So I suck at this whole blog thing! Not because I am lazy though, but because I have been extremely busy. I can tell you that I have thought of many things to say this past month, while driving or in the middle of the night feeding Sweet Caroline, I come up with great material to talk/write about. But sadly a computer is never near me. I need a recorder.
Last I wrote, we were super excited to start the new year! 2010 was going to be our year! Sweet Caroline was healing/feeling fine and we made contact with NIH! It's amazing how things can change with one phone call.
On the early morning of January 3rd, I got a frightful phone call. My dad, who is young ps, had a massive heart attack and he was in Cardiac ICU and they advised me over the phone to "get to Tulsa as fast as possible". Well how in the heck are you supposed to do that with a 2 month old? Long story short, Web and I made it to Tulsa, and I begged and begged dad to pull through. I am happy to say that after 13 days in the CICU and 6 days in a regular room at the hospital, dad is on the road to recovery! He now has to complete 8 weeks of cardiac rehab, plus control his diabetes, then have open heart surgery and start the whole damn process of a ventilator and recovery again, but he will survive. Hell he will probably out live us all now that he will be getting a new path to his heart at such a young age! Needless to say, I have been driving back and forth from OKC to Tulsa at least 3-4 times/week and that was without Sweet Caroline. Now that dad is home, I can bring her with me and let's face it, she is his best medicine. I have seen such a huge improvement in him now that he is out of the hospital and now that he can hold Sweet Caroline. It's truly a cheap version of modern medicine.
Speaking of Sweet Caroline she is doing great! She is so dang cute, it's unbelievable. She has the most beautiful blue eyes anyone has ever seen, and the most gorgeous strawberry blonde hair. She has a smile that will melt your heart, and just recently she has found her voice and she absolutely loves to talk to you and smile. She recently spent her 1st weekend at the lake and she loved every minute of it. Daddy says it's becuase it's such a calm place that anyone would like it. I think it's because this was the 1st weekend in 3 weeks she was with both her parents at the same time. But I am sure it was a little of both. As for her health, Web and I think she is doing marvelous! Of course, what do we know? We aren't doctors, but I can tell you this; she loves to eat her hands (a trademark my dad taught her literally 6 hours before his heart attack) and she stretches her legs for me whenever I ask. If we were to go to the orthopedist tomorrow I would tell him no need to do an x-ray, she is healed. Sometimes when she and I are playing tummy time, or just swinging in her chair I wonder if she even still has OI? You can't tell by looking at her. And she moves all her limbs. No matter where I was doing the 19 days dad was in the hospital, I saw her every day and I made sure she and I did her exercises. I refused anyones help with it and did it myself. Yes, I know others can do it, but this is my daughter and I want to be the one that does it with her. It's our special time every morning. I will admit some mornings were rushed, but we still did them. Are they helping her limbs? I like to believe so. She doesn't fight me at all, I think it actually makes her feel better. So we will continue to do them.
As for NIH, we have postponed our February date. We took Sweet Caroline to her 2 month appt with her regular pediatrician and we asked her thoughts of flying to MD in Feb. She said absolutely not. RSV and flu season is at its worst in February/March. If we didn't feel it was something that absolutely had to be done at that time, then we should postpone. Well that was great news, because at this time dad was still in the CICU and the thought of leaving him made me ill. So we called NIH, gave them our dr's recomendation and we re-scheduled for mid April. Hopefully dad's open heart surgery will be over by then, and he will be in recovery mode! Heck hopefully by then he will be sitting at the beach in recovery! NIH also mentioned to us, that from what we have told them they might only see Sweet Caroline every 6 months, instead of every 3-4 months, because to them it sounded like she had a milder case! Whoah hoah!
I did ask what the 2 days of appts entails, and it's going to be exhausting.
Besides the flight to MD, staying at the hospital hotel for 2 days, she will have multiple appts with specialtists, physical therapists, rehab therapists, nurses, etc. She will have DEXA Scan, which will take measurements of osteoporasis and mineralization. She will have full body x-rays, WHICH SUCK more for the parents! She will have full body measurements, plus a skin biopsy which will tell us the level of collagen she has in her body, which will give us a better idea of what type of OI she has, plus how we should treat it. Of course, we can't treat with meds, because none exist. So needless to say, those 2 days are going to be exhausting and mentally draining not only for her but for Web and I as well! But if I have learned anything this past month it is that Web and I can conquer it! He has been my rock and knowing that I have a husband that I can count on makes my life pretty good!
So as you can see, we have been busy, and we have a busy few months ahead of us, but we will survive. Dad will definitely survive and unknown to Sweet Caroline she is the best medicine for us all. And tomorrow we celebrate her 3 month old birthday! No I am not one of those mothers that is really going to celebrate, but we will definitely spoil her with hugs and kisses. And who knows, if I am out and about I am sure I will buy her a little something!
I promise to be better at posting!!
Friday, January 29, 2010
Sunday, January 3, 2010
SERIOUSLY?!?
thought I was starting this year on a positive note?
So at 3:42 this morning the phone rang, at first I thought it was Caroline crying that woke me up, but then I realized it was the phone. Who in the world could be calling? I mean none of us stay out until 3 in the morning and need a ride home from the bar!
Next thing I know I hear Janis saying, "Kristine it's Janis I am at the hospital with your dad, he has had cardiac failure." Web jumped so fast, I never knew he could move like that. I got on the phone and she told me what no one ever wants to hear about a parent. Dad had a heart attack. She put the nurse on the phone and in her most diplomatically way she could, she said to get to Tulsa asap. It wasn't good. Well what in the heck are you supposed to do with a 2 month old, PLUS live in a different city?! On perfect timing, Caroline woke up and wanted a bottle. I grabbed my little girl, held her close and gave her a bottle. I sat there and realized we needed to get my mom to my house asap so she could watch Caroline and Kelsey. Luckily mom woke up when she heard the phone and was at our house by 4:45. Web and I jumped in our car and I drove us to Tulsa in one hour 15 minutes, new record for me...
As soon as I got there, the nurse told us it wasn't good and that dad was very sick. His heart is diseased, and to top it off his kidneys were failing due to his diabetes, his sugar count was 800 when it should have been 100 PLUS he had fluid on his lungs. They told us at 6:25 they could take us back in 20 minutes to see him. At 7:45 they had yet to take us back to him and I knew something was wrong. Sure enough they came back to the waiting room and told us they could not sedate him and he was very, very ill. They also said no one should leave just in case. Finally we were able to go back and I swear to you, he looked just like my grandpa. His hair was more silver than grey. He had spots on his arms that my grandpa had, it was like he aged within minutes.
We all went back to the waiting room in total disbelief. Just yesterday my dad and brother were in OKC with Web and I celebrating Christmas. He was totally fine. He had a little cough, but with the weather I didn't think anything of it. Kevin said on the drive home he was perfectly fine and didn't say one word about not feeling well. He got home around 9 that night and by 11:30 he was at urgent care having his massive heart attack. They say he probably had a mild one earlier in the week and didn't know it.
Around noon dad took a turn for the better. He was finally sedated and the ICU nurse told me that she was actually able to leave his room for a moment, when earlier that day, she couldn't leave even for one second because his BP kept dropping and his pulse was racing. At one time his BP was in the 70s and his heart rate was 180. That is horrible.
At about 4:30 I talked to the ICU nurse again and she was super impressed with how well he was doing. Instead of taking 2 steps back, like they anticapted he was taking steps forward. I told her my situation about a 2 month old at home in OKC who was getting her shots tomorrow AM! She asked what my dad would say, and I told her he would tell me to go to her appt and she said, well then there's your answer. And in my heart I know we did the right thing, but it was the worst feeling ever. I actually went into his room twice to say good night because I couldn't bear to leave him. I just kept begging him to wake up so he could see Caroline and show her how to put her fingers in her mouth. That was the lesson he was showing her yesterday!
I just got off the phone with the same night ICU nurse who advised me to get to Tulsa asap early this morning and she said she sees 200% improvement in dad tonight. He has his coloring back, his BP is normal, hear rate is normal, and his urine is normal. They will take another urine sample tomorrow to check his kidneys. At one time today, he was at 50-70%. His blood sugar is also at 98! They have been pumping him insulin.
However, we are far from good. Right now all this improvement, is with meds and machines. He is not breathing on his own, nor is his heart beating on its own. He also has 3 clogged arteries, but he is far from ready for bypass open heart surgery. Dad is sedated now and probably will be for awhile. If he were to be stimulated it could cause more shock, which could cause another heart attack. And per the nurse if he had another heart attack right now he would not survive. Right now all the machcines are helping him, but eventually they will start taking the meds off of him one by one.
As always I am just purging info. But I know you have all texted, called, emailed, etc and I am forever grateful.
Tomorrow Web and I are taking Caroline to get her shots, taking Kelsey to the vet to stay the night, then back to Tulsa. My Uncle will be in Tulsa tomorrow from Jackson, MS. Our plan is to stay the night tomorrow night and see what Tuesday might bring.
Thanks again for all your prayers! Who knew we would be asking for them again!
Oh yeah, Kevin and Janis are with dad tonight. That was the only way I was leaving, knowing someone would be there with him.
So at 3:42 this morning the phone rang, at first I thought it was Caroline crying that woke me up, but then I realized it was the phone. Who in the world could be calling? I mean none of us stay out until 3 in the morning and need a ride home from the bar!
Next thing I know I hear Janis saying, "Kristine it's Janis I am at the hospital with your dad, he has had cardiac failure." Web jumped so fast, I never knew he could move like that. I got on the phone and she told me what no one ever wants to hear about a parent. Dad had a heart attack. She put the nurse on the phone and in her most diplomatically way she could, she said to get to Tulsa asap. It wasn't good. Well what in the heck are you supposed to do with a 2 month old, PLUS live in a different city?! On perfect timing, Caroline woke up and wanted a bottle. I grabbed my little girl, held her close and gave her a bottle. I sat there and realized we needed to get my mom to my house asap so she could watch Caroline and Kelsey. Luckily mom woke up when she heard the phone and was at our house by 4:45. Web and I jumped in our car and I drove us to Tulsa in one hour 15 minutes, new record for me...
As soon as I got there, the nurse told us it wasn't good and that dad was very sick. His heart is diseased, and to top it off his kidneys were failing due to his diabetes, his sugar count was 800 when it should have been 100 PLUS he had fluid on his lungs. They told us at 6:25 they could take us back in 20 minutes to see him. At 7:45 they had yet to take us back to him and I knew something was wrong. Sure enough they came back to the waiting room and told us they could not sedate him and he was very, very ill. They also said no one should leave just in case. Finally we were able to go back and I swear to you, he looked just like my grandpa. His hair was more silver than grey. He had spots on his arms that my grandpa had, it was like he aged within minutes.
We all went back to the waiting room in total disbelief. Just yesterday my dad and brother were in OKC with Web and I celebrating Christmas. He was totally fine. He had a little cough, but with the weather I didn't think anything of it. Kevin said on the drive home he was perfectly fine and didn't say one word about not feeling well. He got home around 9 that night and by 11:30 he was at urgent care having his massive heart attack. They say he probably had a mild one earlier in the week and didn't know it.
Around noon dad took a turn for the better. He was finally sedated and the ICU nurse told me that she was actually able to leave his room for a moment, when earlier that day, she couldn't leave even for one second because his BP kept dropping and his pulse was racing. At one time his BP was in the 70s and his heart rate was 180. That is horrible.
At about 4:30 I talked to the ICU nurse again and she was super impressed with how well he was doing. Instead of taking 2 steps back, like they anticapted he was taking steps forward. I told her my situation about a 2 month old at home in OKC who was getting her shots tomorrow AM! She asked what my dad would say, and I told her he would tell me to go to her appt and she said, well then there's your answer. And in my heart I know we did the right thing, but it was the worst feeling ever. I actually went into his room twice to say good night because I couldn't bear to leave him. I just kept begging him to wake up so he could see Caroline and show her how to put her fingers in her mouth. That was the lesson he was showing her yesterday!
I just got off the phone with the same night ICU nurse who advised me to get to Tulsa asap early this morning and she said she sees 200% improvement in dad tonight. He has his coloring back, his BP is normal, hear rate is normal, and his urine is normal. They will take another urine sample tomorrow to check his kidneys. At one time today, he was at 50-70%. His blood sugar is also at 98! They have been pumping him insulin.
However, we are far from good. Right now all this improvement, is with meds and machines. He is not breathing on his own, nor is his heart beating on its own. He also has 3 clogged arteries, but he is far from ready for bypass open heart surgery. Dad is sedated now and probably will be for awhile. If he were to be stimulated it could cause more shock, which could cause another heart attack. And per the nurse if he had another heart attack right now he would not survive. Right now all the machcines are helping him, but eventually they will start taking the meds off of him one by one.
As always I am just purging info. But I know you have all texted, called, emailed, etc and I am forever grateful.
Tomorrow Web and I are taking Caroline to get her shots, taking Kelsey to the vet to stay the night, then back to Tulsa. My Uncle will be in Tulsa tomorrow from Jackson, MS. Our plan is to stay the night tomorrow night and see what Tuesday might bring.
Thanks again for all your prayers! Who knew we would be asking for them again!
Oh yeah, Kevin and Janis are with dad tonight. That was the only way I was leaving, knowing someone would be there with him.
Saturday, January 2, 2010
SNOT
Snot. It's a 4 letter word that I say at least 10 times every day. I literally talk to Caroline and Kelsey about it like I would talk to my friends about a new sweater. Caroline is having some major nose issues. All babies have it, so that's a bonus. I am glad I am not the only mom in America that literally looks up my childs nose every morning to see what I need to clean. However, I am lucky. My child loves the nasal aspirator. LOVES IT! I have heard horror stories where a baby sees the aspirator and fights the parent. Not my child. She sees it coming and STOPS CRYING! She loves it. I think it's because she knows she is about to be able to breathe again! HOORAY! It is not a pretty task. I can honestly say not one of my friends warned me about it. So for all my friends out there pregnant, or thinking about babies let me be the 1st to tell you. Babies have snotty noses and you have to clean their noses for them. They do not know how to blow their nose when you ask them to. I do look forward to that day.
First thing I told Web this morning, was not hello, or good morning, or I love you. It was, "Caroline's got a snotty nose." Who says that?!?! So she and I went upstairs I was armed with the aspirator, q-tip, and kleenex and she is now a proud owner of a clean nose! Ahh, the little things.
First thing I told Web this morning, was not hello, or good morning, or I love you. It was, "Caroline's got a snotty nose." Who says that?!?! So she and I went upstairs I was armed with the aspirator, q-tip, and kleenex and she is now a proud owner of a clean nose! Ahh, the little things.
Friday, January 1, 2010
Email from Thursday, December 31st
Happy New Year! Web and I hope this email finds you all well! I have been sitting in our office across from Caroline's room as she sleeps and I have been thinking about 2009.
So much has happened. Most of you know this but here is the recap:
Sold my house in Tulsa with this crazy economy!
Moved to OKC.
Planned the wedding of my dreams!
Went on the most beautiful honeymoon in Europe for 2 weeks!
Got pregnant and had Sweet Caroline!
Not too bad for 2 people that toasted 2009 together while watching fireworks downtown with no clue of what was in store for us.
There is not one thing I would take back from this year. Now of course, there were some major downs, friends lost parents, loved ones were hurt inexplicitly, jobs were lost, new careers started, and bad things happened to good people. But Web and I are not going to dwell on the bad, but start 2010 on a very positive note!
We finally heard from Dr OI at NIH! FINALLY!! Once Web got the ball rolling it hasn't stopped. We have talked to Dr OIs nurse practitioner (NP) and she has set us up with an appt Feb 8th and 9th! When they asked if those days were ok, we didn't even hesitate. Of course we will be there! Just tell us what to do. Now my mom instinct has kicked in. What were we thinking agreeing to take a 3 month old baby to Bethesda, MD in the dead of winter? Are we nuts? Can it not wait until March or April? Needless to say, I have an email to the NP with those questions plus others. Once we have a confirmed date we will let you know. No, we don't want to delay the inevitable, but if I could avoid putting Caroline on a plane at 3 months in February then I will!
Not only did Web get in touch with the NP, but he has also talked at length with a physical therapist that specializes in OI! HOORAY! She told him some basic exercises and we have started them at home.
1. Caroline needs to lay on both sides, this will help with her bowed legs. Squeezing the legs together. I put her on each side for about 20 minutes every morning.
2. We also do water exercises. I am not quite comfortable doing this one by myself. An extra set of hands makes me feel better, so we don't do it as often.
3. Plus I do daily exercises with her limbs, 3 sets of 8 reps. Usually after a diaper change!
All in all we are doing well! Caroline doesn't seem to be in any pain. We can't wait for our trip to NIH and to see what this new year will bring.
As we learn more about the NIH program we will let you know.
Happy New Year!
So much has happened. Most of you know this but here is the recap:
Sold my house in Tulsa with this crazy economy!
Moved to OKC.
Planned the wedding of my dreams!
Went on the most beautiful honeymoon in Europe for 2 weeks!
Got pregnant and had Sweet Caroline!
Not too bad for 2 people that toasted 2009 together while watching fireworks downtown with no clue of what was in store for us.
There is not one thing I would take back from this year. Now of course, there were some major downs, friends lost parents, loved ones were hurt inexplicitly, jobs were lost, new careers started, and bad things happened to good people. But Web and I are not going to dwell on the bad, but start 2010 on a very positive note!
We finally heard from Dr OI at NIH! FINALLY!! Once Web got the ball rolling it hasn't stopped. We have talked to Dr OIs nurse practitioner (NP) and she has set us up with an appt Feb 8th and 9th! When they asked if those days were ok, we didn't even hesitate. Of course we will be there! Just tell us what to do. Now my mom instinct has kicked in. What were we thinking agreeing to take a 3 month old baby to Bethesda, MD in the dead of winter? Are we nuts? Can it not wait until March or April? Needless to say, I have an email to the NP with those questions plus others. Once we have a confirmed date we will let you know. No, we don't want to delay the inevitable, but if I could avoid putting Caroline on a plane at 3 months in February then I will!
Not only did Web get in touch with the NP, but he has also talked at length with a physical therapist that specializes in OI! HOORAY! She told him some basic exercises and we have started them at home.
1. Caroline needs to lay on both sides, this will help with her bowed legs. Squeezing the legs together. I put her on each side for about 20 minutes every morning.
2. We also do water exercises. I am not quite comfortable doing this one by myself. An extra set of hands makes me feel better, so we don't do it as often.
3. Plus I do daily exercises with her limbs, 3 sets of 8 reps. Usually after a diaper change!
All in all we are doing well! Caroline doesn't seem to be in any pain. We can't wait for our trip to NIH and to see what this new year will bring.
As we learn more about the NIH program we will let you know.
Happy New Year!
Email from Sunday, December 6th
Hello! My goal was to send this email on Thursday, but here it is 10 PM on Sunday night and I am just now able to start the email update. It's amazing how quickly the weekend goes! I had so much I wanted to accomplish this weekend, but only achieved maybe 1/4. But that's ok! We have a Christmas tree up with lights, but no ornaments. My goal this week is for some fairy to come down from the sky and finish it up for me! Drives me nuts not having them on the tree!
We have been pretty busy this past week, with 3 doctor appts. We went to Caroline's pediatrician and she was not the happiest of children. They weighed her, and she is becoming quite the chunky monkey! She is now 7lbs 2ozs! She is right on target for 1/2 an ounce/day. So that is great news! However, when it came time to measure her length, she was not a happy baby. The nurse touched her left leg and let's just say the whole office heard Caroline scream. If I would have known the nurse was going for that leg first, I would have immediately stopped her and told her to go for the right leg. The right leg is doing great right now. Caroline stretches it out and it doesn't hurt her. But her left leg, not so much. Needless to say, by the time the doctor came in to see her we still had a cranky baby. Note to self, when they put Caroline on the long white table, they are measuring her, and I need to be ahead of the game and let them know which leg, if any, they can touch. Better luck next time.
We also went to the pediatric orthopedic, Dr Herndon. I went armed and ready. If you remember last time we were there, Web and I were not ready for what we were about to witness. I had everything imaginable; 2 bottles, extra blankets, Tylenol. They called us back to the exam room. Dr Herndon asked how Caroline has been the last month, we gave him our opinions on what we think our her latest breaks, latest accomplishments. He looks her over, and says no x-rays that day! We were shocked. He immediately told us that Caroline will have so many x-rays in her future and be under so much radiation that he didn't think it was necessary for this appointment. In one way, we were relieved! Yeah! We didn't have to see our sweet daughter being pulled in so many directions while we watch helpless. But, we were also a little upset because we wanted to know if there were more breaks or if there were none. I guess no news is good news. And as Dr Herndon told us, we will eventually learn what's broken and what's not. His main concern at this appointment was her left leg, above the knee. Well duh, I could have told him that. She hadn't moved it in awhile, plus the nurse just 2 days before tried to straighten it to take her measurement.
Of course, Web and I went armed with many questions as well.
When will she get rods in her legs?
When do we start physical therapy?
When do we start her on bisphosphanate?
He was happy that we had done our research, but he pretty much told us to slow down. He told us more than once, I would say at least 10 times, that we had to remember she is only one month old. There is no doctor that would give her any medicine at this age. He can't tell us anything about rods in her legs, until we see how/if her legs grow and how many breaks she might have in her first year. Plus there is no age where he says, "well you are now 3 you get rods!" Not so much. And as for physical therapy, we need to just do some movement with her limbs, but that's all for now. Again, reminder she is only one month old. It's so annoying though, because you want to do something to help her NOW! Not when she is 1 or 2 or 10 years old, but NOW! Dr Herndon told us that he doesn't need to see her again until March, unless of course, we notice something else, that we want him to see. But seriously what's the point of taking her in right now? He can't cast her, he doesn't want to take x-rays if it's not necessary, and we know when she has a new break, or what we think is a new break because Caroline tells us in her own newborn way. She won't move that specific limb. Don't get us wrong. We had a great appointment all in all. Was it what we were expecting? NO. Were we happy that we took home a happy baby? YES. We will just keep watching her limbs and see how she does. Of course, we are still waiting to hear from Dr. OI at NIH in Maryland. Hopefully we will hear from her sooner than later, Web and I would like to ask her the same questions and get working on some water exercises.
As for our 3rd appointment, it was for Web and I. We haven't stopped going to our therapy appointments, and I don't see an end in sight. Web has been great, he does research and talks to people at the OI Foundation. They even mentioned Web and I going to the OI Nat'l Convention in July. But not sure if we are ready for that. Caroline won't even be a year yet and we still aren't sure on the severity of OI. Of course, that goes back to the whole wait out the year that drives me batty because I want to know NOW. I have no patience. I was talking to our therapist about how mad I am at OI and how I am just so ticked off! I don't get to change my daughters diaper like other moms, I don't get to hold my daughter like other moms, I don't get to learn the "I am hungry cry", because my daughter is hungry 24/7. Our pediatrician thinks she is eating so much to ease any pain. Literally I have a bottle on me at all times. One morning, I timed our early feeding, I started at 7 finished at 10, changed her diaper, put her down for an hour, and had another bottle in her by 11:15 and she didn't stop until 2. No wonder she gained 1/2 ounce per day!! I told this all to our therapist and she goes, "Well that's because you are traumatized."
What? Traumatized? I don't think so. But then she explained it and she is so right. When you learn you are pregnant you are so excited, you go buy the crib, the paint, the bedding, the CLOTHES! You then expect the baby to be in your arms perfectly normal, but sadly that didn't happen to us. No, I do not have post partum depression. People have asked me that, and I don't have it, but I have been traumatized because what I believed would happen, didn't. And it just ticks me off. I am so mad that my sweet daughter can't wear any of the clothes I have bought her. I won't even tell you about the breakdown I had while driving down Classen Ave. one day when I couldn't find any clothes for Caroline that would work for her. Her legs don't like to be moved, so we can only put her in gowns that snap down the front. Nothing over the head because that could hurt her shoulders or her collar bones. I only had 3 outfits that she could wear. I called a very dear friend and she found some in Tulsa and they were literally on my door step the next day! She had them overnighted. I was grateful and thankful. Of course, I am stubborn and have a couple of outfits that I put over her head because the neck is big enough, and I have one footed pj that I put her in the other day, that wasn't too hard to maneuver her legs into. But I am sure the whole time Caroline was thinking I was nutso!
I know Web and I can handle whatever comes our way. I can't guarantee you that we will know what to do once it does come our way, but we will figure it out.
Well this note hasn't been the most positive I have ever written, but it has not been the easiest day. Caroline has been a very grumpy girl, with not much sleep, plus we have a sick daddy on our hands!
While I wrote this note, she woke up twice screaming! God Love her.
I hope you all had a great Thanksgiving! I know we did and we had a lot to give thanks for in so many ways!
Love,
Web, Kristine and Caroline
Ps, please feel free to pass this email along. I know some people have asked if it's ok and I don't care at all. The more people that know about OI, the better. Alos, if you don't wnat to receive these emails please just let me know. I promise you won't hurt my feelings! I know I can be a little overwhelming in them!
We have been pretty busy this past week, with 3 doctor appts. We went to Caroline's pediatrician and she was not the happiest of children. They weighed her, and she is becoming quite the chunky monkey! She is now 7lbs 2ozs! She is right on target for 1/2 an ounce/day. So that is great news! However, when it came time to measure her length, she was not a happy baby. The nurse touched her left leg and let's just say the whole office heard Caroline scream. If I would have known the nurse was going for that leg first, I would have immediately stopped her and told her to go for the right leg. The right leg is doing great right now. Caroline stretches it out and it doesn't hurt her. But her left leg, not so much. Needless to say, by the time the doctor came in to see her we still had a cranky baby. Note to self, when they put Caroline on the long white table, they are measuring her, and I need to be ahead of the game and let them know which leg, if any, they can touch. Better luck next time.
We also went to the pediatric orthopedic, Dr Herndon. I went armed and ready. If you remember last time we were there, Web and I were not ready for what we were about to witness. I had everything imaginable; 2 bottles, extra blankets, Tylenol. They called us back to the exam room. Dr Herndon asked how Caroline has been the last month, we gave him our opinions on what we think our her latest breaks, latest accomplishments. He looks her over, and says no x-rays that day! We were shocked. He immediately told us that Caroline will have so many x-rays in her future and be under so much radiation that he didn't think it was necessary for this appointment. In one way, we were relieved! Yeah! We didn't have to see our sweet daughter being pulled in so many directions while we watch helpless. But, we were also a little upset because we wanted to know if there were more breaks or if there were none. I guess no news is good news. And as Dr Herndon told us, we will eventually learn what's broken and what's not. His main concern at this appointment was her left leg, above the knee. Well duh, I could have told him that. She hadn't moved it in awhile, plus the nurse just 2 days before tried to straighten it to take her measurement.
Of course, Web and I went armed with many questions as well.
When will she get rods in her legs?
When do we start physical therapy?
When do we start her on bisphosphanate?
He was happy that we had done our research, but he pretty much told us to slow down. He told us more than once, I would say at least 10 times, that we had to remember she is only one month old. There is no doctor that would give her any medicine at this age. He can't tell us anything about rods in her legs, until we see how/if her legs grow and how many breaks she might have in her first year. Plus there is no age where he says, "well you are now 3 you get rods!" Not so much. And as for physical therapy, we need to just do some movement with her limbs, but that's all for now. Again, reminder she is only one month old. It's so annoying though, because you want to do something to help her NOW! Not when she is 1 or 2 or 10 years old, but NOW! Dr Herndon told us that he doesn't need to see her again until March, unless of course, we notice something else, that we want him to see. But seriously what's the point of taking her in right now? He can't cast her, he doesn't want to take x-rays if it's not necessary, and we know when she has a new break, or what we think is a new break because Caroline tells us in her own newborn way. She won't move that specific limb. Don't get us wrong. We had a great appointment all in all. Was it what we were expecting? NO. Were we happy that we took home a happy baby? YES. We will just keep watching her limbs and see how she does. Of course, we are still waiting to hear from Dr. OI at NIH in Maryland. Hopefully we will hear from her sooner than later, Web and I would like to ask her the same questions and get working on some water exercises.
As for our 3rd appointment, it was for Web and I. We haven't stopped going to our therapy appointments, and I don't see an end in sight. Web has been great, he does research and talks to people at the OI Foundation. They even mentioned Web and I going to the OI Nat'l Convention in July. But not sure if we are ready for that. Caroline won't even be a year yet and we still aren't sure on the severity of OI. Of course, that goes back to the whole wait out the year that drives me batty because I want to know NOW. I have no patience. I was talking to our therapist about how mad I am at OI and how I am just so ticked off! I don't get to change my daughters diaper like other moms, I don't get to hold my daughter like other moms, I don't get to learn the "I am hungry cry", because my daughter is hungry 24/7. Our pediatrician thinks she is eating so much to ease any pain. Literally I have a bottle on me at all times. One morning, I timed our early feeding, I started at 7 finished at 10, changed her diaper, put her down for an hour, and had another bottle in her by 11:15 and she didn't stop until 2. No wonder she gained 1/2 ounce per day!! I told this all to our therapist and she goes, "Well that's because you are traumatized."
What? Traumatized? I don't think so. But then she explained it and she is so right. When you learn you are pregnant you are so excited, you go buy the crib, the paint, the bedding, the CLOTHES! You then expect the baby to be in your arms perfectly normal, but sadly that didn't happen to us. No, I do not have post partum depression. People have asked me that, and I don't have it, but I have been traumatized because what I believed would happen, didn't. And it just ticks me off. I am so mad that my sweet daughter can't wear any of the clothes I have bought her. I won't even tell you about the breakdown I had while driving down Classen Ave. one day when I couldn't find any clothes for Caroline that would work for her. Her legs don't like to be moved, so we can only put her in gowns that snap down the front. Nothing over the head because that could hurt her shoulders or her collar bones. I only had 3 outfits that she could wear. I called a very dear friend and she found some in Tulsa and they were literally on my door step the next day! She had them overnighted. I was grateful and thankful. Of course, I am stubborn and have a couple of outfits that I put over her head because the neck is big enough, and I have one footed pj that I put her in the other day, that wasn't too hard to maneuver her legs into. But I am sure the whole time Caroline was thinking I was nutso!
I know Web and I can handle whatever comes our way. I can't guarantee you that we will know what to do once it does come our way, but we will figure it out.
Well this note hasn't been the most positive I have ever written, but it has not been the easiest day. Caroline has been a very grumpy girl, with not much sleep, plus we have a sick daddy on our hands!
While I wrote this note, she woke up twice screaming! God Love her.
I hope you all had a great Thanksgiving! I know we did and we had a lot to give thanks for in so many ways!
Love,
Web, Kristine and Caroline
Ps, please feel free to pass this email along. I know some people have asked if it's ok and I don't care at all. The more people that know about OI, the better. Alos, if you don't wnat to receive these emails please just let me know. I promise you won't hurt my feelings! I know I can be a little overwhelming in them!
Email from Sunday, November 15th
Hey hey. So many people have called, texted, sent emails wondering how the NICU went. And some people never received the original email, I think it's because of the pics and some of the emails went to their junk mail accounts.
So, I decided to send out an update with the original email and without pics.
First of all, we should probably start out with a huge THANK YOU. There is not a day that goes by that Web and I hear of someone that has added Sweet Caroline to their prayer list. We are so lucky and we can't thank you all enough.
Per the last email, we were going to the NICU. Well we decided not to go. Not that we didn't trust the NICU and all they had to share, but we didn't want to bring our healthy baby to a place where infants need one on one attention at all times. Remember our Sweet Caroline's heart, lungs, brain, etc are all NORMAL. We didn't think it was fair to the parents that are at the NICU who need 100% attention to take away from their time for us to learn how to change a diaper. Plus, Web and I are whimps. We didn't feel comfortable in leaving our daughter overnight and us going home. We could have stayed at the Ronald McDonald house, but again we felt that the families that need the Ronald McDonald house deserved a bed over Web and I. So, after many conversations with the Children's Hospital coordinator, we decided that a home health nurse would be best for us. We were actually able to find a nurse that had some background in OI. This is such a rare disorder that it was tough finding a nurse that had experience. Matter of fact, our nurse had only worked with 2 other OI patients. Nurse Stacy told us that our Sweet Caroline had a much milder case of OI than what she had seen. That made Web and I happy. As sad and as rude as that might sound. But we were glad our Sweet Caroline was not the worst. Nurse Stacy gave Web and I much reassurance that we were doing what we knew the right way. That made us feel good. She did give us some great tips, i.e. egg crate for all the places we lay her down. So, off to Target I went. I bought an egg crate big enough for a twin bed and have cut it down. Caroline now has an egg crate in her infant seat, crib, bassinet, pack and play, plus her swings. It's truly amazing how many places a baby lays down! But whatever helps, we will do. The egg crate helps give a little more cushion to her pelvis. Besides her ribs breaking, we need to be extra careful with her pelvis as well. Nurse Stacy also met with our grandparents and talked to them about what they should and should not do. Web and I are very lucky to have grandparents that live near so we can escape for a couple hours every once in awhile. We know that Caroline is in good hands!
There are so many things I could tell you about this disorder, but I just don't want to dwell on the bad today. Caroline is doing great otherwise. She has gained weight! Her pediatrician was very proud of how much weight she has gained in 7 days. She has gained over 1/2 an ounce/day! She is now back to her birth weight, 6 lbs 4 oz. We go back to the pediatric orthopedist after Thanksgiving. Web and I are not looking forward to another day of x-rays, but we are anxious to see if her bones are continuing to heal, or if more are breaking. We also have quite a few questions to ask the doctor. Last appt Web and I sat in such disbelief that we just couldn't think of what to ask him. Now he is going to wish he never met us! I have started a list, and I will be armed next time we see him!
One thing that we do have to do sooner than later is move. Web and I love our house, it's old, historical, and in a great location of OKC. But we have stairs and hardwood floors. Nurse Stacy highly suggested carpet. We would like to be in a new house before the crawling begins. So probably after the new year, we will get down to business on finding a new home. I can say, that I will not miss going up and down our stairs about 50 times/day! Although it is helping in my quest to get back in shape!
If you do not want to receive our email updates, please let me know. I have had some people tell me that I should start a blog. I have honestly thought about it, because it would probably help me mentally. Maybe I will, who knows. Again, thank you for letting me purge my brain this rainy Sunday afternoon. It really does help.
We hope you all have a wonderful Thanksgiving!
So, I decided to send out an update with the original email and without pics.
First of all, we should probably start out with a huge THANK YOU. There is not a day that goes by that Web and I hear of someone that has added Sweet Caroline to their prayer list. We are so lucky and we can't thank you all enough.
Per the last email, we were going to the NICU. Well we decided not to go. Not that we didn't trust the NICU and all they had to share, but we didn't want to bring our healthy baby to a place where infants need one on one attention at all times. Remember our Sweet Caroline's heart, lungs, brain, etc are all NORMAL. We didn't think it was fair to the parents that are at the NICU who need 100% attention to take away from their time for us to learn how to change a diaper. Plus, Web and I are whimps. We didn't feel comfortable in leaving our daughter overnight and us going home. We could have stayed at the Ronald McDonald house, but again we felt that the families that need the Ronald McDonald house deserved a bed over Web and I. So, after many conversations with the Children's Hospital coordinator, we decided that a home health nurse would be best for us. We were actually able to find a nurse that had some background in OI. This is such a rare disorder that it was tough finding a nurse that had experience. Matter of fact, our nurse had only worked with 2 other OI patients. Nurse Stacy told us that our Sweet Caroline had a much milder case of OI than what she had seen. That made Web and I happy. As sad and as rude as that might sound. But we were glad our Sweet Caroline was not the worst. Nurse Stacy gave Web and I much reassurance that we were doing what we knew the right way. That made us feel good. She did give us some great tips, i.e. egg crate for all the places we lay her down. So, off to Target I went. I bought an egg crate big enough for a twin bed and have cut it down. Caroline now has an egg crate in her infant seat, crib, bassinet, pack and play, plus her swings. It's truly amazing how many places a baby lays down! But whatever helps, we will do. The egg crate helps give a little more cushion to her pelvis. Besides her ribs breaking, we need to be extra careful with her pelvis as well. Nurse Stacy also met with our grandparents and talked to them about what they should and should not do. Web and I are very lucky to have grandparents that live near so we can escape for a couple hours every once in awhile. We know that Caroline is in good hands!
There are so many things I could tell you about this disorder, but I just don't want to dwell on the bad today. Caroline is doing great otherwise. She has gained weight! Her pediatrician was very proud of how much weight she has gained in 7 days. She has gained over 1/2 an ounce/day! She is now back to her birth weight, 6 lbs 4 oz. We go back to the pediatric orthopedist after Thanksgiving. Web and I are not looking forward to another day of x-rays, but we are anxious to see if her bones are continuing to heal, or if more are breaking. We also have quite a few questions to ask the doctor. Last appt Web and I sat in such disbelief that we just couldn't think of what to ask him. Now he is going to wish he never met us! I have started a list, and I will be armed next time we see him!
One thing that we do have to do sooner than later is move. Web and I love our house, it's old, historical, and in a great location of OKC. But we have stairs and hardwood floors. Nurse Stacy highly suggested carpet. We would like to be in a new house before the crawling begins. So probably after the new year, we will get down to business on finding a new home. I can say, that I will not miss going up and down our stairs about 50 times/day! Although it is helping in my quest to get back in shape!
If you do not want to receive our email updates, please let me know. I have had some people tell me that I should start a blog. I have honestly thought about it, because it would probably help me mentally. Maybe I will, who knows. Again, thank you for letting me purge my brain this rainy Sunday afternoon. It really does help.
We hope you all have a wonderful Thanksgiving!
Email from Monday, November 9, 2009
Did you know that every year the State of Oklahoma welcomes 50,000 babies? Out of those 50,000 babies 1 is born with Osteogenesis Imperfecta, aka OI. For some reason, we didn't beat the odds, and our Sweet Caroline has OI. We got somewhat lucky that she has OI Type 1. 50% of OI patients have Type 1. Sweet Caroline has brittle bones. When we left the hospital we were told that she had 2 fractures, 1 in her right clavicle, the other in her left humorous (upper arm).However, last Thursday, Web and I took Sweet Caroline to a Pediatric orthopedist and they took x-rays on her whole body. It was a painful experience for both us and the patient! As you can imagine, it was cold for her, plus they kept pulling on her limbs. It was literally the worst experience Web and I have had to face thus far. All 3 of us were bawling. The orthopedist informed us that she had multiple fractures since she was in utero. He informed us that at her age, she was 6 days old, that they couldn't put her in any casts because her bones need to heal and grow. He did let us know that as she got older, there could be surgeries in our future, rods inserted, braces worn, etc. Web and I will deal with that reality when we get to it.Then we were off to the genetics doctor. He looked at her x-rays and told us that they were showing 12 fractures since utero, some were healed, others were healing, some were new. Web and I lost it. What did we do to cause her more breaks? We have been loving and holding her so carefully. The doctor informed us that this was nothing we did while I was pregnant or after we delivered. Luckily we had c-section. I can't imagine how many breaks she would have had if she would have been born naturally. Good news is her skull is fine, spine is fine and ribs are fine. All fractures are in her limbs. Thank goodness her ribs were not fractured, because we could be dealing with punctured lungs. Not that her rib bones can't break, but right now we are ok. The genetics doctor did suggest that we check into the NICU at Children's Hospital in OKC to learn how to care for Sweet Caroline. We have to learn how to dress her, change her, burp her, hold her, put her in a car seat, etc. With her brittle bones, we have to be 200% more careful than an infant w/out OI. We can't just hold her ankles to change her diaper. We have to lift her bottom and hope and pray we don't harm her spine. We can't lift her from her bassinet, we have to avoid any all contact with her spine and ribs. The list goes on and on. Web and I should hear from the genetics counselor today and will get our marching orders on when we check into the NICU. Web and I are scared about going into the NICU, but we will do whatever it takes to care for our Sweet Caroline.The genetics doctor talked to us about another doctor in Bethesda, MD at the National Institute of Health. She works with OI patients and literally has them in the pool at 4 months old! Web and I hope to work with her as Sweet Caroline gets older so we can get her strong. There is no FDA approved medicine for OI in infants and children. They say it could be soon, but soon to doctors could be 2, 10 or 20 years from now. Needless to say, we aren't holding our breath. If you want to read more about OI, a great resource is www.oif.org. If you don't, I do not blame you at all. I can honestly tell you that I have just browsed it. Web and I are reading the material that the doctors gave us right now, which is a lot.
OI is a weird one. If you look at Sweet Caroline, there is no way you would know she has it. She is perfect! She has her daddy's eyes and nose. Her mommy's full lips and long fingers and toes. She is doing what all infants her age should be doing, she is growing, eating and stretching her legs. Unfortunately, when she does that she cries and cries later because it hurts her. I have caught myself pleading to her not to stretch her legs, because I don't want to see her in pain. The doctors tell us that she will eventually learn her limitations.
Web and I are fine, we have had many calls, emails, texts over the weekend, plus a visitor from Dallas! If we haven't returned your calls, etc we are sorry but we are so appreciative of your messages! Not only do we have a child with OI, but have a mommy recovering from surgery, plus the everyday newness of being parents! It's been overwhelming to say the least, but we wouldn't trade her for anything.
She is just beautiful and we probably love her even more now than we did last week.
I am rambling. But those of you that know me well, know that I love to get on my computer and just purge information! Thanks to all our friends that have sent flowers, cards, FOOD. We are so grateful!
I love not having to cook right now! Please continue to pray for Sweet Caroline! She could really use them, and if you can throw one in for Web and myself we would truly appreciate that as well.
OI is a weird one. If you look at Sweet Caroline, there is no way you would know she has it. She is perfect! She has her daddy's eyes and nose. Her mommy's full lips and long fingers and toes. She is doing what all infants her age should be doing, she is growing, eating and stretching her legs. Unfortunately, when she does that she cries and cries later because it hurts her. I have caught myself pleading to her not to stretch her legs, because I don't want to see her in pain. The doctors tell us that she will eventually learn her limitations.
Web and I are fine, we have had many calls, emails, texts over the weekend, plus a visitor from Dallas! If we haven't returned your calls, etc we are sorry but we are so appreciative of your messages! Not only do we have a child with OI, but have a mommy recovering from surgery, plus the everyday newness of being parents! It's been overwhelming to say the least, but we wouldn't trade her for anything.
She is just beautiful and we probably love her even more now than we did last week.
I am rambling. But those of you that know me well, know that I love to get on my computer and just purge information! Thanks to all our friends that have sent flowers, cards, FOOD. We are so grateful!
I love not having to cook right now! Please continue to pray for Sweet Caroline! She could really use them, and if you can throw one in for Web and myself we would truly appreciate that as well.
Is this thing working?
So one of my New Years Resolutions, well I wouldn't call it Resolution more like promise to myself is to start a blog. This is mainly for my friends that constantly tell me I need to start one. I am guessing, hoping that maybe this will be better than emails? Who knows. But I also plan on putting pics of Sweet Caroline for everyone to see. Especially for family members near and far. I mean seriously, who wouldn't want to look at Sweet Caroline sitting on Santa's lap?
I am also going to figure out how to post old emails, so everyone that has asked about Caroline's condition will get the original emails. So, I hope I don't bore you with my thoughts. Heck maybe I can even get Web to get on here every once in awhile and he can share his feelings? Stranger things have happened!
I am also going to figure out how to post old emails, so everyone that has asked about Caroline's condition will get the original emails. So, I hope I don't bore you with my thoughts. Heck maybe I can even get Web to get on here every once in awhile and he can share his feelings? Stranger things have happened!
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