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Deja Vu

I am sitting in a hospital room at Children's that looks exactly like the room we were in after Max's heart surgery. So many memories are coming back tonight. Fortunately, no surgery today. Max had several procedures done and we are only here for 1 night.

Max is still on quite a bit of oxygen and the pressure in his lungs has increased lately. After a sleep study, a visit to a pulmonary specialist and 2 months time...we are now being followed by Children's AeroDigestive Program. The program consists of an ENT (Ear, Nose, Throat Doctor), Pulmonary Specialist and a GI Doc. We found out from the sleep study last month that Max has Obstructive Sleep Apnea. So today, my tough little dude had 2 different kinds of brochoscopies (scopes of his lungs), an upper endoscopy, and a test to measure the amount of acid that is coming up during/after feedings. He went under anesthesia, which freaked me out, and did great! The findings...not so great.

This is all preliminary. We get the formal results in 2 weeks once all of the biopsies and blood work are back. Max has small, floppy airways that are swollen. The small floppy part is characteristic of Down Syndrome kids. His collapse when he breathes. There isn't much we can do about this right now. We are going to continue the oxygen and add a couple of medications. The swollen part is concerning because this is most likely due to aspirating. We thought that he was no longer aspirating since we began thickening his formula. We will have a little more info on this once the tissue samples come back. Max also has large tonsils. They will remove his tonsils once he is closer to turning 1. This should create a little more airspace and make breathing easier for him.

On a positive note, Max is such a rockstar developmentally! We now do Occupational Therapy, Physical Therapy and Speech Therapy. Everyone is amazed at how great he is. He has really great muscle tone throughout his body. He loves to hang out on his tummy and is pushing up already. He also gets up on his knees. He can get on both hands and knees for about 1 second. He is getting pretty close to sitting up too! Most babies learn to sit by putting their hands out in front of them. Their ab muscles develop after that. Max has shorter arms, so he needs the ab muscles first. He can sit up by leaning forward on his arms, but he kind of looks like a pretzel.

Maya and Max continue their mutual admiration for each other. He flips over in about a nano second to watch anything that she is doing. She likes to help change diapers and feed him baby food. I keep catching her picking him up by herself. Luckily, she has not dropped him yet.

So we continue moving forward. Hoping that eventually all of this medical stuff will sort itself out and that Max won't have a 5 foot leash attaching him to oxygen forever. The little guy is so happy and tolerant despite the constant poking and prodding. I learn so much from him every day!

Realization...I'm a bad blogger

I often think that I need to update everyone on how Max is doing, but at the end of the day there is play dough to clean up, bottles to wash and a couch that calls my name.

We continue on the two steps forward, one step back path. Max is still on oxygen 24 hours a day. The doctors took him off of the diuretic a month and a half ago and his lungs filled with fluid. They told me to look for puffiness in his face or body. He didn't get puffy, he just wouldn't eat and was really fussy. I took him to the pediatrician and his oxygen levels were in the low 80's. (they should be 95ish) The pediatrician immediately increased the amount of oxygen and sent us for a chest x-ray. Sure enough, he had fluid on his lungs. We started back on the diuretic and have been able to lower the amount of oxygen a small amount. He is currently on the amount that he came home from the surgery on. We were really hoping to have him off of the oxygen at least during the day by now. The Cardiologist was surprised that he still needed the diuretic, but thought that it could be because he was on the ventilator for so long after the surgery.

Max did a 2nd swallow study last week. He has still been choking/barfing during feedings and everyone kept telling me it was acid reflux. I knew it wasn't acid reflux. He never spit up after feedings. He would choke and then throw up during the feeding. Well the good news is that my boy loves barium. He really couldn't get enough of it! The bad news is that the study showed that some of the liquid was going to Max's lungs. This could explain the fluid on his lungs, his continuing oxygen need and the choking/barfing. They immediately thickened the barium with nectar and watched him drink a little more. It weighed the barium down enough that it all went to his stomach. So now we get to add thickener to his bottles. He is still choking/barfing some. I was hoping that the thickener would completely alleviate that. We are going to see a Pulmonologist. I'm not sure what, if any, long lasting effects there are from 4 1/2 months of aspirating, but we'll find out.

On a positive note, Max is doing so well developmentally. He has decided that rolling over isn't so fun anymore. He is sitting up with some assistance. He has great head and neck control. He even sits in his bumbo seat for a few minutes at a time. He is reaching for toys, his sister and my hair on a regular basis! Just this week he has been smiling and laughing a lot. He weighed 10 lbs last week! He is finally fitting in 0-3 month clothes!

So our next steps are an appointment with the Pulmonologist. We aren't scheduled until the end of January, but Mama is trying to get that moved up!!! We continue to see the Cardiologist every few weeks. Tomorrow they will do an EKG and weight check.

Maya is still loving school! She comes home and pretends that she is the teacher and her babies are the students in her class. It's so cute!

My sister was here for Thanksgiving last week and said something that I keep thinking about. She said, "when are you guys going to be able to just have the Down Syndrome to deal with." I'm so looking forward to that! I know that there will be challenging and heartbreaking days, but I honestly already forget that he has Down Syndrome. He's just my amazing boy, Max. I'm just really ready for the medical concerns and uncertainties to be over. With that said, I am so thankful for modern medicine.

Life is Busy, Busy, Busy

It's hard to believe that the surgery was 6 weeks ago today. Max's incision looks fantastic. We don't have to be so careful of how we pick him up now. The Doctor's have begun weaning him off of the oxygen. We turned the amount down yesterday for the 2nd time. Hopefully within a couple of weeks, we will be able to take him off completely! That will be so nice to not have to carry his travel oxygen tank around. I am in serious need of a chiropractor after lugging that around for 3 + months.

His weight is an ongoing struggle. He weighed 8lbs 11oz yesterday. He is gaining at a little slower rate than the doctors would like. With that said, he is following the same curve on the Donw Syndrome growth chart. The little guy is holding steady at 5%! At least he hasn't dipped below 5% at all.

Max's echo looked great last week. His heart is functioning really well. He still has a little fluid on his lungs, so we will continue the lasix for a few more weeks. He will most likely be on the viagra for a few more months.

We have Occupational Therapy once a week. Max is working on holding his head up. He likes to show off and roll over to his tummy while the therapist is here. I got him to laugh last week, but he hasn't again. He has the sweetest grin, but we haven't been able to capture it on camera yet. I'm working on it!

All in all we are all doing good. The Doctor appointments, therapy, and preschool keep us pretty busy. I'm so thankful that I don't have to worry about work right now. I really have no idea where I would fit that in!

Life is Good!

We have adjusted pretty well to being home. The day after we got home was pretty awful. Maya was justifiably needy and Max wouldn't eat. I was so nervous that he would end up back in the hosptial or back on a feeding tube. I called the Doctor and they weren't surprised that he was having a hard first day home. Every day since has been better. Maya and I have had plenty of girl time and Max is eating great.

He is gaining weight slowly, but steadily. Today he weighed in at 8lbs. 4 oz. They think that some of his calories may be going toward healing. He actually rolled over last week! The little guy is only 12 weeks old! He rolls pretty easily to his side and then starts to move his leg until he gets on his tummy.

We go back to the Cardiologist next week for an echo, EKG and chest x-ray. Depending on how everything looks, we will talk about weaning off of some of the medications and oxygen.

We finally started Occupational Therapy last week. We will have weekly in-home visits. Max does have a little bit of low muscle tone in his mouth, so we are working on that. The OT thought that his muscle tone in the rest of his body seemed pretty good.

Steve and I went to The Global Down Syndrome Association's Jet Set Fashion Show Last weekend with Gretchen. It was so much fun! I was completely inspired by the accomplishments of the people there with Down Syndrome. It gave me so much hope for Max!

Home Sweet Home

Max was discharged this afternoon! We got home around 2pm. He is doing so great! We feel like an enormous weight has been lifted off our shoulders. It's so nice to look at him snoozing in his own crib without IV's and all of the monitoring devices he has been hooked up to. As we were leaving the hospital Steve said to Max, "welcome to the first day of the rest of your life." We are so excited to see how this little guy grows and watch his accomplishments now that he is healthy!

We also have good news on the Maya front! She went to the ped today and she said that her case was so mild that she felt like it was overkill for Maya to be in exile. She said to treat the hand-foot-mouth like a cold and don't let Maya touch Max for a week or so.

It's so nice to all be under the same roof tonight!

On a sad note, Aunt Danielle and Cam left today to go back to St. Louis. I really don't know how I would have gotten through the last 2 weeks without Danielle's help.

Feeling so lucky tonight!

Grooundhog Day

I wish I could say we were blogging from the comfort of our home.....but yet again, life throws us a curveball. After a long stay in the CICU, Max was finally released to the Step Down recovery unit on Friday of last week. An up and down weekend led to a discussion about Max possibly having to stay until this Friday. Both Max and mom deemed this decision unacceptable and Brittney worked hard to "negotiate" Max's release. This afternoon at 4PM, Max finally passed all the tests that the doctors wanted to see from him, and agreed that he could be released without a feeding tube, but with oxygen and a few medications......sounds great huh? Then the fun began.....as we were preparing to get Max out of jail, we discovered that Maya has come down with a case of Hand-Foot-Mouth disease! Can you believe that?! After all the stuff going on with Max, now we can't bring him home because he could get infected! The hospital agreed to keep Max one more night, and we believe we have a solution to separate Maya and Max on Tuesday night (and as long as the doctors tell us).

The fun times just keep on rolling in the Phua household. Britt and I have decided that we must have done something really bad to someone and we are getting our payback all at once. By tomorrow evening, Max will at least be home with us....although he (or Maya) may be quarantined apart. It won't the celebration we were hoping for, but it's a start!