Backstory

In the beginning there was Zofran. Well not exactly. We tried hard to get Zofran as I vomited copious amounts many times daily but it took several weeks and many trips to doctor and insurance offices to get all the approvals. B”H (thank G-d) in the end, it was covered almost fully and then there was Zofran (Zofran is a very powerful drug originally developed for chemo patients.  It has been used in extreme cases in pregnancy only in the last several years). At this point my pregnancy was progressing like all my other pregnancies. 

Then in the beginning of my second trimester I developed a very painful hernia right under the uterus that needed to be fixed. This meant surgery.  We were apprehensive but knew I needed the surgery as I could hardly walk. After ultrasounds of the hernia, a date was set. It would mean an overnight stay in a hospital in Bat Yam (near Tel Aviv). Since the week of the surgery was the week we were scheduled to do many other pregnancy tests they were all rescheduled to try and do them before the surgery and to give the surgeon a better picture of the pregnancy so that they could take care of me and the baby during the operation. 

This is when the real trouble began. The fetal echocardiogram was ok, but the large physiological scan showed that the baby was too small. In fact the doctor could not even see what he needed to. Ok, no big deal I thought. I have had IUGR (intrauterine growth restriction) before. The doctor suggested that I come back in 2 weeks to do the scan again after the surgery. 

B”H the surgery went well and was successful. It took about a week to a week and an half to recover. At that point I had a two week period where I felt better than the rest of my pregnancy. The nausea was under control with the Zofran and the pain from the hernia was gone. I could move about the house and be productive and was feeling good. However, many good things come to an end. At the next ultrasound I was diagnosed with a rare presentation of a rare condition called placentomegaly.  Usually, in placentomegaly the placenta is too large, in my case it is too thick. I also had IUGR. However the organs seemed to all be present with one (two) exceptions. They could not see any arms.

The doctor tried to reassure me that it could just be the position and again asked me to come back in a week. I have honestly never really thought about what life would be like without arms. We have all seen the videos of inspirational people with this challenge, but how many of us have really stopped to think about how much we use our arms and hands on a daily basis? It would be a monumental challenge.

Imagine our immense relief when, a week later, the doctor announced that the baby not only had two arms but that they  were both fully formed and so were the hands! There was a lot of relief. For the first time in my life I thanked Hashem (G-d) for the use of my arms.

At this point I started to see a high risk specialist. The Dr. told me that there were many risks with my condition both for me and for baby.  I would start getting ultrasounds every other week to keep an eye on the baby’s growth. He said that I would probably have the baby early and that at some point the baby would most likely just stop growing. I would also have my blood pressure monitored weekly to keep an eye out for problems arising with me. 

Then came the next blow. At the next ultrasound not only was the baby very small but my amniotic fluid (measured as AFI) was low.  That’s when I was hospitalized for the first time. I have had low AFI before, but this was much lower. After several days in the hospital and a round of steroids (to prepare the baby’s lunges and brain for early birth) I was released to bed rest at home. However, I was to get ultrasounds twice a week now. 

For the next three weeks we struggled with running a home and getting everything done while Ima (mommy) couldn’t get out of bed. Thankfully we live in a great community. Our upstairs neighbors sent dinner for a week straight. Another neighbor has been taking our kids on a moment notice every time something goes wrong.  When we tried to hire help but hard a hard time finding someone with enough experience (who could cook, clean and change a diaper) and who was reliable to actually show up, a local seminary started sending girls several days a week to help with the house. They have been great. 

Then the AFI started to get lower. I was sent back to the ER on a Thursday and spent the whole day there. The monitors at first were not encouraging and when they repeated the ultrasound at the hospital with better equipment they saw that the AFI was lower and the baby was smaller than they had thought at the doctor that morning. I was convinced that I was there to have the baby. Fortunately, the monitors got better and eventually, much to our relief; I was sent home but told to follow up with the high risk clinic on Sunday.  Sunday morning the AFI dropped even further. It was now 5.5 (it should have been 14-20). I was sent back to the hospital with the clinic doctor saying “this is getting dangerous.”

At the hospital we got more bad news, with the better equipment and a doctor doing the scan (as opposed to a technician) my AFI was actually 3.5 and the baby was again smaller than previously thought. I was immediately hospitalized. The next morning I was sent to a radiologist to try to work out which ultrasounds were more accurate. Unfortunately, she confirmed that the baby was actually in line with the smaller measurements and that the AFI was indeed at 3.5. She also noticed something that worried her. There seemed to be an issue with the kidneys or liver, but she couldn’t see clearly. She said I should be seen again the next day and she would ask her boss to help confirm. 

When I went up the next day there were about 4 or 5 doctors in the room. You see, I have been told by many doctors that my condition is so rare that if you see it once or twice in your whole career you are seeing it a lot. This time we got a little good news. While the AFI was still way to low the baby had turned over and they could now clearly see the kidneys and the liver. There was not physical deformity! Hodu L’Shem (praise G-d)!

When the perinatologists (high risk specialists) got the results of the ultrasounds they decided to give me a second round of steroids. This means that I will not be leaving the hospital until the baby is born and that they expect that I will give birth sometime in the next 10 days to 2 weeks.

We are now in a waiting game. They are trying to keep me pregnant as long as possible but they are simply waiting for any sign at all of deterioration in either me or the baby. Then I will be rushed to the OR and have the baby. 

The staff here has been really nice. All the Doctors, nurses and even cleaning staff knows be by name and everyone has done everything they can to try to make things better. A neonatologist (pediatrician who specializes in preterm babies) was sent down to talk to me about what to expect and a NICU (neonatal intensive care unit) nurse gave us a tour of the new NICU. It just opened last week and is now the best and highest rated on in the country. 

She showed us the rooms and the incubator. She showed us the feeding tubes and breathing support that babies usually need. We discussed procedure and how things work. She even showed us a baby about the approximate size of our baby now. It was so small! I really hope and pray to have time for the baby to grow more. It is now around 850-890 grams (less than 2 lbs) even at a kilo the baby will be really small but if we can get that big it will have a better chance.  We then saw the step down where babies go when they are still small but can breathe on their own, regulate their body temperature, eat on their own, and have reached a certain weight. 

All this information really helped us to have a sense of where we are headed. It’s hard to know what will be when everything keeps changing from day to day and no one really know exactly how to treat me or what to expect when. Sometimes it really feels like we are on a roller coaster that we cannot get off of. There are ups and downs, sometimes it is really terrifying and sometimes there is exhilarating relief. I know it will only get more intense from here.  The only thing that has kept us going is our belief that Hashem (G-d) only does for the good even if we cannot see it as good now and that he is here with us watching over us.  We ask that everyone daven (pray) for me, Rivka Batya, bas Devorah Rut, for health and for a baby that will be strong enough to have a fighting chance once it is born, whenever that will be. Thank you.