Procedure Scheduled

At about noon tomorrow, Monday, Liam will have a cardiac catheterization to take accurate readings of the pressures in his heart, veins, etc. Its about a four hour procedure and he will yet again be under general anesthesia. We signed all the consent forms tonight and while we are scared for him, we are very hopeful that this will result in answers. Just pray it won't take a further toll on his body and recovery.

He has taken a beaten the last few days as the doctor told us tonight so we hope this procedure will be the beginning of the answers and a treatment plan. They can't even find a place to draw blood from anymore. When you see your 10 week old's arm covered in bruises that look like a cigar burn, we appreciate those first sleepless nights of our inconsolable newborn more and more. I wish that was the worst of our issues! Apparently, we hit yet another rare column to mark off with the chylothorax complication. We just want Liam to be healthy again and it looks like it will be a timely process to treat the chylothorax after it is determined why he is leaking this fluid.

Both chest tubes are draining a ton of fluid but most of what is coming out now is what they are putting in. I was amazed at the number of IVs and tubes today, well overwhelmed, and recalled that before last Tuesday, he had had only one infant dose of Tylenol for a slight fever before this began! In other news, his original incision from the open heart surgery is basically healed. Little man continues to fight back to the nurses and doctors, love that he tried to pull out his tubes today.

I held him..

I am going to start this blog with good news. Dr. Maim, who we met when we first arrived, let me hold Liam today, tubes and all. It was a major deal to move him with several doctors there but I held my baby..he was still lying on a foam mattress, so I really held that, but I could kiss his head and talk to him. First time in 4 days. Still feel the weight in my arms an hour later.

Well, the bad news is we still aren't sure what is causing the set back and fluid build up and they think its one of two things. They plan to do another procedure on Monday that will be about 4 hours long, to measure his heart and lung pressures and to truly see how his heart is operating post surgery. It will be catheters through his legs that will take long wires up to his heart and be inserted. Wow science. Basically, when they finished his surgery last week, they left a residual VSD (hole)less than 2mm at the repair patch, which the majority of babies tolerate very well. They typically just close on their own as babies grow but with Liam's set backs, it may need to be fixed if it is showing that this is the issue which is then pushing fluid out into the chest cavity because the right atrium's pressure is too high. There is a chance that he just isn't tolerating it and causing all of this fluid build up in his lungs. If they see this is the cause, they may be able to also fix the repair during this procedure by putting a tiny balloon through the catheter. If they can't do it this way, it will mean another open heart surgery. We are praying for it to be fixed in the catheter procedure so we do not have to traumatize him any further. And his incision has actually healed already, one scar is enough.

In the meantime, he has two chest tubes in now and it is draining a lot of fluid. The left side is a little under 800 ml and the right side is catching up, since it was only put in yesterday morning. He is so tiny, so to think of all that fluid, its unbelievable. They confirmed the fluid coming out is something called chyle, which is lymphatic fluid. Typically, cancer patients have this and cardiac surgery patients. However, his type of repair was not one that would have injured the lymph nodes and the repair was not near the duct that carries chyle so this is really why they are doing the procedure. The team here is unsure of why he would have this fluid, so while they are in there, they will also check the duct that carries it. If it ends up being the duct, this is a long process to treat. We start with his feedings (chyle is the fat fluid your gut makes so food effects the amount of fluid he has). They already started him on prescription formula and once the tubes finish draining, he needs to remain on this for 30 days and then start weaning off it. If the formula doesn't work, there are some medicines but the results are not great, 1 out of 15 it has worked in. The best treatment really is another surgery, similar to a vasectomy, they basically clip that duct off because we don't need the chyle. This is hard to explain so I'm sorry for the confusion. I have a picture the doctor drew but we are limited in scanning!

We hope its one of these two issues because we simply are just waiting for a treatment plan and in the meantime, he is sedated, with tubes coming out of him, and its plain scary. He is stable and that's the best thing but it looks like with either outcome, we will be in ICU for some time. Chyle is very hard to treat and can take weeks to months of treatments if its not repairing of the heart..again. This is heartbreaking for us so we are hoping he does respond well to the plans that come out of Monday's procedure. We will update the blog probably late Monday or on Tuesday, they won't put him under to late afternoon\early evening. We know so many people are praying, please keep my baby in your thoughts. While I am dreading that this might mean several months in the hospital, I just want to take him home healthy.

Patton

We have officially named Liam's bear that we bought from Fort Myer for him when I was pregnant. "Patton" is closely watching over little man and making sure he is cared for. (Liam was born on Veterans Day, also General Patton's bday 11/11). PS Go Army, Beat Navy- hey Oseguedas.. :o)

Just a quick update as I settle in- he did get a chest tube on his left lung today. They think there is around 300 cc's of fluid in there and expect to drain quite a bit for the next few days which will help his breathing and get him off the ventilator. I just said good night to him and there is already close to 200 out of him since late this afternoon- I take this as a good sign. Its hard to see him this way but its the best thing for him. My new mantra.

The doctors also put a catheter on him to really watch his output, he hasn't peed since this morning and as soon as they did, he gave some. Apparently catheters on little boys jump start things..

I have found one doctor who gives it to me real and he told me again tonight, we are not outside the realm of things they have dealt with and he will be home with us when he is ready. He is also a cute doctor, but I swear, its his confidence in little man that I am drawn too. But seriously, this is not about getting him home, its about getting him healthy in his own time. We are taking it hour by hour and as you can read, we are going through a lot of ups and downs. Its taken a toll on us, physically and emotionally, but we have hope and faith.

I am sleeping at the hospital, on the other side of his floor in what they call sleep rooms. Let me say, its more like a sweat room. My thermostat says 78 and I think my hair is curling for the first time since last summer. I feel better and seeing the light at the end of the tunnel. While this is all invasive, if this works and it is determined that the fluid is the cause of his set back, we are doing exactly what needs to be done. We are in the best place possible with an amazing team of nurses and doctors. I cannot wait to see what Liam does in this world, he certainly is my hero now. And I can't wait to introduce him to all of you.

Cardiac ICU

I left the hospital at 1am on Tuesday into Wednesday as Liam was being rocked to sleep after some poor feedings and fussiness. By 4 am, the attending doctor called and told me to come back. Liam had a serious episode and was having trouble breathing- something I had mentioned in an earlier post as a concern. I had had 4 doctors during the day Tuesday to look at him but they weren't concerned. Sigh. He was extremely dehydrated and his entire body inside was just unhappy. I wish it was more concerning earlier so it didn't have to had such a result, but it is what it is.

Its now Thursday morning, 8 days post surgery, and he is in ICU, with a breathing tube breathing for him. It seems that this is being caused by fluid in the lungs that just won't leave and not letting him breathe easily. The next step is going to be inserting chest tubes into the lungs to drain the fluid. He is on IV fluids to hydrate him now. Liam was on an aggressive dose of diuretics this entire time and they have taken a toll. They pulled them back on Monday night and within that day, the fluid came back and he was dehydrating more.

This has been gut wrenching to watch, particularly because we've now been given 2 different discharge days and we are suffering set backs so much later in the game then anticipated. We had just began breathing easier, unlike the little man. Alex even went back home on Monday and to call him at 4am on Wednesday, was extremely tough news to break.

The breathing tube is hard to see but it is nice to see him breathing more evenly and not working so hard. The original concern was that his lung collapsed and thankfully, it hasn't. The chest tubes are going to be equally as difficult but like the original surgery, it is what will fix him and that's all I want, my healthy baby boy. Probably the worst thing is I can't hold him..its been 2 days now and I'm pretty emotional. He is sedated for the most part, stirs occasionally. It looks like Liam will be like this for several days and in my heart of hearts, I hope he realizes that we are right here next to him. For all the parents out there, kiss your babies and hug them tight tonight. Its the one thing I want to do and just can't.

Hope Lives Here

Its been a long day- on the good news front, his lungs are almost clear and he has gone from 3 liters of oxegyn to just 1/4. The hope is to have him off the oxygen by morning if he continues to do well. They have dialed back his diuretics and hopefully, the fluid will continue to drain and no more will build up. He needs to build up his electrodes now that the diuretics have been backed off. Also, Grandma and Grandpa came down from Metuchen to visit, it was a nice dinner break from the cafeteria.

On the concerned front, no eating still. He did 15 ml overnight at each feeding with the nurse but had to do the tube the remainder (85ml/3 hours). When I got here this morning, he was awake and ate for me, two times he had 40 ml by mouth and 45 by tube, but the rest of the day, zip. Doctors think its a matter of time for him to start eating, really when he starts feeling better and more like himself. Ugh.

His breathing\respiratory rate has also increased quite a bit but again, doctors assure me that this is also a result of fluids leaving his body and he is testing his lungs out. Its just hard to see him breath so hard, even in his sleep. They are monitoring this and keeping an eye on him.

Its exactly a week ago Liam and I boarded the helicopter to CHOP and began the journey to a healthy heart. Now, the heart is healthy but so many other things are frightening me. His feeding really concerns me because that was the strongest skill he had developmentally, and I want him to be able to nourish himself. They discussed us maybe going home with feeding tubes. I hope we can avoid that, I truly do. As the motto at CHOP goes, Hope Lives Here.

When we first met the team here, they said the average recovery was 4-7 days post surgery. Tomorrow is 7, so looks like we are going to be here a little bit longer than that. I want him to be healthy before he comes home but I really do miss holding him without wires and cuddling in bed. I think he does too, he is becoming more fussy and I am having a hard time keeping him quiet sometimes. Gloworm is doing a better job keeping him happy right now, as you can see in the picture.

That's all for tonight, need to go get a shower and some sleep. Keep praying for us and we thank you all for the love.

Little man just wouldn't wake up to eat today, I could only get him to eat twice so it is official, he is back on a feeding tube. I thought those days were over from the NICU but he needs food and my big eater will come back. I feel so bad for him, he was eating 25 oz a day and we couldn't get much more than 1 every few hours. I am hoping its temporary and by morning, he will realize food down the nose is not the same as the throat. Mommy and Daddy are sad tonight for our baby but hopeful it won't last long.

Manic Monday

Sleeping on my lap instead of eating..he was exhausted!


Liam had a rough night last night..he wouldn't go to sleep until about 5:30am and was just not eating a thing. He has been gagging, throwing up, etc for the last 16 hours. The doctor seems to think that maybe with the fluid he already has in his lungs, he just can't take more down. We are hoping he will go back to the eating champ he is soon, but until then, eat enough to stay hydrated and not lose too much weight. I think we are going to use some medication for reflux now and it will help in the meantime. If he can't, the feeding tube might come into play and I just don't want to do that. It would be like when he was born again and he hated it then.

Despite this set back, his xrays look a ton better and it looks like we will be here a few more days. He is on IV diuretics which are very strong and will be weaned over to oral diuretics so we can give them to him when we are discharged. Once the fluid is out, the doctor feels everything else will come together and we won't be far from home. She doesn't want to send us home until the lungs are clear, and frankly, I'm not leaving until then either.

They also did an echo-cardiogram this morning and the surgeon had mentioned originally a small leak around the patch on his pulmonary valve- very typical in this type of open heart surgery. They saw it again today and while they think it will be tolerable and heal itself, if it doesn't, we may need to do a procedure in 2 months. Its catheter, through the leg, and it basically sends a balloon up to the valve to help open it more. Its a small chance, so we are hoping it will not be needed. If it is, we will head back to CHOP for the procedure because it means another 1-2 days in the hospital.

Lastly, because of all the diuretics and trying to take the fluid out, his electrolytes are really low. I offered Gatorade but apparently, that won't do the trick. They gave him some fluids for the low electrolytes and hopefully, tomorrow, they will come back up. He is definitely drained today, very sleep and hard to wake up.

Thankfully it will be a few more days of this and then we will see the finish line. Taking him home and getting settled in sounds like an amazing dream, I can't wait to see him healthy again.

The picture above is all the thank yous from the kids who have been to CHOP's cardiac center for surgery, transplants, etc. Once Liam gets a little bigger, we will have to work on his masterpiece too. It gives a lot of hope to see so many kids pieces of art, I tend to stand there and read them when he is sleeping and I take a little walk on the floor. Inspiring.

We are seeing decreases in his fluids which means the lungs are getting clearer and he is getting healthier. The doctor came by around 4pm and said she thinks as the fluids come out, we can turn down the oxygen and by the time he leaves, we may not need a lot of medicines to take home. They have upped his diuretics and it seems to really be working well. The goal is to have him outputting in his diaper more fluid than he takes in and we might be there today.

If all continues well, it could be by the middle of the week they send us back home to recover. We have our fingers crossed he will keep feeling better! He has been cooing, even smiling today, which has been great to see his personality again after the last few days of being pretty out of it. The doctor said the Down Syndrome may play a role in the time it has taken for the meds to really get working but we are just thankful they are working now!

Alex is trying to get Liam to fall asleep now..its like being at home, he just wants to play!

Crisis Diverted

The surgeon, whose name is Liam Ryan (Liam and my brothers name, good sign!) decided against doing a chest tube after looking at his x-rays. Thank goodness, I really didn't want to see him go under again and have all that pain. So they are continuing his diuretics and they allowed us to feed him about an hour ago. He ate 2 oz in 5 minutes and seemed perturbed he didn't get more, but he was breathing heavily and we don't want to overwork him while he is still having trouble with his lungs.

I just sent Alex back to our room at the Ronald McDonald house to get some sleep and then I'll go later. We both are walking zombies right about now. I'm just impressed we take regular showers even if we don't sleep!

My parents got down here this morning with chocolate chip cookies for the nurses, nothing like good bribery. Aunt Mary came last night and so did Aunt Maureen, Uncle Tim and future wife Morghan. Brian W. came over and took Alex out for a few hours last night which he definitely needed. Hope to do the same tonight when my sister gets here this afternoon. The goal is to have one parent with him and let the other sleep and eat!

Updates

We have had a couple of ups and downs the last 24 hours. Initially, yesterday morning he looked good and they told us we would be discharged on Monday. At the time, two things concerned him- fluid on the lungs and low blood platelets, both common after OHS. His diuretics were increased to help him pee out the fluid during the day. Liam's breathing was a little shallow because of the fluid but stable./

Then Liam's shallow breathing became worse and eventually at midnight, chest x rays were done, increased diuretics and an additional type of them, and no more bottle feeding enforced. We are still waiting on word of what the next step will be but unfortunately, its a possibility of getting a chest tube surgically put in to get the fluid out of his lungs. His xray this morning seems to have gotten better but the decision is up to the surgical team and not the attending physicians. They will be doing rounds soon and hopefully once that is over, we will know more for his treatment.

For now, Liam is sleeping, a little fussy probably because I'm sure he'd like to eat and he is due for more pain meds as well. We are just anxiously awaiting for the game plan. Let's hope he starts going to the bathroom more so he can breath better, its tough watching him to struggle. Something that we take for granted, breathing in air.

Post Op Pictures

Post Op so far

Since coming out of surgery yesterday, Liam has been amazing with his recovery. We actually left after we first saw him to get lunch late yesterday. Mostly because he was completely out and still under, but he was moaning this awful sound. I couldn't handle seeing him in pain and not allowed to touch him, even to soothe him. Also, we couldn't talk because if he heard us and wanted us, he may have gotten upset because we just simply couldn't hold him. My parents, Alex's dad and Alex and I ended up grabbing a bite to eat across the street. Then Joe went home and my parents and Alex and I headed over to check into the Ronald McDonald house. Its truly an amazing place and I can't say enough about them.

We left for only about 2 hours and when we were back, nothing had changed. We stayed until about 10pm just sitting by his bedside reading, going out to the waiting area to call family, etc. The last 2 hours before leaving was tough because they had a drop in his blood pressure. Now, the interesting thing is that all of his pre-surgery vitals were never healthy vitals, so the blood pressure change could have just been what his true BP would sit at. The doctors said that sometimes BP will drop when they are sedated too much so they actually turned off the sedation completely. The nurses kept telling us to leave and get some sleep because he wouldn't be out of it until tomorrow, Thursday and he would need us then and it would be a rough few days. So we decided to leave, grabbed a bite to eat at the RMH and went to sleep. We literally just passed out.

I woke up early today to head over to pump and see Liam. So overnight, he surprised everyone at CICU. First, he woke up 10 minutes after we left demanding food. Most kids don't eat that soon but he is our chunky monkey. And then, I guess he fell back asleep but at some point, woke up fussing. When we got in, all of the toys we had packed in a bookbag were strewn all over his crib. They were trying to entertain him and calm him down. He apparently was not entertained so decided to instead pull out the art line. Whats that? Oh, the wire directly inserted into an artery. Thats my boy...

He ended up eating right before I got there so he was fast asleep. The doctor came over to me right away and said she had news, so of course, I'm having a slight freak out internally. Turns out, he did so well, they were removing all the tubes, including the chest tube that drains the blood. Then they were kicking him out, no more ICU. Most kids tend to go to the step down 2-3 days after surgery and they moved him at 10am, 20 hours after it. Pretty amazing, I am still in shock as I write this 6 hours later.

We were moved down the hall and now have a new nurse, who watches 2 kids instead of 1 on 1. The real difference is in ICU, the nurse is bedside while ours is moving around doing stuff. He only gets vitals every 4 hours rather than every 1 hour. Liam's heart rate and sat levels are constantly monitored though.

He woke up around noon and ate a little bit from us. It was nice to feed him, and really, just touch him. It was only holding his head up a little bit but its something. He was staring so intently at Alex while I fed him, I think he is trying to figure out what is going on. Liam must be so confused and probably pissed at us! He hasn't eaten very much, but he is eating which is great.

Alex's parents arrived around 2:30 to check in and say hi. The three of them are downstairs having lunch and I'm waiting for Alex to head back up so I can go eat. Its amazing how hungry you can be after feeling the relief that your little guy will be ok. Liam is sleeping, mostly quiet with a few sighs and grunts here and there. Strong kid, must come from good stock.

Well, March 5th is no longer the date.

A lot has happened in 48 hours- we went to the pediatrician on Tuesday to get his RSV shot. While we were there, Liam's color looked off and they could not get a good pulse ox reading. Our pediatrician called CHOP and it was determined that we needed to get admitted to the nearest ER and get transported to Philly to be monitored. It was everyone's opinions that the change of color was spells, which could result in a number of issues including death. This began at noon on Tuesday.

Alex left work and met me at the ER. I ran home, packed bags and we had a friend come get the dogs over to PetSmart. Our neighbors came and got Alex's car from the hospital so we didn't have to leave it there. About 7pm, still in the ER, CHOP called and said they were going to take Liam by helicopter. I was a little concerned but at this point, I had the worst scenarios running through my head and didn't know what to do, but I said I wouldn't leave his side. Alex jumped on the road up to Philly so he could meet us there. My parents already had arrived and were waiting for us.

The helicopter came to our local ER around 10pm. They took vitals and packed us up. Liam was not happy, wanted to eat so we fed him a little before getting on board and they gave him something to calm him down. As soon as we got near the "hot" chopper, he shut up and was wide eyed staring at it and the noise it made. We took off and he stayed awake the entire ride, which the flight crew told me was a first. He just started at all the equipment while I held onto his teddy bear. Check out helpicopter from my bucket list- wish it was different circumstances.

We made it up to CHOP in an hour and were immediately brought to the cardiac ICU, CICU. We met the head of CICU, they did some evaluations and got him on monitors immediately. They then called our surgeon and cardiologist here at CHOP. The team decided to get Liam on the surgeons schedule later that morning. So, we really did not want to go through an emergency situation but so thankful that we were in the right place with the surgeon we chose.

I stayed with him while Alex slept in a parent room for a few hours and then we switched off for a little bit. My parents went back to the hotel to try to get some rest too. At about 6am, the surgical teams arrived and we learned he would be second of 5 surgeries by Dr. Spray that day. Talk about a busy calendar for one man..jeesh. We were able to feed him at 8am for the last time, breastmilk only because its considered a clear liquid. By the time the anesthesia team came to his room, he was starving and a little peeved at 10:30.

My parents, Alex and I walked him down to the OR and as my dad put it, its like walking the gauntlet. I held him in my arms the entire way and tried to keep him calm. Its the hardest thing imaginable to hand your son over to have him operated on, much less have his chest cracked open and his heart taken out of his body. I tried to hold it together but when he started screaming when they took him, I had to cry. It didn't last long but watching him leave was hard.

As the team began prepping him for surgery, we were led upstairs to meet with the surgeon, Dr. Spray, who we now refer to as God. It was a quick meeting, he told us it would be about 3 hours at the least, reassured us on the repair, etc. I just wanted Liam to be done so we said what I imagine is normal, thank you and take care of him. Of course, my mom says, by the way, he is my only grandchild...Oh my. This was about noon at this point.

We were led back to a waiting area and Alex's dad had arrived. The 5 of us sat trying to just make small conversation. Our nurse was going to check in at 1pm with an update on his status. At 12:45pm, she came in out of breath and said they already finished the repair and they had moved unbelievably fast. It was surprising and great news- the less time on a bypass machine means less potential developmental issues. At this point, they still had to take him off the heart lung machine, which is the biggest risk of the surgery.

So we were very surprised when she came running in again and said they were done. At 1:20pm. They were able to do the surgery in one hour and twenty minutes, and he was only on the bypass machine for 32 minutes. We were in shock and obviously relieved that his heart was beating on its own again. Dr. Spray was with Liam still and would come visit with us after he felt Liam was stable and safe back in ICU. When he came in, he said it went perfect, no surprises, easy repair for an open heart. So this time, instead of threatening him, Grandma professed her love..How do you thank the man who saves your sons life? A card seems like nothing and gifts seem ridiculous. The gift he has is unbelievable. And the fact he had 3 surgeries to go still, unbelievable.

Alex and I were brought back to see him about 3pm. He looked better than I imagined. He didn't have any breathing tubes in him, he was breathing on his own since surgery and while he had a lot of wires and tubes, he seemed ok. The worst part of it was his moaning, he just sounded so sad and out of it. His eyes were closed and he was just moaning out loud, very hoarse sounding. His complexion, as we joked later was no longer what it was before. Very white, pink pink cheeks, just like Mommy. His sat levels, which were 80's before and on Tuesday, 60-70's, was 100. Just like that. Fixed.

A lot more to come, but my little man is about to wake up for the first time and we are going to feed him for our first time. Its about Thursday at noon. To think this started two days ago, I left the house for a simple shot in sweats and no purse! Amazing.

My little chubby wubby.

An older picture but it definitely shows us how much he has grown and changed since November 11th- and how healthy he is and how much of a fighter!

We had our 2 month vaccines today- he did well but has been a mamma's boy all day. This is my quick break before he gets up again. Poor little man, I feel so bad for him. They jab the needles in there and its a huge shock, he didn't see it coming!

In addition to the vaccines, we did our weight check and he is up to 8lbs, 11 oz! Its so amazing to see him start filling out. He is also about 21 inches and 1/4.

Everything else looked fine but we had problems with the pulse ox machine today. His numbers previously have always been 84+. Last time he was very high (for him) with 88-92. Today, the machine was all over, 70s to low 80s. At one point, it did hit 89 but it was obvious it wasn't staying up there. Its worrisome too because he wasn't blue at all or turning colors with the lower number.

What this means is that if the numbers stay this low, his surgery will be moved up to this month most likely. I had some tears but held them in when the doctor called CHOP and spoke to the surgeon and cardiologist there. To monitor this, for the next week, we are having a home health nurse visit our house daily to check his levels. We have a follow up next Thursday to discuss them and probably conference in CHOP again. The good thing is we have a cardiologist appointment already scheduled for Tuesday so we are hoping he can do another sonogram and see what's going on, if the pulmonary valve has worsened or it was just a bad couple of hours.

I hope for the latter but at the end of the day, the surgery, no matter how scary and awful it will be for Alex and I, or how painful it might be for Liam, will put our minds at ease and provide him with a healthy heart. Looking forward to the day where we don't need to check his coloring and continuously monitor him. I'd like him to be just a regular little boy and play baseball in a few years! Keep us in your prayers, and let's hope he at least maintains his numbers. We want to do a scheduled surgery and not emergency. God bless.

Checking In

Sorry for the lack of posts- we have been enjoying the holidays and now, trying to clean up the holidays. So much harder with little man wanting to be held! We have had a few follow up appointments on other issues that have come up outside of the heart defect and thankfully, all has gone well.

No surgery needed for the undescended ball- God, he is going to hate me when he knows I wrote about this. And it looks like his bellybutton hernia is quite normal and it should close up over the next 3 years. It is unlikely it will need surgery but if it hasn't closed, we will bring him back for a follow up then. Phew- a little less stress. We have gone from one major surgery and two smaller ones, to just the one.

We also met with the Fairfax County Early Intervention Services and did Liam's assessment. Of course, he was awake all afternoon and as soon as I took him out of his car seat and Alex and I walked into the child center, he crashes. Ugh! He needed to be awake so we held him while we were interviewed by the therapists and discussed his daily life, milestones so far, etc. When he began to stir, the occupational therapist spent some time checking his tone, social skills, sucking motion, etc. He ended up being more alert and thank goodness- his assessment went beautifully.

They too agreed like the therapist in the NICU that the only reason he was admitted into the program was based on the Trisomy 21 diagnosis and not his ability. In fact, at 6 weeks old, he was operating at a non DS baby at 2 months. They worked out a milestone plan, taking into account his surgery which will push him back. We will have an occupational therapist come twice a month for now to teach us how to integrate particular routines that will help his development. It turns out his muscle tone is good and not as low as some DS babies and because of his good oral motion, he should develop quite well.

On his plan, they see him keeping up with non DS children at all milestones, which was a relief to us. He is expected to be talking by next fall, taking his first steps by next Christmas. Its funny, he coos quite a bit and is very social they noted. See, all these years of being told I talk too much has paid off- my son inherited it and its going to help him.

We have the 2 month vaccines tomorrow and a weight check for the first time in over 2 weeks. Fingers crossed he did well!