So for starters I thought we better back track to the day Mr. Finnemore Riley Jones was born!!! It was a dreary cold Thursday morning and I went in for my 39 week check up thinking surely this baby was near but I had noticed in the night about a week before that he had moved. I mean he was a big ole baby and you notice something like that flipping around. He had been head down and ready for the longest, and at 38 weeks they mentioned they didn't think he was head down anymore(I knew it b/c I felt it the night b/f) but that's not uncommon I guess so being I still had 2 weeks til he was due, out the door I went. We had Christmas the next several days and everything was still great. I was just huge! So then finally Thur rolled around again and this time I just knew they would tell me he was ready! Well, they decided he was still not in the right position and there were still no signs he was ready so they decided to do an Ultrasound and that's when the roller coaster started rolling!!!!
The Dr just kept looking and looking and then a nurse came and said he had a call, well he took it but he said I am not done just hold on. So then I got nervous and asked the nurse why does his head fill up the screen and she said well that happens at this point cause he is full grown(don't know if that's the truth or if she was just telling me that til the Dr came back) so I said ok and then the Dr came back in and it came up again and he said well that's what I am looking at. My heart was beating for sure so I said sooo what does this mean and he said well your going to have this baby today! GOOD is what I initially thought. He said I would need a c-section. Still fine with me I had prepared all along for that possibility b/c hey they do them all the time and I am no exception. I could deliver that way as easy as anyone else does and thinking we were about to head over to ARH. Then he began to explain more and said he thought that the baby had something called Hydracephalus and then my Heart Totally stopped and he said you need to call Christopher and that he was going to call Mobile and Birmingham and see which we could get in. MOBILE OR BIRMINGHAM what is happening! I asked what all this meant and would the baby live and he said he just didn't know, he had not seen but a couple cases of it ever. I felt like at that very moment everything spun right out of my control. I managed to call Christopher and he said he would be right there but he hung up for whatever crazy reason and I was just sitting there and so I called my Mom and Caroline answered and I managed to say the baby's head is too big and I am having to have a C-Section so Mom told me to calm down(thinking I was just upset about having a csection) and asked if I needed her to come and so within seconds she and Caroline were there. While I waited for them to get there a sweet nurse came in and prayed for a miracle for our baby.
They got there and were briefed on what was happening, and they sent us home to pack, so we called Nancy on the way and she met us at the house. Dr called it was my choice we could go to either hospital, well I had never heard of anyone that went to UAB that they didn't have something they needed and were transfered so I chose UAB. GREAT choice!!!!! Some how we all got on the road. Whitney took little Lady Jane to stay at Donna's, Christopher and Me in the back of the Tahoe with my sweet sister driving that huge machine in the Rain and Mom Co-Piloting. and Ricky and Nancy leading the way in their car.
We had all just gotten I-phones and the whole way there searched and searched what Hydrocephalus was and what we could be expecting. Called my Dad and brothers who were hunting in Prattville they waited at the interstate and jumped on the interstate as we approached and we officially had a train flying up 65. Oh and in Montgomery in the pouring rain with our flashers on a State Trooper tries to pull us over. HA yea right just follow us if you want dude!!! Caroline tried signing that I was in labor and Christopher even rolled down the window like he was going to shout it to him!!! That gave us all a small laugh! But Ricky actually pulled over and the man said he just wanted to make sure we didn't have an emergency. Well DUH we are speeding and have our flashers going! It only took 2 seconds though he was nice and Ricky flew past us again to keep leading the way.
We got to UAB they knew exactly who I was and were ready. We saw several Dr.s and they confirmed Yes he had Hydracephalus but they wouldn't know why until he was born. Well we just felt sure it was a birth defect, he would need a shunt and we could start recovering. (Wrong but I will tell that later!) they were ready to do the section BUT asked when I ate last well being the honest person I am I said I had a BITE of a RICE CAKE when we got in the car. STUPID ME! Instantly our emergency c-section was put on hold for 7 Looooooooong Hours. But they said the injury was already there and not getting worse so we would have to wait. FINE!!! So we waited and waited. My sweet Uncle Vernon popped his head for a visit which just really brightened my day!(he drove up from Prattville just to check on us :)) Blakely and RHT ran to Newk's and got everyone food b/c at this point it was supper time and no one had eaten a bite since we left that morning. And YES CAJ ate the finest looking sandwich I had ever seen right in front of me!
Finally it was time a little b/f 9 pm they came to get me. Then I got nervous! Plus CAJ had to wait outside while they prepped me. And anyone that's had one knows once your numb you are Numb! and then I began to cry b/c I realized since I was now numb I wouldn't feel the little fella wiggle ever again in my tumtum and about that time he did a big ole wiggle and then I was all smiles and ready to proceed, CAJ came in about then also.
and just my luck they had about 5 students they were teaching and it was the longest section in history.(almost 2 hrs) They told me they had started and so I looked at CAJ and asked ok what's his name??? He can't be Baby forever! It was between Elijah Thomas and Finnemore Riley and he took 1 split second and said Finnemore Riley and then... Finally I hear LOOK AT THOSE BIG OLE FEET! and then it's 10:39pm!!! and then I heard him crying and off he went behind me out the door to the Neo team that was waiting in this back hall for him. and then as they promised, if he was breathing ok, they ran him back in for a split second so I could see him!
Then off to recovery where they told me I was about to have feeling again and they were going to start a Moriphine drip and I strongly said OH NO I don't want any narcotics just some Ibprofin I want to stay alert b/c Finn is sick. HAHAHAHHA they ignored me obviously and put my hand on the pump button and proceeded to tell me how it worked!
Then once I left recovery they wheeled me into the NICU room Finn was in(the rooms there are individual) and let me hold him for a second and then up I went to my room it was about 230 at this point. Well about 4am the door opens and a Dr has paper work and says he is there to get a signature for Finn to recieve Platelet transfusions. CAJ and I looked at each other like we aren't sure and I said well I am not clear minded you make the decision and the Dr said well you go ahead and sign this b/c really it wasn't a question if you were going to or not. and I am going to go run his platelet levels again they are so low it is likely wrong. OK so then about 5:45 I said get up we have to go see Finn I guess I thought I had slept enough. So the nurse comes in and says Ma'm you can't leave here with that moriphine pump and you need it... na take it off I will be okay promise! So at my request off it came and down we went to see him. I got there and my Mom was in there, why are you still here?? OMG you spent the night with him!!! Yep it's been a wild night and someone needed to be here. Then they let me hold him and then as I was checking him out I lifted his blanket and see BLOOD POURING EVERYWHERE so I trying to stay calm get the nurse to help and so she says well that's part of the problem his low platelets are causing him to bleed let's put him back in his isolate(sp?) Ok fine and my mind was really spinning. He had a Huge bruise on his head and little petichea all over from the bleeding and a pretty big head I guess, I mean it wasn't as bad as I expected but yea it was big). We took lots of pics and such and then they said ok we have a team coming in he is going to Children's across the street. So in his box he goes they walked him over this secret way and we went up to get some things and we were to ride the shuttle over to meet them. Being it was NYE the lady says honey I will take but you gone have to fine yo own ride back it's NYE and I'm leavin here when I drop you off! Fine I don't care and I may not leave anyway haha!)Well when we got there we meet all these dr's and nurses that are huddled around and the neonatologist said his scan looked good and that he was going to be ok and then we got totally landblasted by a resident Dr I like to refer to as Dr. Wizanut! (the resident neurosurgeon) that had total opposite news. and at this point I really don't know how to even tell you what happened. Except that it was so shocking, abrupt, devasting and I don't even know how to describe it and thats when we went to the lobby. I began processing what was happening and decided I was going to hunt that aweful man down and get more details and give him a piece of my mind!!!! However I found the practioner that was standing there when we were given the news and she arranged an immediate meeting with us, the grandparents and the neonatologist, where he appologized and said the radiologist had reported good news to him and he was sorry to tell us but it was a Huge mistake and that Finn had suffered from Hydracephalus as a result of a massive brain hemmorage, but that he could say his brainstem was not damaged and that he would definetly live! But that was the only positive thing he had to say b/c basically all but a very small part of the frontal lobe was affected.
WHY did he have a hemorage???? Well 1 resident back at UAB suspected something called NAIT when they got the low platelet test back. How she knew about it no one knows. We haven't met a Dr yet that knew about NAIT. Neonatal Alloimune Thrombocytapenia. Some have heard of it but say they say the word NAIT in school and move on to the next subject. So after lots of testing it was confirmed yes We have NAIT. I will make a whole new post about NAIT and what it is later.
So in summary thankfully Finn was a very healthy baby boy except the injury and was able to fight his little 8lb 9oz 201/2 inch self through all of this and come out on top!
For 3 days we had to wait to have surgery b/c Finn's platelets at birth were 9k and normal is 150-400k. He almost bled to death the night he got to Children's trying to get an IV in so they called in the middle of that night for consent to do a PICU line. Which worked out fine but very very scary and there was still blood all over when we got there that next morning. He was basically spewing like a water hose within his body and outward if he was poked!!! Then on NYE they said they had found a man in North Carolina that was a Donor(meaning he was an exact match to Finn) and was going to donate and they would have them within hours via a jet. Whoever that man is we will never know but he basically saved Finn's life! They had done transfusion after transfusion and his body was eating right through 100's of thousands within hrs. So he had to have this perfect match and from there he began to heal!!! On Jan 3rd he had surgery #1 to put in a VP Shunt with little decompression they decided he need a EVD(external drain which I said all along looked like something out of Mrs. Wells physics class!) That was no fun b/c we couldn't move him without help and balancing and all this craziness. But we could watch the progress and thought it would turn clear any moment and we would be headed home. WRONG! the originally shunt had clogged b/c the protein was so high. The fluid had been discolored to the color of dark coffee from the blood. Well after 10days they decided he had to have another surgery b/c the drain is external and runs a Huge risk of infection. the word Infection made my skin crawl b/c I just knew an infection could be more than Finn could handle but fortunately we never faced that fear. So on Jan 20th they decided to put in a Subgaleal shunt and that's when I almost broke and we asked to see the head of Neurosurgery there and so we met Dr. Oaks. We had many people prep us for that, as he is a very interesting bird. Many people had unkind names for him but everyone spoke very highly of his intelligence and we just needed a 2nd opinion b/c after all they were wanting to do a 3rd Brain Surgery on Finnemore! Which many of you have heard our funny tales about Dr. Oaks and he is a whole entire post of his own!! But hey at that point you couldn't hurt us any more we just needed someone else with that kind of intelligence to agree he did need to have the next surgery! So this shunt is what he is working off of still today. It is where they went in and lifted his scalp up put a shunt in and made a pocket b/w the scalp and scull for the fluid to drain and his body reabsorbs. And that's what we refer to as his bubble. They said it would last 30-35days max and then we would reevaluate. But that 35 days has now turned into over 6months! Go Finn!!! :) They normally don't let you leave with a subgaleal shunt but with lots of promise to take good care of him we talked them into. and on Feb 2nd it was just Mom and I there b/c everyone was rotating weeks to stay with me at this point they came in and said I think we are moving y'all to a room which we had been praying for b/c then we could stay in the room round the clock with Finn. In the NICU he was in big room with over 20 more babies) We couldn't believe it and once it really happened we called CAJ and told him to plan to come back a day early b/c they had to watch us both with Finn for a night also b/f we could go home. They love those babies and you can't just walk out with them, you have to pass lots of tests of approval b/f you can. We Passed :) and on Feb 4th they came in and asked if we were ready to go and you should have seen our smiles!!! We didn't tell anyone b/c we couldn't even believe it ourselves plus he wasn't allowed to have company b/c we were planning to go back with in a couple weeks for the next surgery. Again that couple of weeks has now been months!
Finn started physical therapy immediately at the hospital here and with Early Intervention at the house. He turned 8months yesterday and is totally not the baby they told us he would be. THEY DON'T KNOW EVERYTHING, THEY JUST WANT YOU TO THINK THEY DO!!!!
So now your all kind of caught up on the progress of Finnemore Riley!!! As for tomorrow...We have NO CLUE what he will do next. But hey no one knows what their baby will do in life, we just have a reason to question and wonder more. And Thank you Thank you for all the praying you have done for Finn for the last 8months you are being heard!!!
The Dr just kept looking and looking and then a nurse came and said he had a call, well he took it but he said I am not done just hold on. So then I got nervous and asked the nurse why does his head fill up the screen and she said well that happens at this point cause he is full grown(don't know if that's the truth or if she was just telling me that til the Dr came back) so I said ok and then the Dr came back in and it came up again and he said well that's what I am looking at. My heart was beating for sure so I said sooo what does this mean and he said well your going to have this baby today! GOOD is what I initially thought. He said I would need a c-section. Still fine with me I had prepared all along for that possibility b/c hey they do them all the time and I am no exception. I could deliver that way as easy as anyone else does and thinking we were about to head over to ARH. Then he began to explain more and said he thought that the baby had something called Hydracephalus and then my Heart Totally stopped and he said you need to call Christopher and that he was going to call Mobile and Birmingham and see which we could get in. MOBILE OR BIRMINGHAM what is happening! I asked what all this meant and would the baby live and he said he just didn't know, he had not seen but a couple cases of it ever. I felt like at that very moment everything spun right out of my control. I managed to call Christopher and he said he would be right there but he hung up for whatever crazy reason and I was just sitting there and so I called my Mom and Caroline answered and I managed to say the baby's head is too big and I am having to have a C-Section so Mom told me to calm down(thinking I was just upset about having a csection) and asked if I needed her to come and so within seconds she and Caroline were there. While I waited for them to get there a sweet nurse came in and prayed for a miracle for our baby.
They got there and were briefed on what was happening, and they sent us home to pack, so we called Nancy on the way and she met us at the house. Dr called it was my choice we could go to either hospital, well I had never heard of anyone that went to UAB that they didn't have something they needed and were transfered so I chose UAB. GREAT choice!!!!! Some how we all got on the road. Whitney took little Lady Jane to stay at Donna's, Christopher and Me in the back of the Tahoe with my sweet sister driving that huge machine in the Rain and Mom Co-Piloting. and Ricky and Nancy leading the way in their car.
We had all just gotten I-phones and the whole way there searched and searched what Hydrocephalus was and what we could be expecting. Called my Dad and brothers who were hunting in Prattville they waited at the interstate and jumped on the interstate as we approached and we officially had a train flying up 65. Oh and in Montgomery in the pouring rain with our flashers on a State Trooper tries to pull us over. HA yea right just follow us if you want dude!!! Caroline tried signing that I was in labor and Christopher even rolled down the window like he was going to shout it to him!!! That gave us all a small laugh! But Ricky actually pulled over and the man said he just wanted to make sure we didn't have an emergency. Well DUH we are speeding and have our flashers going! It only took 2 seconds though he was nice and Ricky flew past us again to keep leading the way.
We got to UAB they knew exactly who I was and were ready. We saw several Dr.s and they confirmed Yes he had Hydracephalus but they wouldn't know why until he was born. Well we just felt sure it was a birth defect, he would need a shunt and we could start recovering. (Wrong but I will tell that later!) they were ready to do the section BUT asked when I ate last well being the honest person I am I said I had a BITE of a RICE CAKE when we got in the car. STUPID ME! Instantly our emergency c-section was put on hold for 7 Looooooooong Hours. But they said the injury was already there and not getting worse so we would have to wait. FINE!!! So we waited and waited. My sweet Uncle Vernon popped his head for a visit which just really brightened my day!(he drove up from Prattville just to check on us :)) Blakely and RHT ran to Newk's and got everyone food b/c at this point it was supper time and no one had eaten a bite since we left that morning. And YES CAJ ate the finest looking sandwich I had ever seen right in front of me!
Finally it was time a little b/f 9 pm they came to get me. Then I got nervous! Plus CAJ had to wait outside while they prepped me. And anyone that's had one knows once your numb you are Numb! and then I began to cry b/c I realized since I was now numb I wouldn't feel the little fella wiggle ever again in my tumtum and about that time he did a big ole wiggle and then I was all smiles and ready to proceed, CAJ came in about then also.
and just my luck they had about 5 students they were teaching and it was the longest section in history.(almost 2 hrs) They told me they had started and so I looked at CAJ and asked ok what's his name??? He can't be Baby forever! It was between Elijah Thomas and Finnemore Riley and he took 1 split second and said Finnemore Riley and then... Finally I hear LOOK AT THOSE BIG OLE FEET! and then it's 10:39pm!!! and then I heard him crying and off he went behind me out the door to the Neo team that was waiting in this back hall for him. and then as they promised, if he was breathing ok, they ran him back in for a split second so I could see him!
Then off to recovery where they told me I was about to have feeling again and they were going to start a Moriphine drip and I strongly said OH NO I don't want any narcotics just some Ibprofin I want to stay alert b/c Finn is sick. HAHAHAHHA they ignored me obviously and put my hand on the pump button and proceeded to tell me how it worked!
Then once I left recovery they wheeled me into the NICU room Finn was in(the rooms there are individual) and let me hold him for a second and then up I went to my room it was about 230 at this point. Well about 4am the door opens and a Dr has paper work and says he is there to get a signature for Finn to recieve Platelet transfusions. CAJ and I looked at each other like we aren't sure and I said well I am not clear minded you make the decision and the Dr said well you go ahead and sign this b/c really it wasn't a question if you were going to or not. and I am going to go run his platelet levels again they are so low it is likely wrong. OK so then about 5:45 I said get up we have to go see Finn I guess I thought I had slept enough. So the nurse comes in and says Ma'm you can't leave here with that moriphine pump and you need it... na take it off I will be okay promise! So at my request off it came and down we went to see him. I got there and my Mom was in there, why are you still here?? OMG you spent the night with him!!! Yep it's been a wild night and someone needed to be here. Then they let me hold him and then as I was checking him out I lifted his blanket and see BLOOD POURING EVERYWHERE so I trying to stay calm get the nurse to help and so she says well that's part of the problem his low platelets are causing him to bleed let's put him back in his isolate(sp?) Ok fine and my mind was really spinning. He had a Huge bruise on his head and little petichea all over from the bleeding and a pretty big head I guess, I mean it wasn't as bad as I expected but yea it was big). We took lots of pics and such and then they said ok we have a team coming in he is going to Children's across the street. So in his box he goes they walked him over this secret way and we went up to get some things and we were to ride the shuttle over to meet them. Being it was NYE the lady says honey I will take but you gone have to fine yo own ride back it's NYE and I'm leavin here when I drop you off! Fine I don't care and I may not leave anyway haha!)Well when we got there we meet all these dr's and nurses that are huddled around and the neonatologist said his scan looked good and that he was going to be ok and then we got totally landblasted by a resident Dr I like to refer to as Dr. Wizanut! (the resident neurosurgeon) that had total opposite news. and at this point I really don't know how to even tell you what happened. Except that it was so shocking, abrupt, devasting and I don't even know how to describe it and thats when we went to the lobby. I began processing what was happening and decided I was going to hunt that aweful man down and get more details and give him a piece of my mind!!!! However I found the practioner that was standing there when we were given the news and she arranged an immediate meeting with us, the grandparents and the neonatologist, where he appologized and said the radiologist had reported good news to him and he was sorry to tell us but it was a Huge mistake and that Finn had suffered from Hydracephalus as a result of a massive brain hemmorage, but that he could say his brainstem was not damaged and that he would definetly live! But that was the only positive thing he had to say b/c basically all but a very small part of the frontal lobe was affected.
WHY did he have a hemorage???? Well 1 resident back at UAB suspected something called NAIT when they got the low platelet test back. How she knew about it no one knows. We haven't met a Dr yet that knew about NAIT. Neonatal Alloimune Thrombocytapenia. Some have heard of it but say they say the word NAIT in school and move on to the next subject. So after lots of testing it was confirmed yes We have NAIT. I will make a whole new post about NAIT and what it is later.
So in summary thankfully Finn was a very healthy baby boy except the injury and was able to fight his little 8lb 9oz 201/2 inch self through all of this and come out on top!
For 3 days we had to wait to have surgery b/c Finn's platelets at birth were 9k and normal is 150-400k. He almost bled to death the night he got to Children's trying to get an IV in so they called in the middle of that night for consent to do a PICU line. Which worked out fine but very very scary and there was still blood all over when we got there that next morning. He was basically spewing like a water hose within his body and outward if he was poked!!! Then on NYE they said they had found a man in North Carolina that was a Donor(meaning he was an exact match to Finn) and was going to donate and they would have them within hours via a jet. Whoever that man is we will never know but he basically saved Finn's life! They had done transfusion after transfusion and his body was eating right through 100's of thousands within hrs. So he had to have this perfect match and from there he began to heal!!! On Jan 3rd he had surgery #1 to put in a VP Shunt with little decompression they decided he need a EVD(external drain which I said all along looked like something out of Mrs. Wells physics class!) That was no fun b/c we couldn't move him without help and balancing and all this craziness. But we could watch the progress and thought it would turn clear any moment and we would be headed home. WRONG! the originally shunt had clogged b/c the protein was so high. The fluid had been discolored to the color of dark coffee from the blood. Well after 10days they decided he had to have another surgery b/c the drain is external and runs a Huge risk of infection. the word Infection made my skin crawl b/c I just knew an infection could be more than Finn could handle but fortunately we never faced that fear. So on Jan 20th they decided to put in a Subgaleal shunt and that's when I almost broke and we asked to see the head of Neurosurgery there and so we met Dr. Oaks. We had many people prep us for that, as he is a very interesting bird. Many people had unkind names for him but everyone spoke very highly of his intelligence and we just needed a 2nd opinion b/c after all they were wanting to do a 3rd Brain Surgery on Finnemore! Which many of you have heard our funny tales about Dr. Oaks and he is a whole entire post of his own!! But hey at that point you couldn't hurt us any more we just needed someone else with that kind of intelligence to agree he did need to have the next surgery! So this shunt is what he is working off of still today. It is where they went in and lifted his scalp up put a shunt in and made a pocket b/w the scalp and scull for the fluid to drain and his body reabsorbs. And that's what we refer to as his bubble. They said it would last 30-35days max and then we would reevaluate. But that 35 days has now turned into over 6months! Go Finn!!! :) They normally don't let you leave with a subgaleal shunt but with lots of promise to take good care of him we talked them into. and on Feb 2nd it was just Mom and I there b/c everyone was rotating weeks to stay with me at this point they came in and said I think we are moving y'all to a room which we had been praying for b/c then we could stay in the room round the clock with Finn. In the NICU he was in big room with over 20 more babies) We couldn't believe it and once it really happened we called CAJ and told him to plan to come back a day early b/c they had to watch us both with Finn for a night also b/f we could go home. They love those babies and you can't just walk out with them, you have to pass lots of tests of approval b/f you can. We Passed :) and on Feb 4th they came in and asked if we were ready to go and you should have seen our smiles!!! We didn't tell anyone b/c we couldn't even believe it ourselves plus he wasn't allowed to have company b/c we were planning to go back with in a couple weeks for the next surgery. Again that couple of weeks has now been months!
Finn started physical therapy immediately at the hospital here and with Early Intervention at the house. He turned 8months yesterday and is totally not the baby they told us he would be. THEY DON'T KNOW EVERYTHING, THEY JUST WANT YOU TO THINK THEY DO!!!!
At 6 months we went for a CT Scan which would show us the results of his shunt and much to their suprise his picture was Great News!!!! The Dr came in asking regular questions and then he goes Soo do you want to see the Good News? My mind started racing b/c I had not even let myself consider the fact that Finn's ventricals and brain could have healed. So I asked well what's the bad news and he said I DIDN'T SAY THAT! oh 'scuse me Yes we want to see the Good News!!!!! and it's hard to describe but if you see me and want to know I have a picture and don't mind showing it but I don't like to give details like that unless I am in person with you b/c it's very personal and people are cruel and crazy and could interpret and go crazy with ideas of a picture that they don't understand. B/C no Finn's brain scans don't look like a normal brain obviously. We couldn't be more encouraged today. It is truely b/c of the endless prayers from some many people. Finn is truly a testiment to the power of prayer and a reminder that only 1 person is in control of our lives. I used to post asking for you to pray for a miracle and that miracle is Finn's whole life not just 1 specific thing and more and more of it is being answered everyday!!!!
So now your all kind of caught up on the progress of Finnemore Riley!!! As for tomorrow...We have NO CLUE what he will do next. But hey no one knows what their baby will do in life, we just have a reason to question and wonder more. And Thank you Thank you for all the praying you have done for Finn for the last 8months you are being heard!!!
I know this was long but it's been a long 8 months!!!!!
