Troubles in the waters started when I was just 23 weeks pregnant. I started bleeding a little here and there unexpectedly. It turns out Elizabeth's placenta detached. The fancy medical term is an abruption. The bleeding caused some contractions so I was transported by helicopter to University of Maryland Hospital in Baltimore. The hospital is an hour and a half away from home. I made it on full bed rest for three weeks there. Thanks to God!
Bed rest in no way shape or form is fun. It absolutely stinks. I had to use a bedpan and lets just say all the medication that they gave me to stop my contractions made my tummy upset. The nurses were wonderful but my three week stay wasn't a spring picnic. I was worried sick and all I wanted to do was make it one more day. I did have several visitors and I had a TV but in the back of my mind all I could think of was that I didn't want to have the girls yet.
On October 24th I started bleeding again and had contractions. I knew this was it. I cried my eyes out and begged God to stop my contractions. In the thick of my sorrow the Chaplin came in to visit me as he did regularly. He said something to me that at the time made perfect sense. He said that I did my best and that this chapter was over and that now I needed to prepare myself for the next chapter. It was exactly what I needed to hear. I stopped crying and as they say "put on my big girl underwear" and tried to mentally prepare myself. My girls were born the next morning on October 25th at 6:01 and 6:04. Abigail weighed 1 pound 11 and Elizabeth weighed 2 pounds 4. Thanks to a hospital social worker I was able to get into the Ronald McDonald House. I would end up living there from November to February.
In the beginning my girls were in the NICU in a room called the ELBW room- Extremely Low Birth Weight. The first few days the girls were in the NICU I cried every time I went in to see them. It got easier as the days went on. The Nurses there took amazing care of my girls and they also helped me out along the way. The girls were both in very critical condition. Five words can sum up there first couple of months in the NICU-intubation, transfusions, ultrasounds, labs, and bradycardias.
At two weeks old my husband and I got the horrible news that both of my girls had severe brain bleeds shortly after birth. Abigail had a bilateral 3 and Elizabeth suffered a grade 4 (the worst possible bleed). The news took my breath away and I cried for a full day. The news was devastating and all the doctors could say was that we just had to give it time to see what damage it had caused. Abigail developed hydrocephalus due to her bleed and then the news came that she would have to be transferred to Hopkins to be shunted and to be followed by the Neuro team there. The bad news was that the girls would be to be separated. For two weeks I had to go back and forth between two hospitals. It was horrible. I had different doctors, different nurses, and different protocols. Every day I reminded Hopkins that Abigail was a twin and requested Elizabeth to be transferred there too. After fighting with insurance I was able to get Elizabeth transferred. It was bitter sweet because I was leaving the hospital were I spent three weeks on bed rest, the hospital where they were born, and the hospital that took such wonderful care of them when they were so sick, but I also knew that there was no way I could keep going between two hospitals. Johns Hopkins is a wonderful hospital and I am thankful that both of my girls were able to go there.
After Abigail was transferred to Hopkins she became very sick. Both of her lungs collapsed and this caused her hydrocephalus shunt surgery to be put on the backburner. I was happy that her surgery was put on hold but very worried when she got so sick. At this time she was only a little over 3 pounds and the thought of a 3 pound baby getting brain surgery scared me to death. As Abigail's lungs healed her hydrocephalus actually got better and she didn't need to be shunted after all. The nuero team continued to give both girls weekly head scans to watch the progression of their brain bleeds.
As time went on the girls got bigger and their lungs got better. Elizabeth was taken off of oxygen and she learned to breathe on her own. The girls began to start taking a few ml's of breast milk to learn to bottle feed. Right away I noticed that Abigail struggled with feeds like some preemies do. When we learned that Abigail had a hernia and that she would need surgery to repair it, I requested that the doctors put in a feeding tube (G-tube) when she was in surgery because I knew she couldn't take enough by mouth to grow on. I didn't want it to prolong her stay in the NICU and shortly after her hernia was repaired and her G-tube was placed she was able to go home. Abigail went home on oxygen and with a G-tube. Elizabeth on the other hang was taking enough volume of milk on her own but she started to drop her heart rate when she ate. She would drink so fast that she would forget to breathe. She was just a hungry girl and still is. Elizabeth at the time was much bigger than her sister and didn't need oxygen but wasn't ready to go home. She was transferred to a step down hospital and had to stay there for 2 weeks while she learned to slow down when eating. This time of my life was extremely hard too. Having one home and leaving one in the hospital was a horrible feeling. As I got to really learn Abigail's personality and develop a schedule with her I was constantly worrying about Elizabeth. I visited her each night and I cried every ride home. I was so thankful when she was able to come home. My girls spent 123 days total in the three different hospitals. I didn't write about every detail and everything that happened during that time but I just wanted you to get the gist.
If you are a NICU/preemie parent with specific questions about feeding, ROP, intraventricular bleeds, hernias, g-tubes, or anything else please feel free to email me. MBFowler@comcast.net .
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