Tomorrow we will head out early. First stop, Hannah's pediatrician to check on her cyst infection. Lord willing, they will find it remarkably better, or they may decide to hospitalize her. She is still a bit swollen, but not near like Saturday. The cyst is painful and hard to the touch. I'm hopeful we won't need to do the hospital route.
Then we will go to the hospital for a consult with the NICU team. We have a lot of questions about what to expect with a baby in the NICU for a couple weeks.
Finally, we'll have my non-stress test where we hope Melody will continue to be her usual active self and make her required heart accelerations in a small amount of time. If all goes well we can be home by naptime.
The patient relations representative at the Loma Linda was wonderful. She was able to clear up the insurance issue. (Yes, we have our current insurance through Sept. 1) She also had the ENT office call me within minutes. They were very nice and apologetic about the day before though it really isn't their fault if the computer gives them faulty information. Hannah now has an ENT appointment on the 24th. Her pedicatrician spent several minutes on the phone discussing the thyroglossal cyst. She feels that for now, we focus on getting rid of the infection before Melody arrives. The cyst will most likely need to be removed, but the ENT will decide that. It sounds like that will be elective, in which case we will probably try and do it over Christmas when the kids have 3 weeks off of school and Kevin is less busy at work. Not to mention, Melody will be much older.
Wednesday, August 12, 2009
Monday, August 10, 2009
Melody's Growth and Great Frustrations
This afternoon we had a NST, doctor visit and ultrasound. Melody is estimated to be about 4 pounds, so that is over 1 pound growth in the last two weeks. She continues to measure very small (not even in the 5%), but the doctor was encouraged that her growth continued upward. Her head is measuring the smallest, which is interesting as it could be very enlarged from hydrocephaly. All else looked as it should at the appoinments. We will return Thursday for another NST and a consulation with the NICU (neo-natal intensive care unit).
This morning took me from a completely relaxed state after our two nights away to completely stressed out. I simply attempted to call the ENT and schedule Hannah for her visit this week as specified by urgent care. I also have a referral for this appointment. However, the ENT office informs me that out children's medical insurance was no longer effective as of JULY 1st! No, I tell them, that is not true. I just went through all this yesterday with the pharmacy. Apparently, Loma Linda has decided they no longer accept out insurance. However, I have been told that occurs on Aug. 1st, then Sept. 1st and now July 1st. I have already put in a request with CA Healthly Families to change our children's insurance to one Loma Linda DOES accept, however, that does not happen until Sept. Anyway, they refused to make me an appointment and wouldn't even let me pay cash for one as my kids are on a state program and they could get into trouble for accepting cash. So... I am still trying to sort the whole mess out. Blue Cross says I have an EPO, and can see any doctor I wish. I was especially irritated that Hannah's pediatrician and the provider relations person at Loma Linda did not deem it necessary to call us back today.
Pray for me as I hit the phones again in the morning. I am in tears in short order, which doesn't help me to calmly and rationally explain and work with the insurance company and doctors. Pray that they will return calls and that this can be sorted out. I think I can take Hannah to an ENT in Riverside with our insurance, but I know transferring her CT scans, etc from Saturday will be another huge mess. And then, if this becomes an on-going issues, she will have been seen initially by a doctor who won't be following up with her. Due to Melody's needs we have to be with Loma Linda for the Spina Bifida clinic and all the kids have to have the same provider.
Hannah's neck is still swollen, though it is smaller. I had hoped it would look better than it does by now. It is very hard and painful to the touch. She is not eating well as swallowing hurts her. I would really like to talk with a doctor this week and find out what their plan is. I have no idea if this is something that can wait or if it is more urgent. Of course, if it doesn't get smaller and clear up with the antibiotics, then it is more urgent.
This morning took me from a completely relaxed state after our two nights away to completely stressed out. I simply attempted to call the ENT and schedule Hannah for her visit this week as specified by urgent care. I also have a referral for this appointment. However, the ENT office informs me that out children's medical insurance was no longer effective as of JULY 1st! No, I tell them, that is not true. I just went through all this yesterday with the pharmacy. Apparently, Loma Linda has decided they no longer accept out insurance. However, I have been told that occurs on Aug. 1st, then Sept. 1st and now July 1st. I have already put in a request with CA Healthly Families to change our children's insurance to one Loma Linda DOES accept, however, that does not happen until Sept. Anyway, they refused to make me an appointment and wouldn't even let me pay cash for one as my kids are on a state program and they could get into trouble for accepting cash. So... I am still trying to sort the whole mess out. Blue Cross says I have an EPO, and can see any doctor I wish. I was especially irritated that Hannah's pediatrician and the provider relations person at Loma Linda did not deem it necessary to call us back today.
Pray for me as I hit the phones again in the morning. I am in tears in short order, which doesn't help me to calmly and rationally explain and work with the insurance company and doctors. Pray that they will return calls and that this can be sorted out. I think I can take Hannah to an ENT in Riverside with our insurance, but I know transferring her CT scans, etc from Saturday will be another huge mess. And then, if this becomes an on-going issues, she will have been seen initially by a doctor who won't be following up with her. Due to Melody's needs we have to be with Loma Linda for the Spina Bifida clinic and all the kids have to have the same provider.
Hannah's neck is still swollen, though it is smaller. I had hoped it would look better than it does by now. It is very hard and painful to the touch. She is not eating well as swallowing hurts her. I would really like to talk with a doctor this week and find out what their plan is. I have no idea if this is something that can wait or if it is more urgent. Of course, if it doesn't get smaller and clear up with the antibiotics, then it is more urgent.
Sunday, August 9, 2009
To be like you
As a Christian, it is our calling and desire to be Christ-like in all we do. Of course, I'll never meet that perfection, but He is our example in love, faith and actions. Sometimes it is hard to think I could ever be anything like Christ. He is God, after all.
Then, there are times in life when God blesses you with people who exemplify Christ in their lives. Times when you realize, you're seeing Christ-likeness in someone else. Someone human just like you. When you see that, it blesses you completely.
This week we were once again blessed by some people who have shown us Christ's love. They love, give and encourage in ways that bless us so much. We are humbled and incredibly grateful to be on the receiving end of their faith in action. Not all who claim the name of Christ truly exemplify Him, but this week we have been on the receiving end of the faith in action of dear friends who truly know what it means to be Christ-like. God bless you as you have blessed us.
Then, there are times in life when God blesses you with people who exemplify Christ in their lives. Times when you realize, you're seeing Christ-likeness in someone else. Someone human just like you. When you see that, it blesses you completely.
This week we were once again blessed by some people who have shown us Christ's love. They love, give and encourage in ways that bless us so much. We are humbled and incredibly grateful to be on the receiving end of their faith in action. Not all who claim the name of Christ truly exemplify Him, but this week we have been on the receiving end of the faith in action of dear friends who truly know what it means to be Christ-like. God bless you as you have blessed us.
Saturday, August 8, 2009
Hannah's Turn
Hannah awoke this morning with her throat swollen. She looked like she had the mumps. She had a mild cold and had said her throat was hurting and swollen yesterday, but I thought it was just her lymph nodes swollen from the cold. I took one look at her this morning and knew I had never seen anything like that before and so off to urgent care we must go.
Kevin took Hannah and left about 8:30am for urgent care. Kevin's Mom arrived about 9 am to stay with the boys, and Elizabeth and I left soon after to attend Ben and Sara's wedding. ( a couple from our church)
Kevin and I stayed in cell phone contact throughout the day. It took Kevin and 3 nurses to hold Hannah down while they inserted a heplock. Unfortunately, the nurse thought it would help if she told Hannah in great detail what was about to happen. They took blood to test for infection and then inserted dye in order to do a CT scan. The final result is that Hannah has a 2 cm thyroglossal cyst. Since she had the heplock in, they administered IV antibiotics and sent her home with a strong antibiotic perscription. We are to follow up next week with an ENT (ear, nose and throat doctor). The did tell Kevin it was not lymphoma as the shape is wrong. I am just glad I didn't know that is what they were looking for! Pray that it will shrink with the antibiotics. A quick Google search of "tyroglossal cyst" has told us that this was probably there since birth, but for some reason became infected. I'm assuming it was the cold she currently has. We were under the impression that they antibiotics would clear up the infection and therefore the issue. However, it sounds like surgery is often necessary to remove these. That is NOT what I need to hear or deal with right now. Please pray for us as we meet with the ENT next week. That Hannah will heal quickly, and that surgery will not be necessary.
Hannah wanted to come to the wedding after the doctor, and since the reception was nearby, Kevin and Hannah arrived as everything was wrapping up. But, they did get in on the In and Out burgers served at the wedding and of course, the cake.
I left the girls with Kevin and went to fill Hannah's perscription. The pharmacy then informs me that our children's medical insurance has been cancelled! I asked if I could just pay cash for the antibiotic, but as it was almost $150 we made some phone calls to insurance and were able to figure it out. Apparently we have new insurance numbers, but they have failed to send me new cards. Can anything be easy these days?
So, now the kids are all with Miss Carla, bless her heart. Kevin and I had already planned to be away for a couple of nights. Hannah said she was fine to be with Carla, so we decided to go ahead and go as who knows when we'll be able to do this again. We are near home, but in a hotel for a couple of nights. I'm trying to reduce the number of stress hormones I'm sharing with Melody!
Kevin took Hannah and left about 8:30am for urgent care. Kevin's Mom arrived about 9 am to stay with the boys, and Elizabeth and I left soon after to attend Ben and Sara's wedding. ( a couple from our church)
Kevin and I stayed in cell phone contact throughout the day. It took Kevin and 3 nurses to hold Hannah down while they inserted a heplock. Unfortunately, the nurse thought it would help if she told Hannah in great detail what was about to happen. They took blood to test for infection and then inserted dye in order to do a CT scan. The final result is that Hannah has a 2 cm thyroglossal cyst. Since she had the heplock in, they administered IV antibiotics and sent her home with a strong antibiotic perscription. We are to follow up next week with an ENT (ear, nose and throat doctor). The did tell Kevin it was not lymphoma as the shape is wrong. I am just glad I didn't know that is what they were looking for! Pray that it will shrink with the antibiotics. A quick Google search of "tyroglossal cyst" has told us that this was probably there since birth, but for some reason became infected. I'm assuming it was the cold she currently has. We were under the impression that they antibiotics would clear up the infection and therefore the issue. However, it sounds like surgery is often necessary to remove these. That is NOT what I need to hear or deal with right now. Please pray for us as we meet with the ENT next week. That Hannah will heal quickly, and that surgery will not be necessary.
Hannah wanted to come to the wedding after the doctor, and since the reception was nearby, Kevin and Hannah arrived as everything was wrapping up. But, they did get in on the In and Out burgers served at the wedding and of course, the cake.
I left the girls with Kevin and went to fill Hannah's perscription. The pharmacy then informs me that our children's medical insurance has been cancelled! I asked if I could just pay cash for the antibiotic, but as it was almost $150 we made some phone calls to insurance and were able to figure it out. Apparently we have new insurance numbers, but they have failed to send me new cards. Can anything be easy these days?
So, now the kids are all with Miss Carla, bless her heart. Kevin and I had already planned to be away for a couple of nights. Hannah said she was fine to be with Carla, so we decided to go ahead and go as who knows when we'll be able to do this again. We are near home, but in a hotel for a couple of nights. I'm trying to reduce the number of stress hormones I'm sharing with Melody!
Friday, August 7, 2009
Short and Sweet
Melody looked great again in today's non-stress test. I was only there one hour, so that was a wonderful change. We'll return on Monday for the next non-stress test, ultrasound and doctor appointment.
Monday, August 3, 2009
Early September?
Today was another full day at the doctor. The most exciting news is that the doctor said he'd do an amniocentesis about Sept. 2 and if Melody's lungs are developed enough, do the c-section the next day. That means she could be here in one month! That would be doing the c-section at 37 weeks, which is the earliest considered "term."
We had a non-stress test (NST) first upon arriving at the doctors. They are checking Melody's heartbeat, movement and for contractions. Also, they check amniotic fluid levels. Melody was her truly active self, so gave them great readings and a round of hiccups, too. My fluid level was 12.1, which I would have no reference for, but after hearing the other patient next to me sent to Labor and delivery with fluid levels at 4.1, I have a bit more of a reference point.
We returned to the waiting room to wait for the scheduled ultrasound. Over one hour later a doctor emerged and told us it had only been 10 days from my last one, and it needs to be at least 2 weeks, so we would need to wait until next week. Fine with me, but couldn't we have figured this out BEFORE the hour plus wait?
We then only had to have my checkup before leaving, but apparently the doctor seeing patients (not to be confused with the doctor doing ultrasounds) had left for some reason. So... we waited another good long time for his return. When he finally saw us it was 4:45 and we had arrived for this whole ordeal at 1:30.
I had hoped to get out of the NST scheduled for Thursday with the great results of today, but no such luck. I will have NST's Mondays and Thursdays until Melody arrives. The doctor is still concerned about Melody's size, and since we can't confirm growth with an ultrasound until next week, NST's will rule out problems in the meantime. Fluid levels are a good indicator of whether the baby is continuing to grow or not. Apparently, if fluid levels drop, the baby may not be growing appropriately.
As long as Melody's NST's and ultrasound continue to show appropriate growth and fluid levels, we will go with the 37 week c-section plan. If there is a problem with anything on the NST, I could be sent to labor and delivery for a c-section at any time. I plan to go to the one on Thursday by myself and figure I can always call Kevin if they decide to admit me.
Personally, I am not worried about Melody's growth. When I was pregnant with Elizabeth, this was their concern and they even had the entire neo-natal team in the delivery room when she arrived 4 weeks early. She arrived with 9 and 10 apgar scores and we were home from the hospital the next day! We do have some pretty short/small genes in our family, so I figure Melody inherited those.
The 37- week c-section plan comes from my history of pre-term labor. Both girls were born at 36 weeks. The doctor seems a bit concerned that Melody will arrive before her scheduled c-section, and the is one of our concerns as well. It is best for Melody if she is delivered before I go into labor and with the neurosurgeon prepared to do the closure surgery soon after. Of course, we can go with and emergency c-section plan, but that is not best.
Anyway, my prayer is that I will make it to early September. I would love to have the c-section without having any labor. Hannah's c-section was performed when I was already in quite a bit of pain. I think I was in transition labor. I'd prefer to avoid that!
We had a non-stress test (NST) first upon arriving at the doctors. They are checking Melody's heartbeat, movement and for contractions. Also, they check amniotic fluid levels. Melody was her truly active self, so gave them great readings and a round of hiccups, too. My fluid level was 12.1, which I would have no reference for, but after hearing the other patient next to me sent to Labor and delivery with fluid levels at 4.1, I have a bit more of a reference point.
We returned to the waiting room to wait for the scheduled ultrasound. Over one hour later a doctor emerged and told us it had only been 10 days from my last one, and it needs to be at least 2 weeks, so we would need to wait until next week. Fine with me, but couldn't we have figured this out BEFORE the hour plus wait?
We then only had to have my checkup before leaving, but apparently the doctor seeing patients (not to be confused with the doctor doing ultrasounds) had left for some reason. So... we waited another good long time for his return. When he finally saw us it was 4:45 and we had arrived for this whole ordeal at 1:30.
I had hoped to get out of the NST scheduled for Thursday with the great results of today, but no such luck. I will have NST's Mondays and Thursdays until Melody arrives. The doctor is still concerned about Melody's size, and since we can't confirm growth with an ultrasound until next week, NST's will rule out problems in the meantime. Fluid levels are a good indicator of whether the baby is continuing to grow or not. Apparently, if fluid levels drop, the baby may not be growing appropriately.
As long as Melody's NST's and ultrasound continue to show appropriate growth and fluid levels, we will go with the 37 week c-section plan. If there is a problem with anything on the NST, I could be sent to labor and delivery for a c-section at any time. I plan to go to the one on Thursday by myself and figure I can always call Kevin if they decide to admit me.
Personally, I am not worried about Melody's growth. When I was pregnant with Elizabeth, this was their concern and they even had the entire neo-natal team in the delivery room when she arrived 4 weeks early. She arrived with 9 and 10 apgar scores and we were home from the hospital the next day! We do have some pretty short/small genes in our family, so I figure Melody inherited those.
The 37- week c-section plan comes from my history of pre-term labor. Both girls were born at 36 weeks. The doctor seems a bit concerned that Melody will arrive before her scheduled c-section, and the is one of our concerns as well. It is best for Melody if she is delivered before I go into labor and with the neurosurgeon prepared to do the closure surgery soon after. Of course, we can go with and emergency c-section plan, but that is not best.
Anyway, my prayer is that I will make it to early September. I would love to have the c-section without having any labor. Hannah's c-section was performed when I was already in quite a bit of pain. I think I was in transition labor. I'd prefer to avoid that!
Birthday and Baby Shower
This weekend was fun and busy. It started with Elizabeth's "Half-Sleepover" on Friday night. We ended up with 6 girls (including our 2) which was a really nice size. She had invited only friends from school as I knew I couldn't handle a huge party. We decorated pillow cases, ate pizza and doritos, decorated sugar cookies, played hide and seek with glowsticks in the dark, and watched the movie, Kit Kitteridge American Girl. Parents picked up the girls abour 10:30 and they were all excited about staying up late. It was a really nice evening.
Decorating Pillow Cases
Me and my "Melody Belly"
Hannah & Grandma Allen
Lovely Ladies
Decorating Pillow CasesMikaela, Hannah, Katy, Savannah, Emily & Elizabeth
Me and my "Melody Belly"Saturday was a baby shower hosted by the ladies of Missio Dei, our church. Elizabeth was so excited to have it on her actual birthday. She even got to go shopping for a new outfit with Miss Carla on the way. It was a wonderful shower and I feel abundantly blessed.
It feels almost criminal to have a baby shower when you are having your 5th child, so I have been dragging my heels about letting them plan one. But, they did spare my the measure your belly game, per my request, so what do I really have to complain about?
I learned a few things, too.
1) People WANT to help, and this is one way they can help. Let them!
2) Carrying a child with special needs and an unknown future is a very lonely place. Being blessed at a shower takes some of the loneliness away.
3) Getting lots of cute pink, new items is fun and brings back some of the normalcy I long for in this pregnancy.
Hannah & Grandma Allen
Lovely LadiesMargie, Connie, Judy and Sheri
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