Tomas had his swallow study and it was a disaster, but not for the reasons I thought it would be. The last time I fed him on anything of a regular schedule was about 6 weeks ago. He ended up with bronchitis again so the last pulm doctor put him on hold until after the next swallow study. I gave him a good long break before I even tried to just give him a spoonful here and there. About 3 weeks ago I tried to give him some baby fruit, and he turned his face away. A few days later and he turned his face a way, but with moderate amounts of effort on my part he did take 3 or so spoonfuls before I stopped so as not to make him sick again. I remember thinking while this was all going on that it has finally happened. He is getting orally averse. After almost two years of no real mouth eating he is done with it, plus I think he's finally figured out it hurts and he doesn't like it.
Flash forward to this morning and he wanted nothing to do with the bottle, or the spoon. I tried a few times but there was no coaxing him at all. Finally, the feeding therapist forced a syringe into his mouth to make him swallow, he spit it back out. The test was called off and I got to clean off my barium covered baby.
The report (the therapist told me) is going to say he is orally averse and needs intensive feeding therapy, just so he can come back and have another test to see if he is actually allowed to eat. Wrap your head around that one.
Now comes decision time, I talked to Mike and the first thing he said was we needed to get him therapy right away otherwise he won't eat. I am so torn over this. I can see both sides, the first being that we need to teach him how to eat and to learn that eating is not going to hurt him (providing of course that he is NOT aspirating - which we can't tell until he eats - bizzarro). That means intensive therapy and fair amounts of torture as he clearly does not want food in his mouth. With a fair amount of work we could get him to the point where he can be tested and then see if it is ok to continue feeding him or not.
The other side is why bother right now? He is still going to need the tube until we figure out the metabolic issues, so why try to get him eating. Why not just wait until he is 3 or 4 and we can use (a small) amount of reason to lessen the severity of trauma involved in learning to eat.
Ugh... I just don't know, it can so go either way. On one hand, he could get a metabolic diagnosis in, let's say, a month, and without feeding him for that month I would lose what (very) tiny hope I have right now of getting him to take a spoon. On the other hand he has only been sick once since we moved back to continuous j feeds (in August). I can't discount that.
Out of curiosity I tried tonight to feed him. After much happy talking and cheering I did get him to let the spoon in twice. He spit all the food out but he did open his mouth for the spoon. So maybe that is the happy medium God is trying to show me. Keep him allowing the food in there, but don't force him to swallow it. Not yet anyway.
Wednesday, November 17, 2010
Tuesday, November 16, 2010
"The stander!"
This is still hard for me to believe but here is the evidence. This morning he actually clapped and got excited when he saw it - weird little person that he is!
Monday, November 15, 2010
Standing frames and label makers
The standing frame came three days ago. I was so afraid of this thing. I thought for sure he would hate it. I thought he would fuss from the minute we tried to strap him in until I finally let him free 5 minutes later.
I was wrong. Really wrong.
The first time the PT was here and set all the measurements and heights. We laid him down on it, affixed all the straps, and then inclined him. Not a peep. We put toys on the tray for him to chuck off (his favorite game) and he just chucked away. No fussing. 10 minutes go by, 15, 20. Really, who is this child? He won't bear weight on his legs for more than 5 seconds, usually less, at any other time. At the 25 minute mark he started to rest his head so we took him out. All in all almost half an hour without one complaint.
It has been 4 days now and he's gone for half an hour every day without a peep of complaint. This morning he actually smiled and laughed. I am so shocked. Granted there is not much weight on his feet, most of it is distributed throughout the frame, BUT his feet are touching the plates, and he is strapped in and can only move his arms and his head. My mother in law thinks it is because he likes the view. She may be on to something. usually he sees the world from 6" off the ground. There is no hint of weight bearing without the frame, just as before, but way I am so thrilled to have a way to work with him that he doesn't complain about!
As usual he has a few medical things going on, most of it just ongoing issues. He is intermittently bleeding from his G port though, and that is new (at least in the recent months). It is not just the "tube irritation" blood that I sometimes find, but actual bleeding from inside the stoma. Just very faint though. I was collecting gastric acid (as exhibit A) to bring to the doctors with me later this week when The Maniac struck.
He had been away on a business trip for a week. On Friday evening I purposefully cleaned and shined the bathroom counter tops and put my graduated cylinder of bloody goo in the back corner by my sink so the maniac would not pay any attention to it. He got home after midnight, and Saturday morning I got up to make breakfast. He got up to clean the bathroom. I don't call him a maniac for nothing. Really, pancakes and bacon are cooking? - great he's got time to scrub a toilet! Usually, this is a good thing as scrubbing toilets is not high on my "like" list.
A while later I went to do Tomas' morning stuff. I had his acid in the syringe and went into my bathroom to add it to what was already there. The cylinder was (any one guessed it yet?) empty!!! Really? I cleaned the counter tops the night before to prevent this exact thing! What was he thinking, that I keep medical bottles around with bloody goo just for fun? Did he even ask before he dumped it? And the kicker is do you know what he said when I was like "what the hell were you thinking?"
"Well, you should have put a lid on it and labeled it SAMPLE"
I was wrong. Really wrong.
The first time the PT was here and set all the measurements and heights. We laid him down on it, affixed all the straps, and then inclined him. Not a peep. We put toys on the tray for him to chuck off (his favorite game) and he just chucked away. No fussing. 10 minutes go by, 15, 20. Really, who is this child? He won't bear weight on his legs for more than 5 seconds, usually less, at any other time. At the 25 minute mark he started to rest his head so we took him out. All in all almost half an hour without one complaint.
It has been 4 days now and he's gone for half an hour every day without a peep of complaint. This morning he actually smiled and laughed. I am so shocked. Granted there is not much weight on his feet, most of it is distributed throughout the frame, BUT his feet are touching the plates, and he is strapped in and can only move his arms and his head. My mother in law thinks it is because he likes the view. She may be on to something. usually he sees the world from 6" off the ground. There is no hint of weight bearing without the frame, just as before, but way I am so thrilled to have a way to work with him that he doesn't complain about!
As usual he has a few medical things going on, most of it just ongoing issues. He is intermittently bleeding from his G port though, and that is new (at least in the recent months). It is not just the "tube irritation" blood that I sometimes find, but actual bleeding from inside the stoma. Just very faint though. I was collecting gastric acid (as exhibit A) to bring to the doctors with me later this week when The Maniac struck.
He had been away on a business trip for a week. On Friday evening I purposefully cleaned and shined the bathroom counter tops and put my graduated cylinder of bloody goo in the back corner by my sink so the maniac would not pay any attention to it. He got home after midnight, and Saturday morning I got up to make breakfast. He got up to clean the bathroom. I don't call him a maniac for nothing. Really, pancakes and bacon are cooking? - great he's got time to scrub a toilet! Usually, this is a good thing as scrubbing toilets is not high on my "like" list.
A while later I went to do Tomas' morning stuff. I had his acid in the syringe and went into my bathroom to add it to what was already there. The cylinder was (any one guessed it yet?) empty!!! Really? I cleaned the counter tops the night before to prevent this exact thing! What was he thinking, that I keep medical bottles around with bloody goo just for fun? Did he even ask before he dumped it? And the kicker is do you know what he said when I was like "what the hell were you thinking?"
"Well, you should have put a lid on it and labeled it SAMPLE"
Monday, November 8, 2010
Patient Abandonement
Since Oct. was Ds Awareness month, and I was writing about Tomas' arrival I didn't want to interrupt with my doctor drama, but now that it is November - drama away!
On Oct. 29th I got three letters in the mail (one for each of my kids) from their pulmonologist. They all said the same thing, that she was shutting down her office effective OCTOBER 1st and moving out of state. The medical records were with her and if we wanted them faxed to another doctor's office she gave us a fax number and a form to fill out. That night I was in a panic - how could I get another pulmonologist that fast? The ones at the children's hospital had a 4 month wait and winter is on its way! The following morning at 8:10am I get a phone call from the pediatrician that he got a very curious letter from the pulmonologist and did I know anything about it? I told him I got the same letter - he said, "Well then, we need to get Tomas a new lung doctor ASAP." No kidding, not to mention the other two who have asthma and the older one who has fairly significant asthma, but yeah, I need a new doc ASAP for little man all right. He gave me the numbers of some people and said if I had trouble (more than a week's wait) to call him back.
Amazingly, when I called the first preference of the pediatrician and explained the situation, I was able to get an appointment for today. That was so perfect, the girls have to wait a bit longer since they weren't as urgent, and will go mid-month to get established, but Tomas was definitely the priority. Next up, getting his records faxed to the new office. I faxed the form to the number on the letter, NO ANSWER. I called the old office number - no answer, I tried the old fax number - no answer. I called the pediatrician - he had no more luck than I. I googled the number the pulmonologist left, it is a fax number for a non-medical office in New Orleans. I tried the phone number connected to that office, but NO ANSWER.
That's it -she's gone, and has records for all my kids and I can't get them. My fantastic pediatrician copied what he had and thought was pertinent (that alone was 80 pages - can you imagine what the full file must be like?) and I picked that up on Friday to take with me today. When I got to the new doctor's office and handed him the records and old x-rays (which thank God I kept a copy of!) he said - "So there's no way to get his records?" Nope, not that I can tell. He said, "Well, you're not really supposed to do that. She didn't give you any warning?" Nope. I took Tomas to her on Sept. 28th for a sick visit. She shut down Oct. 1st. He said "It's like patient abandonement - if she hadn't left the state I would...(he didn't finish)"
And I thought, "That's it." That is exactly what I feel like, it's horrible. No office notes, no plans for treatment. Nothing. We are starting completely over. And she was supposed to file an appeal for his Synagis since he was denied this year. I have no idea whether she did or not. The worst part is she was a fantastic doctor. She took hours when needed to care for him and go over everything, and called to check on him (or Olivia) sometimes even pretty late when she had finished rounding at the hospital. I am assuming something horrible happened because nothing else makes sense. But not having any working numbers also makes no sense so I just don't know.
The new pulm was very good and needs to go over what I gave him today, and then get back to me. Of course the word trach was tossed around, because when you think Ds, obstructive sleep apnea, and aspiration, you think trach, but I hope that he'll come around the way the others did. If Tomas should need it, then so be it, but right now I don't think he does. Time will tell. He also wants to move up the sleep study - it was supposed to be in January. He wants it much sooner, since pulmonary hypertenstion is a worry. Right now we are just in the evaluate mode.
Fun, fun, fun!
On Oct. 29th I got three letters in the mail (one for each of my kids) from their pulmonologist. They all said the same thing, that she was shutting down her office effective OCTOBER 1st and moving out of state. The medical records were with her and if we wanted them faxed to another doctor's office she gave us a fax number and a form to fill out. That night I was in a panic - how could I get another pulmonologist that fast? The ones at the children's hospital had a 4 month wait and winter is on its way! The following morning at 8:10am I get a phone call from the pediatrician that he got a very curious letter from the pulmonologist and did I know anything about it? I told him I got the same letter - he said, "Well then, we need to get Tomas a new lung doctor ASAP." No kidding, not to mention the other two who have asthma and the older one who has fairly significant asthma, but yeah, I need a new doc ASAP for little man all right. He gave me the numbers of some people and said if I had trouble (more than a week's wait) to call him back.
Amazingly, when I called the first preference of the pediatrician and explained the situation, I was able to get an appointment for today. That was so perfect, the girls have to wait a bit longer since they weren't as urgent, and will go mid-month to get established, but Tomas was definitely the priority. Next up, getting his records faxed to the new office. I faxed the form to the number on the letter, NO ANSWER. I called the old office number - no answer, I tried the old fax number - no answer. I called the pediatrician - he had no more luck than I. I googled the number the pulmonologist left, it is a fax number for a non-medical office in New Orleans. I tried the phone number connected to that office, but NO ANSWER.
That's it -she's gone, and has records for all my kids and I can't get them. My fantastic pediatrician copied what he had and thought was pertinent (that alone was 80 pages - can you imagine what the full file must be like?) and I picked that up on Friday to take with me today. When I got to the new doctor's office and handed him the records and old x-rays (which thank God I kept a copy of!) he said - "So there's no way to get his records?" Nope, not that I can tell. He said, "Well, you're not really supposed to do that. She didn't give you any warning?" Nope. I took Tomas to her on Sept. 28th for a sick visit. She shut down Oct. 1st. He said "It's like patient abandonement - if she hadn't left the state I would...(he didn't finish)"
And I thought, "That's it." That is exactly what I feel like, it's horrible. No office notes, no plans for treatment. Nothing. We are starting completely over. And she was supposed to file an appeal for his Synagis since he was denied this year. I have no idea whether she did or not. The worst part is she was a fantastic doctor. She took hours when needed to care for him and go over everything, and called to check on him (or Olivia) sometimes even pretty late when she had finished rounding at the hospital. I am assuming something horrible happened because nothing else makes sense. But not having any working numbers also makes no sense so I just don't know.
The new pulm was very good and needs to go over what I gave him today, and then get back to me. Of course the word trach was tossed around, because when you think Ds, obstructive sleep apnea, and aspiration, you think trach, but I hope that he'll come around the way the others did. If Tomas should need it, then so be it, but right now I don't think he does. Time will tell. He also wants to move up the sleep study - it was supposed to be in January. He wants it much sooner, since pulmonary hypertenstion is a worry. Right now we are just in the evaluate mode.
Fun, fun, fun!
Thursday, November 4, 2010
The (really) good and the (not too) bad
Good first - he's home, and had only a tiny bit of trouble with anesthesia. The doctor was ready for him and did something with the meds when Tomas started dropping his heart rate. So no intervention necessary this time - hooray! MRI went great and we should have results by Monday.
Bad - No platelet study as Tomas would not bleed today. They sent in the expert for difficult sticks and after 3 tries even she gave up. The game plan was then to draw out from the IV after it was placed, but that didn't work either. Nothing. Nada. So we have to go back another time to do it. The bummer of that is that particular test is only done in Dallas so I'll have to drive back there sometime soon. More bad - his blood sugar was already starting to drop after only 2 hours of fasting. He had been on pedialtye for 3 hours previous to the fasting but there just doesn't seem to be enough sugar in pedialyte to help him. That means his blood sugar issue is still there, we are just masking it with the continuous feeds. He stayed on a D5 drip through the procedure to keep his levels stable, and I was able to re-start his feeds before we left.
Thank you all so much for your thoughts and prayers. When I checked the computer this afternoon and saw all the messages I was so grateful. It is so uplifting to know that you all remembered him today.
A few weeks ago at a pumpkin patch:
Bad - No platelet study as Tomas would not bleed today. They sent in the expert for difficult sticks and after 3 tries even she gave up. The game plan was then to draw out from the IV after it was placed, but that didn't work either. Nothing. Nada. So we have to go back another time to do it. The bummer of that is that particular test is only done in Dallas so I'll have to drive back there sometime soon. More bad - his blood sugar was already starting to drop after only 2 hours of fasting. He had been on pedialtye for 3 hours previous to the fasting but there just doesn't seem to be enough sugar in pedialyte to help him. That means his blood sugar issue is still there, we are just masking it with the continuous feeds. He stayed on a D5 drip through the procedure to keep his levels stable, and I was able to re-start his feeds before we left.
Thank you all so much for your thoughts and prayers. When I checked the computer this afternoon and saw all the messages I was so grateful. It is so uplifting to know that you all remembered him today.
A few weeks ago at a pumpkin patch:
Wednesday, November 3, 2010
MRI
During October's Tomas story I purposely didn't blog about any medical stuff. It was a long month with much discussing and little headway. Doctors were able to rule out one disorder (Schwachman Diamond) but there are still a few on the table - some of which are pretty scary. Finally, after much back and forth, tomorrow Tomas has an MRI for his liver. Hopefully, this will give us some sense of what is going on with his liver enzymes and lead us to an answer for the immune system and neutropenia. After the MRI (if all goes well) he is having a special platelet aggregation study done to try and find a reason behind his petechiae. It could be a big day for us in moving forward toward answers.
The last time he went under he needed an injection to get his heart going again and bagging. I'm a little nervous but not too much as they know him pretty well at the hospital and are always ready for him. But if you could remember him in your prayers tomorrow I would be most grateful. Thank you!
The last time he went under he needed an injection to get his heart going again and bagging. I'm a little nervous but not too much as they know him pretty well at the hospital and are always ready for him. But if you could remember him in your prayers tomorrow I would be most grateful. Thank you!
Monday, November 1, 2010
Frog Scooting
His therapist called it "interesting". She is bringing a standing frame next week since he still won't bear weight on his legs, and she doesn't think this is an effective means of mobility. Personally, I could care less right now. Maybe if he was, oh let's say 5 or so and still scooting about I might have trouble with it, but for now it is pretty cute. I'll try the frame but I already told her I have no intention of torturing him with it. We did run into a snag with the cooler weather, though. Socks on his feet don't give him enough traction, and shoes make his feet stick and he can't move with them on. I tried some moccasin socks I found at Target but they are only sticky on the bottom and he digs in with the side of his feet. I may have to get creative!
Sunday, October 31, 2010
Friday, October 29, 2010
God and Tomas, epilogue
There is so much more to tell, so many more ways God has walked and is walking through this journey with us, but I wanted this to be the story of the beginning; of how we came to be where we are. Each of us was stretched, and shaped, and reformed individually, and yet our family is also something different than what is was before, something better. This experience, and here I am speaking of the medical complications that abound - not the DS, has been so grueling and so exhausting and so not over with that finding something positive to say should be very difficult. It should be, but it isn't. Tomas is exactly what we never knew we wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme. It was not the end of the world - it was the beginning of one.
Tuesday, October 26, 2010
God and Tomas, part nine
On the way out of OR I got to swing by (in my bed) NICU and really take a look at him for the first time. He was so small. I touched his toes and just looked and looked, as much as I could in a drive by viewing. He had a tube down his throat to drain out what was in his stomach because it had nowhere to go.
Since it was past midnight when I was brought to my room, and my friend was beat, she decided to stay with me and help me out. I am so glad she did, I can't imagine being there by myself that night. The nurses came in and did their thing, and by 8am I was going to get my rear-end to NICU. I got out of bed and tried to dress and clean and all the other things you need to do after a c-section; and let's just say my friend and I are bonded for life and I can never disown her because she knows too much. And thank God for narcotics so I don't have to remember any of it vividly - just a vague recollection.
She wheeled me down and I had my initiation into NICU scrubbing. We went into his room, and after we were settled the nurse put him in my arms. I got to hold him for the first time, and the wires and tubes just disappeared. They melted into nothingness, away from the space that was just him and me. What a glorious moment!
After a bit we went back to my room and my friend got me settled and then headed home. My husband had caught a flight out of CA that morning but still wouldn't be there until well into the afternoon. Around this time the phone calls started rolling in from the NICU nurses and doctors about all the diagnosis they were finding. What we thought was a healthy heart based on pre-natal screening actually had 4 holes in it, but they were small and expected to close on their own. Later that morning, another call came from the surgeon, he had convinced the hospital and some nurses to operate on Sunday. That was the next morning. I had someone wheel me to NICU and asked for a priest. Within an hour Father Scott from a nearby parish was there, and Tomas was baptized. Just him and me and a tiny syringe with a few drops of water. It was an emergency baptism - because he might not make it through the surgery.
A little later two other friends came to visit, we were on our way to NICU to see the baby. The elevator doors opened and who steps out - my husband! My friends graciously bowed out, allowing my husband to go in and meet Tomas in a private moment. We went in and looked him over. Tomas was not a magazine cover newborn, and it had nothing to do with DS. Oh, he was cute all right, but just had a few quirky things going on. For starters, he had no eyebrows - not a hair in sight. Then his cranial plates were overlapping. When I first saw this I thought it was a DS thing, but the nurses assured me it was a baby thing, and that they would move and shift and eventually fall into place. At the time my husband came in they were overlapping right over the center part of his head and he looked like a little Klingon baby, only with no eyebrows! I could tell he was nervous that this was all permanent stuff so I did my best to reassure him. He didn't want to hold him as there were too many wires and he was too afraid. We just sat there for a long time and watched, and eventually headed up to my room.
That evening was spent logistically planning for the surgery, and who would be where. He left me in the morning to go pick up the girls and his mom (who was staying with them at our house). They all met me in the waiting room for post-op, and then he and I walked with Tomas' isolette back to pre-op to say goodbye. That moment is so very, very hard. We've done it five times now, and it is never easy, but that first time was a huge test for us. How much did we mean it when we said we would put our faith in the Lord, and let go?
One huge blessing was that the post-op room was empty except for us. It was Sunday and no other surgeries were scheduled that day. We prayed and waited and entertained the girls. It was so strange, I was still in a wheelchair and on an epidural pump, I was only 32 hours post-op myself. Adrenaline is a gift from God.
The surgeon came out and said everything went very well, and that he had placed the g-tube "just in case" as we had discussed. What a huge Godsend that turned out to be!
A few days later, and I was in NICU alone, and he was not doing well. He was under jaundice lights, and completely swollen from the surgery. Not breathing well, and certainly not eating. In the far back corner of our shared room was an older baby whose mother was there every time I came to see Tomas. The baby was always on his stomach and had tons of toys and blankets under his crib. I didn't ever pay too much attention, and the hospital was pretty strict about its privacy policy. But I had learned about the butterflies.
At each room's entrance were butterfly stickers with the baby's last names that were in the room. One day I was walking towards Tomas' room, which normally housed 4 babies, and noticed there were only 3 butterflies that day. When I got closer the front corner curtain had been drawn, and I knew. The sadness and darkness just emanated from behind that curtain. I still couldn't touch Tomas but I moved my chair as close as I could to his isolette that day, and I hung my head for the family next to me.
A few days later the far back corner baby's father was there when I walked in. I had never seen him before, just his mother, and quite frankly he was scary. He looked like a gang member. His world was as far from mine as you could possibly imagine. Pants around his hips, gold chains, tattoos, funky hair - you name it, and he had it. I just moved to my small corner of the world and sat next to my baby. A little later I heard him talking to his son's nurse, "but can't they just do a lung transplant?" The nurse muttered something back which amounted to there was nothing more to be done. And my heart broke as that wall of fear came crumbling down around it. This man was begging for his son's life. It was the first wall that God used Tomas to tear down for me. About a week later and that baby's butterfly was gone and his curtain was closed, and I hung my head again. this time for the gang member father who was just like me.
Since it was past midnight when I was brought to my room, and my friend was beat, she decided to stay with me and help me out. I am so glad she did, I can't imagine being there by myself that night. The nurses came in and did their thing, and by 8am I was going to get my rear-end to NICU. I got out of bed and tried to dress and clean and all the other things you need to do after a c-section; and let's just say my friend and I are bonded for life and I can never disown her because she knows too much. And thank God for narcotics so I don't have to remember any of it vividly - just a vague recollection.
She wheeled me down and I had my initiation into NICU scrubbing. We went into his room, and after we were settled the nurse put him in my arms. I got to hold him for the first time, and the wires and tubes just disappeared. They melted into nothingness, away from the space that was just him and me. What a glorious moment!
After a bit we went back to my room and my friend got me settled and then headed home. My husband had caught a flight out of CA that morning but still wouldn't be there until well into the afternoon. Around this time the phone calls started rolling in from the NICU nurses and doctors about all the diagnosis they were finding. What we thought was a healthy heart based on pre-natal screening actually had 4 holes in it, but they were small and expected to close on their own. Later that morning, another call came from the surgeon, he had convinced the hospital and some nurses to operate on Sunday. That was the next morning. I had someone wheel me to NICU and asked for a priest. Within an hour Father Scott from a nearby parish was there, and Tomas was baptized. Just him and me and a tiny syringe with a few drops of water. It was an emergency baptism - because he might not make it through the surgery.
A little later two other friends came to visit, we were on our way to NICU to see the baby. The elevator doors opened and who steps out - my husband! My friends graciously bowed out, allowing my husband to go in and meet Tomas in a private moment. We went in and looked him over. Tomas was not a magazine cover newborn, and it had nothing to do with DS. Oh, he was cute all right, but just had a few quirky things going on. For starters, he had no eyebrows - not a hair in sight. Then his cranial plates were overlapping. When I first saw this I thought it was a DS thing, but the nurses assured me it was a baby thing, and that they would move and shift and eventually fall into place. At the time my husband came in they were overlapping right over the center part of his head and he looked like a little Klingon baby, only with no eyebrows! I could tell he was nervous that this was all permanent stuff so I did my best to reassure him. He didn't want to hold him as there were too many wires and he was too afraid. We just sat there for a long time and watched, and eventually headed up to my room.
That evening was spent logistically planning for the surgery, and who would be where. He left me in the morning to go pick up the girls and his mom (who was staying with them at our house). They all met me in the waiting room for post-op, and then he and I walked with Tomas' isolette back to pre-op to say goodbye. That moment is so very, very hard. We've done it five times now, and it is never easy, but that first time was a huge test for us. How much did we mean it when we said we would put our faith in the Lord, and let go?
One huge blessing was that the post-op room was empty except for us. It was Sunday and no other surgeries were scheduled that day. We prayed and waited and entertained the girls. It was so strange, I was still in a wheelchair and on an epidural pump, I was only 32 hours post-op myself. Adrenaline is a gift from God.
The surgeon came out and said everything went very well, and that he had placed the g-tube "just in case" as we had discussed. What a huge Godsend that turned out to be!
A few days later, and I was in NICU alone, and he was not doing well. He was under jaundice lights, and completely swollen from the surgery. Not breathing well, and certainly not eating. In the far back corner of our shared room was an older baby whose mother was there every time I came to see Tomas. The baby was always on his stomach and had tons of toys and blankets under his crib. I didn't ever pay too much attention, and the hospital was pretty strict about its privacy policy. But I had learned about the butterflies.
At each room's entrance were butterfly stickers with the baby's last names that were in the room. One day I was walking towards Tomas' room, which normally housed 4 babies, and noticed there were only 3 butterflies that day. When I got closer the front corner curtain had been drawn, and I knew. The sadness and darkness just emanated from behind that curtain. I still couldn't touch Tomas but I moved my chair as close as I could to his isolette that day, and I hung my head for the family next to me.
A few days later the far back corner baby's father was there when I walked in. I had never seen him before, just his mother, and quite frankly he was scary. He looked like a gang member. His world was as far from mine as you could possibly imagine. Pants around his hips, gold chains, tattoos, funky hair - you name it, and he had it. I just moved to my small corner of the world and sat next to my baby. A little later I heard him talking to his son's nurse, "but can't they just do a lung transplant?" The nurse muttered something back which amounted to there was nothing more to be done. And my heart broke as that wall of fear came crumbling down around it. This man was begging for his son's life. It was the first wall that God used Tomas to tear down for me. About a week later and that baby's butterfly was gone and his curtain was closed, and I hung my head again. this time for the gang member father who was just like me.
Wednesday, October 20, 2010
God and Tomas, part eight
Some days after the first week in January my husband told me that the division he was now working for was having its annual meeting out in CA the following week. Did I think he should go? How was I supposed to answer that? He would be home by the 19th, and the c-section wasn't until the 28th. Well, I'm the go-for-it kind of gal so I said sure, go ahead. He then demanded to know if I was going to have the baby while he was gone. He was serious, he wanted me to tell him when the baby was coming. We went back and forth for a while, and I left it with Murphy's law would reign. If he left I would have the baby, and if he stayed I would not. He finally decided to chance it and left the early morning of the 16th.
The late morning of the 16th I had a regular OB appointment, but was also having those pesky contractions again. She checked me and I was still closed tight but told me to go home and take two of the muscle relaxers the hospital docs had given to me a while back to relax my uterus. If they didn't stop I needed to go to Orlando and get checked out.
I had my girls with me but as we were leaving a friend called to check on me, when I told her what was going on she told me to drop the girls at her house and go home and try to sleep a bit, that she would bring them home later. So I did. I went home took two pills and laid down. That was around 10am. At noon I woke in sharp pain from contractions, but they felt weird, just different. Even though I had two c-sections for the girls I labored with the first so I knew what they should feel like, and these hurt, but in a strange way. So I called another friend. A few words about her, we met when our girls were on the same soccer team. She was and is a pediatric nurse. I remember thinking, "hmmm, she would be a good friend to have". Well, that was 5 years before that phone call and she was a great friend for many, many reasons. She had agreed to be my backup "doula" in case anything happened while my husband was away. Poor girl.
I called her at noon and told her that I felt funny and I thought I should go get checked out in Orlando. She had her daughter with her and was babysitting her nephew as well. She called a friend to see if she could take her daughter to an afternoon activity, and she called her mother to see if she could drive up and watch her nephew until his mom came to pick him up. Well, friend said yes, and mother said yes, so my friend said yes she could take me.
A little while later I was driving to her house. I tried to time it as best I could. Contractions were about 10 minutes apart at that time and she lived 20 minutes away. So I waited until one set was over and then left, hoping to make it there with only one set while driving. Well, I had only one set, but it was on the bridge that took me off the island. I remember being on the stupid bridge and doing those stupid breathing exercises and please, oh, please just let me not fall into the river. Luckily it only lasted about a minute and then it was clear sailing the rest of the way. I got to her house and she was finishing up the last minute instructions with all parties involved, and then we were on our way.
I got to the hospital and got all strapped in and monitored and the trauma doctor came in and checked me, and said everything looked good. Just watch me for a little bit longer, but then I could go home. Phew, close call. I hadn't even called my husband because we had so many incidents like this that it didn't seem worth it. My friend went to get a snack and when she got back I begged her for a cookie. Up until then I couldn't eat anything, but since the doc had just said I could go, she gave me one. Well, we should have known. Really, two grown women couldn't figure out that if you give a pregnant lady a cookie while she is hooked up to fetal monitors at the hospital that even though the doctor just said she could go home, it was never going to happen?
A few minutes after "the cookie" the fetal heart rate monitor began to nosedive during a contraction. Another word about my friend - she was a labor and delivery nurse before she was a pediatric nurse. Did I forget to mention that? Nope, just saved it for the good part. She jumped up from her chair and began flipping me like a pancake from side to side, and mashing my belly to make the baby's heart rate climb. A few minutes later and it happened again, and then she happened again, and then the hospital nurse came in. Not until after two heartrate drops did the staff come in. The nurse put me on oxygen and then said, "The chances of you going home tonight without delivering a baby just went to very slim". Excuse me? I think that was around 8pm or so. Frantic phone calls were made, her husband, my friend who had my girls, and my husband. My friend with my girls was going to bring them over to my neighbors house and they would spend the night there, another neighbor had a key to my house and let them all in to get some things for overnight. Her husband had already picked up their daughter and fed her some atrocious dinner, but they would be fine nonetheless.
My poor, poor husband. Did I not tell him? He called a bunch of places but to get from CA to FL is impossible in less than 6 hours. It takes almost that just for the flight. So I told him to let it go, get on a flight the next morning, as there was no way he would make the birth anyhow, and just get there when he could. Next the nurse came back in and told us the docs were going to do the c-section that night as it was too risky to the baby to go any further. Then she asked me when was the last time I had anything to eat. Well that did it, a highly tense situation degenerated into fits of hysteria over that damned cookie. Here I was, about to deliver a Down syndrome baby with a major birth defect, my husband was clear across the country, the baby's heartrate dropped with every few contractions, and I couldn't stop laughing. I'm sure they taped a sign "Raving Lunatic" outside my door.
We got moved upstairs and waited for an OR room to become available. The nurses came in and out and long enough went by that the cookie was no longer an issue for anesthesia. I got wheeled down to OR and when they opened to doors and brought me in, it was so crowded! There were so many people there! The anesthesiologist, the surgeon and his assistant, the neonatologist, and at least 4 or 5 nurses. That was why the doctors pushed for the amnio - they were ready for Tomas. My friend sat up by my head and comforted me. As the surgical team came closer, she looked over the curtain and said, "Dr. So-and-So?". Turns out she knew him, she was one of his nurses before she left the hospital, and now he was at the women and children's hospital teaching something (I can't remember), they chit chatted a tiny bit (talk about surreal) and then everyone got down to business. But my friend leaned in and whispered that I was in good hands, and that felt nice.
This was it, all those months, and here we were. For so long I had tried to keep him inside. I knew it couldn't stay that way much longer, but he was safe as long as he was in there. Not anymore, with the heartrate drops it was now more dangerous on the inside than it was on the outside. A few tugs and a bit of pressure and at 11pm exactly he was born. No cries at first, and then just some pathetic kitten sounds. The nurses worked on him and my friend went to take pictures. She came back to tell me his legs were bent up with his feet over his shoulders (like any good DS baby!), and that he was very cute. The neonatologist came to tell me that the baby did, in fact, have DS. I remember thinking I didn't know that was still unresolved. He told me he was stable but that they needed to get him to NICU quickly. The doctor brought him over and with genuine warmth placed him by my face for me to kiss him. He was so tiny, but his little small face was just perfect. There I was, loving him on the outside, just as I had prayed for.
The late morning of the 16th I had a regular OB appointment, but was also having those pesky contractions again. She checked me and I was still closed tight but told me to go home and take two of the muscle relaxers the hospital docs had given to me a while back to relax my uterus. If they didn't stop I needed to go to Orlando and get checked out.
I had my girls with me but as we were leaving a friend called to check on me, when I told her what was going on she told me to drop the girls at her house and go home and try to sleep a bit, that she would bring them home later. So I did. I went home took two pills and laid down. That was around 10am. At noon I woke in sharp pain from contractions, but they felt weird, just different. Even though I had two c-sections for the girls I labored with the first so I knew what they should feel like, and these hurt, but in a strange way. So I called another friend. A few words about her, we met when our girls were on the same soccer team. She was and is a pediatric nurse. I remember thinking, "hmmm, she would be a good friend to have". Well, that was 5 years before that phone call and she was a great friend for many, many reasons. She had agreed to be my backup "doula" in case anything happened while my husband was away. Poor girl.
I called her at noon and told her that I felt funny and I thought I should go get checked out in Orlando. She had her daughter with her and was babysitting her nephew as well. She called a friend to see if she could take her daughter to an afternoon activity, and she called her mother to see if she could drive up and watch her nephew until his mom came to pick him up. Well, friend said yes, and mother said yes, so my friend said yes she could take me.
A little while later I was driving to her house. I tried to time it as best I could. Contractions were about 10 minutes apart at that time and she lived 20 minutes away. So I waited until one set was over and then left, hoping to make it there with only one set while driving. Well, I had only one set, but it was on the bridge that took me off the island. I remember being on the stupid bridge and doing those stupid breathing exercises and please, oh, please just let me not fall into the river. Luckily it only lasted about a minute and then it was clear sailing the rest of the way. I got to her house and she was finishing up the last minute instructions with all parties involved, and then we were on our way.
I got to the hospital and got all strapped in and monitored and the trauma doctor came in and checked me, and said everything looked good. Just watch me for a little bit longer, but then I could go home. Phew, close call. I hadn't even called my husband because we had so many incidents like this that it didn't seem worth it. My friend went to get a snack and when she got back I begged her for a cookie. Up until then I couldn't eat anything, but since the doc had just said I could go, she gave me one. Well, we should have known. Really, two grown women couldn't figure out that if you give a pregnant lady a cookie while she is hooked up to fetal monitors at the hospital that even though the doctor just said she could go home, it was never going to happen?
A few minutes after "the cookie" the fetal heart rate monitor began to nosedive during a contraction. Another word about my friend - she was a labor and delivery nurse before she was a pediatric nurse. Did I forget to mention that? Nope, just saved it for the good part. She jumped up from her chair and began flipping me like a pancake from side to side, and mashing my belly to make the baby's heart rate climb. A few minutes later and it happened again, and then she happened again, and then the hospital nurse came in. Not until after two heartrate drops did the staff come in. The nurse put me on oxygen and then said, "The chances of you going home tonight without delivering a baby just went to very slim". Excuse me? I think that was around 8pm or so. Frantic phone calls were made, her husband, my friend who had my girls, and my husband. My friend with my girls was going to bring them over to my neighbors house and they would spend the night there, another neighbor had a key to my house and let them all in to get some things for overnight. Her husband had already picked up their daughter and fed her some atrocious dinner, but they would be fine nonetheless.
My poor, poor husband. Did I not tell him? He called a bunch of places but to get from CA to FL is impossible in less than 6 hours. It takes almost that just for the flight. So I told him to let it go, get on a flight the next morning, as there was no way he would make the birth anyhow, and just get there when he could. Next the nurse came back in and told us the docs were going to do the c-section that night as it was too risky to the baby to go any further. Then she asked me when was the last time I had anything to eat. Well that did it, a highly tense situation degenerated into fits of hysteria over that damned cookie. Here I was, about to deliver a Down syndrome baby with a major birth defect, my husband was clear across the country, the baby's heartrate dropped with every few contractions, and I couldn't stop laughing. I'm sure they taped a sign "Raving Lunatic" outside my door.
We got moved upstairs and waited for an OR room to become available. The nurses came in and out and long enough went by that the cookie was no longer an issue for anesthesia. I got wheeled down to OR and when they opened to doors and brought me in, it was so crowded! There were so many people there! The anesthesiologist, the surgeon and his assistant, the neonatologist, and at least 4 or 5 nurses. That was why the doctors pushed for the amnio - they were ready for Tomas. My friend sat up by my head and comforted me. As the surgical team came closer, she looked over the curtain and said, "Dr. So-and-So?". Turns out she knew him, she was one of his nurses before she left the hospital, and now he was at the women and children's hospital teaching something (I can't remember), they chit chatted a tiny bit (talk about surreal) and then everyone got down to business. But my friend leaned in and whispered that I was in good hands, and that felt nice.
This was it, all those months, and here we were. For so long I had tried to keep him inside. I knew it couldn't stay that way much longer, but he was safe as long as he was in there. Not anymore, with the heartrate drops it was now more dangerous on the inside than it was on the outside. A few tugs and a bit of pressure and at 11pm exactly he was born. No cries at first, and then just some pathetic kitten sounds. The nurses worked on him and my friend went to take pictures. She came back to tell me his legs were bent up with his feet over his shoulders (like any good DS baby!), and that he was very cute. The neonatologist came to tell me that the baby did, in fact, have DS. I remember thinking I didn't know that was still unresolved. He told me he was stable but that they needed to get him to NICU quickly. The doctor brought him over and with genuine warmth placed him by my face for me to kiss him. He was so tiny, but his little small face was just perfect. There I was, loving him on the outside, just as I had prayed for.
Tuesday, October 19, 2010
God and Tomas, part seven
The next few weeks were still pretty rough, but mostly from a medical standpoint. I was at the doctor or hospital (for the NSTs) at least 3 times a week. Most of those visits took me down that winding drive to the bridge across the river. Every time I went a bird or birds flew with me. Never again in a triangle, but always they were with me. I remember knowing at the time who they were from and why they were there and I was so very, very grateful.
At the visits, half of the time someone didn't like what they saw and I had to go on to Orlando (the women and children's hosp - about an hour from home) to have a biophysical profile done on the baby. They would watch him on the ultrasound screen and see how many times he did this or that during an allotted time period. A few times he failed and I had to haul myself back there the next day for a repeat. And so it went, on and on, and over and over.
Life at home had reached a degree of stability, some parts were still a little shaky, like when we would try to imagine just how we were going to do this. We thought once the surgery was over and he was home, the largest part of our trouble would be raising a child with a disability. How naive we were! We also listed the house during this time, adding to everything the stress of keeping it uber-clean, and leaving whenever there was a showing. We made it through Christmas and had a good scare on New Year's Eve, but got sent home after a while. My c-section had been scheduled for Jan. 28th, the feast day of St. Tomas Aquinas, so Tomas would be our little boy's name.
Eventually, we all just came to roll along, and to take one day as it came. One day in early January, I was driving home from my doctor and realized there were no birds with me. None, I could not see any at all anywhere in the sky, much less along with me. I asked God what happened to my birds, I had enjoyed their company and the gift they brought with them. Just then I drove past a clearing in the mangroves and could see the river. It was flat, motionless, like glass. And every bird, quite possibly, on the island was resting on the surface. And I knew! I knew what it meant! I was at peace, I had found my resting place and I did not need the birds anymore. And that is exactly what God told me, and when God talks to you, there is no mistaking it for anything else. He said, "You don't need them anymore."
At the visits, half of the time someone didn't like what they saw and I had to go on to Orlando (the women and children's hosp - about an hour from home) to have a biophysical profile done on the baby. They would watch him on the ultrasound screen and see how many times he did this or that during an allotted time period. A few times he failed and I had to haul myself back there the next day for a repeat. And so it went, on and on, and over and over.
Life at home had reached a degree of stability, some parts were still a little shaky, like when we would try to imagine just how we were going to do this. We thought once the surgery was over and he was home, the largest part of our trouble would be raising a child with a disability. How naive we were! We also listed the house during this time, adding to everything the stress of keeping it uber-clean, and leaving whenever there was a showing. We made it through Christmas and had a good scare on New Year's Eve, but got sent home after a while. My c-section had been scheduled for Jan. 28th, the feast day of St. Tomas Aquinas, so Tomas would be our little boy's name.
Eventually, we all just came to roll along, and to take one day as it came. One day in early January, I was driving home from my doctor and realized there were no birds with me. None, I could not see any at all anywhere in the sky, much less along with me. I asked God what happened to my birds, I had enjoyed their company and the gift they brought with them. Just then I drove past a clearing in the mangroves and could see the river. It was flat, motionless, like glass. And every bird, quite possibly, on the island was resting on the surface. And I knew! I knew what it meant! I was at peace, I had found my resting place and I did not need the birds anymore. And that is exactly what God told me, and when God talks to you, there is no mistaking it for anything else. He said, "You don't need them anymore."
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