Monday, July 26, 2010

Monday, July 26, 2010

Today I had another doctor's appointment. The ultrasound went just fine. His heart still looks the same and the amount of amniotic fluid stopped its spike and is in the normal range. We passed another non-stress test too. So far, there are no concerns for complications or early labor.

We got notice from the new insurance company in writing that our coverage will start on August 15th. That is a huge relief! Now I just need to check to see if we need any kind of pre-approval for any of the hospital stuff.

Today was also a milestone day. When we met with the baby's surgeon, he told us that if we could get the baby to 36 weeks, he would be able to work with him. Today, we hit 36 weeks. All of us would benefit from the last three weeks, but at least we are to the point where he is viable for the surgery!

Yesterday we sang "Because He Lives" at church. The second verse is "How sweet to hold a newborn baby and feel the pride and joy he gives, but greater still, the calm assurance, this child can face uncertain days because He lives!" I figure that this pretty much sums it up!

Countdown: Three weeks

Jen's email address:

Thursday, July 22, 2010

Thursday, July 22, 2010

I had my doctor's appointment on Tuesday this week. Once again, we were successful with the non-stress test. The secret is the grapes! I was having a few contractions, but they aren't accomplishing anything, so there is no major concern.

I had a quick ultrasound to check on the baby's heart. His heart rate is still great, there is no new fluid around his heart and everything looks like expected. He is head down now, so as long as he is not a professional contortionist, we don't have to worry about him flipping to a breach position.

I have another quick ultrasound scheduled with my appointment next week. The amount of amniotic fluid is higher than it was previously, but still in the normal range. The doctor wants to make sure that there are no kidney issues. She didn't seem overly concerned, just wanted to keep an eye on things.

This week, I talked to another Alto Elementary parent whose child has Tricuspid Atresia. Go figure, a really rare heart condition and there are two children within 5 miles of each other! She gave me some great advice about the situation in general and about surgery in Ann Arbor. Like everyone else we have talked to, she highly recommended Ann Arbor with no reservations. Talking with her was wonderfully reassuring. I have seen her child for the past two years and had no idea!

Countdown: Less than four weeks

Friday, July 16, 2010

Friday, July 16, 2010

We think we might have our insurance problem solved! Wednesday afternoon, I got a phone call from our insurance agent telling us that he had been told that the University of Michigan started participating with our new insurance on June 1st. I checked online and as far as I could tell, the pediatric cardiologists were listed as participating and so was the hospital, but the surgeons were not. I called the social worker at the U of M and she said that she would look into it. I got an email from her today that U of M started participating on July 1. I am assuming that our problem getting accurate information is due to the timing of the change.

Because we have not yet received our new insurance and are not able to check the exact policy and what we will be facing, we are still guarded. Things do look very promising though.

Phil and I would like to thank everyone for their help. We have had friends, family, colleagues, friends of friends, etc. giving us ideas. All of this information has been incredibly helpful. Come to find out, there are programs for middle income people facing these situations, but you usually don't find out about them until your child's treatment begins. We have gotten a great deal of help from our insurance agent, Dan Urich, from our State Representative Dave Hildenbrand and his assistant Jen and our social worker at U of M, Barb Shaltis. There is no way that we could list all of the other people that have helped us out over these past few weeks. You know who you are and we will never forget what you have done for us!

Tuesday, July 13, 2010

Tuesday, July 13, 2010

The baby and I are getting the hang of non-stress tests! I sit in the chair and when the nurse leaves, I eat a bunch of grapes. Ten minutes later, the baby is flipping out all over the place. He is getting big enough now that he can't get too far from the monitor. This week we finished the test in 30 minutes. I should have guessed that food would work. He is obviously related to Ella, Sam and Maeve!

We are making peace with our insurance issues. We will switch to the new insurance, but proceed with Ann Arbor for the delivery and the first surgery. Our current insurance will cover us at Ann Arbor and should be in effect until September 3rd. We will deal with the second surgery later.

I now have a contact for someone in Grand Rapids that went to Detroit for surgery for her baby. I haven't called her yet, but have been told that the surgery was successful and that they were happy with the care. It is much less scary when you can get information from someone with firsthand experience. Thanks for all of your help and prayers!

Countdown: 5 weeks to induction

Friday, July 9, 2010

Friday, July 9, 2010

After three more hours of research today, we are making some insurance progress. It is not all good, but it is progress.

1) Our current insurance will be in effect until September 3rd if they do not go out of business before then. Based on the information I have found, they are not expected to. This would mean that we could get the first surgery at U of M by using both insurances until the old one runs out.

2) Even if we were to get our address changed, the new insurance will not allow us to choose the network our doctors participate with. Our policy is only transferable as is, with no changes.

3) The new insurance is actually decent with the exception that none of our current doctors are in network. We can continue with our doctors (the pediatrician the kids have all gone to since birth and U of M doctors) if we want to pay the higher deductible, higher percentage after the deductible is satisfied and higher total maximum out of pocket costs.

The tricky part of all of this is determining if we are being hard-headed about U of M. We should have no insurance problems going to the hospital in Detroit and the new insurance should pay with no problem. However, my gut tells me that fighting for U of M is worth it to provide the best possible care for our baby. I am sure that the hospital in Detroit has the capability to provide the care we need, but is "capable" enough when you are dealing with the life of your baby? I am going to talk to my obstetrician on Monday and get her opinion. I will keep you posted.

Thursday, July 8, 2010

July 8, 2010

I had my doctor's appointment on Tuesday. The baby and I are getting better at non-stress tests. This time, it only took us an hour instead of our previous 3 1/2 hours. This week, he has been very active. Tuesday was no exception. Perhaps they can invent a multiple monitor system for babies that do not like to stay in monitoring range!

The reason this post is late is that we have been spending every free moment trying to figure out our newest insurance mess. Did you know insurance companies can go out of business? They can! We got a notice a couple of weeks ago that our insurance company (American Community) was in financial difficulty and was being "rehabilitated". The State of Michigan worked out an agreement with Golden Rule insurance to accept American Community's individual policy holders. When we got the notice, I looked online to see if all of our U of M doctors participated with Golden Rule. They do participate with one network within Golden Rule, so I thought we would be all set.

Friday we got our information from Golden Rule with the details on our possible policy. We were gone all day Friday, so it was evening when I was able to get online to check the information. From what I found, we were ineligible to be part of the network that accepted our doctors. Because of the holiday, I was unable to talk to a person until Tuesday. After a little meltdown Friday night, I was doing better on Saturday. On Sunday, I taught Ella and Sam's Sunday School class and told the kids the story of the Israelites wandering in the wilderness for 40 years because they did not trust God that he would take care of them. I realized that God has taken care of us so far, and I had no reason to doubt he would this time. Sometimes you really do learn all you need to know in Sunday School!

On Tuesday afternoon, I called Golden Rule to determine if our doctors would be partipating. The woman on the phone told me that they weren't and that we should ask the surgeon (the same amazing man we were so impressed with last week) to refer us to another doctor at another hospital that would be in the network. The fact that we have already met with U of M and gone through all of the pre-surgery preparation (and paid for it with our own money) was irrelevant. I asked if we could shop other insurance companies and she told me that other companies would consider the heart defect as a preexisting condition and it would not be covered. She informed me that this kind of surgery would be "very expensive". You have got to love a system like that! Tuesday night resulted in a second meltdown.

On Wednesday, I called the old insurance company, the new insurance company, the U of M social worker, and the State of Michigan office in charge of the rehabilitation. Other than the U of M social worker, everyone said that we should just give up on U of M and move on. The only other hospital I can find that is capable of performing the surgery is the children's hospital in Detroit. Phil and I don't feel this is an acceptable option (and neither does anyone outside the insurance industry that I have talked to).

To be part of the agreement the state has worked out with Golden Rule, we have to be on their insurance by August 15th. My induction date is August 16th. We were told by one person (after he told me we couldn't ten minutes earlier) that we could keep our old insurance until it runs out or until the company is liquidated and be on the new insurance at the same time. We have paid our policy up until September 4th, so as long as this information is correct and the company does not fold before this date, at least the first surgery should be covered and my maternity care deductible should still be in effect. By the way, when you are forced to switch insurance because the company is going out of business, all of your previous deductibles are ignored and you start over.

After more research and phone calls, we found out that we could be part of the network that our doctors participate with if our zip code was Clarksville. The next mailbox approximately 300' to our east is a Clarksville address. When we built our house, we were given the option of an Alto or Clarksville address. We picked Alto. We are now trying to find out if we can change our address to Clarksville or convince the insurance company that we should be able to be waived into the proper network. I tried to get an exception when I talked to the company on Wednesday, but had no luck. As far as I can tell, other than the fact that we don't fit their arbitrary rule, there is no difference to the insurance company which network we are in.

The social worker at U of M has been helpful. There may be a program that will allow us to go to the U of M because some genius realized that insurance companies pay less when patients are treated in the best hospital available. They get better care and get out of the hospital sooner with fewer expensive complications. U of M is a "Center of Excellence" for Congenital Heart Defects. There is also a state program that can help with some of our costs if we have to go out of network to go to U of M.

So far, nothing has been determined and all of the information we have is based on someone's opinion. We feel like we are making some progress, but it would be nice to have this all solved before the baby comes and have some reassurances that the costs will be covered. We really appreciate your prayers at this time. We have decided that if given the choice of having a baby with a good chance of being healthy and growing into adulthood or having good insurance coverage, we would still rather be where we are now!

Thursday, July 1, 2010

Thursday, July 1, 2010

Today we had our marathon of appointments in Ann Arbor. This will be another long post, but the abridged version is that everything went well and once again, we were very, very impressed with all of the people we dealt with.

As you may have noticed, I did not post from my appointment on Tuesday. So, in typical Jen fashion, it's here, but late. Once again, the baby did not feel like participating. If the nurse buzzes him with the noise/vibration stimulator, he jumps and wiggles, but his heart rate never goes very high. He will move and wiggle, screwing up the monitoring, but never provides the nice rise and fall they are looking for. This week there were no major contractions though, so that was promising. The doctor is not necessarily concerned about the less than stellar performance of the non-stress test. The baby may be too young still or too mellow.

Now for today's news. We got to Ann Arbor for our first appointment at 8:00 am. We met with the genetic counseling department. We found out that the heart defect is probably due to "multifactoral" conditions. This means that we have ruled out the chromosomal causes and the most common gene related causes as a result of our normal amniocentesis results earlier this spring. Because I had no exposure to any teratogenic things (x-rays, chemicals, drugs, etc), that leaves the multifactoral cause. The general idea is that a bunch of little things happened at the same time the heart was forming to cause the defect.

Our second appointment was with the obstetrics department for an ultrasound. The baby is measuring exactly on schedule (to the day) and is estimated to weigh 4 pounds, 4 ounces. Everything looks great with the exception of his heart.

Our third appointment was with the obstetrics doctors. They have scheduled an induction for August 16th, when the baby is 39 weeks old. If I go into labor before that, we will check in with our local doctor or the hospital to determine if we make a mad dash to Ann Arbor or if we stay here. This is a great compromise as far as we are concerned. If the labor is induced, we will most likely go to Ann Arbor in the afternoon or evening of the 16th and hopefully, the baby will be born on the 17th. This will be one day before Maeve's birthday. If you are counting, that will mean we have a boy and girl birthday in February and a boy and girl birthday in August. Now Phil and I will never get the right birthdate for the right kid.

After our appointment, a nurse took us on a tour of the floor where the baby will be born. We will move to a traditional delivery room (where they do Cesarean sections) because they are located right next to the Neonatal Intensive Care assessment area. If he is pink and doing well, we will get to spend some time with him before he goes to the NICU. He will then stay in the NICU until his surgery.

We finally finished up at around 12:30 and headed to lunch before our next appointment.

Our next appointment was with the Pediatric Cardiologists. They did a fetal echocardiogram and determined that everything looked the same as last time. There were no changes and no new problems. We finished early and headed off to meet with the Pediatric Cardio-thoracic surgeon. They even got us in early!

The surgeon was VERY impressive! He walking in and introduced himself as "Rick". He gave us his email address and told us to contact him if we have any questions. He told us that he does the work that he does because he loves it. He explained the condition and how he would fix it. The overall picture was the same as we learned previously. While it is a serious heart condition, it is not unusual or especially tricky to fix.

The first surgery will probably be between two to seven days after the baby is born. The surgeon said that he will probably perform the pulmonary artery banding instead of the shunt. The baby looks like a good candidate and the surgery has fewer complications. He told us that the recovery time was around 10 days. The baby will go to the Pediatric Cardio Thoracic Intensive Care Unit (PCTU) until he is stable enough to be moved to the general care area. The surgeon said that if I can carry the baby until at least 36 weeks, we should be in good shape. That is only three and a half weeks from now!

When we finished, the Pediatric Cardiology social worker took us on a tour of the PCTU and the general care area. In the PCTU, the nurse/baby ratio is 1 to 1. When the general care area, a parent is allowed to stay overnight in the room and take over the majority of the standard care for the baby. This is when we can start trying to get him to eat properly and get him ready to go home.

We found out that we will be able to be with the baby anytime we choose to, as long as they are not performing a procedure on him or the babies around him. This was a huge relief for me. Siblings are even allowed to visit in the intensive care areas if they are healthy. We have been pleasantly surprised by the concern for the entire family, not just the clinical health of the baby. We toured the family area as well. There is a craft room that has a three hour program for siblings each day and an outdoor play area located on the rooftop of 7th floor.

We are not scheduled to go back to Ann Arbor until we go for the induction. The obstetrics people said that they only wanted to see me if the cardiology people were having me back. The cardiology people only wanted to see me if the obstetrics people wanted me back. No one really wanted to see me, so we don't have to go back!

Before we left, we went to the Ronald McDonald house and asked to be put on the waiting list. They have 29 rooms, charge only $10 per night and are located about a ten minute walk from the hospital. The place was wonderful. About five nights per week, community groups, churches, etc. bring in dinner for the residents. There is a large communal kitchen and dining area. There are refrigerators and lockers to store supplies. There are family areas, a game room and a playground. Hopefully, we will be able to get in and stay there.

We left Ann Arbor feeling more hopeful than we have in a long time. We are even going to let Ella, Sam and Maeve pick out an outfit to bring the baby home in. Considering the rollercoaster this pregnancy has been, this is a major milestone. We know that we have a lot of trials and tears to come (we didn't make it without tears looking at other people's babies today!) but we have hope and feel that we couldn't be getting any better care. God has taken care of us this far, and we know that however this turns out, he will continue to be with us and give us the strength we need. We have been blessed with a family and friends that other people only dream about and we truly want to thank you for your thoughts and prayers!