Well, Tomas saw the pulmonolgist yesterday. She was very thorough and we spent almost 2 1/2 hours at her office. Olivia and Victoria were so good. He has two main issues going on.



The first is from all his aspirating and refluxing and hypotonia and malacia. He has very low tone in his airway and it was swollen and damaged from the aspirating and refluxing. That is the big reason for the atelectasis and why he retracts when he breathes. The good news in all of that is that the damage should heal and as his tone improves and the malacia goes away his breathing should become normal. This can take a few years though and in the meantime the doctor says that in order to prevent any further damage or any chance of him being left with chronic lung disease from untreated atelectasis (which can progress into more harmful conditions) she wants to be aggressive in treating him. So he is on breathing treatments 4 times a day with a mix of 3 different meds. I need to do CPT (back patting) after every treatment and I also need to suction out the back of his throat at least once a day. Home health is coming tomorrow to deliver a nebulizer and a yonquer (nose sucker). 2 more pieces of medical equipment for TICU! I have to find out if they have something smaller than a pediatric mask because as you can see this one is way to big on him. It is either up around his eyeballs or he is trying to chew on the sides. Anyhow, all of that should reduce the swelling in his airway and ease things up for him a bit. It will be so nice not to have to see him work so hard.


The second is the sleeping issue. His doctor is ordering the sleep study, until then he remains on the oxygen at night and she'll adjust as necessary afterwards. I really hope the sleep place can get him in soon. It is exhausting hearing those monitors all night long. Once he has a proper diagnosis and his doctor can adjust his treatment he should not desat (lose oxygen) so often, and the night should get a whole lot quieter.

He has been taken off of any oral feeds until he gets a swallow test done. He was doing great with the bananas but after a few days he started sounding wet. So I actually had stopped feeding him two days before he saw the doctor. She said the last thing we want to do is feed him at the expense of his lungs. Couldn't agree more. My mommy sense is telling me he is still aspirating, but we will find out for sure during the study. If that is the case, between the aspiration and the pending hernia surgery (sometime in the next year or so) it could be 1-2 years before he can take oral feeds. It is ironic to me that 4 months ago my biggest priority was getting him back on oral feeds, and now it is such a non-issue.

Now I deal with stuff like the pulmonologist saying to me as she's leaving "Oh, by the way how often do they check his platelets? Don't pat on him too hard just in case." Yeah, ok - way to strike fear into the heart of a mom! IF his platelets are low and IF I pat too hard I can cause internal bleeding - no pressure.

Early Intervention was out at the house today and I enrolled Tomas for physical therapy, speech therapy, and nutritional services. They come out to the house so it is very nice. His PT today told me that the average Down Syndrome child walks at around 22 months, but based on her assessment she thinks it will take Tomas longer. I am not surprised because he has rubber chicken legs. She was very re-assuring though. Down's kids DO walk, DO run, DO jump, play sports, etc... It just takes longer. I know he'll do it when he can, but I am using this professional opinion to help me justify the cost of a new stroller to Mike. "But honey, just think of how long he'll be in it. And remember that even when he does walk he's going to tire easy!" I think I'm in.

We went in the pool the other day and he liked exploring the water. I think we had more fun watching him though. His favorite thing to do is grab that monkey off of his toy bar. The other day he turned a page on a board book and at first we thought it was an accident. But the next day he did it again and again. The girls cheered and shouted like he had just won a gold medal. It was so uplifting to see them take such pleasure in his accomplishments.

Despite all the medical issues, or perhaps because of them, my cup overfloweth.

God bless,

Dorothy

7/24/09

It is finally the end of a very long week. Tomas went in for his ear tube placement on Monday. His other specialists took advantage of him already being under so he also had an endoscopy (stomach scope), bronchoscopy (throat scope), and a heart echo. He was kept overnight because he had such a terrible time coming out of the IV sedation after the last procedure (CT scan). He actually did wonderful with the general anesthesia, but as it turns out his wonderful is not so wonderful. During the night at the hospital he dropped his oxygen levels enough times that the on floor pediatrician requested a pulmonologist see him and determine whether to discharge Tomas or not.

After the pulmonologist rounded on Tomas, he was sent home, but with oxygen for when he is sleeping. As far as the test results from the procedures performed everything came back normal. That is great news and not so great news. I am very relieved that his heart looks strong and the holes are small. The bottom one is even smaller then before so it is trending in the right direction. The stomach scope showed nothing new which is disappointing since I would dearly like an explanation for why his stomach swells up around his g-tube the way it does.

Since the Tuesday release he has had 4 doctors appt's.

He saw speech therapy and has been cleared to start on solid foods! This is fantastic news. He is only allowed 4 tastes per day. It is torture to stop after only 4 spoonfuls but it is so great to watch him get excited about eating. He even opened his mouth for the spoon today. When he can handle those 4 tastes very well I can bump him up to twice a day.

He saw his endocrinologist for a thyroid check up. All is well controlled there. Good news is he managed to stay on his growth curve. That is a huge deal considering all the feeding issues he's had.

He saw cardiology this morning and his heart looks great for a Down's baby. The other positive is that even though he is straining his heart to breath it has not made any effect as of yet on his heart. Very good news indeed.

He saw GI this afternoon, but unfortunately there are no answers yet. His hernias are still causing problems with his feeds. His belly is still swelling around his mic-key button. Right now he is on a continuous feed and is doing well. If that should change the next step is to bypass his stomach altogether and feed directly into his intestinal track through a G-J tube. If that should fail than he is looking at the surgery to repair his hernias sooner rather than later. Everyone involved would like him to be as big as possible before going that route.

Because he was sent home with oxygen he now has to add a pulmonologist to his regimen. The one who saw him at the hospital is not on our insurance plan however so now I am in a desperate scramble to find someone who can see him before November (the date the first one I called said was their first available)!! Tomas will also need a sleep study sometime soon.

Which brings me to my next point. We now have TICU (Tomas' ICU) set up in our bedroom. A feeding pump, an oxygen monitor, an oxygen compressor and a transformer unit because the compressor doesn't regulate low enough for the dosage Tomas needs. So he is hooked up to 3 tubes every night and we listen to beeps all night long. It is going to take some getting used to. Mike has been great in trying to let me get some sleep but it is just too hard right now. I worry whether the cannula is hooked into his nose or around his neck!

Weeks like this just wear me out physically. I am so tired from running around and lack of sleep. For the first time today I screwed up one of his appointments. I had made an appt. with early intervention at the same time as his cardiology appt. They came out to the house while I was gone. Mike was here with the girls and called me at the doctors. I was so upset with myself and apologized profusely. Mike said they were very understanding but I still feel terrible mostly because I don't like to make mistakes (and then have to admit them!)

Thankfully, we have only one appt. next week. Tomorrow is Mike's 40th birthday and our pool is almost finished. They are adding the water tomorrow, then hooking up the equipment next week. I will try to get some pictures soon.

Love,
Dorothy

7/14/09

My family has been so blessed by this baby. I like to joke and say that we sin a whole lot less than we used to. Our sense of compassion and mercy has been so magnified by having Tomas here. We are often surrounded by really sick kids and really strong families and I think my girls are so lucky that they get to see and live the glory that can come from self-sacrifice. A few mornings ago Victoria asked if we could have another baby, and another and another. I asked if it would be ok if we had another baby with Down Syndrome. She said "sure". I was just amazed. After everything that has changed in her life, everything that she has given up, all the hours and hours and hours in the car, at doctor's offices, and at hospitals that she would be willing to do it again just blew me away. This is why God calls us to be like little children. She did not see what she was missing out on. She was enjoying her smiling, laughing, playful baby brother and wanted it to last forever.

7/9/09

Tomas had a CT of his abdomen yesterday and didn't quite recover enough from the IV sedative to ge to go home afterward. So we stayed at the hospial last night.
He spent the night pretty well. His oxygen saturation dropped a few times, he needed oxygen at first but was taken off around 2am, after that he recovered on his own. The CT scan yesterday showed 3 things that need to be addressed. 1. Atelectasis - his lungs do not inflate properly or move air as well as they should. It causes some secretion buildup. He needed to be suctioned once last night. I am supposed to pat on his back to keep things from settling. It should go away as he gets older. 2. Urine distention of the bladder. This combined with the hydronephrosis from the other day is probably very indicative a a problem and will need to be addressed when he sees urology on the 15th. 3. The biggie: Morgagni hernia. A diaphragmatic hernia on the right side. His liver has pushed up into his chest cavity. It only accounts for 2% of diaphragm hernias (anyone surprised?) This one usually needs to be fixed. The combination of the reduced lung function, the hiatal hernia and the morgagni hernia are most likely contributing to his difficulty breathing. I am waiting to see whether surgery wants more tests before they discharge him. I'll let you all know. Dorothy Update: One of the senior surgeons does not feel that the morgangi hernia needs to be repaired any time soon. After reviewing the films from the CT scan he found (and these are his words) "Something bizarre" concerning the g-tube. It passes into the stomach, out of the stomach, and back into the stomach. He has never heard of it before and could not find a case study on it. My son - the trailblazer!!! He feels that is the main contributor to the abdominal swelling (and hence trouble breathing). His plan is to confirm what he saw with an endoscopy and then somehow repair it. It is a much less invasive plan than repairing the hernias so of course we are going to give that a try first. Update 2: We're home. The endoscopy is on July 20th.

6/28/09

When we arrived in TX and started with the new GI (stomach doctor) I told him about Tomas's painful feeding episodes. He ordered a fluoroscopy and it showed a significant sliding hiatal hernia. He would scream in pain for 45 minutes. It was awful to say the least. Then the doctor ordered him back onto a continuous drip and changed his formula to Nutramigen. I didn't like the continuous because it doesn't give him a chance to vent unless I stop it and vent for him, but I can only tell he needs it if he starts fussing, and by then it can be too late and he is screaming in pain again. So I now give him one ounce every hour with a bolus and vent before every feed during the day. At night he is on the pump but with a vent opening attached so he can push the gas out as needed while he's sleeping. I can't do that during the day because it is rather the homemade thing with medical tape and an open syringe and all sorts of stuff taped to him and the side of his crib. Works great while he's laying still, but that's it. I have been using that pattern since last Friday and he has only had two painful feeds. However, last Tuesday at 4 am (of course - these things never happen at 4 pm!!) he was a little fussy and I got up to look him over really well and noticed that his belly was swollen up around the G-tube. I unhooked his feed and cleaned up the tube area as best as possible and he fell back asleep. At 7 he woke up and the swelling was still there. So I took a shower thinking I would call the doctor afterwards. By the time I was done the swelling was gone. I thought well as long as his daytime feeds go ok I won't bother with it. At 8 I hooked up the extension kit to do the bolus (remember he hadn' had anything since before 4am) and about 25 cc's of clear/bloody liquid came out. I took him into his GI doctor. They did a fluoroscopy and didn't find anything significant. The doctor thinks it might be some irritation of the stomach lining by the balloon and is treating with some medication. By the time he saw the doctor the swelling was gone, but later in the radiology dept. the doctor stopped by and the swelling had started back up again. He was stumped. Thought maybe it might be a weakness in the abdominal wall. Tomas is not bothered by any of this and is still taking his bolus' fine. Next up is an overnight stay at Dallas Children's Hospital on July 20th to place his ear tubes, do an endoscopy of his upper GI and an MRI of his misplaced artery. He will be under general anesthesia so they are keeping him for observation. Now for my miracle. To begin with I have to describe the first GT study that Tomas had. He was laid on a board on the exam table and had his legs strapped down to the board, his abdomen strapped down, and his arms raised up over his head and that whole thing strapped down. Then the board spins so the doctor can get the pictures at the angle he needs. Just think rotisserie chicken. He was terrified and screamed for almost an hour. It was close to the worst I've seen him go through. Flash forward to Tomas and I in the same room as that torture test. I tell the tech that the doctor only ordered x-rays. She says no he wants a full GT. I start trembling inside. I really can't believe he has to go through this again. Immediately I start praying. "Lord, please - rearrange time and space to free your Blessed Mother so she can be here with my son." The tech strapped all of Tomas to the board and he didn't make a sound. he just sucked on his pacifier and looked straight at me. He only made a small fuss for about 10 seconds when his pacifier fell out about halfway through. I've often wondered what it would be like to have faith the size of a mustard seed and to be able to move that mountain. Oh, to be able to live all of my life with the amount of faith I had during that quick prayer! I will update if anything new comes up.

4/21/09

He is doing very well! He has gained a bunch of weight and now is up to 10lbs 4oz. His liver is functioning perfectly and he has been taken off all his liver meds (so much less work for me). He has started to smile (picture Dopey from Snow White - too cute!) The hole in the top of his heart has closed an the bottom one should not ever be a problem for him. The remaining issues are his Transient Leukemia - his hemoglobin is low and bordering on another transfusion - and the vein that is in the wrong place by his heart. The cardiologists would like to do an MRI (which requires anesthesia ), however we are going to wait until we get to Texas. Yes, it's finally happened. We sold our house and are closing on a new one in Melissa, TX (about 1 hour outside Dallas). We are moving on May 6th. Yikes! Tomorrow Tomas has another Hematology appt. and he might have to see a pulmonologist because his breathing has become more labored than normal, and he has had an outbreak of a rash that can mean his leukemia is flaring up, so we shall see... As always I strive to trust in the Lord. The psalm that came to mind the moment I found out the baby had Down Syndrome for sure was "Be still and know that I am God". I focus on that scripture everyday and put everything I have into letting God guide me. Sometimes I buck but to no avail...Oh well , I'll keep you all posted

3/26/09

Just a quick note to say that all is going rather well. Tomas needed another transfusion on Tuesday but even with that he has been doing great. I think he is finally starting to put on some weight and thankfully he only has 2 doctor visits this week. I've actually got a new routine down and we are rolling right along and I don't think get too frazzled (at least not more than with a regular baby). We have started going places again which has made a big difference for everyone. I promise I will get thank you cards out sometime soon. I am so grateful to everyone who has sent their love and prayers our way. I absolutely know that God allows trials and tribulation to come our way so that we can have an opportunity to shine. Just think of all the good and kind things you all have said or done that would have gone unsaid and undone without this baby. I've attached a few pictures. The one in the doggie outfit was from before this last hospital stay and the rest are from just a few days ago. You can really see how much healthier he looks.

3/16/09

3/16/09 Tomas has spent three episode-free nights and gets to go home today. I am slowly stepping down from high alert and beginning to relax a little. His airway still obstructs but much less often and for a much shorter period of time since the reflux is not an issue anymore. He may need more intervention later on but right now the idea is to let him get bigger and stronger and see if he outgrows it. Separately, He can not feed by mouth anymore since he aspirates (swallows into his lungs). He is feeding through the tube that goes directly to his stomach. We will get a pump to run his food through when we leave. In 4-6 months he'll be retested to see if he can swallow properly. We also found out he has mild hearing loss in both ears from liquid buildup in his middle ears, most likely caused by the severe reflux. He will need tubes placed but once his ears drain his hearing should be fine and it should not be an issue again. He has lots of follow ups and needs lots of care but we are all looking forward to some wire free, cuddle filled time at home. I will keep you all updated.

3/12/09

Hi Everyone, Tomas had a really rough night and we almost lost him twice. Let me start at the end and say he is quite stable now and resting well. Now for the scary story. His surgery went very well and he had no issues during surgery or recovery. After he came back to his room he began bleeding through his dressing and was very fussy. Every time he would arch his back or crunch his stomach more blood would ooze out. We finally got him under control by me holding him and putting pressure on his abdomen to stop the bleeding. It only slowed the bleeding but worked for a while. During that time he stopped breathing and turned blue. After I flopped him around a bit and Mike went to get a nurse he came out of it. We settled him into his crib and I began the long night of watching. He seemed ok for a few hours after that, but was still bleeding through his dressing and soaking his blankets. The surgeons came down and re-dressed his wounds several times during the night. He stopped breathing several times but they were all relatively quick until around 4 am. He stopped breathing and his heart rate took a nosedive. Thank God his respiratory therapist was in the room when it happened. Her name is Lauren and she stayed in his room when she walked in and saw that I had the bright lights on and was sitting there staring at him. She didn't like the way he was breathing so she stood by his crib and just watched with me. Please lift her up in your prayers because she saved my son's life. After a few minutes of watching he went into one of his episodes. Before that one I had been able to get him out of them by stimulating him and he would begin breathing again. This time he did not respond, and after several seconds of trying Lauren pulled the code cord and began "bagging" him. The code alarm sent everyone into his room and they worked on him and were able to get him through with just the bag. It is a mask attached to a bag that forces oxygen into his lungs. Think CPR but with oxygen. Finally after that episode the staff started paying attention. They noticed he was very pale and drew labs for his hemoglobin count. All the while he was still bleeding albeit less than for starters. During the attempts at drawing his labs he went into respiratory distress again and needed to be bagged again. Finally the decision was made to move him to ICU. A short while later his labs came back and his hemoglobin showed he was severely anemic. Blood was ordered and about halfway through his transfusion his breathing improved dramatically. Amazing what having blood INSIDE your body can do for you. He was moved to ICU around 8am and will likely remain there for 24-48 hours. Like I said he is completely stable and breathing without a ventilator but he does still have oxygen support. His bleeding stopped completely and he has been asleep all day until around 9pm when he woke up for about 15 minutes and then passed out again. I am sleeping at the Ronald Mcdonald house with the girls tonight so I can get some rest. I can finally relax a little bit knowing he is being constantly monitored. Again and again and again I thank you all for praying for us. Really right now nothing can help us more. We are waiting to see how well he recovers and then he will need to be weaned of the oxygen. After that he can begin feeds through his G tube and we will hope that his reflux is resolved.

3/7/09

As many of you know Tomas is back in the hospital. He had a lab draw and a GI appt. on Tuesday of last week here in Orlando. His labs that morning showed his red blood cell count very low so he needed to have a transfusion which was supposed to happen later that afternoon At his GI appt. in between, the doctor commented on his labored breathing. I told him about these "episodes" he was having and the GI doctor called the oncologist who decided to do the transfusion at Arnold Palmer and observe him for 24 hours. While there overnight he had several more "dying spells" (nice dramatic term - isn't it) and they decided to send him to the critical care unit. After several tests and tortures the medical team has found 4 problems with his breathing. 1. laryngomalacia (a floppy voice box that can collapse onto his trachea). This issue by itself should resolve and is not the main contributor to his not breathing.2. severe reflux - this exacerbates the voice box issue and is the main reason he can't breath. He has a surgery to repair this on Tuesday. It is another stomach surgery and requires about a 1 week stay for recovery. Once the reflux is fixed the voice box should not be an issue.3. He has a blood vessel running behind his esophagus that should be in front. Cardiac still needs to evaluate, and decide what to do (if anything).4. He aspirates (swallows wrong) when he feeds. He doesn't always do it but it would damage his lungs (or kill him) if it were to continue. So because of the aspiration he can not feed orally anymore. We thought we would be able to feed him using the G-tube already in place but because it empties into the stomach and he refluxes it back up causing the voice box to collapse the doctors placed a tube down his nose that goes directly to his small intestines. After the surgery we will be able to use the g-tube for feedings. He can not take food by mouth until he can pass the aspiration test. Once he is discharged he will be tested every 4-6 months. The GI doctors have also said that typically when kids get to solid food (real solids - chewing) they do better so we are hopeful he will not need tube feedings forever. He also has only gained 2 ounces since he was discharged from Winnie Palmer (2 weeks ago). The doctors think it was because he was using so much energy just to breath that he hasn't had a chance to gain any weight. He is on continuous feeds and is sleeping a lot now, probably because he didn't sleep very well before. He is trying to catch up. That's it for now. I do not have access to email very much and rarely get a chance to leave his bedside (for fear he'll stop breathing). He is being monitored but the monitors don't pick up his particular episodes so it really is matter of someone watching him. Mike's aunt is here helping and we will all be staying at the Ronald Mcdonald house next week. I will try my best to update everyone after the surgery.

2/26/09

We have all settled in nicely and are loving on our new little man. He has decided it is much nicer to be held than to stay in those yucky isolettes all day, but that is ok by me. He eats well and sleeps well and is trying really really hard to hold up that big head. He is more awake and more alert every day and we are all enjoying it tremendously. His health has remained somewhat stable. The leukemia has begun to resolve (as promised) but is wreaking havoc as it leaves. His red blood cell count is pretty low and he may need a transfusion on Tuesday if his labs don't come up by then. His infection fighting white blood cell count is still pretty low so we are more or less under house arrest. He also has the liver disease but hopefully we should find out what that is by the end of March. In the meantime he takes medicine around the clock to keep his body flushing the bilirubin. He also needs a thyroid medication and a special vitamin supplement since his liver isn't breaking down fats to be used by his body. It sounds like a lot but I have a pretty good routine going, and Olivia and Victoria are really great helpers. I thank God for all of you and am so grateful for the peace that He has wrapped me in. All of your emails, phone calls, gifts, visits, dinners and cards are really very uplifting. I have even received cards from people we don't know who are praying for this baby. It is truly one of the amazing things that Tomas has brought to our lives - the ability to witness people being so good. What a lesson you all have taught us!

2/16/09

I got the best present ever! Tomas came home Saturday evening. He is doing very well and we are all happily adjusting. I do have to keep him home for the next month because of his increased risk of respiratory infections. It is so nice not to have to drive to Orlando every day, but the nicest part is not having to leave him. I'm loving the sleepless nights. Thank you all so much for your support and prayers. He has a long road ahead with many follow up visits and tests, but he has had such a loving start to life that I have much to be grateful for.

2/11/09

Quick update:Mike and I met with Tomas' GI doctor today and he was able to rule out at least one liver problem (it was a big one that would have required a transplant so we are very relieved) but still needs further testing to find out what is wrong. Tomorrow Tomas will have a liver biopsy and the doctors should have a good idea of what they are dealing with by Friday. Unfortunately, for babies a biopsy means general anesthesia. For Tomas that means being back on the ventilator and oxygen and monitors afterwards for 2 days and being sent back to the critical care section of the NICU. His neonatologist said if all goes well he can come home sometime this weekend.

2/9/09

Tomas didn't get to come home on Saturday. His thyroid panel test came back abnormal and he needed to be seen by another "ologist" (endocrinologist). He also had a liver scan this morning to try to find the reason for his "not your typical baby jaundice" (of course it's not the regular type of jaundice!!). I spent the night last night and was able to stay with him for the entire scan, which lasted 2 1/2 hours. The on call doctor then ordered a follow up abdominal ultrasound to take a closer look at whatever the scan results showed. I don't know what they've found yet, his regular neonatologist is supposed to call me this evening. At this point I don't think he'll be home for at least 2-3 more days, or maybe more. He looks good and is eating great when he is not NPO from all these tests. Some good news is his platelet count has come up quite a bit so we are praying that trend continues. Again, I want to thank you all for praying for us. It always happens that every time I feel overwhelmed (but NEVER hopeless) God places another person in my path who mentions that he/she is praying for Tomas. It is like He is weaving this safety net beneath me and every time I start to fall through a hole one of you steps up to catch me. You really can't know how comforting your messages are.

2/4/09

Just a real quick note. Tomas has been moved "downstream" to pod 6. There are 8 pods (units) in the NICU at Winnie Palmer. The lower the number unit your baby is in the sicker he/she is. He was in pod 2. There is a chance he MIGHT come home on Saturday. Keep your fingers crossed (and keep them working those beads!)

2/3/09

Just and update to let you how things are going. His recovery is going well, although he has had some setbacks along the way. He has been breathing on his own for close to a week now, one of the holes in heart has closed (2 remain), his pic line was removed yesterday and he is feeding reasonably well. His platelet count is dropping but at a much slower pace then before so the hematologist is waiting to see if that works itself out before intervening. The leukemia the doctors found is a transient type associated with Down syndrome and should resolve itself in a few months. However, it puts him at a greater risk (1 in 3) of developing an acute leukemia by the time he's three. Also, he now has some issues with his liver and gall bladder (not sure what yet). It is one of those two steps forward one step back situations. I continue to pray for the ability to find joy in doing God's will and have been blessed to find solace and comfort every time I need it. I started reading a book from Mother Angelica before all this happened (haven't had time to finish it yet) and one line from it keeps repeating in my head. "Faith shows itself in darkness." Not only my faith but the faith of those around me have lit my path and shown me the way. Thank you all so much for praying for us - you can't possibly know how much it means to me. As crazy as it sounds everyone here is holding up well. I will send news and pictures when I get them.

1/27/09

Hi everyone,Just a quick note to let you all know what is going on with Tomas: 1. His recovery from the surgery is going very well. He can eat and digest his food with few problems. He is having other feeding issues which I will get to in a moment. 2. He is still having trouble keeping his platelet count up. The hematologist still thinks it is an antibody induced auto-immune response and that it will resolve itself - anywhere from a few days to 3 months. This would require him to stay in the hospital only if his count remains very low. 3. He was being fed from a bottle and doing very well until Sunday evening when he began to struggle after the first few milliliters. He would stop swallowing and leave the milk in his mouth and start to choke. He is now being fed through the tube that goes directly into his stomach (inserted during his surgery). I'm not sure how long before they try the bottle again. 4. He was off his oxygen monitor until yesterday when again he began to struggle and not breath as well as he had been. He is back on the monitor and he has the nose tube for extra oxygen back. 5. After a blood screening today we were told he has a condition called transient mylo-proliferation. This is a blood disorder in the leukemia family that is strongly associated with babies who have Down's Syndrome and particularly those with the duodenal atresia (intestinal blockage that he needed surgery for). It should resolve itself but will require monitoring to make sure it goes away. Having this transient condition puts him at greater risk for developing acute leukemia later in childhood. If he should develop symptoms of acute leukemia (liver, kidney or heart problems) then he would need a small dose of chemotherapy. 6. He had another echocardiogram on his heart today and I am still waiting to hear the results. We already know he has two small holes in his heart, but last we heard they were tiny enough not to need intervention unless they begin to cause him trouble. 7. He can come home when he can eat well, maintain his oxygen level, and has a reasonable sustained platelet count. I'm attaching some pictures I took today. He looked much better than he did yesterday. The rest of my family is holding up well. The girls are excited when they get to visit him and they got to hold his bottle a few days ago before he was taken off. Mike and I are really learning to take things one day at a time and just waiting to be able to take him home. I am sorry I can not answer all your emails personally, I really do love getting them. Knowing that you are lifting my family up in your prayers makes me grateful that I know each and every one of you.

1/18/09

Hi this is Mike. All went very well today with the surgery. The blockage was a little membrane and not a complete disconnection as first thought. The surgeon was very pleased and finished in under an hour. The recovery should be that much quicker and he is already responding positively to backing off the ventilator. Thank you for the prayers, i am sure they have been helping him. Dorothy is coming along considering the few days post partum. She is discharged tomorrow. Dorothy will be staying close to the hospital for at least the coming week. I will be back and forth since my mother is staying with the girls.

1/17/09

I had the baby last night with an urgent c-section because his heartbeat was slowing down. However, everything went fine and he is in stable condition and breathing on his own. He is having surgery tomorrow morning to repair his stomach. We will not be home for the next few days but will be checking messages. Please try all our phone numbers if you need to get in touch with us.

1/1/09

I had my last appointment with the high risk doctors today and the baby looks great. They have schedule my c-section for Jan. 28, and are waiting to confirm with the surgeon for the operation on the 30th. Some potential good news is that my fluid levels have gone way down which could mean the baby is processing some of the fluid. That would mean that maybe his intestinal blockage is not complete and he would not need the full blown surgery and just some lesser procedure. We will have to wait until he is born and the hospital can do some dye x-rays to be sure, but keep those prayers coming! That's really all for now, just trying to finalize the logistics of where to stay and how long and etc.. I really do love all the phone calls and emails and prayers that everyone keeps sending. YOU ARE NOT BOTHERING ME! and you know who you all are! The girls are fine and we are all in final prep mode. I am finding it incredibly hard not to nest since we are moving in 3 months, so I have to find other ways to entertain myself. p.s. - Mike has finally decided on a name!!!! Tomas Gregorio (Thomas Gregory for all the rest of us). I really like it but of course Victoria has to put her 2 cents in and has decided she is going to call him "Little T" - I don't think so!

12/31/08

I hope you all had a blessed Christmas and are having a great New Year's Eve. We had a lovely Christmas and a very nice visit with our family. Mike's Aunt is still with us which has turned into a great blessing. Yesterday I went in for my standard non-stress test at the hospital (I go every Tues. and Fri.) They monitor the baby's heart rate and movement and also uterine contractions. Well, the baby was fine but I was having contractions every 5-7 min. So they kept me and monitored me until last night, when they gave me a shot of medicine to stop the contractions and sent me home. During the day yesterday in order to check my status the doctor in Melbourne ordered a Biophysical profile on the baby (basically a timed ultrasound were they have to catch the baby doing certain things). He didn't pass his breathing test, so my specialist OB in Orlando ordered another one today at Winnie Palmer. Mike took me and the baby failed the breathing part again. Before you all think it is something horrible, they are practice breathing motions that all babies do to get their lungs ready for birth. We have caught our baby doing it before and all the doctors feel that we are just missing the timing of it during the last two tests. His heart rate is great and his movement is all over the place thanks to the extra room he has from all the fluid I'm carrying. So all in all the doctors are quite pleased with him. I was still contracting all night and day today and they again kept me at the hospital this time in Orlando. They let me go after they checked me and monitored me for a while. They gave me some pills to take to relax my uterus so hopefully that will work. The doctor said it could either be false labor or my body trying really hard to go into labor. So basically, 2 days of contractions 5-7 minutes apart, 2 full days at 2 hospitals, 1 healthy baby and 1 exhausted mommy.

12/15/08

Thank you all for you kind emails and phone calls. We are all doing well, and are spending our time adjusting and re-forming ourselves to suit our new reality. Already there are so many positive things coming about because of this baby that I know God is near and holding us close. I won't say it is painless or easy but His hand is clearly evident. Part of what sustaines me are your prayers and kindness, even the quick little emails make me feel loved and thought of.

12/11/08

I received the results of the amnio today and the baby does have Down's Syndrome. I am disappointed of course but also really ok, and just ready to be this baby's mother whatever that may entail. As far as everything else, it is pretty clear that he will need the intestinal surgery sometime after birth. His heart and other organs all look good so that should be a great benefit when it comes time for the surgery. My fluid levels continue to increase (up to almost 32cm now) but the high risk Dr. said that it shouldn't necessarily make me go early. He said I would just be really uncomfortable and would feel like I was having twins (smile out to you Shannon!). They are going to try to get me as close to full term as possible. Next up is logistical planning for after the birth and just more monitoring. Thank you all for your prayers and please continue to pray that my family stays focused on God's will and that we can bear witness to the good that can come from doing what He asks of us.

12/03/08

Thank you to all of you who are praying for me and my family, and to all of you who have helped or offered help. I hope I can somehow repay you all one day. I will have a lot to pay forward when this is all said and done. I went to the regular OB yesterday and my amniotic fluid has gone up by 2mm to 24.4mm. 25mm is the limit for difficulty breathing (as if breathing is easy when your 8 months pregnant anyway!) and greatly increased risk for pre-term labor. My cervix is still nice and tightly closed though so nothing imminent is coming my way. Mike and I met with the babies surgeon today, and I LOVED him. You know how you can just get a good feeling from someone? Anyway, he said there is still a chance the baby could be fine because the detection rate for the blockage through ultrasound wasn't perfect. They will do an x-ray after birth to confirm and then do surgery if necessary. I am not getting my hopes too high though because I don't think I would have this much fluid if the baby was swallowing normal. If he does need the surgery they do not have to do it right away, they can put him on IV feedings and wait for him to gain some weight (if he is a tiny preemie) or just wait until he recovers somewhat from birth if he goes to almost full term. That made me feel better, not having to hand him off right after birth to the operating table. Expected recovery is 2-3 weeks in the hospital, but if he has Down's it could take longer because they are a little slower (I imagine at everything). The other positive is that this particular surgeon doesn't use an NG tube (nose to stomach) to drain the stomach during recovery, he uses a side port in the abdomen. The great thing about that is the baby doesn't have as much difficulty transitioning to feeding when he's able because his throat isn't raw and sore from the NG tube. You can also use a pacifier to help keep the sucking reflex going while he recovers.So next step for us is the amnio on the 10th to find out if he has Down's.

11/19/08

I went for my follow up ultrasound and the baby does have a condition called duodenal atresia. He will need surgery after he is born. I do have too much amniotic fluid because he can't swallow it and am at risk for early delivery, but have been cleared to go on vacation next week with my family so I am grateful for that. In 3 weeks Mike and I have to go to Orlando to meet with the specialists at Winnie Palmer to go over the surgical and treatment plan. As of today his heart is normal which is a big deal because 50% of kids with the atresia also have heart defects. Right now we are all doing fine and just praying that the road ahead will be as easy for the baby as possible. I'm attaching a link to a website that has the best summary of the condition that I have come across. http://www.ich.ucl.ac.uk/gosh_families/information_sheets/duodenal_atresia/duodenal_atresia_families.htmlThank you all so much for your prayers.

10/28/08

I wanted to let you all know that I went in for my follow up ultrasound on October 22. The white spot on the baby's heart is still there, but that in and of itself is not really indicative of anything. However, the doctor also found what could be a major birth defect called Duodenal Atresia. It is a failure of the stomach to attach itself to the intestines. The doctor is not certain yet if this is the case because there is a small chance he caught the beginning of normal intestinal track movement instead. Both things appear the same on the ultrasound screen and I was at the right time in the development of the baby for it to have been just normal bowel muscle movement. I need to go back on Nov. 19 to see if the condition is still there, if it is then it is the defect (the intestinal tract would have developed by then and not be visible on the ultrasound anymore). If it should turn out to be the defect then the baby will need life saving surgery within 1 day after birth (he would not be able to eat because there would be no place for the stomach contents to empty to), and require a 1-2 month hospital stay afterwards. This particular defect is also a major indicator of Down's Syndrome and should he have it I would have a 50/50 chance of him being a Down's baby. Right now we are just praying for the 19th to come fast so we can get a definite answer. We will cross the next bridge when we get there. Thank you to all of you who are praying for my family and I. It lifts me up and comforts me tremendously.

9/22/08

Just wanted to let you know I had my level 2 ultrasound today and it went pretty well. My blood work came back with a Downs risk of 1:42. The maternal fetal doctor put my risk at 2%. The ultrasound did show a "white spot" on the baby's heart (echogenic foci for you techies) which doubles my risk to 4%. It is not a heart abnormality, it is basically a calcium spot on the left chamber of the heart and most often just fades away. It is considered a soft (or weak) marker for downs, and given that all the baby's other measurements were within normal ranges I'm feeling pretty comfortable with the odds. I need to go back in 4 weeks to see if it is still there. If it is my risk stays at 4%, if it has faded I go down to 1%. That is as good as I'm going to get without an amnio.
He is definitely still a boy and now I have 2 pictures to prove it. Mike is still in sort of a shock that he has finally produced a male heir and so he still hasn't picked a name. I'm not really known for my patience, so he better get crackin'. The baby weighs 11 oz and as far as we can tell right now all is well.

8/15/08

It's a boy!! I had my level 2 ultrasound today and the tech was 100% sure. Even I could tell and usually have no clue what I'm looking at on those screens. But it was definitely "there's the head, there's the belly, and there's the boy part" She even sent me home a picture to show Mike. The girls are very excited and Mike is thrilled although he says he had a feeling all along. Most important though is that so far the Maternal -Fetal Dr. said everything looked good and as soon as I have my quad screen done he'll be able to tell for sure.That's all for now -