Emma Jean Brady
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My name is Donna and on 9-6-03 I had a baby, Emma Jean. She was 15 1/2 ozs at birth, she was 26 weeks and 6 days. The delivery was a cesarean section because I had pre-eclampsia and reverse end-diastolic flow (meaning the baby was not getting the blood she needed to grow). She was born at 21:43. At delivery she was active and I did get to hear her make 2 tinny cries before they took her and tubed her She went right to the NICU where she stayed 110 days before we could take her home.
We had a very long road ahead of us. We have had or still have respiratory distress, apnea-bradycardia, patent ductus arteriosus, thrombocytopenia, hyperbilirubinemia of prematurity, mild acute renal failure, and as with most baby's born before there time, yes, she has severe BPD, gastroesophageal reflux, and poor growth because of the steroids she has been on to help her breathing better. Oh yes, I almost for got, the ROP, but that is getting better on its own.
We have been on a ventilator, a oscillator and a jet ventilator, nasal CPAP, nasal cannula back to the ventilator. This started from day one till they said the words to us that we didn't want to hear "a tracheostomy". On 11-27-03 we went to surgery and they did her tracheostomy and a partial nissen and G-tube.
OK, enough about what the Doc's say is or was wrong with her, here is some of what we had to deal with in are stay in the NICU. It was long and hard to deal with. The days and nights just all started to become one long day. Little Emma was so tiny they wouldn't let us touch her at all. We would go to sit with her feeling there was nothing we could do for her to make her feel better. She was just so tiny and sick. No one thought she would make it more then 24 hours Her 2nd day of life I was awaken by a Doc in my room telling me the baby stopped breathing and was dead for 20 minuets, but they got her back. Now we had to worry about a brain bleed. But thank God she never had one. Time and time again she would stop breathing and we would worry we would lose her. One night when we went to see her at 8 pm there was a mix up in cleaning out her airway, she stopped breathing and her heart stopped. We where there to see are tiny little angle die yet one more time. They had to give her meds to get her heart started again and they had to re-tube her. Dad stayed with her most of the night, holding her hand trying to make her feel better.
The next day we went back in the morning to see her and she was doing great for Emma. Then later that night we went to get something to eat and then back to see Emma at 8pm, but that night when we walked around the corner there was to many people around her bed. I thought to myself, not again! I couldn't take another night like last night. I started to pray as I walked closer to her bed where there was doctors, nurses, respiratory people. They where all working are little girl again. I just started to cry and pray. I asked God to do what was right for her, not for me. If it was better for her to go and be with him, then I would find a way to deal with that; but if it was not her time, then let her live. No matter what I just kept asking him to stop her pain. I looked at the clock and she had been down for 12 minutes. They could not get the new vent tube in this time and every one was looking like this was it, it was over and we had lost her. Then they tried one more time with a stylist, regardless of what it would do to her voice box. I didn't care what it took, as long as she was still with me. It went in and she was breathing again, but on a vet and 100% O2.
From there we had some ups and downs, but none like that. She went from the vent to the CPAP, back to the vent. Then one day she was doing great and we where going to be moved up to the step up part of the NICU (that is where babies stay and grow so they can go home). They moved her and 20 min later she started to breath really bad and they didn't know what was wrong with her. Again we where moved back. She wouldn't keep her sats up over the high 70's. This was a Thursday and this went on like until Monday. They kept telling us if it didn't get any better we would have to again go back on the vent. I was so worried if that happened she would never get off it. I again prayed like I never prayed. I asked God to take me and let her live. I asked him to stop her pain, even if that meant I would lose her. I just didn't want to see her hurt any more.
Then Monday morning they had to do it, again back on the vent, but this time the tube would not go in. After some time the Doc did get it in. Well, Emma didn't want the tube in and about 2 hours later she pulled it out! Then back on the nasal cannula she went. What was happening was she would stop breathing for a short time and shut off her air way. They then called a ENT Doc and he said, "I feel the best thing for Emma is a trach." So the next day she went off to get one. WOW! What a different baby she is today. After 110 days in the NICU, we got to take are baby home .
She has been back to the hospital a few times now and we will be taking her home this time on a CPAP. But that is OK, as long as we have her with us. She eats most of her food by mouth but when she doesn't we use her feeding tube.
After all this, she is now 4 lb.8ozs and she is almost 5 months old. A very happy baby. I thank God every night for giving me one more day with her.
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