Emotional days..

I was watching the movie ‘Losing Isaiah’ in Netflix. I selected the movie myself to spend my lazy afternoon :(. I found myself vey emotional past few days and something inside my mind asked me to watch this movie :). I am glad that I did!. It is the story of a crack-addicted mother who left her baby in garbage bin and another mother who is a doctor who adopts that baby and gave him a wonderful life till the baby turns 2 years. Then the birth mother came claiming for the baby. The movie is full of emotions of the birth mother, the adopted mother and the little baby Isaiah. It was really touching!. I cried like a baby for almost one hour :(.

I cannot forget the moment when legal services came and took the baby from adopted mother as per the court order to give him to birth mother after 2 years. That was a heart breaking scene :(. I wondered, I too had 4 situations like this in my life. Only difference is , there were no legal services or no adopted mother…just me and my babies..not 1 or 2 times..4 times…They were taken forcefully from me without even asking me..I cried like a mad girl when I found I lost my babies at 6-7 weeks.. I lost my sleep for weeks..I used to cry with my pillow on my face so that my hubby cannot hear me weeping..I still cry when I think about them.

You are not being forgotten..You will be  in my heart forever.. You were the best.. You gave me the feeling of ‘being mommy’ at least for few weeks..I am thankful for that!. Can I hope that you are guarding your little brother/sister inside me?..I am sure that you are trying to keep your sister/brother safe and healthy..I strongly believe that my little peas..There is no replacement for you..Only mommy was able to feel you..Only mommy can cry for you..Mommy love you a lot!!

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We have a Heartbeat!! <3

I am 6 week 2 day pregnant today!. Today morning we had our second ultrasound and we saw the heartbeat :). We were able to see the GS, YS, Fetal Pole and the tiny flicker!. Baby is measuring 6 w 3 d  (1 day head) and heartbeat was 118 bpm, which is amazing. We were not able to believe our eyes as this is the first time we had a fetus measuring right in track and perfect. SCH (subchorionic hematoma) is still there but reduced to 1.7 mm from 2 mm which is good, but still we are at risk.

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We went to our local RE’s office to take the ultrasound because I never feel that comfort in any other outside imaging centers. So we decided to go there till I graduate to OBGYN. We were with her during our last 2 losses and we never heard a good news from that ultrasound room. During last pregnancy (Exactly on 6 w 3d ) what I heard from my RE was “Are you guys interested in gestational carriers?. This is your 4th pregnancy and this doesn’t look promising too”. I was devastated not due to the “no-hearbeat”, but due to these words from my RE. I was telling myself, “I am born to be a mother, and no one can deny it. Even god!. I will be a mother one day”. This time, she looks so happy about the heartbeat and other measurements. My GS grew to 17 mm from 12 mm last week. She expected little more growth for GS, but she said it is OK for now. Baby’s CRL was 6 mm, which is dated as 6w 3d.  I will continue taking pelvic rest until the SCH resolves. SCH is now as same as the size of sac compared to double size of the sac last week at 5 w 3d.

We are not out of risk. We have that evil SCH still staring at our baby. Hope it will resolve soon. I am thankful to everyone who is a part of our journey. Who listened to us, consoled us, gave us faith and hope…Thank you from the bottom of our heart!.

Good news and Bad news!

Yes, we are pregnant!. I am exactly 5 weeks 4 days today :). We had an early ultrasound yesterday (5 week 3 days) and we were able to see a good sized gestational sac and yolk sac which is pretty expected this early. As I am on daily lovenox and had the history of subchorionic hematoma (SCH) in all my miscarriages, Dr.Kwak Kim wanted us to do an early ultrasound to check for any SCH. You can see the GS and YS in this picture and it is measuring 1 day ahead. With my miscarriages, we always had the issue of small gestational sac and yolk sac. This is the first time we were able to see such a great sized sac this early. This is a huge relief!.

HCG Levels:

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We are little bit concerned about not-doubling hcg levels after 12034. The levels used to rise 3x-2.4x till then. Now it is showing 1.4x rise in 48 hours. I hope this is OK. I have read some papers about hog rising time after 6000 as 96 hours. Waiting for monday’s hcg level (I will be 6 week 0 day then), so that I can get more hope!. Posting the first ultrasound pic from yesterday!

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Bad news is, I have a small subchorionic hematoma below my gestational sac (Almost the size of the sac) which is alarming. SCH happened in all previous miscarriages and my doctors were not sure what is the reason for SCH or whether SCH is triggering the miscarriage. The reason is still unknown and only thing I know is I have SCH with this pregnancy too :(. I was crying with frustration and asking “why me again?”. Good thing is, my HCG is at 16,800 which really gives us hope. You can see the SCH near to my sac in the below picture.

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So, due to this SCH, my doctor’s recommendation is as follows:

  • Complete pelvic rest until the  SCH is resolved
  • Stop baby aspirin completely
  • Stop lovenox for 2 days and start 40 mg again every other day
  • Lots of fluid, no intercouse, no lifting and be “lazy”!

I will be working from home from one week (I work for an awesome company and with awesome people!. My boss told me that i can work from home as much as I want. I am so lucky about that!). Right now, we are waiting for 6 week 2 day ultrasound on wednesday to see how it goes. Hope this evil SCH will not cause any harm to my baby.

If anyone have experience with SCH on early pregnancy, can you share their experience as comments. I would love to hear that.

I have only one thing to say,

My little pea, please hang in there!. Mommie and Daddy needs you!. We are trying our best to keep you safe and healthy. Show me your healthy heartbeat on Wednesday to make us happy!. We love you a lot…

Don’t you dare judge me?

Don’t you dare to judge me?. If you know at least 1% of what is happening in our life or what we have been going through, you will not judge me. If you are a friend or co-worker or family member who have known us for past few years, you should already know that something wrong have been happening with us, even though we did not share our 2th , 3th or 4th miscarriage news with you (Or some of you already know about my 2nd miscarriage!) . I know that you know well about our first miscarriage which happened 2 years ago.

You know that we were not like this before. We were so happy and peaceful before. We spend hours and hours at friends’s place, late night outs, poker games, dinner gatherings every two weeks with friends all the time. Everything changed after our second miscarriage. When everyone started having kids, we felt like “Why us?”. We never told our issues or shared our agonies to anyone. We never wanted to destroy your mood in gatherings or wanted sympathy for our lost kids. We decided to move on with our own life. Lot of things happened in between. Everyone in our friends circle started having kids. Slowly we found that there is a  lack of topic to talk about while on these gatherings. They all had a lot to talk about pregnancies, morning sickness, kids diapers, sleeping habits etc. You never thought about how a childless lady can get hurt while on these talks. You never thought about how I feel!. My poor husband is more sensitive than me about our lost pregnancies and kids. Yes, men also have feelings (In my case, he had more!).

When you judge us about missing the gatherings, parties, or baby showers, or leaving parties soon after food, I really fell pity for you for judging us. We had to do it lot of times and we are sorry about it if we hurt you!. But, we really needed to do it. Atleast we tried to attend it to respect your invitation.

Yes, Our priorities have changed much! We agree that completely. When you think about how to spend your 8 week long parental or bonding leave, we will be thinking about how to tightly plan our personal time off’s (PTO’s) for our infusions/RE appointments. When you are confused on buying brands for your kids, we were busy shipping blood weekly to Chicago Reproductive Labs for NK Cell testing and Chemistry Panel(You have zero idea about what NK Cell testing is, lol :P). When you were busy planning spending more time after lunch at friends place, we will be planning to leave early from friends place to finish our office work in weekends so that we can relax during our week day infusions. We had to adjust our trips and even grocery shopping due to my timed-twice daily lovenox injections, which is never fun. I know, you did not do it on purpose, but we would love if you understand that we are going through hard times in our life.

My life is now full of daily twice lovenox injections, weekly IVIG infusions, minimum 10 vials of blood every week and alternate day pokes for umpteen monitorings….and how can I forget my stuffed pill boxes? :). Lovenox injections are stingy and I have hard time finding injection spots in my tummy in between the bruises. IVIG makes me dizzy, sleepy and get head ache all day, but it lasts for just one day. Last week, my nurse had issues drawing blood in right arm due to the extremely sore veins and she switched to left arm where the veins are not that great. We are doing our best for bringing our miracle home!. Anything for a baby right?. :).

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Spring, IVIG and 2 Week Wait..

Spring is here <3. My favorite time of the year :). Hope this spring will bring us greatest blossoms in our life this time. Below is the cherry blossoms in Portland, Oregon. Flowers, flowers and flowers everywhere :).

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We had our first IVIG infusion at Dr. Kwak-Kim’s office at Chicago last week. We took our flight to Chicago the day before. Our appointment was at 9 am. We reached her office around 8:55 am. I was taken to the infusion room by the nurse. I took benadryl and tylenol prior to infusion. I was so scared at first and did not feel anything afterwards :). The nurse was so nice and very supportive. Then I was taken to the ultrasound room for checking the blood flow to uterus. I have been on Lovenox (blood thinner) injections and they wanted to make sure that it improved the blood flow to the uterus. Good news is blood flow to uterus did improve a lot and the blood thinner is working as expected. That was a relief. I was diagnosed with PAI-1 Heterozygous, Beta Fibrinogen Heterozygous (Both are blood clotting disorders) and low Protein C. Only solution is blood thinners. We were so happy that the lovenox is working as expected. They also checked my ovaries and found that I have 2 follicles (17 mm and 16 mm) one each at left and right ovary. I was taking Femara this cycle, so this was expected. My uterine lining was 12 mm which is great. Doctor was happy about the overall results and asked us to go ahead with natural cycle. I was so sleepy by the end of infusion (infusion lasted for 3 hours) and slept for half an hour in the most relaxing and comfortable recliner in Dr.Kwak-Kim’s office. We are planning to buy a similar recliner for our home for home infusions :). Our nurse told us it is from LazBoy furniture and planning to get one next week :). We took the evening flight back to Oregon. That was one of the toughest flight trip I have ever been. 5 hours-non-stop-tiring and I was not able to sleep for a minute :(. I slept like a baby when I reached home and took a day off from work. Next day, I had some headaches which was expected. Had lot of fluids and food to reduce the headache and I am glad that it worked well.

Our next steps:

Right now, I am on 2 ww and 5DPO. I started progesterone 400 mg from 3 DPO. I don’t have any discomfort other than little dizziness from progesterone. Only thing I am doing is praying for a BFP. If I don’t get a BFP this cycle, I have to repeat the Lovenox injections, IVIG infusions and many more pokes next cycle too :(. We never had any problem of getting pregnant in the first month of TTC itself. Only issue is keeping my pregnancy past 7-8 weeks. Really really hoping for a BFP and an uneventful pregnancy after 4 losses.

Another update is, I got my liver function test results back and my ALT values are at 264 which is 6X times higher than normal. This can be due to Metformin, Prednisone, Lovenox or IVIG. My doctor is not sure about what caused the sudden spike of ALT, so she asked me to reduce the dose of Metformin for couple of days and take the test again to see if the levels are coming down. She really needed to see a reduction in the ALT levels, or she will refer me to a specialist here in Oregon to see what is happening. We are really worried about the sudden spike in the levels which is really really high. I hope the levels will come down and next blood result gives an answer for the sudden spike. As we have really good hope this autoimmune protocol with blood thinners, I don’t want any other factors interrupting our TTC cycle.

Wishing my blogging friends a wonderful Spring! May all your dreams comes true..

 

Dr.Kwak-Kim’s protocol, IVIG Insurance updates..

All these days, I was trying to keep myself busy with my work. I am happy that I am not looking frequently in to baby center posts or other miscarriage forums with anxiety. At the same time, I am following the updates from my lovely blogging friends and I love to see their latest updates. I even had tears reading some of their updates, which made me so happy!! (Yes ladies, you are amazing!!).

It’s been more than a month since I posted here. I did not have much to update. I was totally busy with my work and the new protocol Dr.Kwak Kim suggested for us. I started taking Metformin (For PCO like symptoms), Prednisone (Steroids for NK Cell Activity) and a bunch of other vitamins from January. I started Metformin gradually with alternate days and now on it twice daily. I had some side effects like diarrhea for first 2 days and now it is completely gone. Prednisone was not friendly with me even though I started it with 10mg dose. It caused some headache (Almost daily) and now I am totally fine. We also got our NK Cells Activity results Post-Prednisone and it came back to 20.8 (It was 26 before). As Dr needs it to be less than 15, I will be increasing the dose of prednisone from 10mg to 15 mg from today. If it gets below 15 during next time, I might not need IVIG infusions. Good to know this!.

A big thing happened in last few days is that our IVIG infusion got approved from CVS/Caremark (A big yaay!! Thank god, I have an amazing insurance from my amazing employer!). They rejected our request initially and we won the appeal!. Cost of a single dose is 2000 $ + infusion service fee, if we had to pay out of pocket. As we got it approved, we have to pay only $35 per infusion. Dr.Kwak-Kim’s nurse Laurie did an excellent job in taking care of all appeals/approvals needed. We never had to worry about a single thing from appointments to insurance approvals. She really knows how to do her job well. She even followed up with us during after hours. We have been dealing with lot of RE nurses for past 2 years and never found anyone like her :).

The next hurdle was regarding the home infusion services. Dr.KK wants us to do the first infusion at her office so that she can monitor us for any allergic reactions. As we live in West Coast it is not a feasible way to fly to Chicago (5 hour flight!) every 3 weeks. We contacted the insurance company and infusion services and came to know that Oregon Law requires a nursing order signed off from a MD in Oregon. They don’t need any prescription order signed off from OR doctor, but they do need a nursing order for doing infusion at home. So we decided to ask our two RE’s in Oregon if they can sign a nursing order for us. We scheduled appointments with my RE-1 Dr.A, RE-2 Dr.H and OB-GYN Dr.T this week and next week to ask they are willing to sign off the nursing order. To our surprise, our first RE agreed to sign off the nursing order yesterday (We went to her office with 0% hope, as she was not willing for any further tests even after our 4 losses). She was so happy to see us again after 5 months (After my 4th loss in September). She also commented “You guys look renewed unlike last time. Good to see you guys like this”. Honestly, I believe that she got a feeling that we have a lot of hope in Dr.KK’s protocol and she just don’t want to ruin that. She also asked us about her patients and their experiences. My best friend’s sister-in-law followed the same protocol and she is due in March. She have exactly the same issues like me (4 losses, blood clotting disorder). Next thing I did was cancelling the appointments with Dr.H and Dr.T. Talking about Dr.H, we are sure that he won’t sign off the orders as he already told us not to involve him in this protocol. So from now onwards we will be seeing Dr.A for all medical needs in Oregon.

We will be starting Lovenox daily blood thinner injections from Feb last week. Luckily, we have a friend who is a nurse. She will help us with injections initially and then my husband can learn from her how to do it. As I am always scared of needles, I am not sure if I can do it myself. Getting poked daily, or stuffing your stomach with 20+ pills or getting intravenous infusions monthly is nothing compared to the crazy pain all these losses gave to me. So, we are moving forward with Dr.KK’s protocol with so much hope. It might not work for everyone, but I strongly believe it will bring my miracle baby home! ❤ ❤ ❤

 

Follow up Appointment with Reproductive Immunologist

Sigh!. I am kind of relieved after talking to Dr. Kwak Kim today morning. Time to update the appointment details.

My issues so far:

  1. BETA­FIBRINOGEN 455G/A GENE POLYMORPHISM – Heterozygous Mutated.
  2. PAI­1 4G/5G GENE POLYMORPHISM – Heterozygous Mutated
  3. PROTEIN S, ACTIVITY – Level is 59 (Ref range 60-140)
  4. MTHFR – Heterozygous Mutated
  5. High Natual Killer Cells activity
  6. Deficient in Vitamin D
  7. Slightly anaemic
  8. Poor Blood flow to uterus
  9. High Anti-Thyroid Antibodies (Anti-Thyro Globulin is 4.9, where 0-0.9 being normal)

We were already aware of  the gene mutation MTHFR-Hetero through the RPL Panel Test which we took last year. Protein S was always at the lower end, but this is the first time it comes below 59. Protein S can go to lower levels during pregnancy.

She also found 11+(1) follicles in my right ovary during the ultrasound last time. She said I have PCOS like ovary. What this means is that you should have 12 or more follicles in the ovary to qualify for PCOS. I have 11+1 (?). We were tested for PCOS with my first RE an year back. The than the number of follicles I never had any symptoms. I always had/have regular cycles (28-35). This is a new information.She suggested eating a low-carb diet and protein rich food

I have small patches like appearance in Thyroid gland and high Anti-Thyroid Antibodies (Anti-Thyro Globulin is 4.9, where 0-0.9 being normal!) in thyroid which indicates Hashimoto’s Disease. I have to check my thyroid levels weekly once I get BFP next time.

Treatment Plan:

  • Prior to conception cycle: Continue Metanx (For MTHFR), vitamin E , Vitamin D3, prenatal vitamins.
  • Start coated or buffered aspirin 81 mg. orally, daily the cycle of planned conception and continue throughout the pregnancy.
  • Iron supplements for my slight anaemia
  • Low carb diet and regular exercise
  • Repeat blood work after 4 weeks for CBC, DHEA-s, DHEA
  • Lovenox, blood thinning injection daily starting from CD-6 of TTC Cycle (For all the three gene mutations and Protein S deficiency)
  • Starting Metformin daily right away for reducing PCOS like ovary
  • Prednisone 10 mg (Steroid) starting from this week. They will check for NK Cell activity after 4 weeks. If it is low after taking prednisone, we will continue with prednisone. Otherwise, IVIG (Intravenous Immunoglobulin) is recommended.
  • Monitor TSH every week once I get BFP
  • Monitor NK Cell Activity every 3 weeks

I am really happy that atleast we were able to find 3 gene mutations and a blood clotting disorder this time. All these three mutations contribute for blood clotting while pregnancy, which can result in fetal demise at 5-7 weeks.These tests were not done previously with any of my REs even after 4 losses.

I know the fact that Dr.Kwak Kim’s protocol did not work for some people who took the treatment. Hoping desperately that this will work for us!

Now it is the time for stuffing my pill box with all these meds!. I hope atleast this protocol will bring my miracle baby home ❤