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.

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.

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.

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.

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.

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.

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....