My wife and I had a 5 year plan that revolved around having a baby. For 5 years every major decision we made circulated around this baby. Finally, the time came for baby Francisco to become a reality. We had almost a year of complications and negative pregnancy tests. When the magical day came that we were pregnant not only would we have baby Francisco, but we were having the Francisco Twins! We could not have been happier.
The first trimester was not too bad. I mean my entire body cavity filled with fluid to the point that I couldn’t breathe, but I was pregnant and the best thing to get rid of fluid was salt (Yay Chinese food!)I wasn’t allowed to exercise or have sex because I bled all over, but I was pregnant and now I could catch up on all my TV shows! My morning sickness was minimal but even that just meant I was pregnant!
The second trimester is when things started to fall apart. The 20 week ultrasound turned out to be a little less than exciting. We went in expecting to find out genders but we found out that both babies were much smaller than they should be. So far they were only about 2 weeks behind, but they were twins so that could just be how they would progress. Max had a bilobed placenta which could cause the size issue, but most likely when we came back in three weeks to follow up they would be fine.
Those 3 weeks slowly crept by as I anxiously waited hoping to hear that the babies were fine. The day before my 23 weeks ultrasound I found myself in the hospital bleeding, but with no diagnosis. After scans, a nonstress test, and blood work there was no cause for this bleeding, so we were just going to wait till the morning and see our beautiful babies on the ultrasound.
When the doctor did the ultrasound he quietly took every measurement twice, looked at me, and broke my heart. He told me that because of his extreme growth restriction twin B (Max) was not going to make it. His placenta was two weak being split in two and he hadn't grown at all in 3 weeks. He was alive now but there is no way he would be alive next week. Twin A, also growth restricted was growing but may not make it. Her best chance was her brother passing so that she could have more room and nutrients. He actually used the words that we would need a miracle for Max to survive. At that point they were both so tiny that even if we tried to deliver them there was no medical equipment that could support them.
From this point on no one could refer to my babies as twin a and b; they were Max and Penny and we were only interested in doctors who would at least try and save them.
We were told Max had no chance by most doctors, if he made it to delivery he would not survive being delivered, or if he did survive delivery we were looking at minutes/hours at best. After many phone calls and boxes of tissues we found a practice that said they would try and even thought they could help Penny at the minimum. I had to get more blood test and ultra sounds done and start round one of rescue steroids because I could be delivering any time. The steroids were to help with the lung development.
We met with the NICU we would be using and heard all the statistics of survival rate and complications for babies that premature, but everything was proceeded with, "but your babies are much smaller so take that into consideration". Everyone was on board to save the babies but we were not looking at the brightest of futures and many many months of living in a hospital.
The 25 week ultrasound day came and I was terrified to hear that Max was gone, but he wasn't! Not only was he still alive but he was 410 grams! If he was delivered there was a 25% chance he would be survive. His sister Penny also grew and was 600 grams. Max’s cord blood was no longer flowing the way it should. He was intermittent absent which meant I would have to be seen every week now.
We had a week and 2 days of rejoicing that Max had grown and we may walk away from this with our babies. Then I landed back in the hospital. Horrible cramps, dehydration, vomiting, and a diagnosis of gestational hypertension. I was officially taken out of work, received round 2 of the rescue steroids, and now had to come to the hospital to be monitored every other day. Max’s cord blood was fluctuating between absent and intermittent absent. Once it went from absent to reverse it would be time to deliver.
Each visit his placenta got a little worse and both babies grew very slowly, but they grew and lived. Every visit it felt like I held my breath until someone said Max was still with us!
At 28 weeks 5 day I was in for my regular scans and Max's placenta had stopped working. His cord blood was flowing in revers and it was time to get them out.
Max and Penny entered the world by emergency c-section only a minute apart. Both babies were immediately put on ventilators and rushed to the NICU. Max was 1lb 4oz 12.25 inches and Penny was 1lb 14oz 12.5 inches. Because of the growth restriction Max's lungs and liver were not in great shape.
We spent 76 days in the NICU with Penny and 101 with Max. They were long, hard, and exhausting with many ups and down. In the end though we got what so many doctors said was impossible two perfect healthy babies that have made our lives complete.
I was born with gastroschisis which led to some pretty severe issues when I was 25. I had a pretty massive surgery to rearrange some things. But the doctors and surgeons had cleared us to try and have a baby and said it would cause no problems with pregnancy.
We found out we were expecting in February and Jacob was due on October 15, 2014. I went into preterm labor at 24w5d. I was transported to a hospital with a high level NICU. 8 days later Jacob was born at 26 weeks gestation (14 weeks early). He weighed 2lb on the dot and was 14 inches long.
Jacob was automatically intubated and put on a regular ventilator. On day 3 Jacob was diagnosed with a pulmonary hemorrhage and was put on a oscillator which is a step above a conventional vent.
He was on this for 10 days the first time. The same day they done a Ultrasound of his brain because of a low blood count. The found that Jacob had a bilateral grade 4 IVH. He had a ultrasound to follow this every 2 weeks the entire time he was in the NICU.
The 2nd Ultrasound told that Jacob had some PVL changes. This was pretty devastating for us because that meant his chances of having severe problems when he got older were greater than 90%. Over time the blood decreased and there were no other changes such as PVL or fluid build up (hydrocephalus).
A bleed as severe as Jacobs and with the changes in the brain could mean problems down the road. It could be something as simple as a speech problem or something has severe has Cerebral Palsy. Not long after the first cranial ultrasound he was also diagnosed with a PDL. Which is a valve in the heart that is suppose to close after birth but didn't. The monitored this but eventually got small enough that they were not worried about it. No problems with that other than a small heart murmur that comes and goes.
When Jacob was 8 weeks old he got very sick (while still in the hospital) he had a severe lung infection. He was actually put back on a ventilator again. After the cultures came back they were positive for MRSA and E.Coli in his lungs. After 14 days of pretty strong antibiotics he was on the mend.
Jacob spent 96 days in the NICU and come out with pretty severe diagnosis. He will be 1 in a week and a half and so far shows no signs of CP or any other condition from the brain bleed. He is crawling, trying to walk, pulling himself to stands, talking (mama, bye bye) and is the happiest baby we have honestly ever seen! We are very thankful for all our NICU staff. Most of all we are thankful that God was with (is still with) Jacob every day he was there. Thankful that God was with every hand that touched him!
Our little 2 pound miracle is the light of our lives!
My daughter Nova was born at 37 weeks. However, our story didn't start there. We discovered at 19 weeks pregnant, there was something wrong.
"We can't find the stomach and are sending you to a high risk specialist."
I wasn't sure how to comprehend that. How can a baby be born without a stomach? We soon learned she had a stomach, it just wasn't showing up because it wasn't connected to the esophagus like it should be. There was a gap. We were offered many times to have an abortion. There are numerous health issues that can come along with EA, that they couldn't check for until she was born. We didn't even need to think about it, we were going to give birth and fight with our daughter to live.
She was born at 37 weeks and I held her for just a moment before she was rushed to the NICU. Seeing her hooked up to machines and wires and the beeping noises was scary. But what was more scary, was when setting the wires and machines as normal.
After three months in the hospital, 5 surgeries, a feeding tube, a connected esophagus, and hundreds of new medical terms, we were sent home. I wish I could say that was the end of our journey but it was only the beginning.
After a week home, we were helicoptered back to the hospital where they stretched her esophagus open, and found a stage two laryngeal cleft. After two days we were sent home again. After another ten days and her having trouble breathing, we brought her to a new hospital. The only hospital in the country that specializes in her defect. We spent another four months in the hospital, another 10 surgeries, starting from scratch on her esophagus, discovering severe tracheomalacia and having to stitch her windpipe to her spine, we were finally released.
Nova is now 16 months old. She goes back for follow ups every few months, however she is now feeding tube free and has caught up on all her milestones.
I always hear "I don't know how you do it" but I beg to differ. It's easy to do what I did, to stand by your child, go without sleep, pray from morning to night, and do everything possible for your child.
What my daughter did though? I don't know how she did it. I don't know how she continues making step forwards, smiling and laughing after coming out of surgery, and defining bravery and strength to me every day