Sara's mops testimony transcript


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Sara's mops testimony transcript

  1. 1. Hi, my name is Sara Olivieri. Many of you I unfortunately have not had the pleasure of meeting though I have been a part of this MOPS group for over 5 years now. There are many reasons for this. One of which is that I have not been able to attend many meetings in the last couple years. And I will get to the reason for this shortly. But the other reason is I tend to be very slow in feeling comfortable in groups. I am not one to introduce myself to many people. I have always been very self-conscience and not very confident. Hearing this you probably are wondering why in the world am I standing in front of you then? Being up here is definitely out of my comfort zone. I would much rather be in front of a group of kids right now. That is where my gifts lie. Standing in front of this many ladies just makes me scared even thinking of it. But this group has made a huge impact on me and my family and God has laid it on my heart to share what exactly you have done for us. Such a huge impact that a simple thank you note will not suffice. Some of you may not know my story and about my daughter Makayla so I’m going to try to give a brief overview of our story in the midst of telling you what this MOPS group has done for us. But if you have any questions please feel free to ask me afterwards. I really feel like God has given me this story to share it. Our story starts in September 2011, after trying to conceive our 3rd child for several months I miscarried after being pregnant for 6 short weeks. It devastated me and though I never met this child I felt like I had lost someone that I known my entire life. I couldn’t understand why it happened but I knew to my core that God is a good God and whatever the reason it was being worked for my good. That is a really hard realization to come to. Now most miscarriages that early on do not require surgery. For some reason my body didn’t get rid of the baby the way it should have so I had to undergo 2 D C and Es. What I didn’t realize at the time was that God was preparing my body for Makayla’s story. The doctor recommended that we wait 2 months before trying again. Which we did. Immediately upon trying again we became pregnant. I was elated. But my excitement was soon met with fear when I started bleeding again. Exactly what happened with the miscarriage. The bleeding started over a weekend so I called the doctor and she said to wait till Monday to see her in the office. That was one of the longest weekends of my life. That Sunday was my husband’s installation service at church where he was taking over as pastor. I shared with the congregation my fears and they immediately prayed over me. Monday I went to the doctors and they told me to go in for an ultrasound. Much to my relief the ultrasound showed that the baby was fine. It also showed that I had a subdermal hematoma. Which means basically that the placenta didn’t implant right and had pulled away a little bit from the uterine wall. I was assured that as long as I “take it easy” everything should be fine and it will evaporate by the 20th week. Well that’s not exactly what happened. I
  2. 2. continued to have issues with bleeding and was admitted to Altoona Hospital on several occasions for observation. During one of the admissions my doctor ordered another ultrasound. This one showed something far worse than a subdermal hematoma. This one showed that I had placenta previa and placenta accretia. As many of you moms know placenta previa is when that placenta grows over the cervix. Placenta accretia is when your placenta starts growing into the uterine wall and continues to grow where it shouldn’t and almost becomes cancer like. What I didn’t realize was that each time you have a surgery or procedure done on your uterus your likelihood of developing placenta accretia and placenta previa increases. I had 2 c-sections and 2 D C and E’s done which caused my likelihood to be almost 100%. The danger with placenta accretia and placenta previa is that it makes the risk of hemorrhaging and premature birth extremely high. So I slowly was put on more and more restrictive bedrest. My biggest worry was how was I going to be able to feed my family anything besides mac and cheese? My husband isn’t the greatest at cooking and I was only allowed to be on my feet enough to walk to the bathroom and back. And this is when I truly realized how awesome of a group we have here at MOPS and what an incredible God we have. Women who I barely knew started bringing me meals. And then I started feeling lonely and isolated and like I couldn’t do anything with my kids anymore. And the MOPs group sent me a basket full of pampering things and things to do with my kids. And the most awesome thing is that I didn’t utter a word of these needs to anyone. God knew what I needed and he put in the hearts of these wonderful women and they listened! I remained at home on bedrest from 17 weeks till 23 weeks. I continued to be in and out of the Altoona hospital during this time. Then on May 4th , 2012 I began bleeding a lot heavier which caused labor to start. Altoona didn’t feel comfortable with me staying there so they sent me by ambulance to Conamaugh. When I got to Conamaugh they were able to stop the labor but they didn’t feel comfortable letting me go with the amount I was bleeding and the degree that the placenta had progressed. (It was almost to my bladder). So they announced that I would be on hospital bedrest till I gave birth. At this point I was only 23 weeks and 6 days along so that meant I could still have another 16 weeks an hour away from my family. It was hard and lonely news. But yet again MOPs came to the rescue. Some moms came to visit, some sent cards, some made meals, and some sent money to help with the travel expenses. I continued to battle labor and bleeding while on hospital bedrest and they tried every measure they could think of to keep me pregnant as long as possible. I was on different medications and the last week of my pregnancy I wasn’t even allowed out of bed to go to the bathroom. Finally Memorial Day weekend was coming up and a doctor at Conemaugh had a conversation with me that I still am so grateful for. As you can imagine being in the hospital for 3 weeks, in labor
  3. 3. basically the whole time, you start to develop relationships with the doctors and nurses. The doctor that was in charge of my care came to me one night when he was getting ready to go off duty at 1030pm and said that he had been thinking of me all day and the question that I had asked him earlier in the day when he had done rounds had been with him all day. I had asked him what would he do if I was his family member. He then told me that he recommended that I go out to Pittsburgh since there would be no doctors who had experience dealing with my condition over the weekend due to the Memorial day holiday. So the next morning I was flown by helicopter since they didn’t feel I was stable enough to go by ambulance. When I arrive at Magee they did their own round of examinations and ultrasounds. They were packed full so I stayed in triage for most of the day. Finally a room opened up. On the way to my room I commented to the nurse transporting me that I think I may have a urinary tract infection from the catheter because I was having a lot of discomfort could she possibly take the catheter out and put in a new one. She said she would as soon as she gave report to the nurse who was taking over. Well while she was giving report I very quickly realized that it wasn’t discomfort from a urinary tract infection I was feeling, I was in labor and my water broke. There was no stopping labor this time. Very soon after I was whisked off to the OR. Not the labor and delivery OR but the hospital OR because of the number of people that would be required for delivery wouldn’t fit into the labor and delivery OR. They would have OBGYNs, a NICU team, Anesthesia team, as well as gynecologic oncologists to deal with the placenta and the bleeding. You see because of the placenta previa and placenta accretia I was at very high risk of bleeding out during the surgery. Thankfully Steve who had been stuck in traffic for hours found me in the pre op room 15 minutes before the surgery and prayed with me. I must admit it was scary going into this surgery. As soon as I entered the OR they stripped me down and started prepping me for surgery even before they put up the nice blue divider that I had gotten during the previous c- sections. I was so scared that they were going to start before I was under. I started hemorrhaging as soon as they started prepping me for surgery. Later I found out that I lost 90- 100% of my blood, around 6 liters of blood during that surgery. Something that I really don’t think Johnstown could have handled. As good as they are there. I was placed in the ICU immediately after surgery. When I woke up I was still on the ventilator and they had my hands tied down so that I wouldn’t pull out the tube. I still remember my first thought in my head was how was Makayla. See she was born at 27 weeks so I knew that things could still be bleak for her. But I couldn’t find out anything cause I couldn’t communicate. Finally I got a pen and paper from my mom and wrote my question. Steve told me Makayla was fine and even as drugged up as I was I cried. It was the sense of relief that we both survived that brought the tears to my eyes. I know with out a shadow of a doubt that the prayers that were said while I
  4. 4. was in surgery was what pulled both of us through so well. I know many prayers were prayed by people in this group as well. When Makayla was born, since she was so premature she required life saving measures. What you see in this picture is them giving her oxygen and she is wrapped in a plastic bag to keep her warm. She was so little that she couldn’t maintain her own body temperature. She was placed on a ventilator initially but was able to be weaned to CPAP machine only 13 hours after birth, which is almost unheard of for a baby born at her gestational age. From here on out you will hear me refer to her gestational age and her actual age. Gestational age is the age she would have been if she had been born at full term. Actual age is the age is based on when she was actually born. Makayla was born at 27 weeks gestational age. Initially Makayla required IV’s in her belly button to give her caffeine, blood transfusions, medications, and IV fluids. The caffeine was to help her with apnea and brachycardia episodes. These were episodes when she would forget to breath, then when she forgets to breath her heart rate can drop dangerously low. Because she was so premature her body and brain weren’t completely developed yet. Consequently episodes were she would temporarily stop breathing, and need gently shaken to the point so she remembered to breath were very frequent. Sometimes as many as 15 or more times a day. If you have ever been in a hospital room when the alarms go off you know that sinking feeling you get in the pit of your stomach. Sometimes she would start breathing on her own. Sometimes someone would have to touch her. Other times she would have to get pinched and sometimes they would smack her bottom. All to kind of startle her and to remind her to start breathing again. Fortunately, most of the time she responded to that. If she didn’t respond they would up her oxygen and at most severe intubate her. At least two times it got so bad she needed a breathing tube put in her lungs so her little lungs could get a break. Fortunately it never got that bad very often. The blood transfusions were so that she would be able to maintain her blood levels. Her body wasn’t able to create blood on its own yet so every time that she had blood drawn her body wouldn’t replace the blood on its own and her numbers would drop. She was given medications to close her PDA (a small blood vessel that connects your aorta with your pulmonary artery, it normally closes when a baby takes there first breath). The IV fluids was her “food” for much of her NICU stay since they would not feed her while she was getting blood transfusions and they take a little while to start full breast milk to make sure her stomach and digestive system is ready for it.
  5. 5. 12 days after Makayla was born, I should have been 29 weeks pregnant at this point, Makayla developed NEC. Necrotizing Entrocolitis. It is a horrible, horrible disease. It is considered by many to be the cancer of the NICU. Doctors aren’t completely sure what causes NEC so there are many theories. One theory is that the bacteria in the intestines grows since the premature babies intestines don’t work as quickly as they should and therefore cause an infection in the intestines. And basically, the infection eats away at the intestines. In the worst cases the bacteria eats a hole all the way through the intestines and cause the contents to go through out the babies abdominal cavity and can ultimately cause death. Fortunately, this was not the case for Makayla. Makayla’s first symptom was a bloody diaper. The nurse immediately stopped her feedings (food feeds the bacteria that creates NEC) and they started doing x-rays and put her on medication. At the time, the NICU doctor told us that we wait for 48hours to see how bad it’s going to get. If after 48hours she is getting better then we can breathe easy. What we didn’t know was that we weren’t done dealing with the complications from her NEC for a long time. Makayla stayed in Magee’s NICU for 2 ½ months. We finally got to bring her home the beginning of August 2012. (2 weeks before her due date). She came home on oxygen and an A and B monitor to monitor her breathing and heart rate. We were so relieved and glad to be home and did everything we could think of to avoid Makayla going back to the hospital. We were ready to be home together as a family. When we got home I noticed that Makayla was having reflux and I was pretty sure that was what was causing her to stop breathing. There were times when the alarm would go off on her monitor and I would run to her bedroom as fast as I could and she would be lying in her crib, blue. It was so scary. So I mentioned this to my pediatrician so he put her on medications to help with the reflux and when that didn’t help he mentioned thickening her breast milk. We tried this and it seemed to help, for a while. Then she started vomiting up all of her feedings. She wasn’t keeping anything down. And during the night she vomited and she couldn’t clear it and was choking on it. My husband heard the alarms going off thankfully and cleared her mouth. That was the last straw in the morning I took into Altoona ER. She was very lethargic and dehydrated. They did some x-rays and discovered that she had a bowel stricture. The place in her intestines where she had the NEC had created like a scab that had caused a blockage. So they sent us by ambulance to children’s hospital. At Children’s they put us in the PICU before surgery because Makayla was still only suppose to be 1 week old if she was born on her due date and they were worried what would happen till they could have her in surgery. Finally, Monday morning they took her to surgery. After surgery they took her up to Children’s NICU for recovery. When she was there she had a really hard time breathing because she was in so
  6. 6. much pain. Eventually they had to reintubate her. Finally they were able to manage her pain enough that she was able to breath easier. 6 days after surgery they decided to try and feed her again. That morning I could tell something was wrong she keep grunting like she was trying to poop. So I asked one of the nurses if we could give her a suppository. They got one for her and asked me if I wanted to give her the first bottle since surgery. I said I did so they set me all up and told me to press the call bell if I needed anything. Makayla drank the first few swallows really well and then … she vomited. I knew instantly there was something wrong. I pressed the call bell and waited for the nurse to come in. As soon as she entered the room and saw my face she knew there was something wrong. I told her that Makayla had just vomited up everything I just fed her. She took Makayla from me and immediately started examining her. She then called the head nurse and that began the long line of doctors and nurses coming into my room and examining her. They ordered x-rays and said that the doctors would be around for rounds shortly and we will discuss what to do then. Probably no more than 5 min later the doctors came for rounds. They were talking about Makayla when one of the nurses stopped the doctor and told her to look at the x-ray that was just put into the computer. The doctor immediately then stopped rounds and told me that Makayla’s bowel/intestines had perforated. She then told the nurse a list of medications and things to get for Makayla and then walked into the room with me to examine her further. In the few short moments that we were out in the hall Makayla’s skin had turned a slight gray color. The rest flew by so quickly but there are certain moments that will always stick out in my mind. The moment they gave her a medication that made her not be able to move so that they could intubate her and the doctor stepped away and I could see her eyes looking at me, seeming to look at me with such confusion and desperation. The doctors and nurses all gathered around trying to intubate her. Standing in the hall waiting for the x-ray to show if the tubing for the ventilator was in the right spot. The surgeons coming in one right after another wanting to make sure I understood what was going on. Them telling me as soon as an OR room was open she would go into surgery. Those were some of the scariest moments of my life. But I knew people were praying. I knew that God was still there though I wasn’t really sure what he was doing. Makayla pulled through the surgery great. The surgeons were very through in cleaning her out and she did not develop an infection after. Because Makayla had so much trauma to her intestines in such as short amount of time they detached part of her intestines and brought it to the surface of her skin giving her a colostomy. She eventually was moved from the NICU and weaned off oxygen completely. And after a month in the hospital we went home again. Again we thought we were in the clear till her surgery to reattach her intestines in 6 weeks. And again we were wrong. About a week after we left Children’s I took Makayla to the Altoona ER because she was having difficulty breathing with a cold she had picked up. When we got there they did some x-rays,
  7. 7. diagnosed her with pneumonia and sent us home saying if she got worse to come back in. I was in shock. I didn’t understand why they would send home a baby that had such a hard time with her lungs anyways with pneumonia. Over night she did get worse so I took her back in again this time they gave her a shot of antibiotics and sent us home again saying to follow up with our pediatrician. So I immediately called my pediatrician and told him what the hospital had said. I was able to get in right away with him. He decided after looking at the x-ray that she didn’t have pneumonia but instead they were seeing the scarring on her lungs from the intubations. But he was nervous about how much difficulty she was having breathing and admitted her to Nason. We were admitted to Nason 1 or 2 more times over the next month with similar symptoms. The other thing that started to concern me was that Makayla was taking less and less of her bottle. And with her having difficulty with weight gain anyways this was a big deal. But I talked with another pediatrician in the practice about it and her comment was “baby’s don’t get admitted for malnutrion they get admitted for dehydration.” So I just did different songs and dances to get her to eat as much as I could. In the midst of this time my sister had a baby girl. So my family and I went down to Virginia to meet this new baby. While we were there Makayla started acting fussier. Then she started having stop breathing episodes. I panicked. We had oxygen and a monitor at home but we brought none of it with us. I called 9-1-1 and they sent an ambulance which took us to the closest hospital. The closest hospital really didn’t have much experience with kids like Makayla so they sent us by ambulance to Inova Fairfax Children’s Hospital. Once we got there they began thinking that she had meningitis. They did spinal taps, x-rays, and so many tests. After about 24 hours they had pretty much ruled out everything but she still would not eat. The doctors placed a feeding tube from her nose into her stomach. And during that time, as long as the rate was slow enough she was comfortable. So the Pulmonologist that was seeing her suggested that perhaps it was reflux that was causing her to have the stop breathing episodes again and that she may be having fluid going into her lungs when she eats which is why she is refusing the bottle. But he didn’t feel comfortable developing a whole plan of attack when we would be following up in Pittsburgh. So they transferred Makayla by ambulance to Children’s of Pittsburgh. Once there, we had to convince doctors again that there was something wrong. To make a long story short after all other tests were done and they found nothing they decided to do the swallow study as a last resort and guess what. That was the problem she was the problem. But it took another 2 months and 3 more hospitalizations for us to walk away with what Makayla needed all along a GJ (all her food bypassed her stomach and went straight to her intestines) tube and Nissan Fundiplication (a surgery in which they wrap her stomach around her esophagus to make it harder for her to reflux.)
  8. 8. At this point it was Christmas time. As you can imagine with all the running back and forth to the hospital alone let alone meals and parking the expenses were adding up. We didn’t know what we were going to do for Christmas. But God amazed us once again people gave us gas cards, presents, checks, and so much more. We could hardly believe it. Once again we thought we were done we had everything under control. But two weeks later she started vomiting. Some days it was once, some days it was several times. And since there was nothing going into her stomach she shouldn’t be vomiting. Also, she was having pain of unexplainable pain. Through much insistence we were finally able to be seen in Children’s Hospital of Philadelphia. There we discovered that she has delayed gastric emptying. Which meant that her stomach doesn’t empty the way it should. This is more than likely a result of one of the surgeries that she had on her intestines. But the delayed gastric emptying wasn’t to the degree that she should be vomiting as much as she was. The doctor referred us to numerous other specialties with still no answers and she started us on one more new medication. There was MRI, CT scans, and numerous other tests to see if her brain or kidneys could be the problem. But nothing showed up. Then in August things started to get better for some unknown reason. The vomiting stopped. The pain episodes stopped. We really still have no reason why they were there in the first place but they are gone now. She has amazed her GI doctor with how quickly she has progressed. We have begun to feed to her stomach and she has started eating by mouth. We still aren’t sure if she is safe to drink so we are sticking with solids for the time being. While everything was going on with Makayla medically she was behind developmentally. She didn’t say her first word till she was 16 months old. She didn’t walk till she was 18 months old. She didn’t crawl till she was a year old. But now you watch her and she is like any other almost 2 year old. She is putting words together and her language is becoming clearer. She loves running after her brother and sister. And she has an option and she will let you know what it is. She still has her feeding tube but she is getting fed at a faster rate so she only needs her backpack 18 hours a day instead of the 24 hours a day she was at. She has sleep apnea which we are still in the process of trying to figure out but we are getting there. I had a plural effusion (excess fluid around my lung) after the surgery and went through a period of a month or so just getting my body to recoup after the surgery but since I have been fine.
  9. 9. God has done an amazing work in our lives. And I know no small part to the prayers and support of many of the women in this room and those who have been a part of this group in the past. Thank you, each of you for your prayers and your support. Your cards, your gifts, your prayers have showed us that we were not alone. I just want to read a scripture that describes all that you have done for us. (NKJV) Matthew 25:32-40 32 "All the nations will be gathered before Him, and He will separate them one from another, as a shepherd divides his sheep from the goats. 33 "And He will set the sheep on His right hand, but the goats on the left. 34 "Then the King will say to those on His right hand, 'Come, you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world: 35 'for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took Me in; 36 'I was naked and you clothed Me; I was sick and you visited Me; I was in prison and you came to Me.' 37 "Then the righteous will answer Him, saying, 'Lord, when did we see You hungry and feed You, or thirsty and give You drink? 38 'When did we see You a stranger and take You in, or naked and clothe You? 39 'Or when did we see You sick, or in prison, and come to You?' 40 "And the King will answer and say to them, 'Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me.'
  10. 10. God has done an amazing work in our lives. And I know no small part to the prayers and support of many of the women in this room and those who have been a part of this group in the past. Thank you, each of you for your prayers and your support. Your cards, your gifts, your prayers have showed us that we were not alone. I just want to read a scripture that describes all that you have done for us. (NKJV) Matthew 25:32-40 32 "All the nations will be gathered before Him, and He will separate them one from another, as a shepherd divides his sheep from the goats. 33 "And He will set the sheep on His right hand, but the goats on the left. 34 "Then the King will say to those on His right hand, 'Come, you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world: 35 'for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took Me in; 36 'I was naked and you clothed Me; I was sick and you visited Me; I was in prison and you came to Me.' 37 "Then the righteous will answer Him, saying, 'Lord, when did we see You hungry and feed You, or thirsty and give You drink? 38 'When did we see You a stranger and take You in, or naked and clothe You? 39 'Or when did we see You sick, or in prison, and come to You?' 40 "And the King will answer and say to them, 'Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me.'