Wednesday, May 12, 2010

A little Medical background

Well when we went to the hospital to bring Izzy home we go into then nursery and see this small beautiful bundle of joy. I have never seen a more beautiful baby and just knowing she was going home with us made it that much sweeter. The nurse starts giving me some background and then the baby needed to eat so she gave me a bottle to feed her and I did then I burped her and put her back in the bed and all of a sudden there if formula coming out of her nose. The nurse tells us it has been happening and that is why they kept her an extra night and she didn't know why it was happening but it did happen to some babies. My husband and I didn't question her because we didn't know and we figured if it was something they would know and tell us.
We took her home and over the next couple of weeks it continued to come out of her nose and it became normal for us. Well she seemed to keep getting congested every time she ate so we thought she was allergic to her formula so we had it switched to a soy formula. Well we soon realized she was getting congested with that as well so we had that switched to. During this time she was starting to have difficulty each time she was spitting up and it was coming out of her nose which was making her choke. But she was still able to clear it herself. In the meantime we had to have her switched to yet another formula and this one was Milk and Soy free.
Well next all of a sudden her breathing was getting really wheezy and strange sounding and it was all the time. It literally sounded like she was having an asthma attack but without the distress. So now our little girl was sounding like she was drowning every time she eats then when she does eat it comes out of her nose and is choking on it more and more and her breathing is so loud that wherever we went people look at us with a questioning look on their face like they are looking to see if she is OK
By this time we have been to her Dr.s numerous times and she was working with us any way we wanted to try to get all of this figured out. It was so nice to have a Dr. that listened every time you had a concern and took you completely serious. She knew there was something going on and we were doing all we could to get it figured out. She had an upper GI and that looked normal. Next we went to a speech Pathologist and he was concerned but didn't know what it was either. Oh I forgot to mention that around 2 weeks old she started to put her tongue to the roof of her mouth. One night I went to feed her and it was really late at night so it was dark. So I tried to feed her and she was doing something really weird. It was like she was sucking in and spitting out at the same time. So I took her downstairs thinking maybe she just wasn't awake enough and that was the problem. So I took her down and tried again and she still did it so I looked in her mouth to see what the problem was and she had her tongue pressed to the roof of her mouth so the nipple was actually going under her tongue when I was putting the bottle in her mouth. So I had to press on her little chin to get her to put her tongue down then she would feed fine. But after that day every time you put the bottle in her mouth you had to press her chin to get her to put her tongue down. So because of this we thought maybe there was something neurological going on. So back to her Dr. we went and she made an appt. for her with the neurologist in Rochester at Strong Memorial Hospital which was the first of many.
So we went to the neurologist and they were not sure why she did that but they were not too concerned as to where they wanted to look further into it because that would have meant an MRI which she would have had to be put under for that and it didn't seem that concerning. They did listen to her breathing and thought she had Tracheomalacia and referred us to the Ear, Nose, and throat specialist. When we went to see them they put a scope down her throat and determined she had Laryngomalacia and was also concerned that she had reflux when I explained about all the spitting up and I told them it smelled burnt and about it coming out of her nose. So they referred her to the GI Specialist.
While we were waiting for the appt. with the GI specialist I noticed her thumb was getting stuck and then popping when it became unstuck. So at her next Dr. appt. I asked the Dr. about that and we then found out that she has a trigger thumb. So we had to set up an appt. with an orthopedic specialist. So at this point we are waiting to see the GI specialist and the Orthopedic specialist as well and she is still spitting up out of her nose and the choking is getting worse and worse and she is still sounding like she is drowning every time after she eats and I am starting to feel a little crazy because I KNOW something is wrong with our baby and we are not getting any answers or solutions.
So We had a follow up appt. with the Ear, Nose and Throat Dr. and while we were there I told him that I am really concerned because she is REALLY starting to choke alot to where I can not let her out of my sight and she has to sleep in her bassinet right next to my bed so I can have my hand on her while I sleep because when she spits up it is really quiet and then she starts choking and if you don't see her then you might not even know she is choking. Also she used to be able to clear it when she was choking but lately she was unable to and i was having to sit her up or put her over my hand with her belly down and help her to clear it and the night before it was so bad I almost called 911. So the Dr. looked in her throat and was really concerned because it was extremely red. So he told us he was calling over the the GI specialist and see if they could see us right away. OK a little nervous now. So we waited for the Dr. to come back in to tell us what the next step was. He finally came in and told us that they are usually closed right now but they were waiting for us to get over there and they were going to see her and more than likely they were going to admit her. So Brenda (My wonderful and faithful sidekick) went over to the hospital after a pitstop at the store because we were starving and was not prepared for this day because we thought this was just a normal follow up appt. Once we arrived at the Dr.'s office they got us right in and they looked her over and they decided to admit her to observe her. So here I am with my friend that gave me a ride and all I brought with me was a diaper bag packed for a day trip. SO we wait for them to get her a room and they do and then Brenda had to go home so now I have no car, no clothes, nothing but a diaper bag for the baby and what I carry in my purse. So needless to say I was a little stressed. Well to make a long story short they ran a bunch of tests and found out she had a bad case of Gerd but there just still seemed to be something that wasn't right. They decided to put her on and NG-tube and they were going to do this for 12 hours a day. That was until we had the swallow study done that she was scheduled for in a couple days but I begged them to do it while she was admitted so we didn't have to come back up there in couple days right after she was discharged. So they did the swallow study and it was amazing because it was a live feed of her eating and it was obvious as soon as the study started there was something wrong and this was our answer. As soon as she swallowed it looked like fireworks, there was fluid going down her throat, in her lungs and up her nose. So all this time we thought she was allergic to these formulas she was actually aspirating her food. You wouldn't believe how much of a relief it was to finally have an answer. So because of these new findings instead of being on the feeding tube 12 hours a day she now had to be on it 24hours a day. The next step was for them to teach me how to put the feeding tube in and check the placement. If someone would have told me I was going to have to learn how to basically shove a tube up my babys nose and down her throat all the way to her belly to basically keep her alive I would have never believed that. So now we have all this new stuff to learn but we are willing to do whatever it takes for our baby. We go home and this definitely took care of the congestion that she was having. So for the next 3 months she had the NG-tube and we had our mishaps with her pulling it out now and then but for the most part it was fine. But she eventually was getting to where she was just pulling it out to much. Now onto the next step.
Our next specialist appt. was with the Orthopedic Dr. to see about her trigger thumb. He did confirm that it was a trigger thumb and seeings how she was so young and it was already giving her so much trouble then it was very unlikely that it was going to fix itself which some trigger thumbs did I guess. Hers was not going to be one of them. They scheduled her for surgery but she had other plans. We had to go back to the GI Dr.s because she kept pulling her NG-tube out and we needed to have the G-tube placed. So in Oct at 5 months old she had to have surgery for the G-tube placement. Here was my little girl who has NEVER been out of my sight getting ready to go have surgery and she was going to be in there for like anywheres from 1 to 3 hours. So we went up to Rochester the night before and we stayed in the Ronald McDonald House because we had to be there so early the morning of the surgery. I can't say enough about the Ronald McDonald House they are absolutely awesome. They not only house and feed you but they make you feel like you are going to a family members house anytime you need and they help you with anything you need. It really does help not add any unneeded stress. So anyways we tried to enjoy our day and just love on our babygirl as much as possible. Then that night came and it was just about impossible to sleep. Not only did we have to be there at 6am but I had to get up at 2 and turn off her machine because of course she had to fast. So we got up that morning and went to the hospital. My heart was pumping so fast and it was really hard to know what she was about to go through but I knew that she was in the Lords hands and that was a comfort to us but it still didn't take away all the worry. So we take the walk down to the waiting area and then they called us back and when we got back there I just wanted to hold onto her so tight. After everyone that needed to talk to us came in and it was time I asked if I could please go in with her till she fell asleep and they asked me if I was sure and I said "Of course I am sure" :0) so they said yes but they had to tell me that when she starts to go under she might do some strange things but she is OK and I said that is fine but I want her to know I am there and I want to be there when she wakes up as well that way she knows her mommy is here. So we went into the surgery room and it was so fast I loved on her they layed her down she went under with no weird side effects and they rushed me out. Oh my! I went back out with my husband and we went out to the waiting room and I had to go into the bathroom and cry and pray. After what seemed like FOREVER they called our names and of course we rushed right in there. She was so sleepy but they said everything went good and they were getting us a room. We got our room and we were actually in the same room we were in the first time just the other bed. So we got to have the same great nurses that we had before. Everything seemed to be going good. But over the next couple of days I kept telling the Dr.s that she just didn't seem to be acting right. It wasn't anything big just one of those mommy moments when you know something isn't right. So to appease me the Dr. ordered an xray of her belly the evening before the day we were supposed to go home. They told us they didn't think anything was going to come of it but just to be safe they wanted to do it. So we go down have the xray and we were back in our room 1/2 hr later and we weren't in our room 5 minutes before all of a sudden a bunch of Dr.s come rushing in her room. It was the scariest thing ever. They said she had free air in her belly and they needed to do emergency surgery NOW. Well at the time she was still our foster daughter and we legally couldn't sign for the surgery so we tried to get something from the dept. but it was too late in the day I was a little panicky and I looked at the Dr. and said we can't get ahold of them and he said it's OK I am making the call and we are doing the surgery now. He explained to us that free air in the belly is extremely dangerous and if we would have left without knowing it was in there she could have looked perfectly fine and all of a sudden make a turn for the worse and we could have lost her before we could have gotten back to the hospital. Talk about scary. So they take her down right in her bed and as I am walking out our favorite nurse Kiki gave me a hug and cried with me. That touched me so much. So back down to surgery we go and again I just cried and prayed. I knew God was in control and I trusted her with Him but I just didn't know what He had for us and I was scared to death. The Dr. came out to talk to us and said she was fine. He was not sure where the free air came from but it does happen sometimes with the placement of the g-tube so they replaced the g-tube did exploratory surgery and took her appendix out. My poor baby girl. So instead of a 4 to 5 day stay we were there for 11 days. We made it through that hospital stay and started this new adventure of the constant worry of her pulling out her g-tube. I forgot to mention when we were actually waiting for her to get out of surgery the Orthopedic Spec. calls and she was supposed to have surgery on her thumb that day. So I told them what was going on and I was sorry it slipped my mind we would get back to them. Well i am going to end this here and I will do a part 2 of this so you can read this while I am writing the rest.

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