Monday, December 27, 2010

Christmas 2010

It actually started on the evening of the 23rd. After her shower Olivia came downstairs and was about to sit down on the floor in my bedroom with Tomas and I, when she gasped and stared at me, "I'm having a heart palpitation!"
Of course she had taken off her event monitor for her shower and forgot to put it back on, so upstairs we both go flying. Mike comes running out of his office thinking something is wrong with the baby. But we managed to get it one her and get 2 good recordings. What a crazy, mixed up blessing. She has been wearing that darned monitor for 5 weeks and could not wait to get it off. She was especially worried about wearing her Christmas dress with it on. So you see it really was a blessing that she had a palpitation.
We sent in her event to the cardiology center at the hospital and the montor has been "resting" in the drawer ever since. I'll take it back next week when Tomas goes in for a checkup.

On the 24th the girls sang in choir at a church pageant and then at mass. It was bittersweet for me. Earlier in the week Tomas saw hematology and immunology and among other things they reinforced that Tomas needs to stay away from crowds and germs. Last year Mike and I had to split up since he was sick, and this year we did the same. I went with the girls for the children's mass, and he went to midnight mass. It was this amazing, joyful, triumphant service, but I was alone (girls were with the choir), and missing my men.
Thankfully that feeling did not last long, and we had a lovely Nochebuena dinner once we were home. The girls started their own tradition a few years ago where they open their gifts to each other on Christmas eve. It is so beautiful to watch this blossom as they become more aware of the joy that comes from gift giving.


 and here is Tomas' gift to all of us!

Christmas morning I actually woke up before the girls. There is a first time for everything. We had a lovely morning filled with wrapping paper, chaos, and a baby who tossed and chased shiny bows across the floor all morning.
Christmas breakfast, Christmas dinner and The Nativity Story for Christmas evening. Really a wonderful day only mildly interspersed with medical stuff, which can wait until tomorrow.
There are a few things brewing and I am hoping I can make it through the rest of the year with no doctor's appts.  In the meantime:  
  video

Monday, December 20, 2010

The King of Glory

I'll update all the medical stuff tomorrow after another appointment, but it is stable.
Now, I met the most amazing woman outside the hospital today. What a spirit lifter! She adopted 2 special needs kids, with the papers being finalized two days AFTER her husband died. Within 2 minutes of  talking to her I could tell she was doing exactly what God had called her to do. She just radiated it. I'm telling you, we were in the parking lot and she just blew me away. At the end of our beautiful talk we hugged like we had known each other for decades. I don't even know her name. I am so very, very grateful for that encounter.
The King of Glory comes
the nation rejoices.
Open the gates before Him,
lift up your voices.

The wait is nearly over, Advent in nearly finished, and here in this house we will be forever grateful for two tiny babies. The One who saved us all, and the other who, in his weakness, has opened my eyes to the majestic strength of the spirit that dwells within us all.

Thursday, December 16, 2010

Making rash decisions

Sorry, couldn't resist the pun.
The rash is back- the interesting, unspecified, unidentified, not-going-away rash. Last week I took him in because it looked pretty bad and a few of the spots were weeping. The pedi said it was definitely NOT viral and gave me a steroid cream to put on it. This week, because the steroid cream was not working and it is spreading, I took him back in. The pedi got the other pedi to come take a look at it, and now it is DEFINITELY viral. So annoying, could someone just find out what it is! Last go round I had an appt. with a pediatric dermatologist but the wait was so long that by the time the appt came up the rash was gone and I cancelled it. Now I could kick myself, but c'est la vie. I will try again.
New developements:
1. His right pulmonary artery is slightly enlarged. This comes from the new pulminologist who finally looked at Tomas' x-rays. The newest x-ray is about 6 months old though so we have a follow up in early Jan with cardiology to check it out and try to avoid that pesky pulmonary hypertension that plagues so many of our DS babies.
2. After both my husband and daughter mentioned that Tomas' pee smelled like maple syrup I finally brought it up to the doctor. I had noticed but didn't realize it was that noticable or that it mattered much. Turns out there is such a thing as maple syrup urine disease. It is a METABOLIC disorder (no surprise there) that comes from the bodies inability to break down certain proteins. I have to wait for the next syrup-smelling pee (it is only intermittent) and then collect and freeze urine. This will be the second time I have frozen pee-pee in the back freezer. Just too weird.
3. One of his abdominal hernias is opening up again. This is brand new, as in I just noticed the ball on his belly last night. It is still small, about 1/2" across, and  I will just monitor it for growth. After the last surgery, Tomas' surgeon told me "the next time I go in I'm using mesh." I thought, "What do you mean next time?". Apparently he knew the fix was only temporary. Hopefully, we have a while before that needs to be addressed, but at least it is something we are pros at dealing with.
4. He has always slept poorly, but the last two weeks he has outdone himself, and caused me to fall down in the garage the other day out of exhaustion and dizzyness. So 2 nights ago, after checking with the pedi, I started giving him melatonin. The first night it did not help at all and on top of it he had a rather long and low central apnea episode that I had to stimulate him for to get his O2 levels back up. Not fun. The pedi said it could be from the melatonin as most of Tomas apnea is obstructive (he has very short central spells every once in a blue moon, but none like that night). So last night I gave it to him one more time to test it, and it went better. He slept like his previously poor-sleeper self, and no central apnea episodes. Which felt like a night at the spa for me. I'll keep using it and see if things continue to improve.

Other than that the regular stuff continues, blood counts low, immune system low, waiting on the metabolic tests to come back.
But you know I need to leave you with a smile (and a kiss):








Friday, December 3, 2010

I shop at Aldi's because...

there is only one kind of whatever it is you need/want. No choices, no decisions. It is this one or nothing. I love it. Here's why:
 Tomas started running a fever the night he got all those vaccinations. This paralyzed me. A while back the pediatrician told me not to give him Motrin/ibuprofen because of his platelet issues. Well, now can I give him Tylenol/acetaminophen due to his liver issues? In the end I went with the Tylenol - how bad can one dose be? But really, does everything have to be this involved?
By morning the fever was back, which opens up a whole other can of worms. It is called neutropenic precautions and fever protocol. I am supposed to call in every fever Tomas has to the CCBD (center for cancer and blood disorders) clinic, and if it is after hours I am supposed to bring him to ER for any sustained fever over 100.4 or any single temp over 101. Well his temp had been 100.5 for about 12 hours at that point but at least it was during office hours. The dilemma was that I was pretty sure it was from the vaccines and didn't feel like having the CCBD tell me he needed to come in for labwork and possible IV antibiotics. So here I sat for most of the morning fighting with myself about the fever. Is it from being sick, or is it from the vaccines, do I call, do I not call. I split the difference and called the pedi, who told me it probably was from the vaccines (whew!) BUT that I needed to call the CCBD anyway (why I didn't see that one coming I'll never know).
I called them around 11, and when I hung up the DME called and wanted to service Tomas' O2 compressor that afternoon. Fine, my husband was out that morning but would be back in the afternoon. I had to leave the house by noon to get to a 1pm GI appt. But it was now 10 mins till noon and no call back from CCBD yet, and Tomas still had a low fever and just looked under the weather. Another dilemma! Do I go, or not go. I really needed to talk to the GI and get things moving and sorted out. This time I decided to cancel since Tomas was tired and just feeling blah. By the time I called though it was 12 and the office was shut for lunch, we are the first appt. afer lunch and there is no way for me to cancel until 1. So I felt bad and decided to go. One problem, my husband wasn't back from his errands yet which meant the girls had to go with me. Called him on the way and told him the compressor guy was coming in the afternoon, met him at Walgreen's (getting flu shot) so I can give him the girls and then they needed to hurry back to the house. CCBD called while I was driving and said to monitor his fever and call if it didn't resolve, and to come in right away if his labs came back with an ANC under 800. He had labs drawn the day before but I didn't have the results yet.
Ok, girls were handed off and I went on to the GI office. The three of them got home just 5 minutes before the oxygen guy showed up, so that all worked out.
I am so glad I went.
He is such a conundrum of a doctor. Absolutely abhorrent at calling back, including calling other doctors back; but, oh so frank and straightforward at the office. I told him that the immunologist thought Tomas' illnesses were due to nutritional deficiencies. He said to simply look at Tomas tells you he is not malnourished. She is saying that because he is on a blended diet and it is an easy thing to blame, as opposed to digging deeper to find the problem. And by saying it is dietary, it kicks the ball back into GI's play and she is off the hook. Even if none of that is true, you've just got to love a doctor who can be that honest. I asked about the calcium results on Tomas' labwork (it has been low the last few draws). The immunologist thought he needed more calcium. I told the GI he was getting tons of calcium. He gets 5 grams per kilo and normal dietary guidelines are under 4. He said it is not from his diet it is because he is leaking antibodies out all over the place, after all his antibodies are only at 50% of normal. He said there is no way that Tomas' diet has anything to do with his health. If he were eating the things he gets through the tube by mouth no one would have anything to say about his diet. On a side note here, if he were only getting formula by mouth at two years old everyone would be up in arms at his diet. I fail to see how the method of delivery changes that, but it does. Very few doctors are supportive of a blended diet, mostly because they think parents can't get it right - but take a look at how your average oral-eating toddler eats - I don't see many docs ordering parents of those kids to ONLY give them Pediasure, as it is nutritionally balanced. But I digress...
Anyway, diet not an issue. Great, neither I nor the pedi thought so, now what? Turns out there is a new blood serum test to check for the disorder we all think Tomas has. The Mayo clinic in Rochester, NY runs it and I can just have him drawn here at my local lab. Awesome!!! It has a high false negative, so if it comes back as a no Tomas will still have to have the liver biopsy, but if it comes back positive, then we are done and do not have to go piercing organs (doctor's words). The GI said to leave him on J feeds for now, even though we are not sure if that is complicating getting a diagnosis. Honestly, no one knows how much Tomas having been on continuous feeds for most of his life is masking whatever is going on. We do know that for many varied reasons every time we try to bolus feed him we end up back on J feeds. He said that switching to G feeds, even continuous, would be too dangerous right now. The stomach doesn't empty constantly, even with normal motility, it fills and then dumps, rests and dumps, etc... We have no way of knowing if Tomas' hypoglycemia is from the stomach dumping and his body producing too much insulin, or if it is from his bodies inability to pull sugar stores from the liver during the times the stomach is not emptying. So crazy.
One other thing we discussed was the bloody discharge from Tomas' stomach and bloody seepage from around his stoma. The GI said it is probably granulation tissue in the stoma path and the only way to fix it is to remove the tube, cauterize the tissue, and replace the tube. I asked if we really needed to do that and he said, "Nope, we have much bigger monsters to chase, especially since he is not anemic." Unfortunately that was before I got the results of the previous day's labwork. Turns out Tomas is anemic and his hemaglobin is lower than it has been in the last 14 months. I'm not sure if I want to pursue it though. He is only slightly anemic and the whole removing the tube, replacing the tube thing is really traumatic for him. Luckily, he gets labs done often enough that I can keep and eye on it and pursue if necessary. And to finish off a very informative day his ANC was 1200!!! Woohoo - no add on trip to CCBD!!! His fever is still off and on, but the pedi said the vaccines could cause a low fever for up to a week, and with an ANC of 1200 I do not have to worry about him going septic in a matter of hours. What a relief.



Part of the beauty of this blog is it allows me a "mental unload". Typing it all out gets it out of my head and helps me put an order to all the information I get thrown at me. Before I find the time to sit and type all this stuff out my brain just sort of bounces all over the place. But seeing it here, and reading it in some sort of (I hope) cohesive manner helps so much. Thanks everyone for listening, and thanks even more if you can have the time to comment. I know how hard it can be to keep up with all our blogging families, so a very simple and heartfelt thankyou.

Wednesday, December 1, 2010

In a funk

I can't believe it has been two weeks since I posted. Now it seems so long I can't imagine how I'll catch up, but I was just needing a break, and in a rather great funk, mostly thanks to one doctor.
Two weeks ago Tomas was at his hematology follow up and that doctor wanted to go ahead and start the IvIg treatments to boost Tomas' immune system. She went through everything involved with me and just wanted to check with the immunologist to see if there was anything she wanted done before we started.
A few days later I get a call from the pediatrician who told me that the immunologist called and wanted Tomas to get certain vaccines and the flu booster, but that she DID NOT think the IvIg was necessary, since he never had a case of pneumonia.
This left me in such an awkward place. I have worked so hard to keep him from getting pneumonia. Breathing treatments every 3 hours, including through the night, rushed visits to doctors and ER's; antibiotics after antibiotics, oral steroids when the inhaled weren't cutting it, and now to find out, if I had let it go a few times and fester into pneumonia we could be getting some help for his immune system this winter. I have not met with the hematologist again so I don't know if her plan is to still go forward, but I fear that the immunologist's opinion carries a lot of weight.
Tomas is sick again, he got sick right before Thanksgiving and is just not getting better. Before the immunology comments I would have had Tomas at the doctor on Friday morning, but since I felt like being aggressive in his short term care was actually being detrimental to his LONG TERM care I waited. He just had his typical stuff through the weekend and early part of this week. Barking cough, cruddy nose, yellow goop from the G tube, and increased d-sats at night.
This morning though he started pulling in on his left side, and something snapped inside me. What the hell am I doing? I'm waiting for my kid to get really sick before I go and do something about it? It's like those (otherwise healthy) kids you read about that die from the flu. Fever of 104 for days and parents were just waiting to see if the kid got better, and you think, why did they wait so long? That was me, I was letting this doctor get to me so much that it was compromising my son's health. Ugh...So I snapped out of it and took him to the doctor. He has a sinus infection, the croup, and needs an x-ray to see if he has pneumonia (the doctor doesn't think so - but something is causing the increased labor in breathing - he said there was some extra tissue or something after one of the surgeries and maybe that was inflamed by the infection - not quite clear on that one yet). The doctor did say this was the second time he had the croup in about 5 weeks - could you pass that on to the immunologist please?
He was able to get the vaccines that the immunologist wanted, she will check his titers in mid-December to see how well his immune system reacts to the vaccine. Those 5 shots combined with a finger prick, a toe prick, a heal prick, and a blood draw added up to 9 sticks for him today and he was not happy about any of them!
Also gumming up the works around here are those pesky liver enzymes. They were very elevated, moderately elevated, normal, mildly elevated and now back to moderately elevated. The liver MRI came back normal, which is great in that there is no visible liver damage but not great in that it leads us nowhere. The liver biopsy, was on, then off, then on, then off, and after a call from GI yesterday asking to bring Tomas in, it is back on again; that appointment is tomorrow. His liver enzymes with today's draw were higher than the last draw so they are trending back up again. Add to that dehydration on the last two lab draws (even though he gets plenty of fluids) and low protein levels (even though he gets plenty of protein) and you have a big bag of who-the-hell-knows.
That also means he will need a specialized platelet test that can only be done in Dallas before he can have the biopsy done. I was in Dallas yesterday for Olivia and could have had it done then, but the GI called yesterday while we were away. So one more trip back to the Big-D. And why, you may ask, was I in Dallas Children's for Olivia? Because she needs to have a cardiac ablation.
She has had heart palpitations on and off all her life (she's 10). About a month ago she had one that was pretty severe and lasted almost 40 minutes and would not resolve with any vagal maneuvers that she had been taught. Her heart was racing over 230bpm for most of that time (thank you Tomas' pulse ox). Mike and I were about to call EMS when it resolved. After a visit to the pediatrician and a pediatric cardiologist, we were referred to a pediatric electrophysiologist. Never heard of such a thing? Me neither. She is a specialized cardiologist who deals with the electrical impulses of the heart. Cute huh? Anyhow, the running theory is Olivia has SVT (supra ventricular tachycardia). She is on a halter monitor until we get an episode recorded and then it is off to the cath lab for her.  For a variety of reasons medication is not an option for Olivia, and the doctor's are all saying that the procedure is very safe. She will have to stay the night, because we live far from the Dallas hospital, just for monitoring. That makes me feel better anyway, I'd rather her be monitored that first night. I suppose if the starts align themselves properly we can have Tomas' biopsy and Olivia's ablation at the same time - a two for one night at the hospital. Stranger things have happened I'm sure.
It hasn't all been medical here though, we have managed to live a little. We are becomming regulars at a local motorcross park, and are getting pretty good at setting up a day camp. Overnight camp is definately in our future, we just need to work out the oxygen, charging the pump, and wait for it to not be 25 degrees at night before we give it a go.
So that is what I'll leave you with, some great pictures of a great day with a great family, who has a great God to keep them going when things aren't so great:








Wednesday, November 17, 2010

Well, that was fun (NOT).

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.

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!


He has a swallow study tomorrow morning. I'm not looking forward to it. But the new pulm doctor wants new data. His last study was  Sept. '09. Wish us luck!

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"

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!

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:

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!

Monday, November 1, 2010

Frog Scooting

video
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.

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.

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."

Sunday, October 17, 2010

God and Tomas, part six

The next morning another girlfriend came to pick up the girls to take them on a field trip. I had a doctors appt. that morning. Actually, at that point I had a doctor's appt. every Friday and non-stress tests twice a week.
We stood on my front lawn and I told her I could see the hand of God in the life of the baby, but I had no idea what He had in store for my marriage. I told her I was sure my husband would get there. He is a good man, and a faithful man, and I knew he would come around, but it was that time in between that would be very painful. I thought it would take a while, perhaps as long as waiting until the baby was born and my husband could see, and hold, touch him. She told me to let God handle it, and to let it be what it would be. They drove off, and I left a few minutes later for the doctor.
I was crying as I drove. Not sobbing, but a this-is-going-to-be-hard-Lord-because-I-really-love-that-man cry. The road led south down through a narrow part of the island and after about six miles curved onto the bridge that brought you to the mainland. My car had a sunroof, and about 1 mile into the drive I noticed three birds flying overhead. In a triangle. They stayed the entire time, right up until I turned onto the bridge. I had been shored up, and carried on eagle's wings.
The next day my husband took our daughters and our two dogs to his parents house. The dogs were going to stay out on their property while we listed our house and had the baby. Too much to take care of all at once, and his parents had graciously let us leave the dogs on their farm until we were ready for them. The girls were going for a visit, and the three of them were coming back the next day. I was too far along and still having contractions all the time, so no travel for me. He kissed me goodbye, and it was cold and we both knew it. I watched them leave. And I wondered, how long before he comes back to me, and I didn't mean in a corporeal sense.
Late the next evening they all came home. We tucked the girls in and went to another part of the house. And there he was, full of all the right words, and all the right hopes, and all the right determination.  My marriage had been torn down and rebuilt in three days.  "Tear down this temple and I will rebuild it in three days."
It is a different marriage now. It was always a good one, but quite simply, this one can not be severed. We walk with confidence now through this journey, that no matter what, we will have each other. And as for Tomas, the most tender part of my husband's heart is reserved for him.

Saturday, October 16, 2010

God and Tomas, part five

The call came from the geneticist on a Thursday afternoon while I was folding socks. She got right to the point and told me the amnio was positive. She asked if I was going to be ok, I told her I would be fine. She agreed with me, we had met before and she knew I meant it.  I would be fine.
 My husband was a different story. I have debated so much about whether to type this all out, but finally I decided that if I was going to tell the story of my son, than this was part of it.
That afternoon I was a wreck, because I had to tell him, and I knew he would grieve, and I knew it was all because of me wanting a third child. The guilt was incredible, so very, very heavy. I loved the baby and would not turn back the clock for anything, despite what was coming our way. I wanted this baby, not any other one, this little one that needed me more than any previous child. But I also love my husband dearly, and the thought of the pain I was causing him tore my soul in two. You see? I had chosen. My loyalty lay with my son, and I would not betray him, even to commiserate with my husband. I could not feel what he would feel and the thought of us being so very far apart on this devastated me.
I called a friend in tears, because I just dreaded telling him. And God was with me again. She told me the most amazing thing, she told me all the fear and apprehension I was feeling was from the devil, and I was letting him win. She told me God would continue to work wonders on our family and to keep my trust in Him. This was not a friend with whom I ever really discussed religion, not for any particular reason, it just wasn't part of our relationship. For her to snap me back to place like that was nothing short of the Holy Spirit working through her. I hung up, composed and ready to face what was coming.
My husband came home from a business trip that evening, and during our welcome home hug, I whispered "the baby does have DS". His shoulders collapsed in my arms, he stayed there a few seconds longer and then walked away. I went to make dinner, having chosen my path, and only prayed he would soon choose to walk it with me. That night was awful. He raged and he grieved, and I sat there. Completely in love with the little one inside me and therefor unable to share in anything he was going through. I felt our marriage bonds fraying, felt the ties that bind falling away. And I could do nothing to grab them and hold them tight, because I had chosen. I was on the other side, and I could only watch, and wait, and pray.

Friday, October 15, 2010

God and Tomas, part four

Another month rolled by as Thanksgiving approached. Much of my husband's family and us were renting condos up in Williamsburg for the holiday. I went to the maternal fetal doctor for my monthly check up and he went back and forth on whether to let me go. Finally, he decided the driving wouldn't be an issue but I wasn't allowed to do much walking. The extra fluid put me at risk for early delivery. Believe me, walking was the last thing I wanted to do. I was huge, and I mean huge. We decided it was time to tell the family about the birth defect and the DS risk, since I would be mostly hanging out at the condo while everyone else was sightseeing. About a week before we left we told everyone. There was much lamentation and crying on their part, mostly about the DS, which some of them saw as a lifelong burden we would bear. I just tried to be patient and let them come around. Also. we decided to tell the girls, even though we did not know for sure if the baby had DS. But we thought they should know he might, and also we needed to tell them about the surgery. We had met with the surgeon and he told us to expect a 4-6 week NICU stay, possibly longer if the baby did have DS.
So I sat on the sofa one day, with my then eight and six year olds, and tried to explain the surgery and what Down syndrome was and how it would change what the baby would look like, and how it might make things harder for him to learn and do. They took it all in, and then the eight year old asked, "Mommy, just one thing - is he going to want to play hide and go seek?" That's it, all boiled down, without any grown up baggage - will he find joy in being alive. Will simply being be enough to thrill him? Yes, Virginia, there is a Santa Claus.
We went to Williamsburg and had a great time. It was freezing, even for them, that November. I sat on benches and in visitor centers and we all still had a great time. Occaisonally, I would walk around a little with them, and once I even stayed behind at the condo and let all the rest go have fun without me. That was my initiation into the frustrating labrynth of medical care and insurance. The surgeon did not take our insurance and I was in a scramble to find one who did and had rights at the children's hospital, otherwise I would be at one hospital recovering from a c-section (2 previous - so no choice there) and the baby would be at another recovering from the surgery. I spent about 6 hours that day on the sofa and on the phone and in the end did find a surgeon who could operate at the women and children's hospital.
Shortly after arriving home, I began having contractions. Real ones, painful ones. I was only 30 weeks pregnant. I went to the doctor who sent me to the hospital who monitored me and stopped the contractions. This was the beginning of a very repetative pattern over the next few weeks. All the doctors wanted me to get to 36 weeks, and they also began to lobby very hard for an amnio. They wanted to know what they were dealing with and how to best prepare. So a few weeks later I went in. I had never had one before and a dear friend went with me (husband traveling again) to hold my hand. Funny thing is God had prepped me for it and I didn't even know it. And boy, oh boy, are God's ways not our ways:
Before we left for Virginia, I went in for an endocrinology check up for my thyroid. I had a goiter and a hyperactive thyroid in my twenties, had a radiation treatment for it, and had been hypothyroid ever since. During my pregnancies the doctor monitors closely to make sure my levels were normal for the sake of the development of the baby. At this check up she felt another goiter and sent me for an ultrasound. It came back much larger than expected and she then wanted to biopsy it to make sure it wasn't thyroid cancer. If it was I would need surgery, but it could wait until after the baby was born she re-assured me (hah - didn't work). Two weeks before the amnio I went to the endo's office for the biopsy. A needle the length of a baseball bat lay on the table (ok - I exaggerate - but you get the picture). Pregnant lady, so nothing for calming of the nerves, just lay on the table please. Anyone tried to lay flat on their back and not move while you are 7 months pregnant? Somehow I made it through (mostly by counting the little black spots on the acoustic tile of the ceiling). When she was done she sad she couldn't get a good sample and wanted me to go to the hospital to have an ultrasound guided biopsy done. What? I have to do this again? A week later and there I was, on a different table, with a different doctor, just a topical , counting those same stupid spots. Let me tell you, a ginormous needle to the neck hurts - a lot. Flash forward to the amnio and it was a breeze!!!
Biopsy came back negative, amnio came back positive. God works in mysterious ways.

Thursday, October 14, 2010

God and Tomas, part three

Another month went by and it was time to go check if the double bubble was still there. The baby came into view on the screen and even I could see the two black spaces in the abdomen. So here we were, 6 months into it and it was a done deal. Surgery would be necessary. The doctor now switched gears and pushed for me to get an amnio to find out if the baby had DS. I didn't see the need as I didn't see how it would make a difference, and I didn't want to take any risks with an already compromised fetus. He went on to caution me about heart defects associated with DS and the Duodenal Atresia, and tell me that since the baby could not swallow amniotic fluid I would have too much, and be as large as someone carrying twins. He wanted Non-Stress tests every two weeks with increasing frequency as the pregnancy wore on. I saw a doctor (either him or the ob/gyn) every two weeks.
This was in October and as of yet we had not told any family about what was going on. . My bible study had ended in mid-September but the author of the books was holding a conference about an hour away from where we all lived. Most of the members of the group signed up to go and many of us were going to carpool. Also during this time my husband and I listed our house for sale so the job relocation could push forward. A quirky but fun Catholic tradition is to bury a statue of St. Joseph in your yard to help with a quick sale, and I was sorely tempted, but never got around to it. In the evenings after the kids were in bed I researched about the surgery, and also looked up the saints for expectant mothers. St. Joseph was one. I told my husband that maybe we were supposed to name this baby Joseph!
A few days before the conference a friend called to ask if I still felt up to it, and if I still wanted to go. I told her I did, that I felt a particular calling to be there. We drove over and got settled in the church. Well, as settled as a 6 month-extra-fluid carrying pregnant woman get get settled in a tiny church pew. The speaker got up and began a talk about the sanctity of the womb, and how every sperm and every egg were chosen specifically to bear fruit in the creation of that individual baby. That each conception was planned precisely by God, and that even though we may feel our pregnancies are a mistake, God knows better. Every one of my friends turned and smiled at me, and I was very grateful to God for clearly calling me to this place for this event. But it gets better.
Following the main speaker, a priest, who often helps her on her videos and at the live events, came out to talk. He walked on the stage and told all of us to take notice of the statue he was standing next to. It was St. Joseph! (As a side bar - at this point I was convinced the baby should be named Joseph - so if he was it is not on my head!). He talked about families and the men who protect them, then he went on to tell us about his younger brother. He was born 40 years ago with Down syndrome, and how his father would not leave him in an institution, and how his parents brought him home against the recommendations of the medical community and well meaning friends. When his brother was five years old he turned blue and stopped breathing. His mother drove to the hospital and his father did CPR in the backseat the whole way there. He died that day in the arms of his parents. The priest's sister was now expecting her fifth child and it was highly suspected that the baby had DS. His parents were overjoyed at the prospects of having another DS person in their lives, even though the loss of their son hung as heavy on their hearts as it did 35 years ago. Five years of wonderful, followed by a lifetime of heartache, and they would do it all again. Not only that, but they would have their daughter go through it; five short years and then devastation vs. never knowing the love of a DS child.
I was frozen. Really, how is it that God could care so much about me to send me these messages. How many other women in that room were pregnant? Maybe 4 others. How many with a now 1:2 chance of having a baby with DS? And how many NEEDED to hear that fathers love their children no matter what? Just one. Yet again God was leading me through the fog, guiding me to the peace that comes from resting and trusting in Him.

Wednesday, October 13, 2010

God and Tomas, part two

One month later I went for a follow up ultrasound with the maternal fetal doctor. We knew if the echogenic foci was still there, our chances of a DS baby would stay the same 1:4. I can't remember why, but I did not have the girls with me that afternoon. Looking back it was definitely a God thing, as I almost always have the girls with me. But I laid on the table and was ready for whatever was coming. Or so I thought. The foci was still there, and I was ok with it. It would be what it was and this baby would be who he would be. But then the tech went and got the doctor and the doctor took a looooong time looking at something on the screen. He then stopped, sighed, and turned to me. I remember the sigh vividly, it made every muscle in my body tense and ache.
He told me that he was fairly sure the baby had duodenal atresia. Both such foreign words to me I had to make him write them down. Because of a "double bubble" marker on the ultrasound screen he was pretty certain that was the case. It meant the baby's stomach had not attached to his intestines and he would need life saving surgery within days after birth. At that moment the words "down" and "syndrome" flew out the window. They were so large 15 minutes beforehand, and then they were just gone. My baby was broken. He could not eat, therefore, he could not live. I did not at that time know anything about TPN (nutrition through an IV) and no one told me anything about it until months later. All I knew then was that if he didn't have surgery he would die. My love for him expanded exponentially and wrapped itself around his developing body. Only one thing pounded in my brain. I wanted this baby to live. I didn't care what he had or what he was or what he looked like, only that he live and I get to love him outside like I loved him while he was inside. The doctor went on to tell me that there was a small chance what he was seeing onscreen was just something to do with the bowel development, but that he would check again in a month. To his credit he never asked me "the question". I left, picked up the girls and went home.
My husband was away on business and I went back and forth so many times during the day about whether to tell him or not. Finally, I decided to wait until he got home and not worry him while he was at his meeting. That all fell to pieces the moment he called home that night and I heard his voice say "Hi, honey". I just started sobbing hysterically, poor guy, he had to ask me yes or no questions I was crying so hard I couldn't talk. He must have had a good few minutes of complete panic before he found out what was going on.
Him -  "Is something wrong?"
Me  - affirmative sobbing grunt
Him - "Is it one of the kids?"
Me  - affirmative sobbing grunt
Him - "Olivia"
Me - negative sobbing grunt
Him - "Victoria?"
Me - negative sobbing grunt
At this point he paused a little bit and then said "The baby?" in a voice so filled with pain I knew he loved him already too.
I moaned my positive and then did my best to compose myself and get the news out. As much as he can drive me crazy, and he has some serious OCD issues let me tell you, at times like these that man is my rock. He talked me back to calm and stayed with me on the phone until I was ok for the night. And that was it. Our paradigm had shifted. Even a diagnosis of DS would still mean a healthy baby. But not anymore, with or without DS our baby would not be born healthy, and we were heartbroken.

God and Tomas, part one

Since I had gestational diabetes with my first two pregnancies I knew the level of care would be high during this one as well. I made the rounds with my OB and endocrinologist and got an appointment for a maternal fetal during the 4th month of the pregnancy. When I last saw my OB it was for a gyn visit and I left with a script for a mammogram and literature on osteoporosis, here I was 8 months later and pregnant! A friend of mine had also just had a baby at 36 years old and said it was the weirdest thing going through it all again on the other side of 35. She said the doctors may have well taken a giant red stamp marked "geriatric" to her folder!
Another friend, who was 38, had also just found out she was pregnant about two months before I did. She was hosting a bible study I was attending. We were thrilled to have someone to go through it with, and the other women in the bible study were so supportive. My friend paved the way for me, and impressed several key points on me along the way. When it was time for her quad screen she only agreed with the understanding that the doctors were NOT to discuss terminating the pregnancy based on the results. Sure enough her levels came back high. I remember writing her an email to reassure her, and I told her that her family would not only survive but find a way to prosper no matter whom God was knitting together for them. This was all while I was in my first trimester and had no inkling of what was to come.  Her son is a perfectly healthy two year old now, and the delight of their family.
My fourth month rolled around and it was time for the maternal fetal. I was so excitied because we could find out the sex of the baby. The day before the appointment Tropical Storm Fay blew into town. It started raining and never stopped for 78 hours. We had 52" of rain by the time it was over. Midway into the deluge I had to make a decision about whether to keep the appt. or not. The bridges to my island town were still open so I chanced it and went over to the mainland. I had to find out what I was having! My girls were with me and as the tech was getting started she asked them what they would prefer. They had talked about it beforehand of course and the running favorite was a boy, since they both already had a sister. Pretty logical right? Part way through the ultrasound the tech told us it looked like the girls were going to get their wish. Joy swept through me and I could not wait to tell my husband.  Somewhere in that visit, the doctor came in and talked about echogenic foci on the heart and combined with the increase in my quad screen results meant a 1:4 chance of a baby with Down Syndrome.
We got into the car (soaking wet from the tropical storm raging outside, of course!) and called my husband and told him the great news. I did tell him about the increase in the risk of DS but we both still liked the odds and really didn't think more of it. Well, later I did.
I always fell in love with my babies from the pink line. I knicknamed them before we knew the sex, and I loved everything about being pregnant. So, 4 months into it, I was deeply connected to the little bibble (Victoria picked his nickname) growing in there. When I thought about having a baby with DS, I had a vague idea that it would be harder to raise a child with a diability, but mostly I worried about what my husband would be like, and how he would handle it. One night in bed I saw the Blessed Mother. It was between sleep and wakefulness and most definitely not a dream. It wasn't really what I would expect a vision to be like either so I don't know what it was. But she stood there and I stood there, both in a white emptiness all around us, she above me as if on a platform. We were facing each other and she bent down and placed a bundled, blanketed baby in my arms. This baby, my son. That was the beginning of me looking for the hand of God in the life of Tomas. If you read closely you can see Him working beforehand, but I was oblivious up until that point.

Tuesday, October 12, 2010

God and Tomas, prologue

I wanted two children. My husband wanted two children. A match made in heaven for this and many other reasons. We would send them to Catholic school, and live according to our faith. That is a very brief synopsis of the first 13 years of my marriage.
We were married almost six years before my oldest was born. Three years later her sister was born. Two beautiful, healthy, perfect girls, and we were happy and finished. A two year kidney illness on my part and a 3 year horrific toddlerhood on the younger one's part and that decision was just further cemented. Preschool came and went for the oldest, and although it was at a Catholic school, it was not what I was looking for.
My husband and I decided to try homeschooling. Actually, I decided, and bullied him until he finally agreed to let me test Kindergarten - figuring I couldn't screw it up too bad and we could always just stick her back in if I did.  I joined a Catholic homeschooling group and found a very happy place indeed. This was definitely our groove and where we were all supposed to be. I thanked God often for the richness of this life, and contentment reigned.
In hanging with the Catholic homeschooling community, I began to hear a lot about NFP (Natural Family Planning) and fertility charting. I just figured it wasn't for me and shoved it aside. I always knew the Catholic church disapproved of artificial birth control, but just went on my merry way anyhow, never reconciling the two, but not worried that I couldn't. Several years went by and then Catholic radio came to town.
For the first time, I began to understand WHY the church doesn't allow contraception. I read Humanae Vitae and knew that I had to change. I tortured my poor husband, who was perfectly happy with the way things were, thank you very much. Finally, he told me to bring home some literature so he could read it. I knew then we would change. He read some things, and listened to some programs, and we were set free to really test the waters of our faith.
We were still not planning on having any more kids, we just needed to stay not pregnant in a way that didn't offend our faith. Well, a few months into the charting and I was pregnant (I confess poor record keeping on my part - I did not learn enough in those early months and never took a class). Two weeks later and I miscarried. Neither of us was thrilled initially about the pregnancy, but I wrapped my heart around the little pink line pretty fast, while my husband was not there yet. But the miscarriage devastated me, and he shared my pain, for my sake.
A few months went by and I told him I wanted to have another child. He wasn't ready, and I waited. Sometimes patiently, sometimes not. Another year or so went by and he said he would be ready in August. I still laugh when I think about this, such an arbitrary thing, but it gave him a sense of control, and I was over the moon happy to have him on board - so August it would be.
I found out I was pregnant in May of that year.
I need to back up a bit, in April my husband got a job offer for a transfer to another division, which also meant a relocation. We went back and forth for a while, and spent the better part of the next few weeks making the decision. One weekend in May we went over all the financial aspects, made the pro/con lists, etc...In the end he decided to accept and signed the papers on a Monday morning. I tested positive on Tuesday.
And that is where the story really begins. Me, with 8 months left of my pregnancy; him, with 1 year left to relocate to his new job; and both of us inching our way deeper into the faith of our childhoods.

Catching up is hard to do!

14 days of laundry from 5 people! 'Nuff said.
Will be back with more, but I am loving all the DS awareness posts.

Wednesday, September 29, 2010

We're heading out!

Got the last call yesterday afternoon, everyone has cleared him. I am in a packing frenzy and trying to scramble for oxygen when we get to FL because the DME company messed up.
Wish me luck, and wish the germs to stay far away from bubble boy!

Monday, September 27, 2010

Monday, Monday

Today was Tomas' BIG immunology appt. We waited 3 months for it. The doctor took a lot of time going over his history and ordered a tremendous amount of labwork. So I was satisfied as far as that goes.

But here's the thing that irked me. When she first came in she told me she had a lot of DS kids and that there were any number of immunology disorders that can go along with Downs. Ok, great - she has experience with DS kids. Then later during her exam she asked me if he was walking yet. No. How about crawling? No. Average age for DS kids to walk is 24 months. Tomas is 20 months old and has major medical issues along with the DS.

Next question - What does he say?
Say, what do you mean say?
What words does he say?

None - are you kidding me? - Ok, define a LOT of DS kids because you are acting like this is the first one you've examined.

That part unnerved me a bit, but as long as she has her specialty nailed I'm ok with it. Next up the lab work. He needs another 22 mls today, after 23 were drawn on Thursday. That makes 1 1/2 oz of blood in 5 days. I was just waiting for the doc to tell me he's anemic. Well, duh!

Afternoon brings the call form pedi to go over some of the labs. His liver enzymes are still elevated but 2 are slightly better then the other day, one is worse. Also his ANC has dropped again way down to 690.

My family is supposed to go on vacation in 3 days. We were waiting for the liver labs before I knew for sure whether Tomas and I could go. Those came back decent enough, but now pedi wants me to call hem/onc to get the ok from her since his ANC is down.

Also, now pedi doesn't think MRI is necessary, wants to go straight to the biopsy. I am waiting on GI to call to see what he says. Everything is in a very confused state right now.

The rest of the immunology panel should take 1-2 weeks to come back. I did find out that his immune system is much more compromised than I had thought. His IgM and IgG antibodies are low, which I knew, but his Igm are only at 50% of what they should be. IgM are the initial fighter cells in the body, IgG are disease specific. So between the low ANC and very low IgM it is no wonder he is sick all the time.

Friday, September 24, 2010

LFTs

More medical terms are worming their way into my house. They are very good at this, they usually hitchhike though the back door with me on coming home from a doctor's appointment. Sometime, as was the case yesterday, they sneak in over the telephone wires.
The pediatrician called in the afternoon to go over the labs with me. Tomas' CBC was normal. His ANC was a stellar 2300.  That makes two great CBCs in a row, which is wonderful. Next came a pause from the pedi, then, "We need to discuss his LFTs."
Well, ok, but what is an LFT? Liver function tests. CBC is normal, ANC is normal, LFTs are not. Someone please make this alphabet scramble STOP!
Up until yesterday the docs were only checking 2 of the 4 LFTs and they are the ones that had quadrupled on Wed. Yesterday, one of the two went slightly down, but is still roughly 5 times what it should be, and the second climbed even higher than before, now 8 times the normal level. This time they checked a third, one that measures bile duct damage, and it was much higher than it should be.
I asked if this could be residual damage from the gallbladder surgery, but he said we were too far out from the surgery and that the 3rd test in particular is one of those labs that should just NOT be elevated. That makes it crystal clear that something is wrong with his liver.
After consulting with hem/onc the docs now want an MRI before the biopsy. When Tomas was in NICU those docs attempted a liver biopsy but were unable to get the needle in due to the excessive amount of blood vessels around the liver. This time around they want to make sure there is even a possibility of getting the needle in, and an MRI might show some of the bile duct damage they are looking for. I thought the precaution was unnecessary, since it meant going under general twice - once for the MRI and again for the biopsy, and especially because Tomas had no trouble with the bone marrow biopsy (unless you count the atropene and bagging, but that would happen no matter what procedure they'd have done and is exactly why I want to avoid as much anesthesia as possible).
But the hematologist told me this is different from the bone marrow biopsy in that the risk for bleeding is significantly higher with an organ biopsy, and she wold feel much more comfortable with the MRI first. So be it. Next up, an MRI, followed closely by the biopsy. 
Also, during the hem/onc aptt., she told me that she still feels like there is something going on with his immune system that is separate from the liver issue. She said, "As much as I hate to give him more than one diagnosis ..." Ugh...really? I am running out of brain cells people!
Because of all the anesthesia issues any procedure will need to be at the main children's hospital campus in Dallas, so just waiting on scheduling at this point.
As a lovely distraction, my brother in law is visiting this weekend from Utah. He hasn't seen Tomas yet, and the girls are so excited. We should have a wonderful time.