prayers. I miss all of you!

Thursday, September 27, 2007

September 27th, 2007

Carver is doing better tonight. I can tell he is still in pain. They increased his morphine dose by almost 50%. However, he does appear to be doing a little better. His oxygen was down to 21% (room air) the entire time I was there tonight. He's at a 1/2 lt (blender). I'm told that this isn't providing much assistance at all. So, maybe he'll move to 1/4 lt soon! Sometimes they just go directly to room air with no cannula. We'll see what happens. I'm sure no change will take place until he recovers from surgery. He's been struggling with weight gain. He's only gained a little over a pound in the last 6-8 wks. Of course, he's had 4 surgeries, so I'm not sure what's expected. The doctors seemed a little concerned.

Kinnick is doing about the same. She's on 1 1/2 lt (blender) at about 35 - 45% oxygen. She still works pretty hard to breath. She took about 35cc via her bottle this evening (full feed is 84cc). She did pretty good. They keep taking her bottle feeds away because of how hard she's working to breath. Please pray that her lungs will improve. She hasn't made any progress over the past couple of months with her breathing.

My job has been very good to me. They have been letting me work remotely. This keeps me on the payroll and allows me to keep my insurance. I've had to take so much time of this year. The company has done more then ever expected. My co-workers (including people that don't even know me) have sent cards, phone cards, and a large amount of cash to help me. They pray for my babies and have put my babies on many prayer lists all over the world. We feel very blessed to be a part of such a wonderful group of people.

Please continue to pray for our precious little babies. They still need lots of prayers.

Wednesday, September 26, 2007

September 26th, 2007

Today is my oldest daughter, Kirsten's 18th birthday. I feel terrible not being home to celebrate with her. My son, Hayden celebrated his 2nd birthday September, 21st without me. I'm sure we will not be home in time for my son, Harrison's 10th birthday on October 2nd. However, I'm sure we will have a big party when we return home. There are so many sacrifices that we have to make. I always hope we're making the right ones.

Carver had his 4th eye surgery today. The surgery took 3 hours. They removed the vitreous gel from his left eye and replaced it with silicone oil (about 90% silicone oil and 10% saline). They also put in a buckle, using a sponge, on the back of his eye to push the back of the eye against the retina. The two of these combined are supposed to force the retina to lay flat so it can heal in place. Carver appeared to be in a lot of pain after the surgery and was still in quite a bit of pain when I left the hospital tonight at 11:00pm. They started giving him morphine every 6 hours along with tylenol every 6 hours. This way he gets something every 3 hours for pain. I felt so sorry for him. It was a completely different cry then normal. They have been able to place him face down on a little board that looks much like a small ironing board with a hole cut out for his face. It's important that he lay face down. This helps bring any blood to the front of the eye. The blood can later cause add'l scar tissue that will impact vision. It also allows the oil to do it's job of pressing against the retina. The oil seperates from the saline causing somewhat of a bubble similar to the air pocket they input in the normal vitrectomy procedure. The difference is that the air pocket lasts about a week before it's replaced with new vitreous gel, while the saline lasts much longer. This will help keep the retina in place while it heels.

Kinnick must have been having sympathy pains for brother. She had a bad day, too. Her oxygen needs were up and she refused her bottle all day. They had to do all her feeds via the NG tube. They also cancelled her PT and OTP therapy until she is feeling better. They have been trying to wean her Hydrocortizone and thought maybe they weaned too fast. So, they increased the dose to twice a day and gave her some lasics. She was doing good this evening when I left the hospital.

Carver is not gaining as much weight as they would like. After we get over this surgery, they will talk about ways to increase volume or calories.

Please pray that Carver will recover quickly and not have to suffer.

September 25th, 2007

The eye doctor seen both of the babies today. Kinnick's eyes both look really good, or as good as expected. Carver's remained the same. He will have surgery tomorrow at 10:00am.

Please pray that Carver's surgery goes well and that he recovers quickly.

Tuesday, September 25, 2007

September 24th, 2007

Hello again,

The eye doctor will see Kinnick and Carver tomorrow morning. I'm hoping that Kinnick's eyes still look good and Carver is ready for his 4th eye surgery tomorrow.

I wanted to mention all of the nice people that i've met here at the William Beaumont Hospital in Royal Oak. They're like my second family. I've gotten to know Stacy and David who also had 23 week twins - Conner and Braeden. Stacy invited me to see Conner the other day. They lost Braeden a few weeks after he was born. Seeing him brought back so many memories. I also met another couple, Liz and Mark. They were at the hospital with their little guy - Parker. He was also here for eye surgery. He was a 27 or 28 weeker. I've met a couple of very nice RN's - Sue, Peggy, Deb, Amy, and many more. Everyone has been so nice. Sue has even gone to dinner with me a couple of times. Talking to other moms and dads in the NICU helps cope with all of the struggles. There is something comforting about talking to others in the same situation.

Monday, September 24, 2007

September 23rd, 2007



Kinnick 9/22/07 and 8/24/07 After second eye surgery




Carver 9/22/07 and 8/22/07 After second eye surgery


Hello,

Update on the twin’s progress…

We’re still in Detroit. Kinnick has had 3 eye surgeries. Carver has also had 3 eye surgeries and will have a 4th surgery on Wednesday. Hopefully this will be the last. We are anxious to go home, or at least back to the Wesley NICU in Wichita.

Oxygen:
Carver is not requiring much extra oxygen – it won’t be long before he can say good-bye to the nasal canula. Kinnick still requires quite a bit of help from her nasal canula. She appears to like the color of an egg plant. When she’s mad, this is her color of choice. Hopefully, pink will become the color of choice in the next couple of months.


Seizures:
Carver’s most recent EEG showed that he is no longer having seizures, so he is no longer on the maintenance drug. This means both babies are now seizure free!

Brain Hemorrhages:
Carver is starting to display some questionable behavior. He continues to be very stiff and has started turning his left hand in a circular motion and opening and closing his hand. It appears to be very rhythmic. This could be a sign of a neurological problem related to the bleeds that he suffered, or it could just be something new that he has learned to do – maybe a nervous habit. I find this odd since his grade 3 hemorrhage was on the left side of his brain, so I would have expected odd behavior on the right side of his body. We’ll continue to watch this. Could be nothing.


Hearing:
Carver doesn’t appear to show any signs that he is able to hear. However, he did respond to some loud bangs (things falling) recently. I’m not sure if he was responding to the vibration or whether he heard the noise. In the past, he didn’t respond at all. So, it’s possible that his hearing is improving. I haven’t noticed a problem with Kinnick’s hearing. She appears to hear normal. Of course, this is based on my unprofessional opinion.

Bones:
We are still being very careful with the bones. Their bone health should be improving, but is not where it should be, yet.


Feedings:
Both babies are tolerating full feeds. They are still very weak, so they have a hard time bottling all of their feeds. Carver has been doing pretty good with his feeds. He has been able to get his minimum requirement in each day. This should keep him from needing a G-Tube. Kinnick is struggling with bottle feeding. She makes an effort, but is only able to take about 1/3 of her feed via the bottle. The rest is fed to her through an NG tube in her nose. This will need to improve before she goes home, or she will require a G-Tube.

Weight:
Carver weights a little over 10 lbs. Kinnick weights a little over 11 lbs. Kinnick is finally saying good-bye to her steroids, so hopefully some of her puffy cheeks and tummy will start to go away.

Eyes:
Carver’s third eye surgery that was done on September 12th went well. The doctor was pleased with the results and doesn’t plan to do any more surgery on his right eye. Carver’s left eye did not have any bleeding after the first surgery. However, last week they noticed that fluid was collecting under the retina. They waited a week to see if the fluid would resolve. Well, it didn’t. So, this means there is a tear in the retina that is going to require a pretty extensive surgery. If this is left untreated it will eventually cause retinal detachment. The surgery will involve creating a scleral buckle (an encircling silicone band that is sewn around the circumference of the eye). The scleral buckle will create a dimple on the eye wall. This will move the wall of the eye closer to the detaching retina. This alteration seems to allow the fluid which has formed under the retina to be pumped out, allowing the retina to re-attach. It also helps repair the torn retina. In addition, they will remove the vitreous gel (fluid that makes up 2/3 of the eye) and replace it with silicone oil. The silicone oil will press or force the retina back into place. While the oil is inside the eye, the vision is extremely poor. After the retina has resealed itself against the back of the eye, a second procedure can be performed to remove the oil. It will take 3 months for the retina to heal, so it will be a while before the oil can be removed.
Kinnick’s eyes appear to be stable, so there is no plan to do any more surgery. They will continue to monitor her. She will remain in Detroit until Carver is ready to return.

Activities:
Both babies really like to be held. They’re keeping the nurses pretty busy. They want to be rocked and like listening to voices. They are both getting physical and occupation therapy regularly.


Sleeping:
On a positive note, the hospital is doing a good job of training Kinnick and Carver to sleep through the night. They are sleeping 6-8 hrs most nights.


Thanks again for your many prayers and support. I will send an update as soon as I know more.

September 11th, 2007

Hello,

Update on the twin’s progress in Detroit…

It’s been a very long month. We arrived in Detroit Tuesday, August 14th. The babies eyes were examined visually the following day. The visual exam showed that all 4 eyes would require surgery. The extent of the surgery would not be known until a more extensive exam was performed under anesthesia. The more extensive exam and Surgery was performed on Friday, August 17th. During the exam, it was determined that the retina was starting to detach from all 4 eyes. The right eye appeared to be less damaged (both babies). So, they corrected the right eye for both babies Friday, August 17th. They do surgery on the best eye first. The surgery is very hard on the babies in their condition. They are put back on the ventilator for surgery and have to work to get their bodies back to the performance they were at prior to surgery. Future surgeries can not be performed until the baby is deemed stable enough to undergo another surgery. It may take a while for the babies to recovery from surgery allowing the eye disease to continue to worsen in the eye that has not been corrected. So, correcting the better eye makes the most sense. Carver handled the first surgery without any set backs. Surgery on his left eye was performed on Wednesday, August 22nd. Kinnick suffered some set backs, so surgery for her left eye was performed on Friday, August 24th. Due to the time lost, her retina completely detached in her left eye. The surgery was a little more extensive including removal of the lens and part of the Iris (an oversized colored contact lens will eventually take the place of the missing lens and iris). I am told that if all is successful, she still has a chance of receiving 20/60 vision in her left eye. If all goes well for the other 3 eyes, they have a chance of receiving 20/40 vision in those eyes. Kinnick handled the second surgery with no set backs. The Retinologists come to see the babies once a week (Tuesdays). This is to determine whether the eyes are healing properly. Unfortunately, the only eye that is healing properly is Carver’s left eye. Carver’s right eye has quite a bit of blood pooling in front of the retina. This prevents him from being able to see out of this eye. If the blood does not dissolve within 6-8 weeks, it will cause add’l scar tissue resulting in poor vision or lost vision. The Retinologist does not believe the blood will resolve in the next couple of weeks. Therefore, Carver will have surgery on his right eye Wednesday, September 12th to wash the blood from the eye (basically repeating the previous surgery). Kinnick has blood pooling in both eyes (more in her left eye). The Retinologists believe that it is still possible for the blood to dissolve on its own (doesn’t appear to be as thick as Carver’s). They are watching her eyes over the next 2 weeks. So, just a lot of waiting and praying. The babies are in the hands of the best Retinologists in the world, so we are confident that our outcome is the best possible. People come here from all over the world to have these doctors operate on their preemie babies.

Outside of the eyes, the babies continue to grow. Carver is now 9 lb 9 oz. Kinnick is now 10 lb 10 oz. We’re still working on getting both babies to bottle feed all of their feeds. Carver does pretty good with his feeds, but tires out quickly. Kinnick is still taking the majority of her feeds via the NG tube in her nose – mostly because of the amount of oxygen that she is receiving. Carver looks and acts so much like a newborn baby. He will quickly be released to go home once we are transported back to the Wichita hospital. Kinnick still requires quite a bit of oxygen, so until she gets a little bigger and has more lung tissue growth, she’ll have to remain in the hospital. However, I wouldn’t expect that to take much longer – she’s getting pretty big.

Our family is doing well. We have had a lot of help from family and friends – many of you. It’s hard being apart, but we all agree it’s for a good cause. I’m torn between being in Detroit with the babies and being in Wichita with the rest of my family. However, I’m comforted knowing that my children are at home with their father and Kinnick and Carver have their mother. Everyone has someone. In addition, I have made many new NICU friends who have been very supportive.

I know that Gwen sent a Thank You on my behalf for all of the wonderful cards, money, and the phone card. I just want you to know that we appreciate everything that all of you have done for us – you’ve done so much. Thank you.

Please continue to pray with us. I will send an update as soon as I know more.

August 31, 2007

I want to thank everyone who contributed to the donations that were sent to me last week, to help offset some of the expenses I'm incurring here, as well as the nice notes that were sent in the cards. This was very thoughtful, and very much appreciated. I had been told that something was being sent to me, so I had envisioned a care package full of junk food. I was initially a little disappointed when the package arrived and it wasn't a box, but instead a big envelope, that obviously didn't contain any junk food! :-) Seriously, it means a lot to me to know that so many people are helping me get through this. I also want to thank everyone for their prayers.

Both babies are doing pretty well, and they're basically just waiting until the eye surgeons are ready to release them back to Wichita. (The same surgeon didn't perform all 4 of the surgeries.)

One of the eye surgeons came by last Tuesday. The blood in Carver's eye that had surgery first seems to be going away. There didn't seem to be any blood in Carver's second eye, and the surgeon was really pleased with that.

Kinnick didn't have any blood left in the eye that she had surgery on first. The eye surgeon didn't offer much information about Kinnick's second eye, but I thought the doctor looked frustrated. The doctor's frustration was likely due to the fact that the air pocket had already dissolved. They don't want the air pocket to go away so quickly, since it helps hold everything in place. However, with the type of surgery Kinnick had to have on her second eye, they don't have much room for the air pocket. Therefore, it often doesn't last as long as it does with the type of surgery that was performed on the other 3 eyes.

Kinnick hasn't had any more apnea spells. She was taken off CPAP and put on nasal canula last Monday the 27th. She's been doing well on nasal canula. Since she is off CPAP, they've started trying to bottle feed her some again.

Carver has been doing well with his bottle feeding.

I was finally able to get a physical therapist and occupational therapist here to come see the twins. They have only done their assessment, and haven't started working with them yet. The therapist did provide some written information that I think will be helpful. It has some general guidelines as to what the babies should be doing at various ages, things to do to encourage them to develop their various motor skills, recommended toys to help them develop, how to tell if they start regressing on certain motor skills etc.

The other eye surgeon that performed Kinnick's second surgery (Dr. Micheal Trese) will see Carver and Kinnick again this Tuesday, September 4th. I'm really hoping that he will tell us that they can go back to Wichita, and then hopefully arrangements can be made to fly us back on Wednesday. It will only be a week and a half since Kinnick's second surgery by then, and the surgeon had mentioned that he would want Kinnick there for 2 weeks after her last surgery, but hopefully he will decide that they can go ahead and come home. The belief is that they'll be flown back to Wesley, and then the next steps will be determined.

As far as their eyes, the eye doctor in Wichita will check their eyes every week, for at least the next 5 weeks.

It looks like the hospital in Michigan is going to want Kinnick to come back for a check up in a couple of months. Kinnick will need to be admitted at least overnight. She might have to stay another week if they determine that another surgery is necessary, but of course we'll hope that won't become necessary.

So, hopefully this chapter in Michigan is almost over. As of Tuesday September 4th, we will have been in Michigan for 3 weeks now! It will be so nice to be back for a number of reasons. It will especially be great to get to see my other kids and for them to get to see me.

August 26th, 2007

Kinnick had her second vitrectomy surgery on Friday morning for her left eye. It was not good. The retina had completly detached. They had to remove the lens and part of the iris. We will likey be here 2 more weeks.

Since they had to remove the lens from Kinnick's left eye, she will be fitted for a contact lens within a couple of months, in order to try to get the contact lens to perform the functions that her eye's lens would have performed. Hopefully the brain will then try to use both eyes, instead of only working with the better eye. The contact will be larger than the ones that adults wear. Because part of the iris was removed, her eyes will be different colors. The contact lens will be colored though, so this shouldn't be noticeable when the lens is in. I heard that contacts work okay on babies (she'll likely get the kind that you leave in for a week.) Apparently once the babies are used to them, they even get upset when the contacts are taken out, since they can't see as well then. If Kinnick doesn't like the contact lens, glasses would be another option.

After her surgery, it would have been best if Kinnick could have been face down for the first 24 hours, so that any blood would come forward, lessening the risk of scar tissue. Unfortunately, since Kinnick was on CPAP, that wasn't possible. Hopefully that won't end up affecting the success of the surgery.

They won't really know for 6 months or so how well all of the eyes are doing. However, since Carver's eye surgeries, he seems to be looking everywhere and checking out everything, which is obviously a great sign!

The babies will be 5 months old on Wednesday! Carver currently weighs 8 lb. 15 oz. and Kinnick weighs 10 lb. 2 oz.

The babies' bones are still fragile and they have multiple fractures that are healing. Kinnick's humerus (big arm bone up by her shoulder) has a fracture, and she also has fractures in her hips and ribs. Carver doesn't have as many fractures, probably since he has been on better nutrition longer.

For the most part, Carver is acting like a normal baby, although I can tell that he isn't hearing. Carver should be ready to go home soon! I am definitely ready for him to get out of the hospital and feel comfortable that I can handle his needs.

Kinnick won't be ready quite as soon. Kinnick hasn't had any more apnea spells since last Thursday, but she still gets worked up and when she gets mad, she decides to hold her breath. Kinnick will also need to get back to bottle feeding, after she gets off CPAP and back on nasal canula full time. Kinnick has had several good days in a row, which is especially impressive since she just had surgery on Friday.

At the hospital in Detroit, they have a family room outside of the NICU, which provides a lot more opportunities to visit with other parents of preemies. (Wesley doesn't have this.) This has been a rewarding experience. I have been able to listen to what other preemies and parents have gone through and we've all been able to compare notes regarding how different hospitals handle various items. I am also able to share experiences that me and the babies have been through, which has provided a great deal of support and encouragement to other parents.

I'm glad we made the trip to Detroit, for the sake of the babies' eyes, but can't wait to get back to Wichita. Hopefully that will occur sometime in the next week and a half.

Sunday, September 23, 2007

August 24th, 2007

Carver had vitrectomy surgery on his second eye (left) on Wednesday. The surgery went well. The surgeries have only been taking about an hour, which is different from the 3 - 6 hours that we had originally been told that they would take. The outcome of this type of surgery ranges anywhere from 20/40 vision to no vision.

Carver seems to be bouncing back well from surgery. He was kind of crabby today, probably due to trying to get his digestive system going again after the anesthesia. He has been getting all of his feedings via bottles.

Carver will probably be cleared for release next Wednesday (29th.) Originally we had been told that it would take 2 weeks from surgery for the air pockets in their eyes to dissolve, but now she is being told that it should only take a week. The babies can't fly until the air pockets dissolve. Kinnick won't be ready for release as soon as Carver will be, since she hasn't had surgery on her second eye yet, but we believe they'll be willing to keep Carver until Kinnick is ready to be released.

Kinnick unfortunately has been struggling more. Saturday night Kinnick developed an infection and had a high temperature for a couple of days. The infection has caused her breathing to become much more labored and she has required extra support breathing. She has been jumping between CPAP and nasal canula. She also had two apnea spells today where she quit breathing, which of course was very scary. They don't really know why this happened. Because she has been on CPAP, she is not getting any of her feeds via bottles.

She also ended up with IV infiltrate around one of her ankles, which is a bad chemical burn caused by the IV not being inserted correctly.

Because of the infection she developed, Kinnick was not able to have her second eye surgery on Wednesday. It is tentatively scheduled for Friday morning (24th), but not sure if they will still do it on Friday, after today's two apnea spells, or if they will decide to wait until Monday for the eye surgery. The retina is completely detached on this eye (left). Kinnick will hopefully be cleared for release from the Michigan hospital one week after her surgery.

Both babies have had a few bleeds in their eyes after surgery. Carver has had more (6 drops) than Kinnick (1 drop), which is the opposite of what they expected. The blood usually gets absorbed on its own, but it can cause scar tissue, so they're monitoring this. After the babies come home, it is possible that they might have more scar tissue develop. If it does, they might have to go back to Michigan.

The transfer to Michigan has been a big adjustment. In addition to the doctors and nurses not being familiar with the babies like the ones at Wesley had become, they do things differently there. They don't believe in sedating the babies, don't believe in using suppositories, don't use the nasal canual in the same way (here they would get all oxygen, there they get some air mixed in also) etc. So the babies are having to adjust, without any weaning period to get used to these differences. The nurses there aren't nearly as concerned about cleanliness as the Wesley nurses are. Although we have met some nice nurses, there are others that don't seem to pay close enough attention to what is going on with the babies. We also mainly deal with the nurse practitioners and talk very little to the neonatologists, which we spoke to frequently at Wesley.

I am staying at a hotel and take a taxi to and from the hospital. I go to the hospital in the morning and stay there until about 7:00 p.m. each night.

It's been a very stressful and frustrating time, but we don't regret going there so the babies could have the eye surgeries.

I am very anxious to get back home to the rest of my family, my own house, Wesley hospital, and having fewer out of pocket expenses. Medicaid says they will possilby pick up some of the hotel expense and $10/day for food.

Carver will likely be ready to go home once the babies are transported back to Wichita, and I feel comfortable with him going home, but Kinnick will likely need a little more time at Wesley.


Your continued thoughts and prayers are appreciated. It's been a long 5 months.

August 17th, 2007

Carver and Kinnick each had surgery on one of their eyes on today. The retinas had started to detach on both babies. They each had surgery (vitrectomy) on their "better" eye, in order to try to take care of that eye first. The surgeries each took about an hour. They always put the babies on ventilators here at William Beaumont Hospital in Royal Oak.

After surgery, they both got off their ventilators quickly, although their oxygen needs were high. They're working to wean them back to where they were before the surgeries.

The doctors were pleased with the surgeries, but won't know for two weeks how successful they were.

The babies will each also have surgery on their other eye, possibly on Wednesday.

They put an air pocket in the eye to keep the retina secure. It will take a week for the air pockets to dissolve on its own. The babies won't be able to come home until the air pockets dissolve. So the sooner they have surgery on their other eyes, the sooner they'll be able to come home.

There is a risk of blood getting in their eyes, which would require additional surgery. Kinnick is at greater risk of this, since she has more vascular activity in her eyes. They didn't see any signs during surgery of this, but it could still occur after surgery. Hopefully it won't.

Please continue to keep Carver, Kinnick, and the rest of our family in your thoughts and prayers.

August 13, 2007

Quickly…

Just to let everyone know. I will be heading to Detroit with both babies tomorrow morning at 8am. They will be transported by air with medical staff. I will be on the flight with them. We will be at the Beaumont Hospital in Royal Oaks, MI. Dr. Michael Trese’s team will be seeing the babies. I am told that people are sent to him from all over the world. He has specialized in Vetreo-Retinal Ophthalmology for 31 years. Please pray for a safe flight for all and that Dr. Trese’s team is able to save Kinnick and Carver’s vision. Also, I am told that many times the surgery causes preemies like Kinnick and Carver to return to ventilators. Please pray that they bounce back quickly. I am told to expect to be in Detroit for several weeks. I’ll do my best to keep in touch.

August 11th, 2007

Hello,

Update on the twin’s progress…

Oxygen:
Kinnick and Carver are both getting extra oxygen via nasal canula. Carver is getting 200 – 250cc of extra oxygen. Kinnick is getting about 500cc of extra oxygen.


Seizures:
Carver is still on a maintenance drug to prevent seizures (however, they are not seeing many seizures based on a current EEG). Kinnick’s most recent EEG showed that she is no longer having seizures, so we are weaning her off the maintenance drug. It’s nice to be rid of one more drug!

Brain Hemorrhages:
Carver had his MRI. They were able to prove that the Hemorrhage that he suffered was not a Grade 4. Instead, it was a Grade 3. The difference is that a Grade 4 would indicate that the Hemorrhage went beyond the ventricle walls causing Brain tissue damage. His Grade 3 Hemorrhage stopped within the ventricle wall. The MRI did show the ventricles as still being larger then normal. I’m told this will not cause any additional problems – cerebral fluid is circulating like it is supposed to – no blockage. However, due to the Hemorrhages (he also suffered a Grade 2 Hemorrhage), the cerebral stem is smaller then normal (this will continue to grow as Carver grows). This will impact his Gross motor skills – meaning that he will show delays crawling, walking, riding a bike (balance), throwing a ball, etc. I’m told he is capable of doing these things, but these things will take longer then normal to learn. In addition, the brain (overall) does show some shrinkage. The brain will continue to grow as Carver grows. This will impact Carver’s fine motor skills – meaning that he will show delays in reading, writing, learning, etc. I’m told he is capable of doing these things, but they will also take longer to learn. The neurologist said that if he had to rate Carver’s damage or delays, he would say somewhere between MODERATE/SEVERE (scale being MILD/MODERATE/SEVERE/PROFOUND). So, it could be better and it could be worse. Overall, we were very pleased with their findings. Carver is already getting Physical Therapy (gross motor skills) and Occupational Therapy (fine motor skills). They will add Speech Therapy later. Kinnick is scheduled to receive her MRI on Monday. She suffered a Grade 1 and Grade 2 Hemorrhage at birth. I am told that Grade 1 and 2 Hemorrhages due not typically cause any lasting problems, so we are expecting good results.


Hearing:
Carver had his hearing tested (via BAER test). The test indicated that Carver has a severe hearing loss. Carver will be fitted for hearing aides (to amplify sound) right away. While these may not prove to help, we are required to try these for 6 months in order to qualify for Cochlear implants. I’ve heard many success stories about this implant. One example can be seen/heard at the following website http://www.laneyjane.com/AudioClips.htm. Kinnick had her hearing tested (via BAER test). The test indicated a MILD/MODERATE hearing loss. I have not heard the course of action for her, yet. Her hearing was tested late Friday and I have not had an opportunity to speak to the ENT or Audiologist.

Eyes:
Kinnick’s eyes have started getting worse – the retina is starting to detach. Carver’s eyes are still active, but don’t show much change. The eye doctor has recommended that both babies go to Detroit to be evaluated by an ROP specialist. We will know more on Monday.

Bones:
Both Kinnick and Carver have been diagnosed with Rickets. This is a brittle bone disease. Their bones can break very easy. Tthis should get better once they have been on full feeds for a while and are getting good nutrition. Carver is showing improvement. Kinnick will take longer to get over the problem since she hasn’t been on full feeds long.


Feedings:
Both babies are tolerating full feeds. They are still very weak, so they have a hard time bottling all of their feeds. The doctor has recommended G-tubes for both babies. The G-tube will be surgically inserting into the stomach and will have a tube (Mickey button (sp)) that will allow me to push (directly into the stomach) any fluids that they are not able to get orally. I will be able to bottle as much of the feeds as possible – this just gives me the ability to insure the babies get proper nutrition and will allow them to go home vs staying in the hospital until they are strong enough to take all feeds (which could be a very long time). This will also help during the coming cold season when the babies lungs are not strong enough to tolerate a cold and still have the energy to feed – keeping us out of the hospital due to dehydration which is common in micro-preemies.


Weight:
Carver weights 8 lbs 7 oz. Kinnick weights 9 lbs 7 oz. While Kinnick’s weight has not gone down much, she has lost at least a pound of fluid. She still has more fluid to lose, but it appears to be dropping. Hopefully, both babies will weight about the same in the next week or two.


Activities:
Both babies are starting to act more like full term newborns. The babies have also started getting to know each other – they are now sharing a baby bed. Kinnick appears to be a little jealous of Carver’s hair – I have caught her with her hand in his hair ready to pull. She doesn’t have much hair of her own. Carver isn’t sure what to think of his sister, but doesn’t like sharing rocker time with her. He wiggles and cries until someone else takes her, so he can have the entire rocker to himself. He’s in for a surprise when he finally figures out that he is not an only child (1 of 7). However, he is the baby by about 45 minutes.

I always save the big news for last….. If Carver does not go to Detroit on Monday or Tuesday, he will be sent to Mother/Baby where I will stay with him 24/7 (for at least 3 nights) to learn his machines (Oxygen, Apnea Monitor (in case he stops breathing or his heart rate drops too low), and G-tube feeding. The G-tube has not been inserted, yet. This may delay his release. They do not want to put the G-tube in until we are sure that he is not going to Detroit. If we go to Detroit, they will have the G-tube surgically placed if/when they operate on his eyes. They don’t want to put him under any more then necessary. After I (and the doctors) am comfortable that I can handle Carver and his machines, he will be released to go home. So, you will not see me in the office on Monday. I will either be on my way to Detroit or in a Mother/Baby room at Wesley Hospital. Kinnick should be able to come home shortly after Carver. Everything is dependent on the eye surgery in Detroit.

I will be checking email from home as time permits and will continue to keep everyone posted.

Thank you for all of your kind words, thoughts, and prayers! Thank God for his many blessings!

July 31st, 2007

Hello,

Update on the twin’s progress…

Ventilators:
Kinnick and Carver are both off the ventilators!! No more conventional ventilator or CPAP. This is Carver’s second try off CPAP. The first time (7/18/07) he made it about 3 days. He had to wait another week before trying again. He has now been off CPAP for almost a week. Kinnick was taken off her ventilator and put on nasal canula Saturday. It’s her 4th day and she’s doing great. It took a while, but we are finally able to hear Carver cry! What a relief. We were so worried that he might suffer paralyzed vocal cords due to the length of time on the Ventilator. It will be a while before we are able to hear Kinnick. However, we have heard a few squeaks, so we’re pretty certain that she will not have any damage.

Oxygen:
Kinnick and Carver are both getting extra oxygen via nasal canula. Carver is getting 200 – 250cc of extra oxygen. Kinnick skipped CPAP and is getting about 500cc of extra oxygen – pretty good for skipping CPAP. The doctors felt like the CPAP would add add’l gas to her already large tummy. So, they went to a little higher level of oxygen, instead. I’m being told that it is possible to go home on 250cc of extra oxygen. However, they would like to be at a little lower level to allow room if needed.


Seizures:
Carver and Kinnick are both on maintenance drugs to prevent seizures. They will continue to be on the maintenance drugs for quite some time.

Brain Hemorrhages:
Carver will receive an MRI this week. They will be looking at any damage that may be left behind due to the Grade 4 brain Hemorrhage that he received in his first couple weeks of life. Please pray that we receive good results.


Eyes:
We haven’t seen any change (good or bad) in the last couple of weeks. We are in somewhat of a holding pattern. It is not possible to remain in a holding pattern forever. Their eyes will either get better or worse. However, we are told this is viewed as positive. Typically if the retina is going to detach, you do not get a break. The deterioration continues without a holding pattern. So, we are hopeful that their eyes will start getting better. We are also told that once the babies get past 41-44 weeks, the retinas are less likely to detach (they are currently 41 weeks). However, we are still considered to be at high risk for having the retinas detach. The doctor will continue to monitor their eyes on a weekly basis.

Bones:
Both Kinnick and Carver have been diagnosed with Rickets. This is a brittle bone disease. Their bones can break very easy. This should get better once they have been on full feeds for a while and are getting good nutrition.


Feedings:
Kinnick is now on full feeds. We had a scare last Friday – her tummy size increased pretty significantly. However, the CAT scan didn’t reveal a problem, so they continued her feeds. It appears that the majority of her feeding problems right now are related to slow motility in her intestines/colon. They are trying to convert Kinnick to the same over-the-counter formula as Carver. This is a special formula made for preemies that provides add’l calories. This should help their bone health improve. Carver is still on full feeds and doing great. On Saturday, they starting trying to bottle feed Carver. He has been able to drink about ½ his feed in the allowed time (30 min). He will be able to go home once he is able to finish all of his feeds within 30 min. They only allow him 1 try a day, unless he does really well. They will not try to bottle feed Kinnick until she is completely converted to the new formula and showing no signs of tummy problems.


Weight:
Carver weights 7 lbs 14 oz. Kinnick weights 9 lbs 10 oz. She still has quite a bit of fluid as you can see in her picture, but she is starting to lose some of the fluid.


Activities:
Both babies have started physical therapy to help with motor skills and to stretch muscles that haven’t been stretched laying flat in a bed instead of curled in a fetal position for the past 4 ½ months. They appear to enjoy the therapy. It seems to be very relaxing. In fact, some of the therapy looks a lot like a full body massage – who wouldn’t enjoy that?

I’m attaching pictures of both babies – Carver’s first bottle and Kinnick’s first day off the ventilator. It is amazing how far they have come. God must have big plans for our little angles. Only 6% of 23 week twins make it home. The odds of at least one baby coming home who was born at 23 weeks is about 17%. Our babies will both be coming home soon! Praise God!

July 13th, 2007






Hello,

Update on the twin’s progress…

Ventilators:
Carver is now on CPAP! He was put on CPAP 7/2/07 and is now at the lowest pressure (4). His oxygen needs have been in the upper 30% to low 40% range. It is possible that he will be off CPAP in the next week. Once he is off CPAP, he will most likely be placed on nasal canula for his oxygen needs. This will not prevent him from going home. He can go home on nasal canula. However, they want him to be as close to room air as possible (21% oxygen). Once he is on nasal canula, his last step will be bottle feeding. Based on how well he is sucking on a pacifier, it is likely that he will not have problems learning to bottle feed. Kinnick has really struggled since her intestinal surgery. She is still trying to heal and is requiring extra help from her ventilator. She is at an air pressure of 27/6 and a rate of 24 breaths per minute. Her oxygen needs have been in the 40-50% range. She is still very puffy – weighting in at 8lbs 3oz. She should be weighting around 6lbs. In addition to her healing, she has gotten pneumonia, so this is causing some additional ventilator help.


Seizures:
Carver and Kinnick are both on maintenance drugs to prevent seizures. They will continue to be on the maintenance drugs for quite some time.


Eyes:
Carver’s eyes continue to improve. Kinnick hasn’t been as lucky. Her eyes are continuing to get worse. A second doctor was able to perform another surgery on her eyes, however they continue to get worse. They will continue to monitor her eyes to see if the disease stops or continues to get worse. If it doesn’t improve, she will be transported to Detroit to see another specialist. His job will be to save as much of the retina as possible. We are told that the success of this surgery is not very good even in the best of hands. However, any part of her retina that is saved will be better then no vision at all. Both eyes are equally bad, so we’re hoping to see improvement soon. Please continue to pray with us that her eyes will show signs of improvement.

Bones:
Both Kinnick and Carver have been diagnosed with Rickets. This is a brittle bone disease. Carver has some fractured ribs that are healing. Their bones break very easy. This should get better once they have been on full feeds for a while and are getting good nutrition.


Feedings:
Kinnick lost her feeds again earlier this week due to an increase in girth size. It appears that her large colon is full of stool and is not emptying. We are hoping things start moving soon, so she can get back to her feedings. Carver is still on full feeds and doing great. In fact, he is now on an over-the-counter formula instead of the easily digested preemie formula.


Weight:
Carver weights 6 lbs 4 oz. Kinnick weights 8 lbs 3 oz (mostly due to water retention from being sick).

Temperature:
Kinnick and Carver are both in regular baby beds and are maintaining their own temperature.

Activities:
Carver continues to demand more attention (acting like a healthy newborn!). He’s been spending some of his spare time sitting in a vibrating bouncy seat and looking at himself in a mirror. He enjoys being held. The nurses in NICU have been taking turns spoiling him with lots of rocking and holding time. He also enjoys time with a “Cuddler” that comes in to hold and rock him. “Cuddlers” are volunteers that come in to hold and rock the sick babies.

I’m attaching pictures of Carver “Big Day”. He was placed on CPAP 7/2/07. There are 4 pictures. The upper left picture is his bath prior to the big event (you can see his vent tube), the picture on the upper right shows them pulling the vent tube, the picture on the lower left shows him with no strings attached (his cheeks have healed), and the picture on the lower right shows him with his new CPAP gear.

I want to thank you again for all of your Thoughts and Prayers! I hope you will continue to pray for our little miracle babies.

June 29th, 2007

Hello,

Update on the twin’s progress…

Ventilators:
Carver’s ventilator is now set at an air pressure of 21/6 and a rate of 15 breaths per minute. His oxygen needs have been in the mid 40% range. His doctor is starting to think about putting him on CPAP. He said that he would like to see his air pressure at 18 or 19. Hopefully that will happen over the next week. He was at 20/6 and a rate of 15 prior to his ROP surgery, but was set back quite a bit over the last week while recovering from the surgery (mentioned below). Kinnick has really struggled since her intestinal surgery. The incision split open after just a few days allowing her intestines to spill out of her body. She was rushed in for another surgery. The second surgery really set her back on the ventilator. She was put on the High Frequency ventilator that Carver was on for so long. Within a week, she was moved back to the conventional ventilator and has since come down to an air pressure of 24/6 and a rate of 20 breaths per minute. Her oxygen needs have been in the 40-50% range. She is still very puffy – weighting in at almost 7lbs. She should be weighting around 5lbs.


Seizures:
Carver and Kinnick are both on maintenance drugs to prevent seizures. They will continue to be on the maintenance drugs for quite some time.


Eyes:
Carver was diagnosed with the same preemie eye disease (ROP) that Kinnick was diagnosed with and had to undergo the same surgery about a week ago. Carver’s surgery was a success and his eyes have already started to improve. Kinnick hasn’t been as lucky. Her eyes are continuing to get worse. The eye doctor here has done all he can to save her eyes. It is just a waiting game over the next week to see if the disease stops or continues to get worse. If it doesn’t improve over the next week, she will be transported to Detroit to see another specialist. His job will be to save as much of the retina as possible. We are told that the success of this surgery is not very good even in the best of hands. However, any part of her retina that is saved will be better then no vision at all. Both eyes are equally bad, so we’re hoping to see improvement over the next week. Please pray with us that her eyes will show signs of improvement over the next week.


Feedings
Kinnick started feeds again this week. She is up to about 1/3 of her feed volume. Carver is almost back on full feeds. His feeds were taken away briefly due to suspected intestinal problems.


Weight:
Carver is weighing in at 5 lbs 4 oz. Kinnick is weighting in at 6 lbs 14 oz (mostly due to water retention from surgery).

Temperature:
Carver is still in his big boy bed (a real baby bed) and is maintaining his own temperature. Kinnick is doing better maintaining her own temperature, but due to surgery and recovery, she remains in her temp controlled bed. Once she is feeling better, she’ll be moved to a big girl bed.

Activities:
Since Carver is no longer being sedated or on pain medication, he has started demanding attention. He’s been spending some of his spare time sitting in a vibrating bouncy seat and looking at himself in a mirror. He’s also been naughty and removed his own feeding tube. Another favorite is to pull his vent tube out (something that he’s been successful at in the past), so he lost his tummy time.

We’re counting the days. Their due date is 7/22/07, so we’re getting closer. We realize they won’t go home on their due date, but we’ve got to be getting closer to the actual day they come home. Still hoping they’ll come home within a month of their due date.

Thank you again for all of your Thoughts and Prayers! The babies are thriving because of God’s many blessings!

June 14th, 2007

Hello,

Just a quick update on the twin’s progress…

Ventilators:
Carver’s ventilator is now set at an air pressure of 24/6 and a rate of 21 breaths per minute. His oxygen needs have been in the mid 40% range. While this may seem like very little change, it is significant. He only needs to be at 22/5 with a rate of 20 to move to CPAP. So, we could be there very soon. We are all very excited about the progress that Carver has made. He has exceeded everyone’s expectations. Kinnick has had some significant setbacks this week. Her feeds were taken away last week due to an increase in her stomach measurements. After some extensive testing that involved an upper and lower GI and a series of sonograms and x-rays, it was discovered that she had a block in her intestines. We had to stop her feeds. This was disappointing because she finally reached full feeds again. Because of the block, she had to undergo surgery to remove the damaged part of the intestines. We were very lucky – they only removed about 3cm of intestines. The block was where the large intestine meets the small intestine. They removed some from both the large and small intestine. While they were in there, they removed her appendix. She has a large scar from her belly button to her mid right side. She handled surgery very well. However, she is retaining a great deal of fluid (weights 6 ½ lbs) and is requiring a great deal of help from her ventilator. She is currently at an air pressure of 38/6 and a rate of 28 breaths per minute. Her oxygen needs have been in the 30% range. Her brother has passed her for the first time! I’m told that things should start looking better over the next couple of weeks.


Hemorrhages:
Carver’s grade 4 hemorrhage has resolved, however the damage left behind will not change. There was some brain tissue damage that leaves a very large possibility that he will suffer Motor Skill problems and Cerebral Palsy. I’m told the % of this happening is 75%. I am optimistic that we will be in the 25% without problem (why not, we’ve beaten the rest of the odds). Carver’s head size has reduced significantly (normal size, now), this is a very good sign that the ventricles that were filling with fluid are no longer filling with additional fluid and may have actually decreased in the amount that was already collected. He will continue to be monitored and will have an MRI once he’s a little older to determine expectations from the damage.

Seizures:
All 23 weekers will experience seizures. Carver and Kinnick are both on maintenance drugs to prevent seizures. We haven’t seen any seizure activity for several weeks. They will continue to be on the maintenance drugs for quite some time – easily a year or longer.


Eyes:
Carver and Kinnick have been being tested for ROP on a weekly basis. This is a preemie eye disease that causes the retina to detach from the back of the eye. Kinnick has a pretty severe case, so she had laser surgery this morning to stop any additional damage. The surgery is 70-80% effective. If they are able to stop the damage, she will only suffer peripheral vision damage, otherwise she could be blind. I am told that it is rare if they end up with a blind baby. They are usually successful in saving at least one eye. We will not know if the surgery was successful for a few weeks or longer. I am also told that it is highly likely that Carve will require the same surgery.


Heart:
Carver is no longer requiring drugs for a low heart rate. This is attributable to him being off the High Frequency Ventilator, and not requiring as much sedation. In addition, the fact that he is no longer retaining extreme amounts of fluid.

Feedings:
I mentioned above that Kinnick is not feeding due to the intestinal block. They are hopeful that she will be able to start feeds again the first of next week. Carver is now on full feeds and has been problem free!

Weight:
Carver is weighing in at 4 lbs 15 oz. Kinnick is weighting in at 6 lbs 9 oz (mostly due to water retention from surgery).

Temperature:
Carver has learned to maintain his own temperature and was put in a big boy bed (a real baby bed) last night. Kinnick is capable of maintaining her temp, but is having difficulty due to the surgery and the demands of recovery. She remains in her temp controlled bed. Once she is feeling better, she’ll be moved to a big girl bed.

Now, for the big news!! I got to hold Carver for the first time last night! I thought the day would never come! I didn’t want to put him back in his bed. He looked so comfortable and happy. He’s doing so well, I’m told that I should be able to hold him whenever I want – short periods of time. We have to work up to longer periods based on how well he does with handling.

Once again, I can’t tell you how blessed we are! Thank you all for your Prayers!