I'll never catch up...
12 years ago
Thursday, June 24, 2010
Other Mamas dealing with TD
There is a facebook group that is for family members of babes with TD. It has helped me cope alot, and meet other mamas going through, or have gone through, this experience with their babys. Right now there are a couple other mamas that could also use any positive thoughts and prayers. One is Anna, and her little babe Faith (her blog is here: http://mybabyfaith2010.blogspot.com) and Amanda, and her babe Chloe. Also, Jackie just gave birth to baby Jerry who had TD and lived about an hour and a half, and Cambyre recently had baby Zannah.
29 Week Ultrasound
Here are a couple pics of Mark at his 29 week ultrasound...the first is of his little arm and hand, and the second is his face :)
All of the Prayers have Worked!
...for now at least! Keep them coming!!!!
We drove to the hosptial Wednesday morning with VERY heavy hearts...everything was making me cry. As John and I walked into the hospital to be induced, all I could think of was "I am walking into the hospital with my baby, and I will be leaving without him". Not fair. I want him. I want to have that ecstatic feeling you get when you know it's time to go home and start your new life with your baby. But I knew I would be handing him over to God.
I registered, and as I got settled in triage waiting for my OB, Johnny got the camcorder out and we started the film of Mark's birth. We did this with Michael too. We started out before induction and would film every hour or so updates, the clock on the wall, my progress, etc. Last time it was really happy, this time both John and I were teary as we told the date and time.
When my doc came in, I was fully expecting her to go over the process again, the risks of staying pregnant, and all that stuff they go over before being induced. We also had an ultrasound tuesday, and knew she would be going over that with us. We got a total different direction. She told us that the prognosis was the same as per the US. Not a shock. His head is measuring 32 weeks and I'm at 29 weeks, so really his head has slowed down it's growth! a good thing. My fluid level is high, but still within normal range. Another good thing! The issue is my liver enzymes. That is the reason we would induce. HOWEVER...she explained that we could wait a couple weeks if we were prepared to be monitored closly! She explained that my liver is not in imminent danger of failure, though this can change quickly. She said that she is confident that if she keeps a very close eye on me and tests my levels alot that we could keep Mark with us a bit longer. Why, John asked, did the OB on call this weekend express an urgent need to get this baby out ASAP?
She explained that the Dr. on call Friday (who is a great dr.), as most doc's would do, expressed an urgent need to have this done because medically my liver is not good. The baby's prognosis is not good. Why risk any risk to mother, when the outcome for the baby will be the same? BUT, my doc knows John and I. She delivered Michael and went through this ICP with him as well (though not as severe). She also knows that spiritually it is very important for John and I to have as much time with Mark as possible, regardless of the inevitable outcome. So, most docs would induce due to the medical perspective. But she is here for us not only medically but also spiritually. She said that she wants me to come in for regular blood testing and ultrasounds. Once my levels are close to 1000 she will induce. Also she wants me to watch for bruising or bleeding (out of any orifice) which would indicate a clotting problem. I am to avoid a c-section at any cost due to ICP causing a vitamin K deficiency hence the possibility of hemmorage.
I love her for this!! This will give Mark a bit more time to grow, making him a bit more mature, making the possibility of him living longer on the outside once he does come. We are so excited :)
I want to thank you all soooo much for your thoughts and prayers! God does hear us.
We drove to the hosptial Wednesday morning with VERY heavy hearts...everything was making me cry. As John and I walked into the hospital to be induced, all I could think of was "I am walking into the hospital with my baby, and I will be leaving without him". Not fair. I want him. I want to have that ecstatic feeling you get when you know it's time to go home and start your new life with your baby. But I knew I would be handing him over to God.
I registered, and as I got settled in triage waiting for my OB, Johnny got the camcorder out and we started the film of Mark's birth. We did this with Michael too. We started out before induction and would film every hour or so updates, the clock on the wall, my progress, etc. Last time it was really happy, this time both John and I were teary as we told the date and time.
When my doc came in, I was fully expecting her to go over the process again, the risks of staying pregnant, and all that stuff they go over before being induced. We also had an ultrasound tuesday, and knew she would be going over that with us. We got a total different direction. She told us that the prognosis was the same as per the US. Not a shock. His head is measuring 32 weeks and I'm at 29 weeks, so really his head has slowed down it's growth! a good thing. My fluid level is high, but still within normal range. Another good thing! The issue is my liver enzymes. That is the reason we would induce. HOWEVER...she explained that we could wait a couple weeks if we were prepared to be monitored closly! She explained that my liver is not in imminent danger of failure, though this can change quickly. She said that she is confident that if she keeps a very close eye on me and tests my levels alot that we could keep Mark with us a bit longer. Why, John asked, did the OB on call this weekend express an urgent need to get this baby out ASAP?
She explained that the Dr. on call Friday (who is a great dr.), as most doc's would do, expressed an urgent need to have this done because medically my liver is not good. The baby's prognosis is not good. Why risk any risk to mother, when the outcome for the baby will be the same? BUT, my doc knows John and I. She delivered Michael and went through this ICP with him as well (though not as severe). She also knows that spiritually it is very important for John and I to have as much time with Mark as possible, regardless of the inevitable outcome. So, most docs would induce due to the medical perspective. But she is here for us not only medically but also spiritually. She said that she wants me to come in for regular blood testing and ultrasounds. Once my levels are close to 1000 she will induce. Also she wants me to watch for bruising or bleeding (out of any orifice) which would indicate a clotting problem. I am to avoid a c-section at any cost due to ICP causing a vitamin K deficiency hence the possibility of hemmorage.
I love her for this!! This will give Mark a bit more time to grow, making him a bit more mature, making the possibility of him living longer on the outside once he does come. We are so excited :)
I want to thank you all soooo much for your thoughts and prayers! God does hear us.
Monday, June 21, 2010
only 2 more days with my babe
I now have until wednesday at 9:30am before the induction process begins. I'm scared, sad, and I hate the unknown. I had planned to have Mark around for at least another 4 weeks or so.
I have his little outfit, which I had to alter. He's only going to be 29 weeks, so around 2 lbs. I found a 4-5 lb preemie outfit which I cut the legs and arms and hemmed so hopfully it will fit him somewhat. We have a hand print plaster kit. We have a charm braclet with his name...the charms are a cross and an angel. We have a little box for piece of his hair. We have the camera and camcorder ready. I made him an Angels Pocket blankie to be carried to the funeral home in. I made it out of cotton velour and minkee blankie. It is esentially a small blanket with a pocket so you can wrap them up tight in. I also have a pregnancy/birth journal called "In the Company of Angels". It's a baby book for angels. It is still enroute, I hope it gets here soon.
I have 2 more days with my babe...I have been trying to have special private time with him. I have told him how sorry I am for this. I have told him how much we love him and always will. I have told him I cannot wait to kiss him and touch him. I have told him I cannot wait to see him again in heaven.
I have his little outfit, which I had to alter. He's only going to be 29 weeks, so around 2 lbs. I found a 4-5 lb preemie outfit which I cut the legs and arms and hemmed so hopfully it will fit him somewhat. We have a hand print plaster kit. We have a charm braclet with his name...the charms are a cross and an angel. We have a little box for piece of his hair. We have the camera and camcorder ready. I made him an Angels Pocket blankie to be carried to the funeral home in. I made it out of cotton velour and minkee blankie. It is esentially a small blanket with a pocket so you can wrap them up tight in. I also have a pregnancy/birth journal called "In the Company of Angels". It's a baby book for angels. It is still enroute, I hope it gets here soon.
I have 2 more days with my babe...I have been trying to have special private time with him. I have told him how sorry I am for this. I have told him how much we love him and always will. I have told him I cannot wait to kiss him and touch him. I have told him I cannot wait to see him again in heaven.
and now the itching has begun
This is monday...last tuesday night I started to get really itchy at night, I mean really really itchy. I know this itch, it is the ICP itch. I called my OB on thursday morning and asked for a req. to get my bile acids and liver functions taken.
The next morning I get a call from my OB's office saying my liver functions are really high and to go to the OB/Mat and talk to the OB on call about it. It turns out that at 28 weeks my ALT levels were 285 (even with Michael they were at 120 which is high to begin with at 34 weeks). It takes more than a week to get the bile acid test back. The regular liver functions numbers are 0-30. The regular bile numbers are 0-8.5 (I don't remember the measurement sorry!). The OB said she wanted to induce because the risks are very high. The risks apparantly include a vitamin K deficiency (normally it can be handled but my levels are so high), which can cause lowered clotting and I could bleed to death. Also, normally with ICP they let you go to 36-37 weeks and then induce you, so you only are damaging your liver for a couple weeks and the liver will regenerate itself. With me, I'm only 28 weeks, and the numbers will only get higher and higher, causing the liver cells to die, which can potentially cause permenant liver damage, cerosis or liver failure. There were a couple other risks but those are the biggys. She said it might NOT happen, and it MIGHT happen tomorrow...liver enzymes can rise quickly as my situation proved. I told the doc. that I did not want to induce that day...I needed things, keepsakes, and I have an ultrasound appointment tuesday. I want those pics! So, she told me to come in on sunday (yesterday) to get tested again and if the levels went up drastically they would induce then, if not then I could wait until wednesday. The numbers yesterday were only up about 20, so not drastic.
The next morning I get a call from my OB's office saying my liver functions are really high and to go to the OB/Mat and talk to the OB on call about it. It turns out that at 28 weeks my ALT levels were 285 (even with Michael they were at 120 which is high to begin with at 34 weeks). It takes more than a week to get the bile acid test back. The regular liver functions numbers are 0-30. The regular bile numbers are 0-8.5 (I don't remember the measurement sorry!). The OB said she wanted to induce because the risks are very high. The risks apparantly include a vitamin K deficiency (normally it can be handled but my levels are so high), which can cause lowered clotting and I could bleed to death. Also, normally with ICP they let you go to 36-37 weeks and then induce you, so you only are damaging your liver for a couple weeks and the liver will regenerate itself. With me, I'm only 28 weeks, and the numbers will only get higher and higher, causing the liver cells to die, which can potentially cause permenant liver damage, cerosis or liver failure. There were a couple other risks but those are the biggys. She said it might NOT happen, and it MIGHT happen tomorrow...liver enzymes can rise quickly as my situation proved. I told the doc. that I did not want to induce that day...I needed things, keepsakes, and I have an ultrasound appointment tuesday. I want those pics! So, she told me to come in on sunday (yesterday) to get tested again and if the levels went up drastically they would induce then, if not then I could wait until wednesday. The numbers yesterday were only up about 20, so not drastic.
What a couple of weeks this has been...
2 weeks ago tomorrow (tuesday) I had some terrible belly pains, and just thought that it had to due with my growing tummy. When John got home from work I thought that I might be able to walk the pains off, so I went shopping for some goodys. When I got home, I made dinner and went on with our regular evening family activities but the pains continued to get worse and worse. They weren't like contraction pains it felt like the pains I had when I was pregnant with Michael, but more constant and throbbing.
When I was 32 weeks pregnant with Michael, I had stabbing pains in my upper stomach in the general area of my stomach. It ended up being a gall bladder attack. 2 weeks after that (at 34 weeks) I was diagnosed with ICP (Intrahepetic Cholestasis of Pregnancy) after itching like crazy. The bile ducts get blocked due to increased estrogen (I'm estrogen sensitive) and the bile has no place to go so it is sent into the blood stream. The buildup of bile and bilirubin causes unimaginable itchiness...it feels like you're wearing a suit made of insulation, it's an internal itch so even scratching only helps while you're scratching. It is primarily concentrated to the palms of the hands and the soles of the feet, but can be anywhere. It is worse at night. The liver gets damaged from this bile buildup in the blood and the liver enzymes go up. The only way to resolve it is to give birth. The itching can be regulated for some people using Urso, which reduces bile in your body. It takes 2 weeks + for it to start to work and give some relief. It did not work for me. The bile buildup can poison the baby slowly as it passes the brain barrier, and stillbirth is increased to 10%. ICP affects .5% of pregnancies. It normally starts mid third trimester to late third trimester. If you have it once, you will probably have it again and it gets worse each pregnancy (90% chance as it has to do with a sensitivity to estrogen).
So, after getting the boys into bed and watching about 20 minutes of America's Got Talent, I told Johnny I needed to go the ER because somthing was wrong. I couldn't eat, couldn't sit, couldn't sit still it hurt so much. Johnny is so wonderful...I just need to reiterate how much I love him and appreciate him and respect him :) When I got to the ER they sent me up to OB/Mat. The doc. on call ordered bloodwork to see if my liver enzymes were up (indicating the ICP had set in). My #'s were fine so she sent me home, saying I must have eaten somthing bad...though I KNEW I hadn't since I hadn't eaten all day! So I went home, and tried to sleep, but the pain got worse and worse. I even had a bath at 3am trying anything to get the pain to go. I went back to the ER at 4am.
They did all kinds of tests, ultrasounds, and nobody could figure out what was wrong. 2.5 days later after sooooooo much pain (I'd rather be in labour!!), my OB sent for a general surgeon to come and have a look at me. After about 2 minutes he said he thought it was appendicitis. At 9:15 pm that night he had another surgeon come and look at me, and they both said yes, it appears to be the appendix, and had me in surgery by 10 pm that night. My appendix was so far gone it had already partially ruptured and started to go necrotic (where it rots and falls apart)...gross I know LOL I was very very lucky that they caught it. Apparantly pregnancy can mask the symptoms until it's almost too late, so if you have anypain in your upper belly GO TO THE ER, because a ruptured appendix can kill you.
So it has been one week 4 days and I feel great! the incision is looking well, and I feel almost back to normal.
When I was 32 weeks pregnant with Michael, I had stabbing pains in my upper stomach in the general area of my stomach. It ended up being a gall bladder attack. 2 weeks after that (at 34 weeks) I was diagnosed with ICP (Intrahepetic Cholestasis of Pregnancy) after itching like crazy. The bile ducts get blocked due to increased estrogen (I'm estrogen sensitive) and the bile has no place to go so it is sent into the blood stream. The buildup of bile and bilirubin causes unimaginable itchiness...it feels like you're wearing a suit made of insulation, it's an internal itch so even scratching only helps while you're scratching. It is primarily concentrated to the palms of the hands and the soles of the feet, but can be anywhere. It is worse at night. The liver gets damaged from this bile buildup in the blood and the liver enzymes go up. The only way to resolve it is to give birth. The itching can be regulated for some people using Urso, which reduces bile in your body. It takes 2 weeks + for it to start to work and give some relief. It did not work for me. The bile buildup can poison the baby slowly as it passes the brain barrier, and stillbirth is increased to 10%. ICP affects .5% of pregnancies. It normally starts mid third trimester to late third trimester. If you have it once, you will probably have it again and it gets worse each pregnancy (90% chance as it has to do with a sensitivity to estrogen).
So, after getting the boys into bed and watching about 20 minutes of America's Got Talent, I told Johnny I needed to go the ER because somthing was wrong. I couldn't eat, couldn't sit, couldn't sit still it hurt so much. Johnny is so wonderful...I just need to reiterate how much I love him and appreciate him and respect him :) When I got to the ER they sent me up to OB/Mat. The doc. on call ordered bloodwork to see if my liver enzymes were up (indicating the ICP had set in). My #'s were fine so she sent me home, saying I must have eaten somthing bad...though I KNEW I hadn't since I hadn't eaten all day! So I went home, and tried to sleep, but the pain got worse and worse. I even had a bath at 3am trying anything to get the pain to go. I went back to the ER at 4am.
They did all kinds of tests, ultrasounds, and nobody could figure out what was wrong. 2.5 days later after sooooooo much pain (I'd rather be in labour!!), my OB sent for a general surgeon to come and have a look at me. After about 2 minutes he said he thought it was appendicitis. At 9:15 pm that night he had another surgeon come and look at me, and they both said yes, it appears to be the appendix, and had me in surgery by 10 pm that night. My appendix was so far gone it had already partially ruptured and started to go necrotic (where it rots and falls apart)...gross I know LOL I was very very lucky that they caught it. Apparantly pregnancy can mask the symptoms until it's almost too late, so if you have anypain in your upper belly GO TO THE ER, because a ruptured appendix can kill you.
So it has been one week 4 days and I feel great! the incision is looking well, and I feel almost back to normal.
Friday, June 4, 2010
26 Week UltraSound
I had my 26 week ultrsound this Tuesday. I was so excited to see baby Mark! I brought Johnny's mom with me to see (she's visiting from out East). The ultrasound was to look for excess fluid, and to do growth measurements. The tech. was really nice, and did give me some of her feedback on what she saw but couldn't tell me certain things (I have to wait to see my OB next friday for the complete report).
What she did say was that there are some changes from the last 20 week ultrasound. Mark's head is growing larger than it should be at this gestation, and the shape is changing a bit...his skull is taking on the shape of a clover leaf, which is consistent with the TD type 2. This did not make me happy, of course. I was really hoping that they were wrong and that this US would show him normal and healthy...I know, a pipe-dream, but I'm his mama and I'm entitled hope. Then to see his little limbs had only grown about 2mm in 6 weeks...that made me cry. His limbs are measuring the length of a 15.5 week old baby, almost 11 weeks behind.
He looks so amazing though! he's gorgeous, and so cute with that little button nose and big kissable lippys :) he's going to have a bunch of smooches planted on those lips as soon as I get to hold him! he was moving like crazy...the tech would go to point out a hand just to have him wave quick and take off turning around LOL. The good news is that my fluid levels are just fine for now. The tech was great and took a bunch of the pics she got and put them on CD for us instead of just paper.
I've had some bad days, about one a week, where every little thing sets me off. The majority of the time though I'm trying to stay up beat and positive. I'm trying to think of Mark as my little angel baby, that has chosen John and I as his mama and papa for a reason and we chose him as well. This is going to undoubtably be the hardest thing we have been through, but it will be joyous as well in certain ways...to have him grow in me and live under my heart every day makes me so happy I don't want it to end...because I know what the end of the pregnancy will bring. I was soo anxious with the others to have them out and meet them and get on with their lives with us...but it's totally different this time.
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