Still at the hospital

So we are still here at the hospital. They still haven't done the ultrasound or the circumcision. The nurse has cleared us on the gavage tube. But now we still have to wait for them to do the rest. It looks like I am being discharged, so we were trying to see if Nathan was going to be discharged with me too. But it looks like that is not happening. Another heart break, having to leave the hospital without my baby. Its Halloween, I would love to take Briana and Nathan trick or treating, but that is not going to happen. Well I probably wouldn't take Nathan out, but still. They are going to keep him over night again just to make sure he is keeping his food down and doesn't have any reactions to the circumcision. We are headed home, we talked about me spending the night at the hospital with him, but we decided that Briana needed me too. So I am headed home to spend the night with my little girl. Couldn't stop the tears as I left the hospital, I feel like a bad mother. What kind of a mother leaves her baby behind. I know that its not true, but that is how I feel. When feelings like this take control of my mind it reminds me of the C. S. Lewis' Screwtape Letters. I know that these feelings and thoughts aren't from God, only the Devil could make me feel bad like that. I am thankful that I have my strong husband to support me and give me strength.

Our pregnancy

It all started February of 2010. We were a family of three Jonathan, Briana and me, Mommy. I was about 7 weeks pregnant when we found out that our little gift from God was cooking in the oven. That same week I also found out that I had a thyroid problem. I started taking Synthroid, and the next day all of my glands became swollen. It was crazy and I had no idea what was going on. But within a week it all went away and I carried on with my pregnancy, perfectly. It was great, no morning sickness. When we were 18 weeks it was finally time for our first ultrasound, and boy were we excited. We agreed to find out the sex of our baby this time, since for Briana we kept it a surprise. We walked in to the Hospital on a Wednesday afternoon and little baby was very active, moving all over the place. So the ultrasound tech started the ultrasound and she was having a hard time getting good pictures because the little man would not sit still. She took all the measurements she could and pictures that she could and asked if we could return the following week. We did get some good pictures of baby's hand, foot and with his legs wide open we found out that our baby was a BOY!! So exciting. We left the hospital not even thinking twice about anything and scheduled an appointment for the following week. Second ultrasound came along and I went with my mother so she could watch Briana, because Jon had to work. Another ultrasound tech greeted me and explained that she was training a new hire. No big deal I never mind extra bodies in the room. She went about with the measuring and picture taking but something didn't feel right. I didn't know if it was because the new hire was doing things wrong or if there was something not right. Well the end of that appointment came and I carried on home not giving it much thought. Once we got home, the hospital called asking me to come back in, once again, and this time we were to meet with the Neo-natal doctor. Red flags start flying and I get a little scared. I called Jon, trying to remain calm and tell him all that happened, half way through I can't hold it in anymore and I start bawling. I started crying and I couldn't stop. So not like me, I try to stay calm always, but it must have been hormones. My wonderful husband, gets into action right away, he calls the hospital and digs until he gets some kind of answers. We schedule to come back in the next day so they can explain what they saw in the ultrasound. The next day came and we headed to the hospital, once again. Once we got there we went into the ultrasound room, again, and had another ultrasound. After the ultrasound we were directed into this little room with a small table where we met with the Neo-natal doctor. So here we where, sitting across from him trying to figure out what in the world was going on. This was the most nerve wrecking moment of my life. I could feel my heart beating faster, my hands getting sweaty all of it. He went on to tell us that in the ultrasound they could see a cleft on our baby's face. He also told us that our baby had a two vessel cord, which to him both of these factors together could mean more things. My heart sank, my mind started spinning and I started crying. It was like a truck hit me with emotions. It was so much to take in. He went on asking us if either of us had a history of Cleft in our families, which we don't. He then explained that he would like to have an amniocentesis done, just to rule out other "anomalies" (I hate that word). We decided that we would go ahead and do the amniocentesis, so we headed back to the ultrasound room and with a needle the size of Jon's foot and the with of a spaghetti noodle (not sure if that is its actual dimension, but that is what it looked like to me), he poked my belly and extracted some of the fluid. With that fluid he could test for down syndrome and other chromosomal disorders. After all that, we left the hospital, broken hearted, confused and with no idea where or who to turn to. We had so many questions, yeah we knew, kind of, what a cleft was, we had seen kids with down syndrome before. But what could we do? How did this happen? Why did this happen? It was so hard to understand and accept. How do you accept that your unborn child is going to be different? We headed to my parents house to pick up our daughter Briana and told my mother what the doctor had told us. She also started crying, but I assured her that we still had more to learn and that it would all be fine. See this is the me, most people know. The other me, only my husband knows, poor man. We left my parents and headed to the fireworks at Red Run with Jon's parents and siblings. Jon told his parents, and his mom, bless her heart, said: "okay, well we will still love him no matter what". I love the sincerity in her, she doesn't know it, but that was pretty special. Our OB told us several times during our follow ups with him, that there were other options. Options of abortion that is, that he wouldn't do it, but that if it was something that we wanted that he could send us to someone. You see people think that because we wanted to know what the amniocentesis was, that depending on the result we would make a choice. But that is not why we choose to know what else could be going on with our baby. We chose to find out, so that we could inform and prepare ourselves for whatever our little man would need from us. We already loved him so much, how could we do anything to hurt him. The results were finally in and there were no other chromosomal disorders, so far from what they could tell he had the cleft and the two vessel cord. They wanted to do a echo while he was still in utero to make sure his heart was okay. After that we had an ultrasound every week. And with one of the other ultrasounds one of the doctors thought that maybe they also saw Pierre Robin Sequence. Which means that our baby's chin would be recessed causing his tongue to close his airway, meaning that he wouldn't be able to breath when he was born. Since the hospital we were at didn't have a good high risk NIC Unit, we decided to go to another one that we knew had one of the best NIC unit around. Our doctor there was wonderful. My wonderful husband, the man that God put in my life, only for me, began his research. The day we found out about our little man, the same night, he went through website after website, search engine after search engine finding answers to our questions. Trying to understand what was going on. We are a Christian family we both know and believe in Christ. Prayers where sent everyday, many times in one day, asking for answers, for healing. I couldn't understand what I had done wrong. If I am the one cooking up a baby, whatever happens to that baby, must be my fault. I must have done something wrong. There must be something wrong with me. I blamed myself. I couldn't help but to ask why and for God to please fix whatever I did wrong. But then one day I stopped asking God why. It didn't matter why anymore. I stopped asking God to fix things. I stopped blaming myself. Instead of asking God for specific things that I thought where the best things, I decided to ask God to have his way. I asked God to give me understanding for whatever his will was. I realized I had no control and that it was okay. How you ask, I can't explain it, I just knew that it was okay. My wonderful husband had a lot to do with it. He has always had a way of making me feel better, a way of making me feel like it was okay. I felt peace, peace that could only have come from God. And Jon was just next to me to help me feel it. My pregnancy was pretty easy, other than all the things going on with baby. We had ultrasounds every week, and non stress tests twice a week for the last four weeks of our pregnancy. We did have extra fluid half way through our pregnancy and that was found to have been probably due to the Pierre Robin, they assumed that maybe he just couldn't drink enough fluid to keep the balance even. Well we were 36 weeks when we scheduled our induced labor. We agreed to induce because this way we would have the birth in a controlled environment with all the doctors needed and nothing rushed. This is just the beginning ......

New Surgeon

My parents brought Briana to come meet Nathan today. She was a little confused and I think over whelmed seeing me in the hospital. She was able to go into the NICU to see Nathan with Jon. My parents got to see him too, but the girls couldn't go in, they were not siblings and kids are not allowed in. It was so good to see my baby girl, I really missed her. Can't wait to go home to be with her and Nathan. Today we also got to meet with a new surgeon, Dr. Mark. Three words . . . . I Love Him! Really, he just gave me such peace. When we went to UofM we only got to speak and meet the nurse practitioner, but this surgeon took the time off of his weekend to come see Nathan on a Saturday, pretty special. He is so calm and peaceful too. He explained to us how he does surgeries, its a little different than from UofM. He also talked a little about a device called Latham, he used it instead of tapping. Its a lot to process, we are meeting with him here in the next few weeks, to get more information and get our questions answered. Still waiting on a few tests to be done on Nathan. He is due for his kidney ultrasound today and he is also getting circumcised before we take him home. We are also learning how to put the gavage tube in, how to measure it, how to tape and how to feed him with it. There are a lot of steps and placing the tube in his stomach is a little scary, because if you put it down the wrong tube it can go in his lungs and that can be a whole nightmare. So we have to be careful. We are doing our best to learn it so they nurses feel comfortable with us doing it so we can take Nathan home. Can't wait to get out of here!

Getting used to things

This is really sad. I know I shouldn't compare, but how can I not. When we had Briana she was in the room was us the entire time we were at the hospital. I never took her to the nursery. But now with Nathan he has to stay in the NICU. They are monitoring him, he also has a gavage tube in. They are giving him a bottle but apparently he isn't drinking all of what he is supposed to. That's another thing, Briana was breast fed so really we had no idea how much she was eating, as long as she was happy everything was fine. But for him, he needs to eat a certain amount of milk and if he doesn't then the remainder has to be gavage fed to him. He is due for a kidney ultrasound. He won't need the eco on his heart because we had it done during our pregnancy. The nurses keep putting the bottle on left side of his cleft, because they say it helps him. But I feel like its pushing his pre maxila over to the right side. I don't like it and even though I know it doesn't hurt him, it looks like it does. I am trying to go down to the NICU for all of his feedings I don't want the nurses to feed him I want to do it myself. This is very annoying. I just want him with me. He eats every 3 hours, but he wakes up every 2 1/2 hours. So I have try to get some pumping in before I head downstairs to feed him, so that I can take some fresh breast him for his feeding. That takes about 30 minutes, then I am with him for about 1 hour. Between feeding, changing, burping and getting him back in bed. The doctor said he needs to eat within 30 minutes if it takes him longer than that to eat, he ends up burning more calories eating than actually taking in. I am getting a hang of the haberman bottle, and so is Nathan. There is a surgeon coming to see Nathan tomorrow. So we are excited for that, he can give us a little better idea on what our next step is. I can't wait to get him out of this NICU so he can stay close to me! I also wish I could breastfeed him, man that would make things so much easier, this pumping thing is a pain. Not that its painful but it just takes too much time.

He is here

My little man is here. 6lbs 8oz 19 1/2 inches. Little boy was born right at Noon. Our doctor almost didn't make it to the room. He was a lot easier than Briana. As soon as he popped out we heard a nice loud cry, such peace, he can breathe just fine, praise God. They had the whole team in the room, so I got to hold him for a little, but they took him out to the NICU to check him out. It looks like he has a complete bilateral cleft lip and palate. This is so different than when I had Briana, I just had him and he is gone. I am going to take a shower and try and head down to the NICU to see him.

Here he comes

On the night of October 28 2010, we headed to the hospital, since I had, as the doctor called it "a super cervix" he had to do some extra steps before giving me the Pitocin to induce labor. After a night at the hospital, horrible, so uncomfortable - the next morning came and the doctor was not so sure that I would be delivering anytime soon. But we knew better, Pitocin works wonders for me. AT 11:58 on October 29th 2010, the loudest little scream was heard. You have no idea how much that scream made all of us happy. Big scream meant no Pierre Robin! Then they handed me my little man, Nathan. There he was with his beautiful eyes. He was born with a complete bilateral cleft lip and complete palate. They let me hold him for a little bit, his cleft was very noticeable and yes I did stare at it for a little. But then as a mother your heart just melts. This tiny little baby was just inside my belly for nine months and now here he is. With his tiny little hands and feet, in my arms. It is amazing. They took him away into the NI-CU, and I got in the shower, bumped some milk and headed out to the NI-CU to see him again. They put a gavage feeding tube in so that he would eat without a problem. I held him and had a chance to feed him. I hated letting the nurses feed him so I would wake up every 2:30 hours so that I could pump and head down to the NI-CU to feed him. He was doing good, he would drink some of his milk form a bottle (haberman) then we would finish the remainder on the gavage. They wouldn't let us leave the hospital without knowing how to place the gavage tube back in the right way. So we learned to measure and to place it in correctly, it took us both about two tries at the hospital for them to give us the thumbs up. I was released from the hospital, but unfortunately they kept Nathan in the NI-CU. The worst day, and feeling I have ever had was leaving him behind. I felt like I was abandoning him. Man it was so tough to leave that hospital without him. That day I went home and spent the night with my little ladybug Briana. It was Halloween night and I spent the whole night holding my little girl with my heart and mind on my little man. We headed to the hospital with Briana to bring Nathan home the next morning. We ended up spending the whole morning at the hospital. But we finally got to take him home. Once we were at home we had to keep putting the gavage tube in, man was it horrible, it was just so nerve wrecking. I was always worried that it might be in the wrong tube (in his lungs instead of his stomach). I remember one time I put the syringe on the end of the gavage tube but I had forgotten to take the middle part out, so not thinking right I just pulled it and there was a yellow liquid that came up, my poor baby I pulled the liquid from his stomach. That scared the lights out of me, but he was okay. He only had the tube in for two days at home. He kept pulling it out and since I hated it, I just force fed him every time with the bottle. He took it well and drank all of it. The Haberman is our life saver!

Nathan's journey through my eyes!

These are my journal entries, thoughts, feelings, questions, answers etc.. I entered all my journal entries in the Blog, by date written. And all of the other pages I just wrote to help people understand what happened at each "big" event. Nathan's journey is our journey too and this is my side of his story. Someday, if he wants to, he can write his side of the story. My name is Bianca Turner, I am now 28 years old and I am the proud mother of the two most adorable kids in the world! I am married to an amazing man, who really does "complete me" .... I know I know - so cheesy! But it really is true. We might not be the perfect family but we love each other so much Both quotes below are very close to my heart. They are just a few that I love but I thought that they were perfect for this. For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. (Palms 139: 13-16) As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. (John 9: 1-3) People ask all the questions that these verses answer. Nathan is our little gift from God, he was wrapped in God's love and handed to us. We are so grateful and thankful for being the parents of such a strong and amazing little man. Bianca Turner

St. John Providence

We dropped Briana off at my parents and here we are at the hospital. This is so surreal. I'm so excited and so nervous. I have looked at pictures of babies born with a cleft, but not many of them look exactly the same. I stopped looking at pictures because I know that the chance of Nathan looking like one of the pictures is not really a sure thing. I am praying that I will hear a nice loud cry as soon as he pops out. I know that God is in control, and I know that I can trust him. I know that God will never give me more than I can bare. And I also know that whatever comes my way God will be there with me every step of the way. Jon is sitting on a very uncomfortable chair very excited too. I am so blessed to have him here with me. I already miss Briana, this will be her first sleep over. First night I sleep away from my baby girl. Can't contain the tears, I love her so much. Well I should rest now and wait until morning so that we can welcome our little gift from God.

Anxiously waiting

This is the week. This week we get to meet our little man. Since there are so many variables with this pregnancy. Since their is so much we don't know for sure, there are things the doctors want to be ready for. So instead of waiting for Nathan to decide when to come home, we have decided to have an induced labor. They will have a whole team in the room ready to help our little man in whatever he needs. This is going to be so different from Briana's birth. We are headed to the hospital on Thursday night. I'm getting induced on Friday morning. So exciting can't wait to see little Nathan.

UofM

So we went to meet with the UofM team. We met with their nurse practitioner, it was really nice. She answered a lot of questions that we had and she also gave us some good advice. She also put our minds at ease on a lot of different things. She also made it clear to us that there are many extremes, and that those extremes are usually rare. You see all of the doctors we had been talking to so far, knew the very basic on Clefts and Pierre Robin. We actually had to explain to some of them what Pierre Robin is. So all of the information we have acquired from doctors around us weren't always very accurate. Jon knows a lot more about things than I do, so he had all the right questions for the Nurse. She was actually impressed at how much he knows, she thought he worked in the medical field. So proud of my Hubby!

New Doctor

Jon has been researching on both the Pierre Robin and the Cleft. There are certain steps that we might have to take when baby is born. We are going to head out to UofM Mott's to meet with their Physicians Assistant. She will be able to answer some of the questions we have. We have a new doctor referred to us by Joanna. He is awesome. I already love him. Jon is doing an awesome job in studying, researching and getting prepared for all that we will need to do when baby gets here. Its a lot to process. I am so thankful I have him in my life. I could not be going through any of this without him. It gives me peace knowing he know so much about what we are going to face here very soon. I can't put myself to actually do all the research he has. Its just too much for me, one more reason why I am so thankful to have him in my life.