We got the greenlight to try the IVF again 4 months after my C-section. We wanted to start ASAP. After we lost our first set of twins, it took more than a year (and 5 IVF cycles) until we had a viable pregnancy again. I'm terrified of getting to July again and not even being pregnant or having any other route to parenthood open.
So, we started our FET (frozen embryo transfer) in October. We only had one frozen embryo to transfer and after a few weeks of hormone treatments, we did the transfer in mid-November.
We only had about a 20% chance of a viable pregnancy (an estimate based on the quality of the embryo and the fact that we were transferring 1). When I got the news that the cycle had worked and I was pregnant, I was in shock! So much of a surprise that I went back for multiple blood tests, just to be sure.
As usual with IVF cycles, our first u/s was scheduled for when I would be 5 weeks + 3 days pregnant, which fell out on Monday, December 5.
On Sunday December 4, I started bleeding - a lot. I was nervous, but I had a ton of bleeding when I was pregnant with the boys and everything had been fine. I called my clinic and they said to come in on schedule for the u/s the next day.
On Monday morning we got good and bad news. The good news was that there was no sign of miscarriage but the bad news was there was no sign of a pregnancy either. The blood test results we got later that day were also okay, but not good - my beta hcg levels had gone up, but not nearly as fast or as high as expected. We were told to come back on Wednesday, December 7 for a follow-up.
Well, this morning, we got definite bad news. Still no sign of pregnancy on the u/s and my blood beta-hcg levels have dropped from 1,200 to 300. Definitely a miscarriage.
So I add another "due date that won't be" to my life -- August 3, 2012 - another day we should have a baby, but won't.
While adopting will take 7 years before we can even begin, we'd been recommended to apply to an organization called Summit, which manages the foster-to-adopt cases. Ideally, we would take in an infant and eventually (when the parents officially lost their rights) we would adopt. About 90% of babies chosen for the foster-to-adopt program are adopted by the foster parents (and we'll try not to think about the 10% chance that the baby we've been raising will be taken away from us).
Unfortunately, we've been categorically denied as prospective foster parents (before they even met with us) because I suffer from chronic depression and take anti-depressants. We are trying to appeal to them. I've been stable on the anti-depressants for years - even with all the hell we've been through recently. Both my therapist and our couple's counselor are writing letters of appeal. So more waiting and uncertainty.
I know we deserve to be parents and that we would be great parents. I just don't know if we ever will be parents (again). I hope so, but I don't know.
Wednesday, December 7, 2011
Monday, November 7, 2011
Nov 8, 2011 - 16 weeks since the boys were born...
Today was the boys' due date.
When I first found out I was pregnant, I thought early November was a fantastic due date this year -- how awesome would it be to be a few days overdue and have a baby on 11/11/11? Then we found out that I was carrying twins. There was no way that I was getting that close to my due date. Oh well - they wouldn't have a cool birthday, but twins! We expected the boys any time in October. Sadly, they came in July. But today is still hard. November 8th, 2011 - another due date passing without a child in my arms.
May 1, 2010; April 18, 2011; November 8, 2011 -- I remember them all.
People have been asking who the boys were named after. We had been planning to explain at their britot (circumcision ceremonies). We never got the chance. So I thought I'd take this opportunity to explain why they got the names we gave them.
Micha was named after David's father's father - Mischa Elman. I love the tradition of naming children after family members who have passed away. Naming after one of our grandfathers was really important to me.
Asaf's name was picked because the boys were due around the Jewish holiday of Sukkot - the harvest festival ("Asaf" means 'harvest'). Later, someone pointed out another meaning of the root word of Asaf's name - 'addition'. Seems an especially fitting name, since he was our 'additional' baby - twin b.
I still can't believe they're gone... I would give anything to get the chance to hold them again. There is a quote that circles among 'baby loss moms' -- "A thousand words can't bring you back, I know because I've tried. And neither could a thousand tears, I know because I've cried". I would do anything, give anything to have my babies with me again, but I know that I can't.
We have visited the cemetery several times, but it's not the same. Whenever I pass by the hospital where they were in the NICU, I find myself thinking I can stop by and visit - but then I remember that I can't.
Life marches on. I have a new job now. I was planning on being a stay at home mom, but instead I'm working in a law firm.
We are still meeting with doctor after doctor - not necessarily looking for answers about what happened because nothing can change what was, but instead looking for the solutions for the future. Getting pregnant again will be so hard, is it worth trying? Will I be able to carry to term? If I can't carry to term, why would I spend so much time and energy on getting pregnant again? No one has the answers, but the doctors are encouraging me to try again. They don't seem to understand. I'm so scared. I can't lose another baby. This is more than just 'another try' -- this is my life, my babies. I'm not sure what we'll do.
We are pursuing adoption as well, but as anyone who has tried that route knows, adopting is incredibly difficult, both emotionally and logistically. Adopting means giving up on so much - a biological child, carrying the child inside me, giving birth under 'normal' circumstances (instead of the craziness of my 2 deliveries), holding our child on the day s/he is born, and so much more. We are willing to give up all of that to have a baby of our own. Unfortunately, adopting isn't that simple. The waiting, the bureaucracy, the uncertainty, the energy, the home visits, the psychological checks, the criminal background checks, the financial inquiries, the unknown. We met with the adoption agency on Sunday and were told that it's a 7 year wait for a healthy baby -- we've been "on the list" for a year now, so we should call back in 5 years and start the process then. 5 years. <sigh>
I hope we do get a child to bring home one day. I'm not sure we will, but only that hope gets me through the dark days. On other days I acknowledge the fact that not everyone gets a happy ending, and I try to figure out who I am if I'm never a mom again.
I don't know what will be. I don't what the future holds for us. I just hope that if we don't get our 'happy ending', we can still learn to be happy with whatever ending we get.
Thursday, August 4, 2011
follow-up with my high risk OB
We met with my high-risk OB (Prof Yossi Ezra) today. As I expected, he has no answers for us. The pre-term labor was totally unexpected and there is nothing he or I could have done differently to prevent it. He said that even if I had gone for a check up the day before, they wouldn't have seen the signs - and by the time the PTL started, there was nothing they could have done to stop it.
With regards to getting pregnant again, he said that there is no reason I shouldn't be able to carry a singleton to term (twins would be super tricky and risky -- but odds are super slim I would get pregnant with twins a 3rd time, even with the fertility treatments). He said there isn't much we can do differently next time either - since we didn't do anything 'wrong' this time. Next time, I would still do the frequent u/s to check my cervical length (which was fine this time, even just a few days earlier). We would add P17 (progesterone) injections - which we couldn't do this time since they don't help with twin pregnancies, only singleton pregnancies. But other than that -- things would be the same and chances are good that I will carry to term.
Because of the C-section, and the fact that I've been pregnant so often (56 weeks total out of the last 2 years) which severely diminishes the store of vitamins and minerals in my body, we need to wait before we try to get pregnant again. Because the paperwork and bureaucracy takes so long to process, I made an appt with the IVF clinic for next month so I can at least get the balling rolling. I'd like to get all the paperwork and re-testing done so that when we can start the IVF again, we are ready. (I'll need the national health care to re-approve my IVF qualifications which will probably take a few meetings with a few specific doctors as well as a ton of testing redone -- STD panel, blood count, clotting factors, hysteroscopy, HSG, etc)
After the trip to the doctor, we made a trip to the Ministry of the Interior (Misrad HaPanim). In general, new mothers don't have to go into the physical office to register their child's birth. You get a temporary birth certificate in the hospital after delivery that has a detachable part where you add the child's first name and mail into the government. They process it and mail you back the official birth certificate. Death certificates you can only get in person. So we went in and met with the special person who handles cases where new parents need to file for BOTH a birth and death certificate. Luckily, we had all the paperwork we needed and the guy was really nice. I now have 2 official birth certificates and 2 official death certificates. He asked us if we wanted to add them to our identity cards (children are listed on their parents identity cards and only get their own cards at the age of 16). We decided that we did. So now, both Micha and Asaf are listed on both of our identity cards, with the initials z"l (standing for the Hebrew version of "of blessed memory"). It's bittersweet...
With regards to getting pregnant again, he said that there is no reason I shouldn't be able to carry a singleton to term (twins would be super tricky and risky -- but odds are super slim I would get pregnant with twins a 3rd time, even with the fertility treatments). He said there isn't much we can do differently next time either - since we didn't do anything 'wrong' this time. Next time, I would still do the frequent u/s to check my cervical length (which was fine this time, even just a few days earlier). We would add P17 (progesterone) injections - which we couldn't do this time since they don't help with twin pregnancies, only singleton pregnancies. But other than that -- things would be the same and chances are good that I will carry to term.
Because of the C-section, and the fact that I've been pregnant so often (56 weeks total out of the last 2 years) which severely diminishes the store of vitamins and minerals in my body, we need to wait before we try to get pregnant again. Because the paperwork and bureaucracy takes so long to process, I made an appt with the IVF clinic for next month so I can at least get the balling rolling. I'd like to get all the paperwork and re-testing done so that when we can start the IVF again, we are ready. (I'll need the national health care to re-approve my IVF qualifications which will probably take a few meetings with a few specific doctors as well as a ton of testing redone -- STD panel, blood count, clotting factors, hysteroscopy, HSG, etc)
After the trip to the doctor, we made a trip to the Ministry of the Interior (Misrad HaPanim). In general, new mothers don't have to go into the physical office to register their child's birth. You get a temporary birth certificate in the hospital after delivery that has a detachable part where you add the child's first name and mail into the government. They process it and mail you back the official birth certificate. Death certificates you can only get in person. So we went in and met with the special person who handles cases where new parents need to file for BOTH a birth and death certificate. Luckily, we had all the paperwork we needed and the guy was really nice. I now have 2 official birth certificates and 2 official death certificates. He asked us if we wanted to add them to our identity cards (children are listed on their parents identity cards and only get their own cards at the age of 16). We decided that we did. So now, both Micha and Asaf are listed on both of our identity cards, with the initials z"l (standing for the Hebrew version of "of blessed memory"). It's bittersweet...
Friday, July 29, 2011
visiting our little boys
This afternoon, we went to visit our little boys. Sadly, we went to the cemetery and not to the hospital. They are buried very close to each other (only one other baby in between them - we didn't think to ask to save the plot next to Micha just in case Asaf didn't make it). Their graves are so very tiny.
We are both still quite numb. I really thought that this would finally be the pregnancy that brought home the baby we would get to keep. We were both so excited about the prospect of raising 2 little boys. We keep getting so so so close to having a child to raise, and keep having that dream stolen away from us.
Jewish tradition is not to buy anything before the baby is born safely. With my first pregnancy, I didn't buy a single thing. When we lost our little boy and girl, I really regretted that I had never bought anything for them - never got to have the fun of shopping and buying for the baby. So this time around, I decided to be positive and I bought some things when I saw something either on a great sale or something really extra cute and special. When I was having a 'bad day' and worried about losing them, I would go out shopping to a baby store, to remind myself that the vast VAST majority of people who get pregnant really do bring home healthy babies.
Alas, once again, lightening struck and we are NOT part of those lucky people.
We are both still quite numb. I really thought that this would finally be the pregnancy that brought home the baby we would get to keep. We were both so excited about the prospect of raising 2 little boys. We keep getting so so so close to having a child to raise, and keep having that dream stolen away from us.
Jewish tradition is not to buy anything before the baby is born safely. With my first pregnancy, I didn't buy a single thing. When we lost our little boy and girl, I really regretted that I had never bought anything for them - never got to have the fun of shopping and buying for the baby. So this time around, I decided to be positive and I bought some things when I saw something either on a great sale or something really extra cute and special. When I was having a 'bad day' and worried about losing them, I would go out shopping to a baby store, to remind myself that the vast VAST majority of people who get pregnant really do bring home healthy babies.
Alas, once again, lightening struck and we are NOT part of those lucky people.
Thursday, July 28, 2011
good bye little Asaf
At 8:30pm today, I had just finished pumping and we were getting ready to go to the hospital to visit Asaf and say good night. I got the dreaded call from the NICU -- come as soon as you can, things got worse.
Completely numb, we drove to the hospital as fast as we could. When we got there, his heart was barely beating and the ventilator was breathing for him. The doctor explained that the kidney failure had gone on too long and his little body couldn't handle it. His heart just gave out.
Sometime between my afternoon visit and this evening, his eyes opened for the first time. We'd like to think that his first and last sight was his mommy and daddy telling him they loved him.
We held him and kissed him and told him how much we loved him. I can't believe we did the same thing with his twin brother just earlier this week.
We are completely heartbroken. I really believed that this could finally be the time when we had the baby we got to take home and raise. But, sadly, that didn't happen.
I don't know what we do next. For the next few weeks, I think we will just struggle through, trying to survive from day to day.
Little Asaf will be buried near his older brother Micha tomorrow morning. We love and miss them both so much.
Completely numb, we drove to the hospital as fast as we could. When we got there, his heart was barely beating and the ventilator was breathing for him. The doctor explained that the kidney failure had gone on too long and his little body couldn't handle it. His heart just gave out.
Sometime between my afternoon visit and this evening, his eyes opened for the first time. We'd like to think that his first and last sight was his mommy and daddy telling him they loved him.
We held him and kissed him and told him how much we loved him. I can't believe we did the same thing with his twin brother just earlier this week.
We are completely heartbroken. I really believed that this could finally be the time when we had the baby we got to take home and raise. But, sadly, that didn't happen.
I don't know what we do next. For the next few weeks, I think we will just struggle through, trying to survive from day to day.
Little Asaf will be buried near his older brother Micha tomorrow morning. We love and miss them both so much.
still waiting for that good news... (Day 9)
Still no urine, still no kidney function. Every day that goes by makes the situation more and more serious. If things don't turn around, we will lose him.
People keep asking why dialysis isn't an option. He is much to small and much too delicate for dialysis or a transplant. Even giving him medication is always a concern. Since he has so little blood, adding just a few ccs of medicine to his IV can raise his blood pressure dangerously high. Since he is so small, his entire system is incredibly delicate. The doctors have to be careful that the treatments they give him don't cause issues in other parts of his body.
When I sit and watch him, I can't imagine life without him. He is a little person, so strong and cute and active. But when I leave the hospital, I remember how serious the situation is, and can't imagine how things will ever get better. When I look at pictures of him, I can't picture how he could ever get big enough to come home. When I visit him in person, I can't imagine how we could lose him.
At the very least, it's good that there is no more bad news to add to the bad news we already have. So far, the issue is "only" his kidneys. Unfortunately, there is no good news either.
People keep asking why dialysis isn't an option. He is much to small and much too delicate for dialysis or a transplant. Even giving him medication is always a concern. Since he has so little blood, adding just a few ccs of medicine to his IV can raise his blood pressure dangerously high. Since he is so small, his entire system is incredibly delicate. The doctors have to be careful that the treatments they give him don't cause issues in other parts of his body.
When I sit and watch him, I can't imagine life without him. He is a little person, so strong and cute and active. But when I leave the hospital, I remember how serious the situation is, and can't imagine how things will ever get better. When I look at pictures of him, I can't picture how he could ever get big enough to come home. When I visit him in person, I can't imagine how we could lose him.
At the very least, it's good that there is no more bad news to add to the bad news we already have. So far, the issue is "only" his kidneys. Unfortunately, there is no good news either.
Wednesday, July 27, 2011
still no good news, but some new pictures and videos
Sadly, our evening visit did not bring us good news. The kidneys still aren't functioning.
We sat and sang to him. It's amazing how stress can make you forget all the lyrics to every song you know! We couldn't sing a single song all the way through. I guess we'll have to print off 'cheat sheets' with lyrics. Any recommendations of good songs to sing?
He is incredibly tiny. He now has a new roommate in the 'critical care' section of the NICU - and she seems HUGE (even though she is also tiny).
We both held his hand as much as possible. The pictures with us really put his teeny tiny size into perspective.
We sat and sang to him. It's amazing how stress can make you forget all the lyrics to every song you know! We couldn't sing a single song all the way through. I guess we'll have to print off 'cheat sheets' with lyrics. Any recommendations of good songs to sing?
He is incredibly tiny. He now has a new roommate in the 'critical care' section of the NICU - and she seems HUGE (even though she is also tiny).
We both held his hand as much as possible. The pictures with us really put his teeny tiny size into perspective.
Here is Asaf holding Daddy's hand:
Here is Daddy standing next to the isolette:
Here is Mommy standing next to the isolette:
Here is a video of Mommy saying 'good night':
We are hoping and praying for good news tomorrow...
another bump in the road (Day 8)
I wish I always had good news to share, but that's not the case.
I met David in the NICU this afternoon. He had spent the morning in the cemetery with the Hevra Kadisha, figuring out where Micha was buried. I had an appt this morning - so we met at the NICU at about 1pm.
Asaf is still having serious issues with his kidneys. A tiny bit more urine this morning, but not nearly enough. The doctor sat down with us to explain what was going on. The biggest problem with his kidneys not functioning is that he can't balance his electrolytes. His heart rate has slowed down, which they think is because of the electrolyte imbalance (he is having an u/s on his heart later today to make sure there isn't inherently wrong and that this is just a side effect of the renal failure). The doctors are trying every medication they can to encourage his kidneys to work and to balance his electrolytes - but there is a limit to how much they can do and how long we can wait for his kidneys to start functioning again. His kidney u/s showed that he has both kidneys and a bladder, all of which look normal and have normal blood flow. So they don't know why they aren't working.
The doctors are doing everything they can, but he can't live without working kidneys. So hopefully his kidneys kick back on in the next few hours/days.
I met David in the NICU this afternoon. He had spent the morning in the cemetery with the Hevra Kadisha, figuring out where Micha was buried. I had an appt this morning - so we met at the NICU at about 1pm.
Asaf is still having serious issues with his kidneys. A tiny bit more urine this morning, but not nearly enough. The doctor sat down with us to explain what was going on. The biggest problem with his kidneys not functioning is that he can't balance his electrolytes. His heart rate has slowed down, which they think is because of the electrolyte imbalance (he is having an u/s on his heart later today to make sure there isn't inherently wrong and that this is just a side effect of the renal failure). The doctors are trying every medication they can to encourage his kidneys to work and to balance his electrolytes - but there is a limit to how much they can do and how long we can wait for his kidneys to start functioning again. His kidney u/s showed that he has both kidneys and a bladder, all of which look normal and have normal blood flow. So they don't know why they aren't working.
The doctors are doing everything they can, but he can't live without working kidneys. So hopefully his kidneys kick back on in the next few hours/days.
Tuesday, July 26, 2011
Videos - because even a picture can't say enough!
The pictures just don't do him justice - we have to take video. It's amazing how much he has a personality already!
Here is Asaf getting his dinner (breast milk, via gavage):
He is always trying to remove the wires. He has pulled out his umbilical line twice! His feeding tube gets pulled out every few minutes. Some nurses have resorted to taping his hands out of the way, so he can't interfere. He is constantly putting his left hand (the one without the IV) into his mouth - getting in the way of the feeding tube and the ventilator.
what the heck happened? (Days 1-6)
As for everyone else, the babies making their appearance at 24 weeks on July 19, 2011 was QUITE the surprise for us as well.
Since I had lost a set of twins at 22 weeks just a year and half ago, when I got pregnant again (especially with twins!), I was considered very high-risk and placed with a specialist doctor. With my first set of twins, baby girl A's water spontaneous broke at 21w6d. My cervix was closed and long, no labor contractions, nothing. Labor was induced, since we were told we couldn't continue the pregnancy after the water had broken. They were born too young to live at 22 weeks on December 26, 2009.
My next pregnancy in the summer of 2010 didn't get far enough along to worry about pre-term delivery. Sadly, we lost that baby at 8 weeks and I finally had a D&C at 10 weeks on September 14, 2010.
This time, I was monitored very closely. Nothing was ever wrong. I had u/s every other week to check on how my cervix was holding up - and it was always longer than 35mm (less than 30mm and you start to worry). No contractions, no pain. I had some bleeding in the first trimester, but that resolved itself and everything was looking great.
On Monday July 18, I was babysitting for a friend and I started to feel a little crampy. I assumed this was normal, either Braxton-Hicks (practice) contractions, or just stretching from 2 growing babies, or just dehydration. I drank lots of water and kept my feet up. I had no trouble going to sleep.
When I woke up on Tuesday morning, I was still feeling crampy. I decided to go to the doctor, "just to check". I knew it was probably nothing, but I was exactly 24 weeks pregnant, which was a huge milestone for me. 24 weeks is considered the beginning of 'viability'. Babies born at 24 weeks have a chance at life. I only lost my first set of twins because they were born too soon --- 24 weeks meant that my boys would at least have a chance at life. David and I had planned to go celebrate that evening.
When I got to the doctor's office, a nurse took my blood pressure/weight/heartrate. I had a contraction while I was sitting with her. These contractions didn't hurt so much - she told me it probably was nothing to worry about because the cramps weren't painful. The doctor recommended an u/s to check my cervical length, even though I had been checked the week before.
I went upstairs and waited for an u/s. The u/s is when everything fell apart. My cervix, which had been so long and closed for so many weeks, was suddenly so short it was barely there (from 36mm to 0.9mm). The tech called the doctor who ordered me directly to the hospital. I was wheeled in a wheelchair down to a waiting ambulance. I called David who rushed to meet me.
There was a discussion about which hospital to bring me to. In the end, we went to the only hospital that had room in the NICU for two 24 week babies - Bikur Holim.
When we got to the hospital, I undressed and the doctor came to see us. He examined me and discovered that I was fully dilated and baby A's feet were already starting to stick out of my cervix. These babies were coming TODAY.
He gave us 2 options -- (1) vaginal delivery with no resuscitation attempts and (2) emergency C-section with the babies being rushed to the NICU. Babies born so little cannot deal with the stress of a vaginal delivery. But a C-section would mean that we couldn't try for another pregnancy for at least a year. The OB tried to tell us that at 24 weeks, the chances of having healthy babies come home were slim - and that since we were so young, we should deliver vaginally and just try again soon. But we just couldn't do that --- not after everything we had been through. We opted to do an emergency C-section with everything being done to save the babies.
The head of the NICU (Dr. Gor) came to speak to us. He was optimistic for the outcome of our little 24 weekers. He reassured us that they would do everything possible to help us bring home our babies.
Baby A (Micha) was born at 13:30 on July 19, 2011 via emergency C-section. His little brother, baby B (Asaf) was born just one minute later. They were rushed off to the NICU while the surgery was finished.
David was able to go down to the NICU to see them after they were evaluated (an hour after birth). He took pictures to show me in delivery. They were soooo tiny.
By the time I was moved from recovery to a room on the maternity floor, it was too late in the day for me to go down to the NICU to see the babies. I was still on lots and lots of meds and pain killers and fell asleep.
The next morning, my epidural was removed and I was taken off of the IV meds. I got to shower (well.... a nurse helped me to a chair in the shower and then poured warm water over me...). Finally, finally, finally - at 10:30am, Dr Gor came to update us. He told us that both babies were doing as well as could be expected. Baby A (Micha) was actually breathing on his own, which was amazing for a 24 weeker. At 11am, I was finally taken downstairs to see my little boys. They were soooo tiny, and I wasn't even allowed to touch them.
We were told that the first 3 days were the most critical. We spent those 3 days in a blur. It seemed that every moment in the NICU had something going on. Nurses were constantly rushing over to the isolettes to respond to the numerous alarms. We were totally overwhelmed by the pace and constant attention the babies needed. We never knew what was minor and what could be a really bad sign.
I was still hospitalized and recovering - David came in the morning and stayed all day. My mother came in from America to see me and meet our babies. On Friday afternoon, we reached the 3 day mark. Both babies were on the ventilator (Micha had gotten tired of breathing on his own), but no major problems yet, which was by itself a minor miracle. Both babies were eating my pumped breast milk (via gavage). All looked good and stable.
With micro-preemies, the main concern for the first few weeks is keeping their blood pressure low. Their veins and arteries are so tiny, that if their blood pressure goes up, they can burst blood vessels. The biggest risk is bleeding into the brain (called a IVH). The boys would have their first brain scans on Sunday morning (5 days old) to see if they had bleeding on the brain.
Saturday morning we had our first big problem. I came downstairs to visit the babies and drop off more expressed milk. Micha's isolette was covered in blood and he had a tube sticking out of his chest. The doctor told me that he had had some bleeding in his lungs. By itself, that's not a big problem once they had it under control and were draining the blood out of his chest. The concern was how that stress had affected his blood pressure, and ultimately his brain. We wouldn't know until the next morning.
Saturday afternoon had the most magical moment. I was allowed to touch Micha for the first time. He was the stronger of the two and was stable. The are 2 concerns with touching the babies - (1) spreading infection and (2) lowering the temperature/humidity in the incubator. I was told that as long as I washed my hands and the babies were stable - I could put my hand into the isolettes for a few moments at a time. I held Micha's hand and was surprised when he squeezed my fingers back. It was amazing. Later, I got to touch Asaf for the first time. He too squeezed my finger. Totally amazing.
Saturday night, I was released from the hospital and got to go home for the first time since I had left to go to the doctor on Tuesday morning. It was so strange and so nice to be home.
Sunday morning, the boys had their first brain scans. Micha, surprisingly, had NO brain bleed - very uncommon in a preemie his size. Asaf has a minor level II brain bleed. For now, that's not a big concern - but he will be checked again in a week to make sure it's not getting bigger. As for what this means for Asaf's development, we can't know until he is bigger. Since the bleed is small and localized, the doctors are optimistic that this won't affect him at all.
After getting the great news from the brain scans, David and I went over to the women's clinic in the hospital. I had been released on Saturday night, but I had to come in on Sunday morning to get my staples removed. We were gone from the NICU for maybe 30mins. (Staples coming out doesn't hurt, but I was surprised when the doctor asked if I wanted to keep them. Ummm.... no thanks...)
When we came back, both of our mothers were sitting just outside the NICU. They had been there since we had left, but weren't allowed in since there was something going on with baby Micha. We sat and waited outside for another hour --- until finally Dr Gor came out to talk to us.
He explained that Micha had a heart attack - which is very rare in preemies, but a clot can happen to anyone, anytime. Since Micha was so small, none of the usual treatments done for a heart attack could be done. They tried to restart his heart for over an hour, but they couldn't. David and I went in to say 'good bye'. His heart was still beating erratically and he was still on the ventilator for breathing. We got to hold him for the first time as he died. We hugged him and kissed him and told him how much we loved him. Then he was gone.
We sat outside the NICU for a few hours, while the paperwork was organized. His death certificate is now in the same envelope as his birth certificate.
Finally, we went home and cried ourselves to sleep.
Monday morning, we went back to the NICU to visit our teeny little Asaf. It's incredibly hard to go back to the same room and see the empty isolette next to him, where his brother used to be. David and I agreed that we while we were spending time in the NICU, the entire focus would be on Asaf. We would mourn for Micha, but not while we were focused on his brother. We talked and sang songs to Asaf and told him how much we love him and how much we want him to grow up big and strong. We went out for a lunch break and came back in the afternoon.
Monday afternoon we got more bad news. Asaf hadn't been urinated for 24 hours. In the NICU, babies are carefully monitored for input (food, IV fluids, etc) and output (urination and defecation). No pee means that the kidneys aren't working. Dr. Gor explained that there were 3 options - (1) a blockage in the kidneys, which would have to be repaired (2) kidney failure that would resolve itself and (3) kidney failure that would not resolve. They were carefully watching his intake of fluids, since they didn't want him to get bloated from fluid intake that couldn't be processed outward. A kidney u/s later showed no blockages. So Asaf was having some level of kidney failure - but we could only wait and see. If his kidneys didn't start working again in a few days (3-5 days), we would lose him. He is much much too small for dialysis or a kidney transplant. We went home and prayed that he would pee.
With a micro-preemie in the NICU, every day there is something else.
Since I had lost a set of twins at 22 weeks just a year and half ago, when I got pregnant again (especially with twins!), I was considered very high-risk and placed with a specialist doctor. With my first set of twins, baby girl A's water spontaneous broke at 21w6d. My cervix was closed and long, no labor contractions, nothing. Labor was induced, since we were told we couldn't continue the pregnancy after the water had broken. They were born too young to live at 22 weeks on December 26, 2009.
My next pregnancy in the summer of 2010 didn't get far enough along to worry about pre-term delivery. Sadly, we lost that baby at 8 weeks and I finally had a D&C at 10 weeks on September 14, 2010.
This time, I was monitored very closely. Nothing was ever wrong. I had u/s every other week to check on how my cervix was holding up - and it was always longer than 35mm (less than 30mm and you start to worry). No contractions, no pain. I had some bleeding in the first trimester, but that resolved itself and everything was looking great.
On Monday July 18, I was babysitting for a friend and I started to feel a little crampy. I assumed this was normal, either Braxton-Hicks (practice) contractions, or just stretching from 2 growing babies, or just dehydration. I drank lots of water and kept my feet up. I had no trouble going to sleep.
When I woke up on Tuesday morning, I was still feeling crampy. I decided to go to the doctor, "just to check". I knew it was probably nothing, but I was exactly 24 weeks pregnant, which was a huge milestone for me. 24 weeks is considered the beginning of 'viability'. Babies born at 24 weeks have a chance at life. I only lost my first set of twins because they were born too soon --- 24 weeks meant that my boys would at least have a chance at life. David and I had planned to go celebrate that evening.
When I got to the doctor's office, a nurse took my blood pressure/weight/heartrate. I had a contraction while I was sitting with her. These contractions didn't hurt so much - she told me it probably was nothing to worry about because the cramps weren't painful. The doctor recommended an u/s to check my cervical length, even though I had been checked the week before.
I went upstairs and waited for an u/s. The u/s is when everything fell apart. My cervix, which had been so long and closed for so many weeks, was suddenly so short it was barely there (from 36mm to 0.9mm). The tech called the doctor who ordered me directly to the hospital. I was wheeled in a wheelchair down to a waiting ambulance. I called David who rushed to meet me.
There was a discussion about which hospital to bring me to. In the end, we went to the only hospital that had room in the NICU for two 24 week babies - Bikur Holim.
When we got to the hospital, I undressed and the doctor came to see us. He examined me and discovered that I was fully dilated and baby A's feet were already starting to stick out of my cervix. These babies were coming TODAY.
He gave us 2 options -- (1) vaginal delivery with no resuscitation attempts and (2) emergency C-section with the babies being rushed to the NICU. Babies born so little cannot deal with the stress of a vaginal delivery. But a C-section would mean that we couldn't try for another pregnancy for at least a year. The OB tried to tell us that at 24 weeks, the chances of having healthy babies come home were slim - and that since we were so young, we should deliver vaginally and just try again soon. But we just couldn't do that --- not after everything we had been through. We opted to do an emergency C-section with everything being done to save the babies.
The head of the NICU (Dr. Gor) came to speak to us. He was optimistic for the outcome of our little 24 weekers. He reassured us that they would do everything possible to help us bring home our babies.
Baby A (Micha) was born at 13:30 on July 19, 2011 via emergency C-section. His little brother, baby B (Asaf) was born just one minute later. They were rushed off to the NICU while the surgery was finished.
David was able to go down to the NICU to see them after they were evaluated (an hour after birth). He took pictures to show me in delivery. They were soooo tiny.
By the time I was moved from recovery to a room on the maternity floor, it was too late in the day for me to go down to the NICU to see the babies. I was still on lots and lots of meds and pain killers and fell asleep.
The next morning, my epidural was removed and I was taken off of the IV meds. I got to shower (well.... a nurse helped me to a chair in the shower and then poured warm water over me...). Finally, finally, finally - at 10:30am, Dr Gor came to update us. He told us that both babies were doing as well as could be expected. Baby A (Micha) was actually breathing on his own, which was amazing for a 24 weeker. At 11am, I was finally taken downstairs to see my little boys. They were soooo tiny, and I wasn't even allowed to touch them.
We were told that the first 3 days were the most critical. We spent those 3 days in a blur. It seemed that every moment in the NICU had something going on. Nurses were constantly rushing over to the isolettes to respond to the numerous alarms. We were totally overwhelmed by the pace and constant attention the babies needed. We never knew what was minor and what could be a really bad sign.
I was still hospitalized and recovering - David came in the morning and stayed all day. My mother came in from America to see me and meet our babies. On Friday afternoon, we reached the 3 day mark. Both babies were on the ventilator (Micha had gotten tired of breathing on his own), but no major problems yet, which was by itself a minor miracle. Both babies were eating my pumped breast milk (via gavage). All looked good and stable.
With micro-preemies, the main concern for the first few weeks is keeping their blood pressure low. Their veins and arteries are so tiny, that if their blood pressure goes up, they can burst blood vessels. The biggest risk is bleeding into the brain (called a IVH). The boys would have their first brain scans on Sunday morning (5 days old) to see if they had bleeding on the brain.
Saturday morning we had our first big problem. I came downstairs to visit the babies and drop off more expressed milk. Micha's isolette was covered in blood and he had a tube sticking out of his chest. The doctor told me that he had had some bleeding in his lungs. By itself, that's not a big problem once they had it under control and were draining the blood out of his chest. The concern was how that stress had affected his blood pressure, and ultimately his brain. We wouldn't know until the next morning.
Saturday afternoon had the most magical moment. I was allowed to touch Micha for the first time. He was the stronger of the two and was stable. The are 2 concerns with touching the babies - (1) spreading infection and (2) lowering the temperature/humidity in the incubator. I was told that as long as I washed my hands and the babies were stable - I could put my hand into the isolettes for a few moments at a time. I held Micha's hand and was surprised when he squeezed my fingers back. It was amazing. Later, I got to touch Asaf for the first time. He too squeezed my finger. Totally amazing.
Saturday night, I was released from the hospital and got to go home for the first time since I had left to go to the doctor on Tuesday morning. It was so strange and so nice to be home.
Sunday morning, the boys had their first brain scans. Micha, surprisingly, had NO brain bleed - very uncommon in a preemie his size. Asaf has a minor level II brain bleed. For now, that's not a big concern - but he will be checked again in a week to make sure it's not getting bigger. As for what this means for Asaf's development, we can't know until he is bigger. Since the bleed is small and localized, the doctors are optimistic that this won't affect him at all.
After getting the great news from the brain scans, David and I went over to the women's clinic in the hospital. I had been released on Saturday night, but I had to come in on Sunday morning to get my staples removed. We were gone from the NICU for maybe 30mins. (Staples coming out doesn't hurt, but I was surprised when the doctor asked if I wanted to keep them. Ummm.... no thanks...)
When we came back, both of our mothers were sitting just outside the NICU. They had been there since we had left, but weren't allowed in since there was something going on with baby Micha. We sat and waited outside for another hour --- until finally Dr Gor came out to talk to us.
He explained that Micha had a heart attack - which is very rare in preemies, but a clot can happen to anyone, anytime. Since Micha was so small, none of the usual treatments done for a heart attack could be done. They tried to restart his heart for over an hour, but they couldn't. David and I went in to say 'good bye'. His heart was still beating erratically and he was still on the ventilator for breathing. We got to hold him for the first time as he died. We hugged him and kissed him and told him how much we loved him. Then he was gone.
We sat outside the NICU for a few hours, while the paperwork was organized. His death certificate is now in the same envelope as his birth certificate.
Finally, we went home and cried ourselves to sleep.
Monday morning, we went back to the NICU to visit our teeny little Asaf. It's incredibly hard to go back to the same room and see the empty isolette next to him, where his brother used to be. David and I agreed that we while we were spending time in the NICU, the entire focus would be on Asaf. We would mourn for Micha, but not while we were focused on his brother. We talked and sang songs to Asaf and told him how much we love him and how much we want him to grow up big and strong. We went out for a lunch break and came back in the afternoon.
Monday afternoon we got more bad news. Asaf hadn't been urinated for 24 hours. In the NICU, babies are carefully monitored for input (food, IV fluids, etc) and output (urination and defecation). No pee means that the kidneys aren't working. Dr. Gor explained that there were 3 options - (1) a blockage in the kidneys, which would have to be repaired (2) kidney failure that would resolve itself and (3) kidney failure that would not resolve. They were carefully watching his intake of fluids, since they didn't want him to get bloated from fluid intake that couldn't be processed outward. A kidney u/s later showed no blockages. So Asaf was having some level of kidney failure - but we could only wait and see. If his kidneys didn't start working again in a few days (3-5 days), we would lose him. He is much much too small for dialysis or a kidney transplant. We went home and prayed that he would pee.
With a micro-preemie in the NICU, every day there is something else.
Day 7 - one week old!
Asaf is one week old today. What a crazy crazy crazy week.
So far, things are going quite well. We had a scare yesterday, since he stopped urinating for more than 36 hours - but it seems that he has started to pee again today. Of course, we are never out of the woods -- just always waiting to see what will go wrong next. No new problems today - which is great from what other preemie moms have told me.
He has put on weight -- he was born at 530gr, he went down to 500gr (normal weight loss after birth) and is now up to 570gr!
I asked when I can get to hold him (for now, I'm allowed to put a hand into the isolette to touch him, so long as he is stable and warm, for a few minutes at a time). I was told that once he weighs 1 kilo and is off the ventilator, I can start doing "kangaroo care" and hold him skin to skin. Hopefully in a few more weeks.
It's really hard adjusting to having one son, when we were expecting 2. Of course, I'm hoping and praying I get to bring Asaf home, but it's really hard to readjust from being a 'twin mom' to being a mom of one.
C-section recovery is fine. I still can't believe I've had a C-section! I guess the giant scar will help remind me.
Pumping is hard. So very hard. So tedious and time consuming. But it's so rewarding to watch them feed him my milk, so I'll keep doing it for now. I'm also hoping to one day breast feed - so I've got to keep my supply up.
It's so hard to grieve for one baby, while trying to celebrate the lives of his twin. I'm trying to compartmentalize, so that when I'm at the hospital, the complete focus is on Asaf. It's just so sad to see the empty isolette next to him....
So far, things are going quite well. We had a scare yesterday, since he stopped urinating for more than 36 hours - but it seems that he has started to pee again today. Of course, we are never out of the woods -- just always waiting to see what will go wrong next. No new problems today - which is great from what other preemie moms have told me.
He has put on weight -- he was born at 530gr, he went down to 500gr (normal weight loss after birth) and is now up to 570gr!
I asked when I can get to hold him (for now, I'm allowed to put a hand into the isolette to touch him, so long as he is stable and warm, for a few minutes at a time). I was told that once he weighs 1 kilo and is off the ventilator, I can start doing "kangaroo care" and hold him skin to skin. Hopefully in a few more weeks.
It's really hard adjusting to having one son, when we were expecting 2. Of course, I'm hoping and praying I get to bring Asaf home, but it's really hard to readjust from being a 'twin mom' to being a mom of one.
C-section recovery is fine. I still can't believe I've had a C-section! I guess the giant scar will help remind me.
Pumping is hard. So very hard. So tedious and time consuming. But it's so rewarding to watch them feed him my milk, so I'll keep doing it for now. I'm also hoping to one day breast feed - so I've got to keep my supply up.
It's so hard to grieve for one baby, while trying to celebrate the lives of his twin. I'm trying to compartmentalize, so that when I'm at the hospital, the complete focus is on Asaf. It's just so sad to see the empty isolette next to him....
Subscribe to:
Posts (Atom)