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.

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!

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.

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.

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!!